from where I'm sitting...

short update

2006-05-30T10:34:00.000-04:00

It's been a little longer since I posted than I meant for it to be. Oops.

Things are generally going okay, although I've been having a heck of a time with depression lately. I don't know why, but there are times where I feel so overwhelmed with everything I feel I could just die and not even care. That's really not like me. I've mentioned before some of my theories as to why this is happening (ldn having messed up my chemical balance, etc.), so I won't do it again right now. However, I do think the main reason is that occasionally it strikes me that I'm ill with this, and lately has been one of those times.

Another problem I've been having is that I get so aggravated with people! I have generally been a very patient person since my daughter was born...thank goodness for her, because I didn't like being impatient like I was. Now, though, I feel like some people just waste my time and I resent it. I think that is also due to my recent reawareness of my illness. I really don't want to spend time with people I don't like or who are jerks or insensitive. And perhaps that's a good thing anyway. But it does seem to cause me to be much more frustrated than necessary sometimes.

As far as my illness, I have noticed a very significant increase in the weakness in my legs. I'm also starting to fall a lot more again. Which just sucks. And of course, those things are adding to my depression and anxiety as well. I'm so afraid of this illness, to tell you the truth.

One thing I am starting to do is to let people know that I am having trouble with my emotions. It seems I get very depressed, very stressed...very any emotion. I can't seem to control it very well at all. Part of that is actually a part of my illness, and I think part of it is due to me not having as much success with my anti-anxiety and anti-depressant medications. One bad thing about telling people is that occasionally they are very insensitive about it...like pointing out different times I have acted not like myself and then carrying on about it. I KNOW I'm not acting myself...that's why I'm telling them. *sigh*

I will definitely post later today or tomorrow as I have more I'd like to talk about, and expand a little on some of what's going on. However, duty calls!

much better day than expected

2006-05-23T10:38:00.000-04:00

I survived yesterday. In fact, in some ways it was a great day! Most importantly in the scope of life, Lisa got off work a little earlier than normal (okay, a lot earlier for her...it was only a bit after 5:00 hahaha) and we had a very nice evening. We really haven't seen each other lately, and it was nice for us to be able to talk and have a nice dinner together.

I was pretty depressed yesterday, but eventually I got around to golfing. I played at my home course but I didn't know of anyone to golf with because the few people I would have asked had already played, and one was working. Anyway, I finally broke 80! I shot a 78, and I was even after the first nine holes. (I would have been one under, if I hadn't blown a two foot putt because I was so excited...hahaha) I won't bore you with all the details because (A), I'm pretty sure no one wants to hear it, and (B) it's not like I'm going to forget it! Wow...a 78.

I will say that I went out to finish my round and my adrenalin was so high I was booming the ball past the holes. I bogeyed 10 and double bogeyed 11. And of course then I was pretty upset, because I thought I wouldn't even be able to break 80 even after such a good front nine. I know I have to plan on just bogeying at best the last four or five holes because of the fatigue and spasms with my illness get so bad. The neat thing is that Lisa called while I was waiting to hit my second shot on 12 and said she was coming over. She was there by my second shot on 13....so that was really nice. It was really cool to have company, and it was nice to have her there.

I realized yesterday that why the 22nd was that huge to me wouldn't make sense to most people. The chance of playing Crooked Stick was like the best birthday, Christmas present, whatever that I could have ever had. I could live the rest of my life without another gift. So like Bill pointed it, it was sort of like having this great birthday party planned and then nobody showed up. That was a great analogy.

Another good thing is that now that the 22nd has passed I can move on better, I think.

Well, I need to head to the golf course...a couple of gals from my home course asked if I wanted to play with them today, and I'm pretty excited to have company!

it's finally May 22nd

2006-05-22T08:08:00.000-04:00

I'll keep it pretty short...you all have suffered enough! hahaha

After two months of calendar watching for this date, it's now the 22nd. Today is the day I was supposed to be playing Crooked Stick. The dumbest thing is that I kept thinking something would happen and I'd have some great surprise and still get to play there today or something. Or that some great surprise of playing another great course would happen for me today. I don't know why I do that. It's pretty counterproductive for my mental health...but then again, maybe that's how I get managed to get through until today.

You want to hear something even more odd? When I woke up this morning, I was thinking about the first hole there. And then I managed to go through my head to each hole in correct sequence (although I had to go back on one of them) and it's layout. I thought that was pretty amazing since I was there back in September and haven't seen a map of the course since then. As I was lying there, I was thinking about how that's the first time I've done that. Throughout the length of time that I thought I was playing there, I never did it. I just thought of the course as a whole, and of the clubhouse. But it was also odd (well, I guess not really, huh) that it seemed like the thought of the course layout even woke me up.

I have a feeling this is going to be a pretty rough day. But I'll get through it...I've done tougher stuff than this, although right now I don't know what was besides finding out I was ill. That day was worse. Maybe when the calendar changes tomorrow, I'll feel better because it's past.

horrible day

2006-05-21T09:26:00.000-04:00

I don't know where to start. The rain finally let up, thank goodness. I played one day last week and got seriously rained on and then hailed on some. And kept playing. I had to laugh, because as I was trekking across this fairway clutching these two clubs I reminded myself of the priest in Caddyshack! But the sun did come back out fairly quickly after that...LOL. Oh well.

Friday started out awful. I woke up extremely early and was so upset and stressed about so many things that I couldn't get back to sleep. Lisa did help a lot, though, by getting some stuff done for me that I really needed. I worked some, and then immediately had to switch gears to play a nine hold round as the gals got there early. I shot a great round, only three over par on nine holes! I think it was because some of my stress was better and I just was hitting the ball well. It's amazing how some days I have great touch and can tell exactly how hard to hit a pitch shot, etc., and then the next day I can't figure it out for the life of me.

Yesterday was a rollercoaster...mostly going downhill. I woke up early so I could play in the dreadful ladies league at my old club. I got everything done way ahead of time and planned on getting there 45 minutes early. I got dressed last, and noticed that some of the color on this shirt (I had only worn it once) had run. I kept looking and decided because of the pattern it wouldn't be very noticeable. So off I toddled to the golf course. I went in and bought my 25 round pass. While waiting for that to get cleared, this gal walked up to me and asked me to forgive her. She said that she was making out the member list for the little booklets she gave out and just saw (insert Lisa's full name here) and for some reason deleted it from the member rolls that she was given! (emphasis hers) So I said, that's okay, and I felt a little puzzled as Lisa isn't a member so of course the was deleted. I said hi to a few of the gals, then immediately got a cart and loaded up. I was not going to get stuck with the witchy woman from two weeks ago again. I practiced my putting some while I waited for us to start, and then pulled up. Next thing you know, the same woman from before said that she didn't have anyone riding with her, so I should load up my bag onto her cart and park the one I have. Which to be fair, is what we're supposed to do. You double up on carts as it's stupid to have three carts for a foursome. I went from feeling pretty darn good about things (although slightly nervous) to royally pissed. To not be in the same cart or the same foursome with that woman is why I went there so early! So I loaded up and started stretching again. The woman who had apologized to me earlier was also to be in my foursome and I know from experience that this is either a very good or very bad thing. She's very outspoken, so if I'm feeling pretty confident, she's no problem. If I'm feeling at all insecure, she can bug me. But I was more mad getting stuck with my cart partner again than anything else, so I thought it's not a big deal. Then she called me Lisa, another gal corrected her, and she said "I do that all the time!" At this point I realized that perhaps when talking to me she actually meant me, but I decided I wouldn't worry about it. But everyone had their own little booklets but me. (Apparently they were handed out while I was putting.)

Anyway, the day goes on and I'm not playing that well, but I figure under the circumstances it's not that horrible...and better than the last time. This is why one should never take fast acting Xanax. You have deluded sense of not being bothered...and to a large degree you just don't care. I took it on top of my long acting dose while driving there because I suddenly felt very panicky. Anyway, I start noticing that the gal in my cart was cheating on her score again...and keeping her own score, which isn't right. The women in the other cart should be keeping ours and we should be keeping theirs. Her cheating is her problem, not mine, but I really resented her having a two stroke better score than I did on a hole that we played identically. Long run, due to handicaps, she's just hurting herself by making her handicap too low. Anyway, obviously the Xanax was wearing off because now the fact that my cart partner kept calling me either Carol or Lisa, and the apologizing woman kept calling me Lisa, was really getting on my last nerve. This was about the same time that the apologizing woman gave me her booklet to keep when I mentioned I didn't have one when the gals were carrying on about it. I opened it up, and surprise surprise, I wasn't listed. That wouldn't matter, except if anyone wants to play with me for tournaments, they don't have my number to call me. So in fact she deleted Catherine, not Lisa. And she said "I hope you don't mind my name on the cover" and I said "why should I, I've been called every other name today but my own, I might as well be XXXXXX." That was stupid on my part too, as they then called me Connie, Carol, Carolyn, Lisa, Catherine (Catherine always last, which they continually pointed out) the rest of the day. Then the outspoken gal noticed the ink on my shirt had run. So that had to be pointed out too.

We finally got to the 16th hole. My cart partner asked me to run the cart over to hand off a headcover that had been dropped by the group in front of us while she hit her shot. So I did, and it belonged to a woman I knew fairly well. And what was the first thing out of her mouth? "When I saw you in the cart with her, I felt so bad after what happened last time. Are you doing okay?" Odd thing to say, since the only person at the entire course I had mentioned last time to was a friend of mine. So obviously that story had been told over and over again, although I asked the person to keep it in confidence. So my response was "Yes, (local woman) XXXX is still god, I still don't know how to golf, and my home course still sucks." The only good thing about that was that apparently my cart partner overheard, so she was passably pleasant (and screwed up every shot afterward *evil grin*) the rest of the way.

So basically my entire day was spent being told how to play, being called Lisa's name, hearing how important Lisa is and what a great time she was probably having at the track right now, and being teased like I was in middle school or something. *rolling eyes*

After playing the friend I had told in confidence about my experience asked if I wanted to go out for a drink with her and the other gal who had repeated the story. I said no, because I needed to go to work. She seemed incredulous that I'd be working on a Saturday. I work at a golf course, for goodness sakes. When does she think I work? She seemed very adamant to speak to me, but cart woman wasn't going anywhere until she dropped me off at my car and at that point I was grateful.

Yes, I know this has been long. So I'll wrap up my day, as it's fairly easy. I went to the course I work at and they didn't need me. The last thing I needed was not being needed...I already felt that. The beverage cart girl had to leave, but for whatever reason (even though I have a bartender's license and we're about the same age) they didn't need me to do that. I'm not cute enough anymore, I guess, or my hair is too short or something. That was a stupid move, as a dog could sell beer at a golf course on a Saturday. Courtney works there, and showed up a few minutes late which got on my nerve as she's been late every day she's worked there. I sat outside for a bit and realized that this one woman at the other course probably also posted my score, thinking I wouldn't because it was so bad. Because it isn't transmitted for a week, it will screw up my scores because it may get sent for handicaps before I can delete it. Honestly, I was hoping somebody would have something for me to do. I was utterly miserable. They didn't so I went home. I thought about trying to meet up with my friend and the gal who repeated the story to me for a drink, but decided I couldn't deal with that either.

Lisa apparently had a very good time. I had to head to my parents to see my sister for her graduation (another thing, but I won't go there) but by then I was hurting so badly I could hardly see. I came home and put my feet on the heating pad because they hurt so badly. And I was angry and upset and hurt the rest of the night.

Sorry about the length, but I guess it is my blog so I can do that. And I think this is the point where I should mention that a big part of my problem was and is that I started falling down--badly--again yesterday at the golf course. I haven't fallen that often or that easily in a very long time. I'm afraid the good effects I got from ldn might have started to wear off quickly, as I've gotten significantly weaker lately.

I guess I really am good about talking around a particularly bothersome problem, but the stuff I did lay out was extremely upsetting as well.

tired of the rain

2006-05-15T01:26:00.000-04:00

I know I shouldn't complain of rain right now when the Northeast is flooding and Florida is in a drought, but damn am I tired of it! It's been raining since Wednesday afternoon, and I feel like I've been cooped up forever. The first day, even day and a half was okay, as I had a lot to catch up on (including writing here), but it just won't quit! And I really felt like my golf game was coming together, so I definitely didn't want to have to stop playing right now. The weather forecast is calling for rain all through this week as well. Yuck.

Of course I tend to ache a lot when it rains and it's cold like this, so that's not helping either. And today I've been all out of whack because I forgot my morning meds, so I've really been dragging. I sure can tell when I haven't taken my Provigil, that's for sure. By the time I realized for sure I had forgotten them, it was too late in the day to get caught back up. Hopefully I'll at least get that straightened out sometime tomorrow. And I didn't sit under my lamp that helps with the depression nor did I exercise. I really screwed this day up! Although to be honest, as far as exercising, I don't think I can unless I'm up on my meds. There isn't enough energy in me to do it. It's hard enough expending the energy to stay awake and keep walking, to be totally honest. And you know, that probably didn't help my mood today either. It's very wearing.

Unfortunately, Courtney was gone again this year for Mother's Day, which was a little disappointing. I knew she would be, but I guess part of me was hoping she'd come back today from her trip to her dad's/camping. I don't know why I do that, when I know the odds were almost nil on stuff like that. Probably just wishful thinking. Oh well.

There really hasn't been a lot going on with me. I just feel grumpy today. I was so tired today, I wasn't in a very good mood and it seemed like everything was a chore or got on my nerves. I did go and buy a pair of rain pants to golf in, but I still need to get a jacket and it's going to have to at least stop raining for a little bit so the course can dry up some. And I've been worried about Leslie, as her health problems aren't getting better like I was hoping they would by now. So that's really bothering me and is on my mind a lot. I guess it's just not been a great day.

All I can do is get up tomorrow and try to have a better day. I just feel so out of whack. But it will get better, I'm sure.

yep, I'm still here

2006-05-11T15:21:00.000-04:00

I can't express how glad I am to say that the bad effects of the ldn seem to have finally ended. I'm still moving around pretty well, although I find do get tired very easily. As much as it helped my walking, it sure screwed up everything else. Including that I have had to deal with my RSD pain daily since sometime during my treatment with the ldn, and that's something I didn't need on top of everything else.

I hadn't written here for a bit due to having so much going on...and a personal thing I needed to let pass so I wouldn't write about it. That and I just end up so tired at the end of the day, it's hard to feel up to writing.

I won't go into huge detail, but I am finding that lately I've been letting people get under my skin in the worst way. Not that in many cases I wouldn't be annoyed, but it seems I'm really letting them effect me. A quick example was my golf pairing in the tournament last week at my old course. The gal I rode with was really driving me nuts with some stuff (and was cheating on her score), and I really let it get to me. In fact, I had the worst score since the year I started golfing. It was awful. The good thing is that I'm recognizing this is happening not that long after it's over, but it is really upsetting. I know I'm letting it happen, yet I keep doing it. I find myself really annoyed with liars, cheaters, hateful people, people who are lazy, people who act stupid, etc. And I know that means I'm making judgments about people, and that's wrong. (Except for the cheating, because I could SEE that, both on Saturday and on Monday at another event.) I don't know for sure what's going on with me. I guess maybe I'm easily irritated, which is something I thought I had a better handle on.

The biggest problem, I think, is that I'm having a horrible time dealing with things that I perceive to be unfair. I'm sure that my illness plays a huge role in that feeling, but this is ridiculous. Things generally aren't fair. I've always had a problem with that but it seems that now, rather than just get mad and get over it, I just let it fester. I do get mad (to myself), but then I go right back to stewing over it. It's gotten to the point where I often feel frustrated because of it. I have no idea where this whole issue is coming from. I just pray it ends soon. There are times I just feel like I could explode if it all adds up anymore.

One of the best days I've had in forever was this past Sunday. I had gone to work at the course because I hadn't worked on Saturday. The thing that was so great about it was how well I dealt with things. I felt on top of stuff, even though I was massively busy, I got things done, and I even was able to anticipate what needed to be done ahead of time, which really helped. My concentration has been so poor, that was the first time I have been able to do that! We were totally slammed, and for quite awhile there was just three of us working. But I did it! And it felt good that I could see and really feel that I had accomplished something good. I guess it felt great because it felt like it did back when I could work. I actually loved to work, so not being able to has been really hard. So that was a great day!

My golf is coming along. I had a bad week, but things are improving. I did notice, however, that so far I've only played a total of seven rounds all year! I am at the course a lot, and try to practice quite a bit, but I was surprised at how little I've played. I'm going to have to change that around big time if I want to drop my handicap. It looks like it's already starting to lower, but I need to get a lot more rounds in and do it a lot more often. I've made some notes of what I need to work on, but I think that's how I'm going to work it from now on. I'll play, and from that see what needs work. I can spend some time practicing those things the following day, and then play the next day. I realize how tired I'm going to get...and am getting. Late yesterday afternoon I laid down and slept off and on for 12 hours. I guess I'm just going to have to adjust to sleeping a lot more. My body needs a lot more complete rest than I would have thought.

Another thing I wanted to mention is that I've been thinking over whether or not to start a second blog to write about my golf. I've decided against it, because the two overlap each other so much. How well I play, and the reason it is so very important to me that I play, is directly related to my illness. Hell, I don't know that I even can separate them.

If you're wondering, yes, I'm still bummed about turning the organization down regarding playing Crooked Stick. I don't know that I realized how much I was focusing on it. I still look at the calendar each day and immediately count how many days until the 22nd, the day I was to play there. I don't mean to do it, I just had been doing it so long it became a habit. I know I made the right decision, but I sure wish I could play there.

I have a ton more to catch up on, but I'm just too tired to write more today. But yes, I'm still alive and kicking, even if it did take me forever between posts!

busy, busy

2006-04-27T08:46:00.000-04:00

Nope, I didn't disappear. :) I've been trying to stay focused! hahaha!

Yesterday I signed up with the women's league at the course I work at, and at the ladies league at the course I used to be a member at. The courses (and the people) comparatively are like apples and oranges, so it will be good for me to play at both of them. I also have three tournaments so far that I definitely want to sign up for...and can right away. There is always the money issue, but I have been sort of choosing which tournaments are the best fit for me so it's not a waste of time.

I've been working a lot, but I really enjoy it. It's nice being out on the course all the time. And this is certainly as close as I'm ever going to get to owning one. Today there is a golf outing there, so it will keep me pretty busy. I've also played quite a bit too. On Monday I played with Lisa and a fellow I met at the course. I felt I shot a decent score, which ended up being 14 over par. The good thing is that I know that four of my strokes were due to bad choices on my part, so those will be easy to eliminate. I need to learn to make better decisions regarding risk/reward shots. I have a natural tendency to go for the low score, even though there is a lot of risk. I am better about that now, but I need to work on this in particular. That and my putting. As the effects of the ldn wears off, I am back to having jerking in my hands and arms. Since it's not constant, I need to be sure to make those putts that are there when I'm not having it. When I am spasming, it's easy for me to miss a short putt. I can't get even get the putter set on the ground facing where I want. But all in all, I'm improving, and that's what is important. I haven't practiced as much as I need to this week, but there has been so much going on I haven't had as much of a chance.

I also find that I pick up more regarding how to play the more I'm out there. It's hard to explain, but as I walk across greens, drive alongside fairways, etc., it's teaching me to keep an eye out for the entire hole, and for certain specific things. Like target areas, and avoiding certain spots. And that will work no matter what course I'm at. I'm extremely course conscious now. Of course, I also wonder exactly how close I would come to being diagnosed as obsessive compulsive if a psychiatrist saw me out there...LOL. I get teased a lot because I can't stand to have a single piece of trash on the course, but I don't really mind. I'm doing better at when I'm there to play, not practice, I can just ignore a lot of things that need done. Not perfect, but better.

I was alone out on the course working yesterday, as more things needed done at each green. It's been giving me a lot of time to think about my illness. I don't know what's going on with it. I know it's there, but I am amazed at how keeping focused can eliminate a lot of negative thought about it. I'm also pretty shocked at how well I'm doing. (Although the beauty of being so busy and so tired is that it's hard to pay attention to when I can't hardly move.) I've also had a strong sense the last two days that I'm not going to die from this. I know that sounds crazy, but that's how I feel. I don't know if it's a form of denial or what, but there it is.

Meanwhile, back at the ranch, I just called Lisa and asked her to get in touch with the program that fulfills wishes for terminally ill people. My illness being as weird as it is, I can't say with proof positive I'm going to die from it until I'm way too sick to think about playing golf. I have asked her withdraw my request. Of course, part of me is feeling this is so not fair. Especially now that I've called her. hahaha But the gift has some problems to start with. To accept it means to accept me being terminal. And I realize I can't do that.

Now I just have to figure out how to play Crooked Stick. Since it's member-only (but one could bring a guest) this is going to be tough. I'll use the six degrees of separation model. I think I'm three degrees away. I can probably find someone who knows someone who knows a member there, but that sure isn't going to get me on the course. So how on earth do I accomplish this goal? Right now it feels pretty impossible.

By the way, I'm also currently noticing that I'm still overly emotional. Damn ldn! It's not like someone just shot my puppy, but I feel that sad. I just need to focus, like I said before. It will pass.

focus, focus, focus

2006-04-20T23:40:00.000-04:00

I certainly had some interesting comments, and I appreciate you sharing your thoughts with me. I do think I should continue to write. Even if I get upset sometimes about things regarding my blog, I think it's important for me to keep writing it. Thanks for encouraging me!

Kim, you're absolutely right. Due to several things, I have decided I would rather play in the league I used to previously. I think there at least I know what I'm dealing with. As you know, with a disability sometimes adding any additional stress can throw everything off. And I'm just going to stay completely focused on my game there. I've tried to make friends there, but I haven't been all that successful with it. But I can still get my game going.

Lisa, unfortunately I have to disagree with you. To a point, you are absolutely correct. I am still Catherine, and I know who that is. You and other people I am close to can see past my illness. But in many cases, that's just not so. My illness is used to describe me, for example. I'm not "the girl wearing the green shirt--what's her name", I'm described as "the girl with the limp". And for a lot of people who don't know me very well, it's the easiest way to label me. It's easier than having to learn my name or who I am. Maybe I'm just defensive, but I do feel I'm treated differently now. Not because of me, but because of my illness. Granted, some of that is great because for example people are more apt to open doors for me or help me out because they see I need help. When I was well, that generally wouldn't be the case. But people do react very differently to me. Very, very much so on my bad days. Why else would I push this hard to seem well? It doesn't exactly help me because at the end of the day I'm exhausted from hiding it.

Anyway, on to other things. I think there is some residual bonus to the ldn. I know I can push myself to extremes, but I think there is still some benefit going on from having been on the ldn. I'm still moving better, although I'm exhausted much more than I was while I was taking it. I don't know if all this is happening because I was able to build muscle mass during that time or what. But I am still moving much better than before the ldn...although I feel it going away. There is also a downside from the ldn. I think it messed my anxiety and depression up quite a bit, and that's still not gone. The crying is bizarre. My theory is that the ldn boosted my endorphins, so my body didn't make as much on it's own. Now my body is having to relearn how to create the endorphins. Who knows...certainly I can't find out as no one even knows how or why it might work. Long term, though, I am so glad I'm off of it. I believe it's a toxin and I shudder to think what would have happened if I stayed on it any longer. At the accelerated rate I was having problems with anxiety, depression, and rages, I am concerned where that would have taken me.

Today I went to the dentist. That was absolutely no fun. I won't go into great detail, as I know certain people are squeamish about medical stuff. (See, I can be nice! LOL) Anyway, I was there quite a long time...three hours to be exact. But they did a hell of a job. The upper left where they did some restoration work looks really good. I also had a deep cleaning done today. I go back next week and they're going to work on the upper right, and I will get fitted for a partial that I really have needed forever. They'll also do the polishing on that visit. Of course, it's still going to cost me a bit, because Medicaid doesn't give you much money for dental care per year. Nor do they pay for much of anything. For example, they will pay for an extraction, but not a crowning, which is really what I need, so instead I'm going to get a partial. So we're just planning on me coming back in January to get the work done on the bottom. Ridiculous, eh?

Of course, like most things I do, there was a problem. He had to work right around the nerve, so they had injected me a third time to numb me. (By the way, even that's not enough numbness.) But that one numbed right up through my cheek and into my left eye. It's still fairly numb around my eye and the top of my cheekbone, but it's very painful below that area because of the work he did. And I can't completely move the left side of my mouth. So happy, happy, joy, joy. The good thing is that Lisa went and got me biscuits and gravy. I needed something soft, and that sounded good. I had been hungry, but I was still a little too tender (and numb) to eat much today.

The other thing is that I feel I need to completely focus on my golf game. Period. I feel like things are unraveling and that is the only thing I can control. (Maybe that's why I like it? Hmm.) Of course, my golf game the other day was completely unraveled too, but I think it was due to a bunch of worries I had on my mind. So I'm going to buckle down and focus, and quit worrying about the other stuff. I can use this blog to write those things out at night before I go to bed. I'm going to set a nice routine, and stick to it as best as possible. Get up and get my body start moving, get phone calls done, touch base with the group, then do my stretches. Then off to the course. I'll do what work needs to be done there, and then I'm going to practice. (Although I need to write out a better practice routine.) Then I can come home, spend a little time with the group, and rest and spend some time with Lisa (and hopefully Courtney will be home occasionally) and any friends that we might visit with. Then write my blog and get to bed. I need to stick to that, and not mess around worrying about stupid stuff. When it's bad weather, I'll practice my putting and chipping at home and use those days to rest and recuperate and get other things done. I've got the schedule of the state amateur tournaments for the year, and I can use those to schedule my ramp up time. Now all I need is for my body to cooperate. But it will if I have anything to say about it. If I fall, I'll get up and not invest my energy into worrying about it. And I'll do that until I absolutely can't do it any more. If I get exhausted and can't keep my normal schedule, I'll stop for a day and start over again. I just have to BELIEVE enough in myself. And I'll work on that too.

Speaking of schedules, I best get to bed as I have an appointment in the morning with my therapist. Hopefully that will help too. I'll get to where I need to be emotionally. I think that's the thing I'm working for the most. Even the golf is involved in that...in fact, I think it has a lot to do with it. I need to prove to myself some things.

Again, thanks for the comments. I appreciate getting them! Makes this a lot less lonely. ;)

clueless

2006-04-17T01:16:00.000-04:00

Before anything else, in case she's reading this or does in the future, Happy Birthday Leslie!

I haven't written for several days because I've been trying to decide what to do about this blog. Last week, I had a day in which several people asked quite directly what's wrong with me. Not the type of question where you can avoid it, but more like "what illness do you have?" type of question. So I answered. And after that happened twice, if anyone asked me at all about my illness, I just went ahead and told them. Usually if I'm out, especially at the golf course, someone will ask what happened to my leg (they assume I'm limping on one leg rather than two, I suppose). Normally, I say something along the lines of "oh, well, I have some leg problems". They don't want or need more of an answer than that. But after it kept coming up, I just kept answering very directly. And I ended up horribly depressed at the end of the day.

By the next day, I realized I wished that NOBODY knew what was wrong with me. It seems that in so many ways I end up being defined by my illness rather than by who I am. And I have enough of that because of being disabled anyway. I am often defined by who my partner is. I guess I get tired of being something other than ME. Just plain old Catherine.

That's where my dilemma is. As long as I keep writing this blog, it makes it easier and easier for people to see me as my illness. I have toyed with the idea of keeping the blog and not writing about my illness. I've thought of stopping the blog completely. And I have thought of starting another one: one in which I would never mention being ill at all. Of course, I see the problems in doing that, because it is a part of me and informs the decisions I make. And if I stop writing here, am I being a chicken? I honestly don't have the first clue what to do.

I want to run away and hide (and I don't mean from my blog). Yet on the other hand I want to just keep barreling on in spite of, or perhaps to spite, others. I feel overwhelmed with it all. No, actually I feel vulnerable.

For example, I really want to play in two women's leagues this year. But I can't decide which one besides the one at the course I work at. I want to compete, and that's hard to do at my course. Not that I can't, but I want to have a league in which I have fun (this one) and a league in which I can really be out to win. The thing of it is, I don't feel very well liked at the one league I have played at before. But the other league I'm considering, I don't expect that to be any better. I wish I could say it doesn't matter what anyone else thinks, but it does. After this many years, you would think I would be used to some people being uncomfortable because I'm gay or because I'm competitive. Or both. (Or maybe I'm just a bitch? I'm not ruling that out. hahaha) And I guess I am used to it, but I'm tired of dealing with it. It's lonely, really. I don't mean that so much as a complaint but as a statement of how I feel.

And although it is very cathartic to write this all out here, that's pretty lonely too. And sometimes I think I want to start over somewhere...to be anonymous. Yet it's not like I can hide myself either. Crap, I don't know what I want. But I sure hate feeling this vulnerable, which is really the entire problem. I wish I knew how to stop feeling that way.

I wish I knew the right thing to do. I only have a few real friends and family I can talk to about all of this. But then it's telling them I'm vulnerable. AS IF I DIDN'T JUST DO IT HERE. Hell, maybe I need to just shut up and deal. But I've been doing that for a long time too, and it's not working so hot. I sure wish somebody would give me some suggestions I can work with.

ramblin' ma'am

2006-04-11T21:32:00.000-04:00

There is so many thoughts on my mind, I don't really know where to start.

Today I talked with my therapist, and I'm kind of glad I did. It was only a 30 minute appointment, which makes you feel a bit like you've left things hanging, but I think I needed to see her more than I realized. One thing we talked about is that it has been expressed to me that I'm "killing myself" or that "I'm letting myself die" by not taking the ldn anymore. We are going to talk more about it next week, but it's scary that it's perceived that way. I just cannot handle the side effects, and it feels dangerous to be on it. We also talked about different ways I can try and take it to perhaps not have as much problems. Of course, she can't give me medical advice, but it was interesting that she mentioned that. It's probably because in some ways it feels like the ldn was a last hope. I have already made some changes to try and help. I have completely eliminated aspartame from my diet (which after the wicked headache went away, has been fine) and been taking fish oil supplements. I am also very seriously considering looking into a B12/vitamin cocktail that could be injected in hopes of helping my immune system that way.

I really have noticed that my body is just completely running down. I was talking to Lisa over the weekend about it, and discussed it with Bill briefly today. I guess I don't see any reason to conserve the energy I have. Before, I had been very careful to not run myself down too far. Well, it's golf season and this is what I've been pushing for and waiting for...and it seems like I have waited forever. I know I'm working too hard, pushing beyond my physical limits, but I think this is what I want and need to do. I do whatever work I can at the course, because I feel that is only fair given the opportunity they're giving me. And then I work on my game. I work on it in the middle of work, after I'm done, basically at any free moment I can. Honestly, if I could physically do it I would get there at 8:00 in the morning and leave at 8:00 in the evening. There is so much to learn in golf...in fact, I don't think you could ever stop perfecting your game. And I have a long way to go to get to my goal of a single digit handicap and playing in some tournaments competitively this year. But I need this, I think. As I told Lisa on Sunday...if I am going to get trapped in my head, I want to have great memories of this summer and that I tried as hard as I could...that I put everything into reaching my goals.

Back to getting run down. What I have been noticing is that when one part of my body starts to get weak, the rest of it does too. All the way to my voice becoming weak and hard to hear. In fact, from the late afternoons on the last few days apparently I'm very hard to hear when I speak. The frustrating thing is that I can't yell to make myself louder...in fact, I feel I have to push my voice. I talked to my therapist about it, and she said that the diaphragm, being a muscle, is getting weak as well which is why the voice sounds so weak. So now if I overwork my arms, my legs start to weaken, etc. But I'm trying to keep barreling through this.

Lisa is away for a work thing this week. At first I was worried about it, and one thing I was concerned about is the animals as it is hard for me to be as active with them as I think they need. And what about taking care of me? But over the last few days, it's almost been a relief. I don't have to try and seem well or even partly well. And if I stay at the golf course too long, I don't have to worry about "being there", so to speak. I can come home and just be vegetative even. The only hard part has been eating. My appetite comes and goes, and I can't seem to get myself fed properly. I have eaten some strange meals already...hahaha. I don't mean that I'd rather she wasn't here, I guess I mean it's a little break for me too. I can be sick and exhausted and that's okay...no one can see it.

I also realize that it's sort of a selfish thing too. I don't like anyone seeing me weak. I know that in some ways I've pulled away from other people too. I certainly know that some people have with me. But now I'm starting to think I'm detaching from some people as well. I can't stand watching them watch me, so to speak. The last two days I've golfed a bit with someone who medically understands what's going on with me. And it was hell at times because I can see the worry, but more bothersome is seeing the doubtfulness of my ability to keep going. Maybe that's it moreso with people. I can't stand it that it seems that people are waiting for me to fall down or something. And I know that the staff at the golf course keep giving me easy stuff to do because they don't think I can do stuff. I appreciate all of that, but I want to be treated like everyone else...normal.

I guess that's the biggest problem. There isn't any way for myself or anyone else to not see the disability as being a major part of me. Not all of me, by any means, but certainly a pervasive part. And I hate it so much.

I realize how fortunate I am. Leslie is playing around with ldn dosages, and I know that part of that is to try and figure out how to treat me. And I truly believe her when she says she would do anything to make me well. Hell, she's doing it now. And I bet I now have the most comprehensive list of stem cell information of anyone due to all her research on it. I've got Bill who watches out for me and worries over me. I have a bunch of friends online in my group...Kim, Cindy, Chris, etc., whom I know truly care how I'm doing. Courtney and Lisa...it goes without saying. I am very lucky! But it just dawned on me that one thing that is upsetting me is that I am fearful that I'm not giving as much as I'm getting. I think that particularly with Les and Bill.

Crap. The whole thing really is that I don't want to be sick. I don't want to be disabled. I just want to be normal...and that can't happen at this point. It's hard to adjust to, and I really don't want to because that means accepting this. And that won't work right now.

ldn -- a very bad idea

2006-04-06T16:51:00.000-04:00

I've been putting off writing this post, although I'm not exactly sure why. After being off the ldn for a week, I came to the conclusion that I am not going to restart the medication.

On one hand, it did seem to be helping my energy and my ability to get around. But the side effects were so horrific (yes, that word still fits) that I can't bear to go through them again. I ended up writing out the chronology of things regarding me taking ldn...I'll copy it here and perhaps that will help you understand why I decided to stop.

Week 1
Sense of euphoria and well being. Some difficulty in getting to sleep but not severe. Vivid dreams. Small increase in "muscle energy".
Week 2
Still experienced a sense of well being. Began sleeping completely soundly at night, only waking up because of the need to urinate after eight hours or more of sleep. Noted some dizziness after approximately one hour if I took the ldn too long before bedtime. Began noticing a marked increase of "muscle energy", which allowed me to exercise more.
Week 3
Well being sense was not noted, but still experiencing improvement in "muscle energy"
Week 4
Started noticing mild irritability in the late evening. Still physical improvement, although at about this point it stabilized and did not increase. However muscle stamina did continue to increase starting at the end of this week until I stopped ldn.
Week 6
Began having increased irritability and mild depression in the evenings. Started having moments where I felt enraged, but they very quickly passed. Felt slight anxiety in the evenings.
Week 8
Irritability started much earlier in the evening. At this point, having "rages", where I would lose my temper over very minor things. Began noticing some anxiety and tenseness during the day. Began having some mental confusion when even mildly fatigued. Mild sleep problems. Physically found it much easier to walk, although began noting pronounced difficulty in coordination of my left arm. (???) Began minor muscle spasms.
Week 10
Irritability was beginning by mid to late afternoon. The "rages" had reached a level that I was fearful of my ability to control them. Began having anxiety attacks at this point that would happen at any point of the day. Seemed to have constant anxiety and depression. Began having difficulty sleeping and horrible nightmares. Would sleep for a few hours, and then be awake for several hours before I could go back to sleep. Muscle spasms increased, the Baclofen didn't help.
Week 12
Anxiety attacks, mood swings and "rages" were intolerable. Began having occasional full blown panic attacks. Sleep problems and nightmares continuing. At the end of the week, tried taking the ldn in the morning to see if it would prevent the side effects. LDN was still helping with "muscle energy" and increased movement.

Now from here, you can reference back...I already have written here what happened that day.

So there you go. I really think this is a very unhealthy medication for some people. Even though I kept doing fairly well physically, it seems as though emotionally I continued to get worse. I wish I could describe adequately the degree of problems I was having with my emotions.

I have asked myself again if I would recommend ldn. Maybe, but only with the warning that at the first hint of increased anxiety or depression, to stop the medication. Everyone I talked to who kept taking the medication said the problems just continued to get worse.

I guess where I really feel pissed is that through all my reading at the ldn site, it kept saying "with no side effects". That isn't even remotely true. My neurologist was made aware of them from a colleague. I can't believe that those people from that group don't at least admit to some people having problems. All they want to do is blame the person having them. All the way down to one doctor at the site suggesting therapy to someone who was having side effects!

I really believe without peace of mind, I don't have anything at all. I admit I've been feeling depressed since I had to quit the ldn, but I think that's understandable. I felt so much hope with it and had so much improvement...and yet I truly believe I had no choice but to stop it. And now I'm having to adjust to my abilities becoming worse again.

Actually, I know why I have been putting off posting. I've been feeling very scared about my illness, and I knew if I posted I needed to mention it. It's hard for me to admit how scary this is for me. And it's hard, because I know I could go back on the ldn. But I do think that for me, it's poison and given what occurred the day I took it in the morning, you almost have to wonder how long my body could have handled it. And that gets me right back to upset and scared again. Because now what do I do?

There you have it. I think ldn is absolutely a bad idea for a lot of people. Including me.

weird stuff found on the golf course today

2006-03-30T01:07:00.000-05:00

As far as comments, Anonymous you're right. And Nickie, you're right too. Since I read your comment, I have been looking into alternatives to the ldn, looking into other medications and supplements that would cause the body's seratonin level to rise quickly, and conversely boost the immune system. I'm still looking and absorbing the info, and I will hopefully post tomorrow regarding what I am finding out. Also, I would love to hear from anyone else who has an opinion. Either less people read this than I thought, or ya'll are scared to tell me your thinking...hahaha.

But what was most interesting to me today (especially since it was weird and distracting), was the various odd things I found on the golf course today. The first thing I found was a dead fish, a bit over 6 inches long and more than 1 inch in width, lying dead on a tee box area. This was at the start of the second hole I was on today. That was definitely a first for me. I looked, and although it this area is near a creek, there is absolutely no way the water level raised that high from the recent rains. So being the smart and tough girl that I am, I found a stick and flicked it until it reached the edge of the water. I have no idea what good I thought that would do, but it seemed only right. LOL

The next weird thing was that just past the green on the next hole, dead (pardon the pun) center on the cart path, was a muskrat lying belly-up dead. I was sure of this as I found myself standing there turning my head until I was almost upside down to verify my findings. This hole is also near water. Both of these creatures didn't appear traumatized or anything. Just dead. Which for them was pretty traumatizing, I'm sure. But I was fine, which really is what is important. So I figured the muskrat had been hit by something...hell, I really don't know what I figured. Not having a stick nearby and quite certain I wasn't using MY golf clubs to move it, I contemplated my options until I decided that since it was dead center (yet another unfortunate and unintended pun) on the cart path, nobody would probably drive their cart tires over it. At this point I had decided I wasn't looking down again until I got home.

This worked fairly well, other than I do have to look where I stepping so as to keep from falling down. When I mentioned this to Lisa, she wondered (A), if perhaps there was a clumsy owl or other such creature dropping animals, and/or (B) how can I be sure I there wasn't other dead things around the course...such as golfers? My thinking is that if there are dead golfers on the course, that goes WAY beyond my ability to move them with a stick, I know I won't move them with MY clubs, and I DEFINITELY don't have anything in my first aid kit to help them. I figure they're on their own.

So I happily continued, as I hadn't seen anything dead lately. I had gotten out of my cart near the fairway of one hole, and was parked near a hill. I saw there was something lying on the hill, and all I could think of is "Oh, hell". hahaha. Using my quick firing ability at analysis, I fairly quickly recognized it to be a golf club. So this not being a problem for me, I figured someone had left it behind and I would drive the forgotten club up to the clubhouse. Little did I know until I reached it that in fact it was a dead five wood. Someone had broken the shaft of the club right in half. Granted, I was aware that people do break clubs, although mostly from stories that I weren't sure were really true, but one would think they would find the other half of the club nearby. It wasn't there...and yes, I looked for a second. Given my experiences up until that point in the day, I wasn't going to look too very hard. Although it didn't occur to me until now that perhaps there IS a dead golfer somewhere with half a five wood stuck in them that I should have been looking for. Oh, well. Again, it's not like I had the equipment on me to help THAT problem.

So these are some of the fun things you can find on a golf course, all in one afternoon. I SO don't want to go to work tomorrow... :D

ldn -- yes or no?

2006-03-28T14:19:00.000-05:00

This is sort of a continuation of the previous post, plus some things I've thought about since.

Before I add to it, I need to explain how I have felt on the ldn. The first few weeks, I felt I had a mood elevation. I felt good, more positive, etc. And within a few days of starting it, I was really feeling more "muscle energy" as I call it. I do get a lot of energy from the Provigil, but that works more on the fatigue than anything else. After a time, I really couldn't tell I was on it, other than I continued to have "muscle energy"...which I did up until Saturday. I think it has been outstanding as far as helping me do light exercise, etc., and helping the stamina in my legs.

The downside is that for about six weeks I have been having problems with my emotions, especially in the evenings. I got to where I referred to them as "rages", and that certainly fit. I can't say I had mood swings exactly. I'd be in the same mood, and with the slightest trigger I'd be livid, and as time went on, to the point of feeling absolute rage. And then it would pass. But as soon as there was another trigger, back into a rage I went. The interesting thing is that I absolutely knew what was happening with it. I could tell someone that I knew I was disproportionately upset, but no matter how much I recognized it, I couldn't change the associated emotion. This started happening earlier in the day as well. In the last few weeks or so, I began to have anxiety attacks. That was particularly weird, as although I have had a panic disorder in the past, I hadn't had problems with that in years (other than very short blips) and I was on medication to prevent it. I also think I had been suffering from depression over the last month or so. I could live with the depression. The rages were horrific. The anxiety attacks, I knew, were starting to lead to panic problems. I was getting to the point where I was so stressed my jaw would hurt from clenching my teeth. And the final kicker was that rather than sleeping eight hours on the med, like I had been, I was sleeping very solidly for a few hours, and then would wake up unable to go back to sleep. Often it would take more than three hours to go to sleep again, and then after a few hours sleep, back awake I was. This was really messing with me too. And I had started having nightmares. To combat some of those problems, I had started taking fast acting anxiety medication in the evenings. It got to where I had to, just to get through the evenings at all.

Anyway, my doctor suggested that I might be able to help the side effects I've been having from the ldn by taking it in the morning instead. So I tried that instead. I do think that was the most difficult day I can remember, both physically and emotionally.

I woke up and took the ldn at 9:00 am. Within an hour, I started feeling dizzy. That didn't surprise me much, because that reminded me that if I took the ldn too far before bedtime, I would feel dizzy and off-kilter. That was easy to fix, as I would just go to bed. Then I started feeling funny all over. My hands and feet felt ice cold, and my lips felt kind of numb. My heart rate had also slowed quite a bit, and I couldn't even get a pulse from my wrists or ankles. I was sitting on the couch, and on two different occasions my heartbeat felt thready (I could palpate a pulse in my carotid). It wasn't like I felt I was going to have a heart attack, it felt like my heart was just going to stop. My thought was that I should try and walk around the house a little, get moving to up my heart rate. That didn't seem to work, and just caused me to feel faint. And the RSD pain and burning in my left arm was so horrible I was tearing up. I hadn't had problems with the RSD to that level in over a year. I finally took a fast acting Xanax around 3:00 or 4:00, and after about an hour I napped. Then I woke up and felt very anxious, so I took another one. I ended up taking three of them that day...on top of my regular long acting Xanax I take in the morning.

Lisa and I talked about it that night, and neither one of us couldn't fathom me even touching the medication again. I did a lot of research on Sunday, but ultimately it came down to the feeling that I am poisoning myself. It obviously was affecting my electrical system, so to speak. That's good, because it stimulates the nerves. However, I didn't like what it was doing to my cardiovascular system. If you look at the chronology of side effects, it's as if the longer I was on it, the worse they became. It didn't stop working on my muscle energy, but I felt it was making me sick. Sicker than I was to start with. Of course, I could take it at night again and sleep through what really was a living hell, but knowing what it is doing scares me to death.

My first impulse was to not take the medication ever again. However, I've had a few days off of it now and I'm feeling different. My legs are really weak and I have no muscle energy. I am also very depressed, although that might be due to frustration from being weak and the realization that I'm sick and don't know what to do. It also could be from going of the ldn.

It seems like most everyone I know has an opinion as to what I should do. Lisa really felt I should stop the med. Courtney really thinks I need to be on it...to the point of anger. I talked to her twice yesterday. She is very upset that I have stopped it, and feels I should just go back to taking it at bedtime again. Her feeling is that we know it was helping my illness, and I can't stop it now. (I honestly can't stress how upset she is and adamant I take it.) Bill feels I need to stick with a plan I sort of came up with spontaneously, and that is to not take it for a week. My mother, whom I called today to talk about it, basically said whatever I think I should do. Which is helpful, but the tone of voice wasn't. I guess sometimes things she says makes me feel like she doesn't mind me being vulnerable. Not that she wants me sick like this, but...hell, I don't know how to explain it other than to say it doesn't help and gives me the willies. Leslie, who is the person who originally told me about the medication, feels horribly guilty for telling me about it in the first place. She had even been experimenting with different dosages, etc., to try and figure out how to make this work for me.

The frustrating thing is that of the people I know who have taken it, only one (Corinne) seems to still be on it. Leslie had to stop because of the mood swings, and in her case, it was causing horrible depression. Chris, who is in the group Leslie and I own, had to stop it because of what he said was headaches. However, while he was on it, he did some very atypical things such as being a complete jerk. Leslie has known him forever, and said this isn't like him at all. And it certainly isn't in my experience with him. The difference is that they were all taking it for MS. You can't tell if it works in that case, and for the most part MS isn't a life shortening illness. That said, however, Leslie was also taking it for another illness she has, HS, which is excrutiatingly painful. It really seemed to be helping that. I think it says a lot when someone will quit a medication that helps stop such horrible pain because of it's side effects being so bad.

Yesterday, I tried to golf as I knew for the end of the week I'll be working at the golf course. After three holes my legs were horribly weak. They were shaking as if they were muscles I hadn't used in ages. That scared me. This quickly, I am physically feeling back to where I was right after I started the ldn.

I'm back to not having the first clue what to do. The opinions are stressful, as I can't exactly create a compromise between them. I am afraid to be off of it because of the progression, but I'm afraid to be on it because of not really knowing what it's doing to me. Hell, nobody really knows if, how, or why ldn works. And it bothers me because I'm afraid the ldn problem is affecting my friendship with Leslie. We get so caught up on it that we never get anywhere else. I'm afraid of her messing with the ldn. And I don't believe she should feel guilty at all. This has given me three months of walking that I wouldn't have had without the medication, and that's wonderful! But now I'm in a place of not knowing what to do, and feeling like I don't have all the time in the world to mess with making the decision. It's scary. I don't even feel like I have a week to decide. Each and every day is so critical. I can look at stem cell therapy, but realistically that probably isn't going to happen short of a miracle. And there is no guarantee it would work anyway.

Which leads me to here, at least for the moment. I don't know what to do. But it would be nice if I had more opinions. I've been given three, and they are Yes, No, and Later. If anyone is out there reading this, even if you only make one comment on this blog ever, please for my sake make it now. You can be anonymous by just not signing it. But I really need to hear what you think. If you're reading this, then you either have been from the beginning and know the whole process that led to here; or you've read it off and on which tells me you have some degree of interest in me or my illness; or you just happened upon it for the first time...and there probably is enough info here to help you at least give some sort of opinion.

Again, even if you only post a comment once, now would be appreciated more than you know.

appointment with neuro

2006-03-27T08:09:00.000-05:00

There has been a lot of interesting stuff happen in the last few days. I'll give you guys a break and split it up.

I saw my neurologist on Friday. The good news is that my legs are doing great! In thigh measurements, I've gained 1 3/4 inches on the right, and 1 inch on the left in muscle mass in the past three months! (No, Bill, it's not fat...hahaha) That is amazing to me. I know I've been able to tell a big difference because I'm walking so much better, but I didn't realize exactly how much gain of muscle I had.

The bad thing is that for the first time since I was diagnosed, there is a significant difference in coordination between the left and the right. It's really pronounced in my arms, just so-so in my legs. Which leads to the other bad thing...my arms haven't improved at all. They've kind of stayed the same in size (which I have lost a lot of my muscle mass there), but I don't seem to be as coordinated. I think that can be explained by the fact that I haven't really worked on my arms, so I hope that's all that is. I was so focused on getting strength in my legs for walking, I neglected my arms. However, I'm not sure about why I have such a discrepancy between the left and right.

I also talked to him about the ldn. He doesn't want to increase the dosage since it's working. I asked about the side effects (which have kept getting worse and worse), and what he suggested is that I should try taking it in the morning, so hopefully I'll be sleeping during the worst part of the problems. I tried that on Saturday, and that's what the next post will be about. I do hope read that one once I get it written, because that's certainly been...uh, interesting.

When I first left the appointment, I was pretty excited about how well my legs are doing! I really felt like I was beating this thing and I was really geeked. It was also great how much they helped me. I'm still messing with the insurance people about the Provigil, and the jerks haven't even contacted my doctor yet although I sent the info they needed three weeks ago. That wonderful doctor and staff gave me 14 weeks worth of samples! I almost wonder if the nurse didn't walk next door to get hold of that amount, as she had mentioned being next door while I was seeing the doc. Either way, though, that's a blessing because the Provigil is critical for my energy level. I've been skipping doses and stuff on days I don't have to be anywhere, just because I really can't do much without taking it. It really helps immensely with my fatigue. I love these people, I really do.

After my appointments, we always stop at this place just a few blocks down the road. He is so thorough with his exam that it takes a bit of waiting for me to get comfortable...and I hate riding when I have spasms. The other thing this visit was that I didn't have anyone to take me, so I had to stop as I can't drive while the spasms are going on. By the time I parked I had to sit there for a second because the weird discrepancy between my left and right was starting to strike me. When I got inside, I sat down and called Lisa and told her about my appointment. By the time I was off the phone with her, I was really thinking about how weak my arms really are. Then I called Courtney to let her know how the visit at the doctor went. She was really excited! I was trying to explain that my arms are screwed up, but she is so pleased with the legs she's not too concerned. And truthfully, the progress on the legs is bizarre good. I don't know of anyone else with my illness that has gained muscle mass and strength like this before.

After I talked to both of them, I really started feeling concerned about my arms. I know I had just seen myself in just a t-shirt, but it suddenly struck me how small my arms are getting, especially the upper part. It's hard for me to even make a muscle...which I didn't try until I was sitting there. That freaked me out a little. I don't know what the discrepancy means, and the doc didn't say much about it, but it just seems really weird. And he was making concerned faces, which bugged me more. Of course, I didn't ask that much about it because I couldn't get past my excitement about how well I'm doing with my legs, and that perhaps the ldn is helping me be able to get this sort of exercise.

Given that I had the arm injury on the left side a dozen years ago that led to my reflex sympathetic dystrophy, I suppose maybe the discrepancy is because the nerves in there are fried or something. But it really bothers me that it seems like the coordination got so much worse. Granted, I don't normally walk around doing the sort of testing he does on me, but I would have thought I would have noticed it more. I guess I have noticed it some, especially when I'm eating, but I was so focused on my legs I wasn't letting any other information in. I think it's because I don't like the other information. hahaha

I know it's no surprise, but emotionally it's really hard for me to deal with having this illness. I can buck up and be great, and even have days I don't think about it as much at all, but when it comes right down to it, I'm scared. And honestly, I can't tell if perhaps I am getting worse in the right arm too, as that would really be subjective after three months. We measure my ability to do the tasks, not the speed. And I don't know if I was going slower or not on the right. But this is really kicking my butt.

So, me being me, I tried doing some light weights (3 lbs.) and a few exercises with my arms yesterday. I didn't do very much at all, but wow if it didn't feel like my arms were dead by last evening. That's the lightest weight we have, but obviously it's too much. I figure the way I'll deal with my emotions about my arms (and that I'm afraid I'm progressing) the same way I did when my main concern was walking. I'll just focus on working on them. It seems if I work on the muscles that are offending me, so to speak, I am able to ignore my feelings about my illness so much more. It really didn't occur to me until writing it out just now, the extent to which I've been doing that. I sort of knew I was, but if my thoughts wandered too close to there, I just refocused onto the muscles. This illness is way too hard for me to deal with emotionally, so I just focus on particular muscles and making them work. Luckily, there is a good side effect to that in that I've been able to increase the muscle mass. However, the downside is that if I think about any other part of my body that my illness affects, I am totally shocked to remember that I'm ill. And therefore, I think I get much more upset than you would think I should be. I do much better emotionally if I can just focus on very specific muscles and tasks...and of course they have to be ones I feel at least somewhat sure I can improve. If they're not, like the coordination issue in my left arm, I ignore it. I do intend to try to work on it some, but I don't feel zealous about it. I think I know not to expect much. Wow, I think I'm a mess.

To top everything else off, Courtney called me on Saturday...during her vacation, of all things...to tell me how great it is I'm doing, and that it's great that I'm weird and defeat the odds right now regarding my legs, and how happy she is about it. Then yesterday, her sometimes boyfriend Bryan called to say he had heard the good news and wanted to call and say how wonderful he thought it was, and to congratulate me. I have to admit, I'm kind of glad that Lisa answered it. I don't know what I would have said.

No, I can top that. Courtney just called after I wrote that sentence. The next one was going to be that Lisa told him I have stopped the ldn and I hadn't had a chance to tell Courtney. I just had a rather unpleasant conversation. I'll get into the why I quit the ldn in the next post, but Courtney is really bent with me. She feels it's what is working, and that if I just take it at night again, all will be well. She's convinced it's that med that is fixing her mother...and I was going to say, before she called, that I felt that in a lot of ways she wasn't able to deal with me having this illness until she found something that gave her hope...like me taking that med. She could talk about it and tell her friends how well I'm doing, as long as, in her eyes, I was getting better. I had no idea she would respond this way. But I can't say much more without launching into post number 2, and I don't have the finger energy to do it at the moment. I guess she's like her mom...avoiding the major problem to focus on the one thing we can affect. For her it is the med, for me it is the exercise.

This is getting a little too twilight zone for me. I need to stop and regroup. I didn't exactly expect that reaction from her, and now we're both upset.

food for thought

2006-03-18T03:54:00.000-05:00

My therapist asked me an interesting question today about my blog. She wanted to know if I write about what I THINK or what I FEEL.

Probably not a bad thing for me to think about, because honestly I'm not sure. Maybe a little of both? What do you think?

the downside

2006-03-15T00:41:00.000-05:00

It would stand to reason that since my last post was about all the good things going on in my life, this post would be about the bad. I don't know that it will completely work out that way, but there are some things that are really frustrating me.

Charlemagne Regardless, my little guy gerbil, died last night. That was one of the reasons I was up so late posting...he was really bad. It seemed like he really had a tough time the last week, so in a lot of ways I'm glad he's not suffering anymore. He's up in gerbil heaven, which probably consists of lots of tubes to chew on, a never-ending supply of carrots and pumpkin seeds, and so much room he doesn't need a wheel to run. I won't go on about him, as I mentioned a lot of that in a previous post. But I am going to miss him. I think even Imani does. Twice today I found her sitting where his cage was, and she keeps running in there when I go down the hallway, thinking I'm going to visit with him.

I also learned something more about Courtney in dealing with the little guy. And this is a good thing. When she worked at a summer camp, she had to put down some animals who were sick. There was a bearded dragon that she just loved, but she knew he was sick and in pain. Yet despite how much she liked him, she had the courage to stop his suffering. The scary thing is that she drowned him. I know that sounds like she's psychopathic or something, but that wasn't it. He was going to die, and he was in terrible pain. And as I sat there with the little guy last night, I knew she had done something I could never do. I don't know what quality it takes to be able to do what she did, but I know I don't have it. Maybe I'm too scared, or (this just occurred to me) maybe I can't separate my emotions from what needs to be done. I'm glad she can. And it makes me very proud of her that she can do the right thing, even when it hurts as much as I know it did for her.

Another thing that is really frustrating right now is messing with Yahoo for our group chats. For one thing, sometimes Yahoo doesn't cooperate so it gets to be a mess. The main thing, though, is that I really want to get chat going, as I know many of our members like to, but most people just don't show up. Nor do they give me suggestions of when to do it. And then there is the Leslie factor. (If you're reading this, I know you'll understand, Les.) For a lot of people, if Leslie isn't there, they won't go in or they won't stay. I'm not paranoid...too many members have dropped in and asked if she is coming in or has been there. If the answer is no or I don't know, off they go. Or if she comes in, there are some that wait until she's there, and then leave when she goes. I know a lot of it is because she's known these people so long, but honestly it really hurts my feelings. I feel like I am really trying to make this work for everyone. Of course, it just dawned on me maybe I'm trying too hard. It just gets very aggravating.

And then there is Courtney's trip to Tanzania. I think it's wonderful that she's going to study there in the fall, but it is so much money. She also wants to take a crash course this summer at another university in some sort of Swahili, which is the national language in Tanzania. And that's a real kicker too, because of the cost. I would give my arm for her, but sometimes it gets scary. It's not that we can't get a loan to pay for it. And honestly, as a friend of mine said today, Lisa is a great father for doing that. (We were discussing Courtney's actual father not committing to helping on the trip.) I do appreciate Lisa doing that. But at the same time, I feel jealous. Lisa had asked me what I wanted to do this summer, and a lot of it is travel to golf. Mainly, I'd like to go to Myrtle Beach to golf for a week.

Ironically, however, that is where Courtney is going for spring break. I know my problem is that I'm jealous in a way. I wish I could do all the things she is doing. However, I also know that I wouldn't want her not to do it in a million years. I guess I'm also afraid that the ldn won't work forever (which I'd be surprised if it did). What if I can't go anywhere and do stuff like I can now when we can afford to do it? And how selfish is that? I hate that I feel that way. But conversely, I was really looking forward to Lisa and I going there (or somewhere like it) and just relaxing and playing golf and she could ride. We had such a great time (except for the bugs at night) in Wisconsin together, and it seemed like it really helped us and our relationship. And I think Lisa needs to get away from work more. It's all just a big confusing mess to me. I know, though, that ultimately I'm going to be thrilled Courtney did all this.

And the last thing is my health. The ldn has given me strength I haven't had in six months. It's wonderful, but sometimes it's scary as hell. It's almost like I have to readjust to being ill. And there is a nagging thought in the back of my mind that wonders when this will quit working. Realistically, it will stop working at some point. Otherwise, one would have to say that ldn and stretching/yoga and light exercise can completely reverse motor neuron disease. As much as I hope that will be the case, I don't know how it would be. I can't imagine that I would be the one who that would happen to. Then I think, perhaps I was misdiagnosed (which does happen, I know) and I will actually completely recover or have an entirely different course of disease. It seems like all this would be good, but in many ways it's not. It's the most scary thing I've ever had happen to me.

I've got this horrible illness and I knew the course, etc., and now I don't know the course, and I don't know what's going to happen. Mentally, I think this has becoming a very nagging problem for me in that it doesn't seem to leave the back of my mind. What if I wake up and the medicine has quit working? It seems like there is that trepidation that constantly lurks in the back of my mind. In some ways, this is harder than before. Because there is always that fear that ....

Okay, this just dawned on me. I think what I'm afraid of is losing hope. I feel so hopeful now about my illness, but what if I lose that? That's a horrible thing to lose. I am honestly trying to just go with the flow and deal with how I feel each day, and I think for the most part I do okay with that. However, I think that fear is causing the nightmares I've been having for the last week. I have had some of the worst dreams I've ever had for the past week. I still sleep, because the medicines work to make that happen. However, maybe that's where that fear is getting expressed. I don't want to wake up one day and go to do something and find myself back where I was before. I'm certainly not anywhere close to well, but the improvement is remarkable to the point that I think I could call it astonishing.

No wonder I keep getting so frustrated with things. Lately I've been having what I had been referring to as mood swings, but in fact they aren't. I'm in the same mood most of the time, and then I suddenly am extremely angry about something that isn't that big of a deal. Perhaps my mind processes the stupidity of the situation that is occurring at that moment and I get indignant because how ridiculous that is compared to what if I start getting worse again, or maybe even have a relapse so bad that I go to where I would have been if I never had paused in the progression.

I am terrified that it not only will this system quit working, but that I will actually relapse that way. I hardly ever think that out loud, but it's there.

Okay, that's enough. That's a subject that could go on forever. But you know, when I think about what I wrote yesterday versus today...I'm pretty darn lucky and very damn happy. I have much more going for me than I have going against me. And I like that.

the good stuff

2006-03-14T00:52:00.000-05:00

One thing that was interesting that happened to me lately was that the other evening I was contacted by the Gallup Poll people, for a Gallup/CNN/USA Today poll. Some of the results came out today, and I found out that I am one of 1,001 adults they interviewed. So yes, I feel special...hahaha. Actually, I think that's pretty cool.

Now to get to the really good stuff. I think I have walked more in the last two days than I have been able to in more than six months! It's great and weird all at the same time. It's obvious why it's great, but it's weird too because it's almost like I don't know what to do with it. I'm not going to say I haven't fallen...in fact, I did several times today. But I attribute some of the falling with the fact that there were horrible wind gusts. But it's really great!

It's been very good for me to hang out at the golf course, work, etc. Sunday was all work. I think I managed to hit maybe five to ten practice shots until I got done, and afterwards I tested out a few putters. Monday was a little work (helping with signs inside, etc.), but I mostly practiced and hung out while I rested. It's nice being someplace where I understand what's going on, where I can see and talk to people, and learn new things. Actually, when I realized exactly how well I was walking was when I went out to practice my putting. I went to their largest green and threw out 11 golf balls past 35 feet. And I would go through each one, putting it until I got it in the hole. Then I'd go back to another and do that. Then I threw out on the green that far all the ones I more than two putted, and so on until I had completed them all. That is one hell of a lot of walking at one time, and just as I was about to finish I realized how much I had done without stopping and resting. My legs are sore tonight, but it's a good sore from using them. I knew I had walked a lot Sunday, but it was stopping, getting out of the cart to pick up stuff, and then walking back to the cart. So there was a lot more rest involved.

But obviously the really great thing is that I'm walking so well! I think I'm going to have to let that absorb more before I can comment on it further.

Leslie and my online group is going very well too. It's not very busy right now, but it does seem to go in cycles. And in a way, sometimes it's nice when it's a little slower. Probably the best thing that has come from the group is that I've made such a great friend in Leslie. I really haven't mentioned that much on here, and I don't know why exactly. It's so nice to have a girlfriend to talk to and laugh with and someone who understands being ill. The only bad thing is that she lives up in Canada, so it's not like we can get together for coffee or something. That would be nice, to sit down and just talk face to face sometimes. But she is a great friend. It's funny that a lot of times we seem to sense something is wrong with the other and send an e-mail or call...even though we haven't talked for the other one to have any clue about it. That's kind of neat. And we're very alike in some ways. We're both stubborn and have very similar personalities in a lot of ways, and it's nice to have a friend who understands those peculiarities and such. Another great thing about her is her sense of humor. She is so much fun! And this will seem kind of dumb, but it's my blog so I can say it, it's so cool that she's straight. I've never really had many straight girlfriends to talk to. I don't know exactly why that is, but I have many theories that I sure don't want to get into now. hahaha But I think we make a great team as far as owning the group, and it's good to have a good friend like her.

Another good thing that happened is that Bill took wonderful care of me while Lisa was gone in Michigan over the weekend. He called often to check on me, talked to me for quite a long time when I was feeling anxious and stressed. He really went above and beyond, you know? I called him today to thank him, but I don't know that I can really express how much it meant to me. It made me feel not so alone, and reminded me of what a great friend I have. How cool is it to have a friend that cares like that?

Lisa and I are also getting along very well. It seems we've reached a place in our relationship where we're very comfortable and such. In some ways it seems that things are going better with us than they have in a long time. Bill has even mentioned that there seems to be a lot more caring and understanding, etc. Not that there wasn't before, but it seems like it's more there now. A lot less tension is one thing I notice. But I am happy about that. I think one of the best things in the world is when your partner and you are connecting well. It makes other things seem not so bad, you know?

Another thing that happened that was neat was that on Sunday, Courtney called me to tell me how proud of me she is. I mean she went into tons of detail about it. It feels kind of weird to have your daughter tell you she's proud of you, but I am sure not complaining! She's a good, smart young lady, and I'm pretty impressed that she is such a thoughtful person that she would call out of the blue and say those things. And no, she didn't want anything...hahaha. She just told me all of that, and then said she had to go...she just wanted to tell me that. Pretty cool, huh?

Actually, there's a lot of good things going in my life, and I'm so glad about it! Of course, there is some bad stuff right now too, but I'll put that in a separate post. It might help me to be able to look back on all these things later. But I really felt like tonight I needed to write out some of the great things that are happening with me. Thinking about what I just wrote, I realize that I'm an amazingly lucky person. :)

sitting with the little guy

2006-03-12T00:21:00.000-05:00

I thought I'd take a little break and post here.

Charlemagne Regardless, the little guy, my gerbil, is dying. I thought he was very ill a few months ago, but he recovered okay. However, he hasn't eaten anything for several days. He hasn't chewed up his tubes even longer...which is his favorite pastime. It's hard to say if he had been drinking any water, but he isn't strong enough now to push himself up to it. I have been bringing the water bottle down, but he doesn't have any interest in it at all. He's basically been sleeping in his tin can for the last few days, but I did get him to come out when he smelled me earlier this evening. He is obviously disoriented, breathing way to fast, and is now just lying there with his eyes closed.

It's weird how we get attached to things we don't think we will. Courtney asked me if I would keep him after the semester ended back when she was in high school. So being me, of course I said yes. I figured hey, he's low maintenance, and it's better than him getting eaten by the other gerbils. He's a gray and white one, which are unable to reproduce, and I was told then that he wouldn't survive with the others. So here he is. We kept adding stuff to his cage, I bought him little gerbil toys which he ignored. But he is my little guy. He has been so funny, and I ended up incredibly attached to him. I think mostly because no one else really did.

I never did get him super used to people, but he would crawl up in my hand about every day when I would feed him, and occasionally let me pet him while he stood there. I tried to pet him about an hour ago, but he moved away, so I figured he didn't want to be touched. I don't think he's in pain, but I have no way of knowing. I know he's very old for a gerbil.

I think I identify with him so much because as I got sick, my world ended up being mostly this house. And for him, it's been mostly his cage. We both get out once in a while, but we always end up right back in our "containers". And for the most part, it has been where we both prefer. For him, because it's scary being out there (especially when you have a cat that stalks you but doesn't hurt you), and for me it was getting too hard to get out. It's funny that every day as I ride the exercise bike, I watch him and think how in our own way we're alike.

I admit sometimes I would ignore him for a bit other than to feed him every day and such, but it seems like I always end up going back and visiting with him. He's really fascinating.

But I need to go back there again. I don't want him to be alone, even if he is a gerbil. It just seems right for me to sit with him. It's late and it's storming. And another thing...why do people and animals tend to die at night? I've always wondered.

not a thing to say

2006-03-10T22:40:00.000-05:00

I got here and realized I don't have a darn thing to say. I'm tired and very grumpy, so absolutely nothing I say I probably mean that much.

Sometimes I get aggravated with co-owning the chronic illness group. I feel like Leslie and I bust our butts and it isn't appreciated. Not that I need patted on the back every day, but I schedule chat times, and who knows if anyone will show up. So I end up spending two hours sitting in front of the computer waiting. And obviously some people only want to talk to certain other people, so if they show up and the person they want to see isn't there, they just take off. Oh well, at least I know I'm in a bad mood.

I talked to my therapist today. I absolutely can't deal with the group I'm in. So many of them are so low functioning that I feel like I'm sitting there by myself. So I'm going to meet with her next Friday morning and we're going to decide if I absolutely have to be in a group. The psychiatrist wants everybody in a group, but that doesn't do me any good if there isn't any groups that will help me. Hopefully we'll figure something out. I know I need some help, but I'm not getting it this way.

Lisa is gone for the weekend, which probably isn't helping my mood either. It's so much harder to take care of all the animals and such by myself. Not that I can't do it, but it really wears me out. And I was already feeling pretty lonely lately. I can't wait until I can get out there and go to the golf course. I know that's going to help. Right now, though, it's just a mud bog.

Okay, I'm done complaining. It doesn't do any good anyway, does it? hahaha

alive and kicking

2006-03-10T01:35:00.000-05:00

Wow, has it been a week? That's weird. It didn't seem like it was that long since I wrote.

I'm still feeling a lot better. I don't have near as much cramping or aching like I had before. I really can tell the difference on this medication regimen...especially the ldn.

I'm still fighting to get help to pay for my Provigil. At $13 dollars a pill, I sure can't afford it. If I win the appeal, that would be the best thing. Otherwise, I have to contact Medicaid...which I don't want to do. It's always such a pain in the ass to work with them.

I'm kind of off schedule tonight, being up this late, especially since I want to call my therapist early tomorrow and get set up with a different group. I feel like I should at least be with people that are semi-functional emotionally, for goodness sakes. I get so frustrated in there. But my new psychiatrist is like the group nazi. If you don't go to group, he won't fill your prescription. And I mean like if you miss ONE group meeting. He's quite an ass...but I'm not going to get into that tonight. I'd rather do that once I get that problem resolved too.

I am still feeling some really weird stuff regarding getting better. Sometimes it seems so unfair that I seem to be getting better right now and other people I know are getting so much worse. I understand the mechanics of the emotions and why I'm feeling them, but I sure don't know how to quit feeling this way. Another good reason to talk to my therapist.

Anyway, I just wanted to let everyone know I'm still alive and kicking. Hopefully I can get into a routine. I know, I say that every time I post. But I do think I feel better when I get some of the crap out on here. Why on earth is writing this so damn hard?

great ldn news

2006-03-02T02:01:00.000-05:00

Okay, I let this get really, REALLY behind. Here it is, early morning of March 2, and I have tons of news.

First off, the best news of all. I have mentioned I have been using the low dose naltrexone (ldn) for a while now. Actually, I believe I'm in my ninth week of it. I have some really great news. I was going to wait until I went to see the doctor, but I decided to go ahead and do it at home. My thighs have felt a little bit stronger, so I decided to measure them. I have gained 1/2 inch in muscle mass on the right, and 1/4 muscle mass on the left! That is amazing! That's about where I was a little over three months ago! And this is the first time I've actually not declined!

I don't think the ldn is doing it all by itself. Since I started the med, I have been able to do some light stretching/yoga exercises, a few isometric exercises, and I've been trying to ride the stationary bike three minutes each day. However, that is so amazing to me.

I posted about this at an online ldn site, and have heard from a few doctors regarding it. If the ldn can in fact work, it really is the only treatment there is for MND. They can do palliative treatments such as Baclofen for the spasms, Neurontin, Provigil, etc., but this is actually seeming to help me go back rather than progress. I am super geeked about it!

Of course, we discovered the weirdest thing. Lisa, Bill and I went out to celebrate. You can't really celebrate a slight improvement in a horrible illness. Not that you don't want to, but no matter how excited I am there's this weird thing that goes with it. It just isn't celebratory. hahaha

Also, it's very hard to celebrate when on the same day you find out you've gained some muscle, you go right out and overdo to where you can't hardly move for two days. That was stupid...but I'm learning my limits. And yes, I actually did stop today before I got to hurting worse. See...I can be trained!

I have so much to catch up on here, and I hope to do it a little at a time. I need to get back in a routine again. It seems that since I started taking the ldn, I go to sleep so much earlier, and I had gotten used to posting late at night. And I can't seem to get myself to post earlier in the day...but I'm working on it. I just happen to be up tonight because I am having a rage problem. Of course, that's a completely different story. And no, I don't know exactly why I'm this angry. But I'm going to try and go lay down before I get my third wind of rage. I really don't need that, and I'm not used to getting angry like this anymore. Oh well. This too shall pass.

"never too late"

2006-02-20T11:27:00.000-05:00

I meant to write yesterday, but I ended up feeling so exhausted and yucky early last evening, I decided to wait. Actually, I've been meaning to write a for the last few days.

The most exciting news is that the "Never Too Late" foundation is going to sponsor me to play golf at Crooked Stick (where the Solheim Cup was last year that I went to, and it has also held the PGA Championship in the past) on May 1! It will be Lisa and I and two of the pros from there. I can't wait! I can't imagine playing on the same course that all those wonderful golfers did. The course was also designed by my favorite designer, Pete Dye, who happens to live in the summer just off the 18th green. How cool is that? I want to talk more about the "Never Too Late" foundation, but I'm going to save it for another entry. I've got too much else to catch everyone up on.

I also will be working at Meadowbrook Golf Course this summer. Basically just whatever hours they need me (which doesn't sound like a lot) and I will be able to golf this summer! The free golf is more a courtesy thing for volunteering out there. They know I can't really work anymore, so I'll just do things like making sure people start off at the right time, obey the course rules, things like that. Just a few hours when I feel up to it, and if I don't feel up to it on the days they need me, the owner told me to let her know. Basically, they have several retirees that help like that as well. It especially helps during outings there, when there are a lot of golfers who don't know the rules. So I'm really excited about that too! They're also going to get all the info together about amateur tournaments and the like, so I can try and play those as best I can. I am also going to try and get some coaching and help from the pro/owner there.

I've mentioned before what my goal is this summer. I want to work as hard as I can on my golf, and try and get my handicap down to a single digit, but more importantly I want to compete everywhere I can just to see how I can do competitively. A few people who don't see me very often have mentioned that, well, I may be able to golf next year. That is true, one never does know. But this year I'm pretty sure I will be able to at least part of the season. I'm trying to be as realistic but also as positive as I can be. And I don't want to be sitting her at this time next year wishing I had tried to play this year. That way if I am able to play next year, it's a bonus!

I also figured out why I like golf so much. I know I've kind of written about that before, but it came to me in a single sentence. Of all the sports I've played, this is the only one where I feel at peace playing it. Heck, I think it's about the only time I've felt at peace ever. So often I have wished I had taken it up earlier, but I didn't and I just need to live with that. And that's okay. At least I found it.

I've felt okay lately, still not much in the way of progression since I started the ldn. I've felt kind of worn out the last few days, but I have been pretty busy. Hopefully that isn't an indicator of my ability to get out there and golf...we'll just have to see.

Also, my insurance company has stopped covering my Provigil. It was $23 for the two pills Lisa picked up for me. I hate the stupid Medicare D drug coverage. I had more drugs covered before! What a mess! So now I'm going to have to see if there is any way I can get that covered by some program or another.

That's the biggest news I have for the moment, but I have other things I want to write about. I'm going to grab a bite of lunch, take my meds, and hopefully write more later today. I need to not let this stuff get so far behind!

a letter to my group

2006-02-16T00:44:00.000-05:00

As you know if you've read this blog for any length of time, I co-own a chronic illness group with a friend of mine, Leslie. I've been thinking about what I wrote her last night, and it struck me like lightning that the main thing that has been causing all this depression is my fear of dying. I know it will get better now that I can see the problem. And I know it will pass. If you've read this from the beginning, you know I've been through this before.

The point of the previous paragraph is that I wrote to our group about this tonight, and I decided it would be easier to cut and paste that than write it up all over again. hahaha So here is the e-mail I wrote to the group. I hope this explains how I've been feeling:

I know we joke around alot here, but we also have some serious stuff. So of course, I thought I'd say something very serious. (And no, not because everyone is having so much fun...LOL)

I've been debating writing to everyone here at the group about something that's been going on with me, and I think I would like to share it. Many times I have feelings or worries about being ill that I don't know if other people have, so I thought maybe I should tell you all how I'm feeling. Just kind of throw it out there. It can be very lonely being chronically ill.

Most of you probably remember our conversations about the television program ER, in which James Woods played a character that has ALS. I encouraged people to watch it, so they could understand my illness a little better. ALS (Lou Gehrig's) is sometimes hard to explain, just like a lot of other illnesses.

You might recall that I watched it too. I told everyone I was fine about seeing it, and I really thought I was. However, I have found in the last few weeks I have been very depressed and not myself at all. I've been completely confused about how I've been feeling and acting and what was causing it.

What I finally realized today is that I am really scared of dying. I realized that watching a program in which a character was progressing at a similar rate that I am, really threw me. And to make it excrutiating, the course of his life and illness was summed up in an hour. I have known and met people at all different stages of the disease, but I haven't watched them progress in an hour. And I understand now that it scared the heck out of me.

I know it's okay to feel this way; I know it's okay to be scared. It's human nature. But in trying to be so tough about it, I was hiding my feelings, even from myself, that I am afraid of what the future will bring.

I'm not sharing this so people will feel badly I am scared. I wanted to share it because I would bet that almost everyone here at one time or another has felt that way, and it's not something we generally talk about. Sometimes it makes us feel weak to admit we're afraid of the course of our illnesses and the "what if's" that we sometimes think about that might happen down the road. I know I don't talk to people about it.

So if you do or have felt that way, you're not alone. And if you want to discuss it that's great, and if you want to leave this e-mail as is, that's okay too.

*hugs* and love to all,

Cath

ps--Les, thanks for listening about this today so I could collect my thoughts, and for seeing long before I did how that program would affect me.

don't know what to say half the time

2006-02-15T01:31:00.000-05:00

Yep, I'm still here. As much as I'm in front of the computer, you would think I would write more, but most of the time I don't have any idea what to say. It's like I have a mental block about my illness.

Leslie and I are still doing pretty well running the group, but we are having a problem with a member. I'm not even going to get into it here, other than it would be safe to say I got so upset about it today I was physically ill. Someone else in the group mentioned I shouldn't think about the group when I'm offline...well, that's not going to work...hahaha But a nice thought. I really like being able to help people. But that leads to another problem.

Ironically, my therapist called me today and said I need to start going to a group for depression. She was pointing out the difference between running a group and getting help in a group. I know she's right, but I really don't want to mess with it.

I think my biggest problem lately is that I've been depressed. It really keeps hitting me that I'm sick. I don't think it's a conscious thought as much as subconscious, though. But I am getting pretty scared and I'm not exactly sure why. I guess I'm afraid I can't do the things I hoped to this summer...and I don't know how to handle being disabled. It also occurred to me out of the blue the other day that I'm really scared of dying. What brought that on is beyond me. I guess I equate not being able to do things with dying in some way. Oh well, I'm sure if I think about it more, I can really get myself upset...hahaha.

I guess mostly I just feel overwhelmed with everything. I have yet another job opportunity besides working at a golf course...proofing medical transcription. I don't even know if I could concentrate well enough to do it. And on top of that, it has been awhile. But I need to go to both the golf course and over to see the woman that owns that transcription business this week....and to therapy. That's more than I've done in one week in forever. It's just so hard to get out and about.

I guess maybe sometimes I just want to hide from all of this, and I can't. I seem to follow myself, which is a problem. And I know the last thing I need to do is isolate.

I'll get by. I just need to face this square on again. I just need to remember how to deal with it.

feeling a little off

2006-02-05T01:36:00.000-05:00

I believe I'm completely physically recovered from my "event" last week. No bruises, so I'm all good.

I haven't been writing here much because I keep going from depressed to fine and back again. I don't know what that's about, but hopefully that will clear up soon.

I've been busy with my online illness group, which is good. I've been re-starting chat, which means sitting here in front of the computer for two hours a day, but it really hasn't been too bad. I've learned a lot about the different members. And my co-owner and bud, Leslie, finally has her computer pretty much fixed, so I won't have to take as much time doing the other stuff with the group. So that's all going pretty well.

If you're wondering, I did watch the ER episode this week where James Woods played a man with ALS. They did flashbacks to show his progression. It was kind of hard to watch...I found myself looking at a magazine during commercials so I wouldn't think about the show too much. I thought it was very well done though, and matched what I've seen regarding people with ALS. Everyone's progression is different, but the symptoms are the same. You just may get them in a little different order. I feel very fortunate that my progression seems to be very slow at this time. In fact, on the ldn, I have had my first month in which I didn't get worse at all! I can't complain there, for sure.

The bad thing this week is that Lisa has been sick with a terrible cold. Poor thing was so sick on her birthday, we ended up eating a quick, easy dinner, rented a movie off the TV, watched ER, and off to bed for her. She said she didn't mind, but it still stinks to be sick on your birthday. It seems that every day that she gets to feeling better, the next day she's worse. I think she's trying to do too much. Lucky me, I'm catching it as well. I slept off and on for about 14 hours, and have been feeling yucky all day. We think I have a fever. That's no fun, but what can you do?

I can't really discuss how I felt about the ER episode yet, as I'm still kind of processing it. However, it was good for them to show what the disease is like. I think that's important, as it's pretty rare that you see a character with ALS. However, I can say it reminds me how much I want to fight this. And it scared me a little. I'd just be so happy if we can get the progression to stop right where it is. That would be great!

I don't know why, but I just don't feel quite like my normal self. Well, actually, I don't at all. I haven't had a chance to talk to Bill much, and that might be making me feel a little off kilter. He and I had a discussion early in the week, and I haven't had a chance to talk to him about it. Or maybe it's because I'm not feeling well. Or maybe I'm just worn out. But I sure don't like feeling this way. With all the antidepressants I'm on, I sure as heck shouldn't be depressed, but I am. I'm sure it will pass though...it always does.

regarding my previous post

2006-02-01T00:19:00.000-05:00

It was brought to my attention today that perhaps I shouldn't have used the word dyke in my previous post, as that furthers stereotypical images.

I thought about going back and changing it. However, the more I have thought about it today (and I have given it a lot of thought, actually), I don't think I can do that. I know why I had the emotional reaction I did and that when I wrote the entry into my blog I was very upset. I think it was because a person I had dated in the past who happened to be a woman, was at times physically abusive. And I felt vulnerable then, and I feel vulnerable when I think about what happened at that bar. Perhaps it wasn't the most sensitive language I could have used, but for me it was (and is) the easiest way to describe the person who was pushing me. Whether or not I like stereotypes, they do exist, and when I used that term I have a feeling people who read it (gay and straight) had a fairly accurate picture of the person I was talking about. Now saying superdyke was just ridiculous on my part. That came from a sense I got from her regarding her feeling more powerful that me by pushing and shoving a person who is disabled.

I don't like stereotypes. However, I have called myself a dyke and probably will again. Not because I fit that image physically, but mentally. And yes, being called a dyke can hurt...when said in a hateful manner.

I know I shouldn't have stayed at that bar by myself. However, so many things in life can be looked back at and one could see where they made mistakes. That didn't give them the right to treat me that way. And it was also brought to my attention today that perhaps I think I should be given special treatment because I am disabled. So of course I had to think and think about that today too. (A bad habit on my part...I stew on things.) My issue is that after me initially saying "What...what did I do?", I never argued the point. I did say it was ridiculous. I said I'd like to grab my purse and can't I call for a ride from inside here? But I was trying to go to the door. There was no point in pushing and shoving me just because I wasn't going the speed she wanted me to. I don't think I'm appalled because I'm disabled and was shoved. I'm appalled at the thought of a person who is disabled being pushed and shoved. Because of everything that was happening, of course I couldn't tell other people's reaction. But if I had seen that happening, I certainly would have got up and said something. I do recall while trying to get up hearing the woman in question telling somebody to keep their asses out of it and sit down. Now whether that person was coming to my defense or what, I didn't see. But I'd like to think I'd try and stop her from doing that.

As far as everything goes physically, I'm healing fine. My neck is still a little stiff, but getting better. I was able to do all my exercises today except for my stretches. My sunglasses that were broken when I landed on my purse can be replaced. They were cheap ones anyway.

I think if I could change one thing about me right now (because it hurts me personally), it is that I am always surprised by meanness and unfairness. I don't mean oh, poor me, I'm disabled and that's not fair. Of course I don't think that's fair, but fair never enters into things like that. I mean regarding the way people treat each other. I get totally shocked to discover that people can be mean, hateful, or cruel to another person. (Yes, animals too, but that's a different discussion.) At the age of 41, you would think I would realize that, and know it's going to happen. But every time it feels painful. And that happens whether that behavior is directed towards me or towards anyone else. Maybe that's the way I'm truly disabled.

yes, I'm still here

2006-01-30T00:47:00.000-05:00

I've been thinking about this blog quite a bit recently, I just haven't been writing. Lisa suggested that it might be that I don't need it anymore...that I'm so busy with my online support group. I think I quit writing as often because I don't think about my illness quite as much as I used to, and as usual, I figure my day to day stuff is pretty dull.

I've been on the ldn (low dose naltrexone) for over a month now. I feel like it really is giving me more energy. And I'm actually sleeping eight hours at night, and I no longer have that groggy feeling when I wake up like I did when I first started it. I'm amazed at the different illnesses people use it for: MS, fibromyalgia, Crohn's...there's quite a list.

I have been trying to do my exercises every day. I have missed them for the last few days, but I think I'll get back into my routine again tomorrow. It's been a weird weekend.

I've seen my new psychiatrist since I last posted (I think it was since then), and he is switching my antidepressant. I think that's a great idea. Also, I saw my internist last week as well. It was a very good appointment, as he could see I'm actually having somewhat increased mobility since I started the ldn. And that I can now exercise at all is amazing. It kind of threw me though, because he asked how I feel after I ride the stationary bike. I usually try to ride it for three minutes. I explained that my legs feel very weak, etc. So he said that I needed to remember that I'm not going to get better, so don't overdo. It took me the longest time to understand that not overdoing it was what he was trying to say. I think for a while there I forgot I'm not going to "get better". But one thing is, I actually have been better, I think, since I started the new drug. I'm just going to have to prove him wrong. But I did feel very low about it.

Then Friday I was on the phone with my friend Leslie, and the postcard came in the mail to remind me about the next ALS support meeting. They're going to have someone talk about alternative communication options. I just picked it up to put it on the table, and next thing I know the topic caught my attention. I completely forgot what we were talking about. I like the people at the support meeting, but I'm not ready to hear about this kind of stuff right now.

It has occurred to me that I'm in denial about my illness to a degree. I think because I've slightly improved my mobility and haven't declined, there is a part of me that is convinced that I won't ever get worse than I am right now. And I don't want to screw that up by hearing about things I might or might not need in the future. Or, being told that my illness is progressive and degenerative. Oh well.

So Saturday, Lisa and I went for a drive and stopped at a bar here in town that this guy who owns all the slot machines around here owns. Trying to keep a long story as short as possible, I was talking to Lisa about the handicapped stall, mentioning the toilet is way too low. And she was explaining to me about the codes and stuff, that they have to be raised. Well, a little time passed and Lisa left. I had wanted to stay at the bar and hear this band that was playing, who is supposed to be very good. So I sat there at the bar and watched them and had a couple of drinks. I went back to the bathroom, and because my legs were tired from being out longer, I had a heck of a time getting up off the toilet. So I went back up to the bar and ordered a drink and walked over to talk to the lady who also owns the bar. I wanted to mention (since they were still doing a bit of construction in some areas), that it would really be helpful if the toilet was raised in the handicap stall. And I was being more than polite...I just wanted to make that comment. I barely got out my sentence when I was suddenly kicked out! I was like, What? What did I do? So I was told it's none of my goddamn business what they do. And this big bitch of a dyke got up in my face and was saying just get the fuck out. So I said hold on, let me get my purse and call for my ride. She started pushing me and told me to call from outside. Here I am, walking with a cane, and I'm being shoved. And of course, she had some guy helping shove me out as well. Well, that sure didn't help because I have enough trouble walking to start with. So down I go. I get up and she's still yelling to get out. I get in out the door and was standing between those doors and the next set that would put you outside trying to call for a ride (as it was very cold and I only had a light jacket on), and then this dyke pushes me and says get out, you can't stand there. I said I'm trying to make a phone call so I can leave, okay? So she starts up on this get the fuck out stuff again. Thankfully, this guy who had seen the whole thing (which would actually have been everyone there, as the band was in intermission) stepped outside and waited with me while until Lisa got there to pick me up. I was furious! For one thing, I cannot for the life of me figure out what I did! If I had walked up to her and said, you know, the 20 slot machines you have in here are illegal, okay, I'd see why she's mad. But about the height of the toilet? So this morning, since Lisa works at the paper, she called and asked what had happened, because she wanted to put in the thumbs down column they run on Monday that a physically disabled person was pushed out of this place, but wanted to make sure she had talked to both sides. The gal she talked to said she didn't hear what happened, but was there and that I was intoxicated and they throw people out who are drunk. Well, that's kind of interesting since I was just served a drink when I went up to talk to the owner (which superdyke grabbed from me). Given who owns the place we decided that it shouldn't go in the paper. Yes, I'm still mad. And it hurt my pride. And I'm glad that guy came out there. When I stopped between the doors, it wasn't just because I was cold, it was because it's not a great neighborhood, it's dark, and near the area where this girl who grew up next door to my parents was picked up and consequently murdered. (I'm totally serious.) Actually, I'm even more mad now.

So today, I was nursing my wounds and my brother stopped by. And I found out I'm going to be an aunt again in August. He and his girlfriend just found out she's pregnant not long ago. (I guess she's 14 weeks along.) I honestly didn't see that one coming. But it sure did make for an interesting day. Heck, an interesting weekend, eh?

I have been very busy with my support group. It's called TheChronicIllnessCafe, and we set it up through Yahoo groups. It's for people with chronic illnesses. I enjoy doing the group, but sometimes I guess I feel overwhelmed. I'm trying to get chat started, because a lot of the members really enjoy that, but I can't get anyone to help me do it. Which aggravates me. You try to have them last two hours, which means I have to stick on the computer at a preset time, which isn't always easy for me. Oh well. But I do like the members. It's nice to talk to other people who deal with the same stuff you do. And it's really like a family. So if you happen to be chronically ill and reading this, you're more than welcome to join the group.

Okay, that's enough. I'm so mad about Saturday, I'm shaking again. But I will try to write a little more frequently...hahaha.

trying to catch you up

2006-01-11T23:45:00.000-05:00

Happy New Year!

I know it probably seems like I fell off the face of the earth...or at least from this blog...but hopefully I'm back to better form.

I am still taking the ldn (low dose naltrexone), but it actually is affecting my posting. I have more energy in the day with it, but I find myself very tired in the evening especially. I think about posting in the afternoon, but that seems weird because it's the middle of the day. I think I'm going to have to get over that and just do it. Tonight I had a short nap, so I'm awake enough to write.

Oh, so much has gone on. It was a very busy holiday time. Courtney went back to school this past Saturday, so Monday was actually the first day everyone was back where they normally are. I think it's taken me a few days to get used to it.

As I mentioned, the ldn seems to be helping. For the first time I can remember, I am getting good, deep sleep for eight hours at a time. The problem is that I'm sleeping even more than that at a time. It's hard to get myself up. But once I do, I definitely notice more energy. I haven't slept as well the last couple of nights, but I'm hoping that's just an anomaly. I was feeling really lousy today (and had not felt quite right the last few days), so I napped this evening. I woke up just drenched in sweat. I'm wondering if I didn't have a fever or something going on. So hopefully I'll be back to normal sleep tonight.

In more big news, my daughter's best friend Heather, who is such a good person to me (I can't really call her a kid anymore) is getting married on Saturday. Her fiance has joined the Army and is leaving soon. They've been engaged forever, but this is sudden. Josh (her fiance) felt the best he could do for them is to join the military. That would give them insurance, etc. She just started her practicum as a physical therapy assistant, so of course she can't work her old job. I know they need to do this, but it's even hard on me. Heather will stay in town until May, when she graduates. The are both like my kids to me, and treat me so well. It's going to be bizarre...no, I'm just going to miss them. Josh has always taken the time to come and play games with me, watch movies, talk...it's nice. Heather is always good about visiting too, and does a lot to help me, and at least she'll be around a little longer. It's almost like my own kid is moving away. And it is kind of scary too, with me being sick. And it's scary because I'm going to miss the hell out of them. And that leaves me and Lisa as the last connection Courtney really has to her hometown. Which is a whole different thing that I won't get into.

I've started exercising, which I'm really proud of. It wears me out and takes me forever, but I have been doing it every day. I have been doing my stretching/yoga video, and I have even been riding the stationary bike! I am only able to ride for two minutes, but that's something! I've also been doing some isometric exercises. I had been thinking about it, and really this is all I can do right now...but it's better than sitting here doing nothing at all.

What I need is a schedule. A set time I get up, a time to exercise, bathe, do my support group, talk to Bill, get other phone calls done, write, and get some golf practice in. And I want all this to be finished before Lisa gets home in the evening so I can spend time with her. I haven't got that all worked out yet, but I'm sure I will. It's hard to schedule things when each thing wears me out and I have to rest so much. But I feel if I can get those things done each day, I'll be in great shape emotionally and I'll feel better physically too. I'll figure it out.

I haven't had any doctors appointments since I last posted, so there's nothing new there. I'm doing about the same, but I feel a little more hopeful...and I think that's because I'm finding things to do. I still get tired extremely easily, but I feel I'm adjusting a little to that. Or I should say I'm accepting it better, and that's all I can really do.

We also made-over the online support group I co-own. I won't even get into how much time that's taking. I'm enjoying it, but there are times where it is very frustrating. But on the whole, I'm glad I'm doing it. (Just don't ask me about it today! hahaha)

I can't think of anything else major to write. But I did want to get everyone a little caught up. I'm wearing out right now, so I'm not thinking super clearly. If I'm forgetting to say something, maybe one of you will remind me?

stressful day

2005-12-30T00:52:00.000-05:00

I don't have much to say tonight. I did take my 3rd dose of ldn, but the only side effect I'm really noticing is some tingling like numbness in my feet. Other than that, everything seems to be okay.

I do have a migraine, but I know it is due to stress rather than medication or anything else. Courtney's dad was here today and was arriving around the same time Lisa's brother and his family were coming through town. That made me feel like I was truly between a rock and a hard place. I could see Mark and be insulted, or I could go see Lisa's brother and be insulted in a different way...hahaha. Actually, it wasn't funny at all. I chose to stay home and made a call and then immediately went to lie down. In fact, I never did actually see him.

My emotions have been all over the place today, which is no wonder considering. Mark visiting really stirred up some bad feelings for me and seemed to put me in a place emotionally that I couldn't handle very well. As a matter of fact, I was lying here on the couch earlier wondering if I am crazy. I decided I would save that to figure out when I didn't feel so overwhelmed. And I think overwhelmed might just be one of the greatest understatements I've made lately.

Of course, I know that stress really messes with me because I'm ill. However, I also realize that a person who is well would be having difficulty with all of this going on at once. I'm trying to not be quite so hard on myself.

And with that, I'm going to lie back down. Courtney lent me her laptop so I didn't even have to get up for this...that was nice. So all I have to do is lie back and close my eyes. I can't wait.

2nd dose of ldn

2005-12-29T01:04:00.000-05:00

Just to get it out of the way--In all the news I had in my last post, I neglected to mention that Courtney's father is coming to town. That is always extremely stressful for me, so I'm not looking forward to it at all. He always ends up saying something hurtful, and he's a real jerk. I could go on, but it's not important, other than to mention the high degree of stress it causes. Apparently he's going to be around until January 2nd. Ugh.

On Tuesday Lisa and I went and picked up the low dose naltrexone (ldn). The pharmacy is nice, but it was very busy. I finally got the medication, and it's made with the filler that is recommended and everything, so I'm pretty pleased about that. It was also Courtney's birthday--which is always fun for me. A few of her gifts still haven't arrived, but all in all it was a good day. My sister Jen came up (which by the way, Jen, she really appreciated), and I think I mentioned the other people Courtney was inviting. I have to say I was completely exhausted. I still haven't quite recovered from Christmas. So I ended up going to bed very early.

I took the ldn at about 9:30 while some of Courtney's friends were still here. We had moved a television into the bedroom because I couldn't hardly move. Well, then the ldn kicked in. Woo Wee! I know it can cause insomnia, but I don't think I expected the burst of energy. The side effects I have noticed is that I have some tingling in my feet, and my muscles feel very tight. I knew that these were very common side effects. I definitely got the insomnia and vivid dreaming as well. I know those also will pass, but it feels very strange. The good feeling about it is that you feel energized like you do right after you exercise. Of course, this medication boosts the endorphin level so that is to be expected, but you really get a good feeling. I can see why people like it. Already today I noticed I have a little more energy than normal. The only side effect I gained on this second dose is that my face feels kind of funny/numb. But that's already starting to wear off. I ended up being up quite late last night, but I didn't have any trouble getting up this morning even though it was earlier than eight hours of sleep. I'm just now starting to feel fairly tired.

I'm excited about this drug maybe helping me some. I know it will take awhile to be able to tell, and the biggest thing it is used for is to stop progression, but I guess I'm really hoping this is going to do something good for me. I cannot imagine how wonderful it would be if I could stop progressing and stay where I am for a while. I think if I wasn't having so much pain from the cramping and so much fatigue, I could start to maybe do a little more. What I am hoping is that as this medicine is more into my system, or rather after I have taken it for a few weeks, I might be able to restart the Baclofen. That stuff wears me out, but it does a good job on the spasms and fasciculations. (I was having them severely enough that I was watching my shirt jump on Tuesday.) Then once I've gotten that routine going, I can start the Provigil again. My only concern is that it's a little hard to concentrate on the Provigil, but on the other hand I can't concentrate when I feel like I'm going to fall over from exhaustion either. So anyway, that's what I'm hoping to do. Or at least find the right combination where I can feel a little more normal again.

I realize that I'm a little hyper. I can't figure out how to divide up the paragraphs, etc. Oh well, it's not like I write this for grammar points. But I also realize that if I don't sign this off now, I'm just going to keep typing...and I don't want to make everyone suffer...hahaha

Just pray that this medicine helps me!

Merry Christmas!

2005-12-27T00:33:00.000-05:00

I haven't written in a while, so I have tons of things to say...which is different! hahaha

I saw my neurologist on Christmas eve, and once again he spent 45 minutes evaluating me. I feel so lucky to have him as a doctor, given how thorough he is. He doesn't see much muscle wasting since my last visit three months ago, which is good. There is a slight change, but he said that could be due to water weight, etc. However, my legs are weaker than they were at my last visit. There is also a small decrease in strength in my arms. Of course, I knew those things for the most part, but it's good to have it documented. We talked about referring me to an ALS/MND specialist, however I told him that since there isn't any real treatment available for me right now, I'd just as soon stay with him. I feel very comfortable with him, and I really can't see leaving to start over with another doctor. He did prescribe the low dose naltrexone (ldn) for me, which I was sort of hoping he would. I asked him if he thought it would help, and he did think there was a possibility of it helping reduce the spasticity in my legs, and perhaps would give me some increased energy. Certainly we both agreed it is worth a try. It probably isn't covered by my insurance, and when I checked the cost it is $40 a month. However, if it works, I'm more than willing to pay that. The other thing about the ldn is that it has to be gotten from a compounding pharmacy. He suggested one in New Castle, and after I called my regular pharmacy, they also suggested I go there. We were able to fax my prescription in, and I we have to go pick it up tomorrow. The pharmacist was very nice, and even offered to mail me my script, but I want to start it as soon as possible. As much trouble as I've been having lately with medications, I want to take it when there are going to be other people home. So I'll start that tomorrow night. It's only once a day, which is also nice.

Courtney and Lisa put up the tree Christmas eve and it is just gorgeous. Courtney pretty much designed it. I had only wanted to have lights on it, instead of ornaments. I kid you not, I dreamt it and it looked good, so I suggested it. She did wonderfully. She did add some ornaments, but only used glass ones and some white opaque ones. And we only used white lights. We've never done it before, but it looks great!

I stayed up very late into Christmas morning (I'll explain why in a minute). I just had the Christmas lights on, and it was really neat. I watched the Mormon Tabernacle Choir, which I really enjoy, and watched a Christmas concert from a university in Nashville. They were good too, but of course not near as good as the first program. It was very pleasant.

Christmas was also very good. We got up and opened gifts, and Courtney really seemed to like what we had gotten her. I got a golf chipping net, which is really cool, and My Life by Bill Clinton. That was a really nice surprise, as I love that book. Well, I like the guy, so that shouldn't come as a surprise.

We went over to my parents in the very late afternoon and open gifts and had dinner. That was nice, and then we headed home. My sister, Jen, came over afterwards and we stayed up until the wee hours of the morning talking. I haven't done that in ages...and it was so nice. I enjoy talking to her, and it was nice to have company at a time I wouldn't normally sleep anyway. That was one of the best things about Christmas, honestly.

Today, though, I just crashed. I had been gearing up to have enough energy for Christmas, and it completely wiped me out. My legs have been hurting very badly for a while, and I'm still running a low grade temperature. I had a few drinks yesterday just to get through the pain. In most ways, I prefer that to the dullness I feel on pain medications. Which is another thing...you can't use narcotics while you're taking ldn. I haven't been for quite a while, but when I found out I was going to start the ldn Tuesday night, I have been making sure not to take them so I don't feel like I need them as much. I ended up sleeping off and on most of today, and if I've ever felt like I hit a wall, it was this morning. I'm also having some totally unrelated shoulder pain, which is driving me batty. I hate being sick, and I know it's all much worse because I'm running a fever. But I did make it through Christmas! Now I have to just make it through tomorrow.

As I write this, Courtney is now 21! It's hard to believe she was born so long ago, when it all still seems so fresh in my mind. We're planning on a nice day tomorrow. Courtney is having her best friend and her fiance over, and her best guy friend in the world, Bryan, is coming from Ft. Wayne. My sister is going to be here as well, and that's going to be a pleasant time, I think. We're going to order take out Chinese and just have a thing here at the house. That's going to be so much easier for me than it would be if we were going out. Some of Courtney's gifts that I ordered haven't arrived yet, but I'm hoping they'll come in the mail tomorrow. We only need to exchange one thing from Christmas, so Lisa is going to do that and pick up a small gift for Courtney in the morning. The only thing I have to do away from home tomorrow is go to the pharmacy and pick up my med. It's a bit of a drive, but hopefully the weather will be nice so it will be a pleasant drive.

So I've really had some pretty great days lately! I'm not feeling very well, but I've still had a good time. And I'm looking forward to Courtney's birthday celebration tomorrow. Now if I some of this pain and cramping would go away so I could just sleep soundly...hahaha. I know, I can't have everything. But I sure have a great sis, a great partner, and an especially great kid. Now if I could just talk to Bill....hahaha. I do feel very blessed.

nothing new

2005-12-23T03:46:00.000-05:00

Not much new to say, just that I feel very worn out. And yes, I know how late it is. hahaha

I just don't seem to have any energy anymore...and that's driving me nuts. Tomorrow I will see my neurologist, so hopefully there is something that he can suggest that can be done.

It just seems like it takes so little for me to wear out. I went out with Lisa Wednesday evening for a Christmas get-together, and all day today I've just been sore and tired.

I'm really getting tired of saying I'm sore and tired. I guess we'll just have to see what tomorrow holds.

a short vent

2005-12-20T00:20:00.000-05:00

I'm going to warn you before you start reading this that I'm pretty bummed tonight, so I'm going to vent. (We call it that in group...I think it's just a nice word for whine and complain...hahaha)

I'm starting to feel depressed again. We still don't have any Christmas stuff up, and that's sad. (Although I am thrilled that the gifts are all purchased and pretty much wrapped!) I think some of it has to do with Courtney. She's upset about the amount of time I spend on the computer. I don't feel like I'm on it that much when she's home, unless she's doing something else. She says she does other things because I'm on the computer. *sigh* She left for the weekend and is going to be busy the next couple of days. I don't know why that's bumming me out, but it is. On one hand, I really like quiet. On the other hand, I really want to spend time with her.

I guess the computer has become a big outlet for me. I spend a lot of time running the online support group with Leslie, writing to people besides me who are really going through a lot with their health. I also enjoy playing games at one website, because I have met several people there and we chat while we play. I guess in a way it's like having company. It's silly...I always thought being on the computer that much really makes you a nerd or a loser. Maybe that's what I am. I don't know. But it is good for me to talk to other people who are ill as well...some things are almost impossible to explain to people who are well. You can say things like "I gathered the trash and I'm really tired", and they can truly be empathetic.

And of course today I was feeling pretty stiff and sore and tired from doing things this weekend. I suspect that has a lot to do with how depressed I've been feeling this evening. It's frustrating to feel sore like this, and it's very upsetting how little it takes to make that happen. Maybe I'm just mourning the loss of being well. I don't know.

I guess I'm more frustrated than depressed, and I just don't know what to do with it. It really sucks being ill.

a new desk chair

2005-12-19T02:01:00.000-05:00

Unfortunately, I'm still up as I'm feeling awfully sore. However, earlier in my haste to post quickly, I didn't share a bit of good news.

Lisa and I went and and picked up a new office chair for me! It is soooooooooooo comfortable...I've needed one for a long time. It has a nice high back so I can lean by head back when I want to, lumbar cushioning, it rocks, adjusts all kinds of ways...even the arm rests are comfortable! Makes sitting here at the desk much more pleasant and comfortable. Lisa also fixed my keyboard drawer, and that helps too! So I'm feeling pretty high fallutin' right now! I can put my feet up on the desk...pretty snazzy, huh!

The only real downside of today (besides the fact that I'm pretty sore and stiff), is that I didn't get to my sister's music concert. I was really hoping to go, but we needed to get the last stuff done before Christmas while I felt well enough to do it. So I'm bumming about that, but like I mentioned earlier, it sure is a relief to have everything done. That's really been weighing on me.

Of course, now that I have my new chair, I don't have a very good excuse not to post unless I'm horizontal. But I'll take it! Ahhhhh! And it's one less thing for me to complain about (hahaha)...but I'll take that too! I have a feeling everyone else will as well. *wink*

feeling better

2005-12-18T23:17:00.000-05:00

I don't want to be too hasty, but I think I'm starting to feel a little better. I think I've been fighting off that cold, etc., for quite a while and that was probably contributing a lot to how I've been feeling. I've had a bit more energy the last two days, although I'm kind of sore from doing things. I would imagine that would be the case with anyone who's been down for over a week from not feeling well.

I believe we have our Christmas shopping done, which is such a load off. And the cards are all sent...now maybe I can just relax and rest up for the actual holiday! It was great to get out and get some of that stuff done though. I used the scooter at one store, and the other few places we were at this weekend, we picked smaller stores so I wouldn't have to walk too much. So hooray...I feel like I've accomplished a lot!

I'm a little worried about how I'll be feeling tomorrow, but at least it's a start in regards to doing a little more again.

Now if I can just get some rest...hahaha

tired

2005-12-13T01:39:00.000-05:00

I'm still feeling really tired and weak. Not sleepy tired, mostly muscle tired, but it really wears me out. I wish I knew what was going on. The only thing I can figure is that I'm trying to fight that virus that Lisa has...or rather, brought home to share with me. hahaha

Another thing I have noticed lately is that around 11:30 or so, I start feeling kind of weird. I don't know how to explain that either, except for it's almost what I think it would feel like right before a person has a seizure. Just a weird feeling...I just feel off. Eventually it seems to go away though. I keep thinking it is medication related somehow, but I haven't figured out how yet. Just another weird thing about me, I suppose.

I'm going to take my last dose of meds and try and get some rest. Maybe tonight I'll sleep a little better. I wish my body felt more rested!

random stuff

2005-12-11T23:50:00.000-05:00

I did finally sleep, although I haven't had much of a restful sleep. That's kind of unusual, because after I go through one of those nights, I usually seem to catch up in the next two days. Maybe tonight.

Lisa had her work Christmas party on Saturday. I did manage to get there, but not until it was almost over. I had taken a bath, which wore me out, so I had to rest after that. Then I stopped to get my hair cut, and had to rest after that. I should have known when it took all that energy that I was needing to rest more than normal. Lisa brought home a cold, and I seem to be fighting the affects of it mostly in my muscles. I'm aching, and completely worn out. I just feel yucky. And I have a headache, which is really annoying. She's already starting to feel a little better, so I hope this passes for me pretty quickly too. So basically I have spent most of the weekend resting. As opposed to what, I don't know, since that's all I seem to actually do anyway.

I did start my stretching DVD. I knew I wasn't very limber....my goodness, even the easiest stretches are pretty hard for me. You wouldn't think stretching would be quite that difficult. It has a test portion, where you see where you are at so you know what level to start at. I was sure I needed to start at the first level, but I thought it wouldn't hurt to go ahead and see where I was so I could see how I improve. Geez...I'm stiff as a board. I need to stick with this though, I think it will really help me to feel better and hopefully fall a little less. I haven't fallen much this weekend, that's a bonus. Of course, I think you have to be more upright to fall. hahaha

I did do a ton of Christmas cards today, and got some shopping done online for Courtney's Christmas. At least I can feel like I accomplished something today.

On that note, I think I'm going to lie down again. I really feel crappy. I'm supposed to go to crazy people therapy tomorrow, but I'm going to have to see how I'm feeling. It's going to have to be a darn bit better than this!

still awake

2005-12-09T06:02:00.000-05:00

This is absolutely bloody ridiculous. It's 6:00 in the morning, and I still haven't gone to sleep. I haven't even gone to bed.

This is one of the problems I wish they could fix, but I don't even know what it is. I didn't take the Provigil today, nor did I drink any caffeine. I didn't even sleep too much in the last 24 hours. It feels like my body gets too awake...like the nerves are all going. I haven't figured out how to sleep when it does this. My brain feels tired, but my body isn't restful.

I really hate nights like this. It's lonely and very upsetting to me because I know it will take a mess of work to get myself turned around tomorrow. This puts me off schedule with everybody, and I'll have to work at not sleeping too much during the day.

I guess it wouldn't be so bad if it didn't happen so often. At least twice a week this occurs, and no matter how I try, I can't seem to find any pattern to it...any clue as to why it happens.

So after a very long night of sitting and staring at the walls, the computer, etc., I'm going to try and lie down again. This is another thing that seems to be caused somehow by my illness that I really struggle with. Now if I can just get up by noon....

a peaceful day

2005-12-08T23:54:00.000-05:00

I managed to do exactly what one would expect. As soon as I felt better, I ended up overdoing it and am really hurting pretty badly. But I'm glad I got everything done.

Yesterday, knowing we were to get a pretty big snowfall today, I went out and picked out Christmas cards to send, stopped at the medical supply place to get a new tip for my cane, stopped at the store, and did the shopping I needed to do for my siblings' gifts. It's safe to say that was too much. It did feel good to accomplish all of it though. I think I got sore more quickly because I hadn't done anything in so long, and when you're trying to get things done you don't pay attention to how worn out you are. You just keep going. So my muscles are pretty achey all over.

I still haven't started my stretching video. I kind of had to let today be a down day. I was moving at turtle speed and didn't think starting my exercising was going to help.

I rested quit a bit today, but I do have to say it was an absolutely gorgeous day out. We had a great snowfall and I sat and watched it out the window with Bear (the big dog). She really wanted to go out and play in it, but I was afraid I wouldn't be able to get her back in. But I sat in my chair by the window, watched the snow while I had a big fire going. That was really great. And it was so peaceful! All quiet outside...I think I needed a quiet day like this. My emotions are so much better now that I've gotten everything straightened out with my medications.

Lisa and I have a pretty good system going as far as heating the house. She gets up and starts the fire, and then when I get up I just have to keep it going. Of course it doesn't heat the whole house, but the half the house stays very nice and warm, and I use my space heater when I'm in my office. And I do like having a fire...it's very comforting. The reason I brought this up is because when I woke up today, I kept waiting to hear the blower going on the furnace. I like to wait until I hear it, that way when I get up I can go straight in there and get warmed up pretty quickly because I'm always freezing when I wake up. So I'd wake up, not hear anything, and doze back off. I did this off and on for about an hour and a half before it dawned on me that perhaps she didn't have TIME to start the fire today. So I thought, well, I'll just stay right here until she gets home for lunch. Then it dawned on me that what if she didn't come home for lunch? I would end up with bedsores! hahaha So I finally just got up. How's that for lazy?

I STILL haven't typed up my notes from the meeting. I really didn't feel up to doing anything today, other than vegetating. But you know, sometimes that's the best kind of days.

glad that's over!

2005-12-07T02:40:00.000-05:00

It took until tonight, but I finally feel more like myself again. I had no idea until I talked with my therapist how long the Seroquel stays in your system, and how dangerous it was for me to be at that dose. Normal dose for depression is 50 mg. at bedtime...I was already taking 300 mg.! She told me that at that dosage, if the medicine is not needed, you could actually have psychosis. I can tell you right now she wasn't kidding. I took the last dose two nights ago, and started thinking I heard people talking in the kitchen. And I was getting pretty batty. (Yes, you really could tell a difference...hahaha)

I called the doc, and he ordered me a different medicine. So last night we went and picked it up. It's the same type of medicine he ordered before, only less strong. However, it has severe warnings for liver problems. Needless to say, I didn't take it. I have already made an appointment to see a psychiatrist, which my internist wanted me to do anyway as he admitted he isn't a specialist in psychiatry himself, and I'll see him in January. In the meantime, I put myself back on my old antidepressant...it doesn't work great, but it's better than nothing. And in comparison, I feel wonderful! That was a strange ride, let me tell you.

I STILL haven't written out my notes. I don't feel too bad about it though, because it's not like I've been feeling that great and just didn't do it.

Monday night was the ALS support group meeting. I really like going to it, although this week was weird because I was the only patient. There were the two facilitators, me, Lisa--who was the only partner there--and everyone else were there because they lost someone to the disease. Talk about feeling weird. I felt like we spent too much time talking about how I'm doing, and frankly I'm not real comfortable with that right now. Well, most of the time I'm not. That I don't know how to explain how I feel is a big problem, and I don't like all that focus on me. Hard to believe, but it's true. The guy who's my age wasn't there this week, because he is having some problems adjusting to losing his voice. He can barely talk, and it's very raspy now. He can't write either, because it has affected his writing hand. I can't imagine going through all that. I feel so fortunate that it has affected my legs first. It's a relief in a way.

I have to say after all this mess with medications over the last week or so, I'm very glad to feel halfway normal again. My mood has gotten better and I am getting some of my energy back. The extra Xanax XR is helping too, as it is stopping a lot of the spasms I've been having. And my stretching DVD's arrived today! I haven't tried them yet as I wanted to give myself another day to recover, but I'm excited to get started with it. Just the thought of doing something is encouraging.

The only other thing that is new is that I've really pissed off some members of the low dose naltrexone group. I had been looking into it as a possible treatment for me, and a good friend is using it for her multiple sclerosis. I feel kind of bad about it, but this woman won't get off my back because I said that perhaps some people can't tolerate the side effects. Explain to me why that was wrong. Well, don't, because there are a couple of people there who won't QUIT explaining it to me. hahaha It's kind of funny, but whatever. Leslie and my group is doing fairly well, which is good. It's weird how busy it keeps me one day, and then the next I don't have much I need to do. But it is good for me, I think, to have that constancy going on with something I'm involved with.

I probably should try and get some sleep now. I wanted to make sure I let everyone know that I have recovered from my meds and hope to be a heck of a lot better tomorrow!

medicine for depression?

2005-12-05T02:07:00.000-05:00

Well, crap. I didn't make get a post in on the right calendar day, Bill. Does it count in the spirit of things if I am still up from the day of the 4th? Okay, probably not.

I don't know why I wouldn't say what med it is they prescribed. I guess because I'm embarrassed about it because of what people will think. Hell...I don't really care. My internist prescribed Seroquel for my depression. What's awkward about the medicine itself is that it's usually used for bipolar disease, psychosis, and schizophrenia. However, it is also used off-label (prescribed differently than it's intent) for severe, intractable depression. I've been so mad about what he ordered that I haven't been able to think straight. Okay, that's not exactly true...it's also because I can't think straight on the medicine.

I waited longer to write tonight. I took my medicine and then immediately started this. It took from 11:00 am until now to be able to think clearly enough to write anything important to me. I've been confused and drowsy all day. At times my eyelids seem to heavy to hold up.

I've been trying to figure out why on earth my doc prescribed this med. He went through my chart and he knows I've never had a problem with mania (other than the day I like to call my Paxil day that I had last week...hahaha), never had schizophrenia, psychosis, or bipolar disorder. As I look back, he prescribed it right after he was reading the letter from my neurologist. (My internist is very good about going through all the lab work, letters, etc., with you during the appointment.) Maybe he thinks I'm depressed enough to need this because of my diagnosis and course of illness. I've never had him order something so off the wall before. Leslie (whom I own the chronic illness group online with) likened it to treating a headache with morphine when a Tylenol would do. I think she might be right on with that thought. I am going to call tomorrow and ask if being a zombie is really the effect we wanted here. I have a feeling that's taking it a little too far. hahaha

I still haven't typed out my notes from hearing Dr. Pascuzzi talk the other night. Frankly, I've just been too tired to be sure I get it all down. I have to say, I was absolutely intrigued by what he had to say. If I hadn't been feeling so awful, I probably would have been giddy about the progress being made in treatment, etc. I'm going to try get that written out sometime tomorrow to post here. One thing I'll mention tonight is that the illness tends to progress in the manner it starts. So if you are going down the slope slowly and not too steeply, you tend to continue to progress that way. Actually, that has pretty much been my course. When I look back, I believe I had onset of symptoms probably a year before I saw the doctor at all about it. However, if you start out really badly, you tend to go downhill at that rate as well. That's good to know for me, but I feel bad for other people who have a different course.

Another thing I'm noticing on this medication is that I'm really in a bad mood for the most part. I don't know if it's because I'm so tired of feeling drugged, or because I'm just fed up with stuff, if it's a side effect, or what. It's not constant, but occasionally I'll find myself sitting here thinking damn, I'm pissed. WTF? And I can't quite figure out why. I know, it's hard tellin' with me.

I did do some shopping done online this weekend. I ordered the gift certificates for Lisa's nieces and nephews, and got a shirt on e-bay that I liked a lot (and it was cheap!). I also got a stretching video I've been wanting that I think might help. (I'm using my golf winnings to pay for that.) I can't really do active exercise, but being more limber and such will really help me in regards to falling and stuff, I would think. (And maybe it would help my golf???) Any kind of exercise is good. I would like to start back up on my PT in the water, but my ability to drive is so inconsistent that it makes it hard to do that. I'll have to see what can be arranged that way.

I think that catches everything up except for Dr. Pascuzzi's talk. Now if I just can find the energy to write it out...hahaha. I'm already fading, so I best get to lying down before I fall over.

And if you're wondering, I'm not planning on having any psychotic episodes tomorrow. hahaha

side effect

2005-12-03T13:32:00.000-05:00

I suppose I should start with why I haven't been posting. On Wednesday morning, I started my second day on a new antidepressant. I started feeling very hyper. I think I mentioned all of that in an earlier post. Well, a little after 1:00 am, I started getting a little panicky since I wasn't slowing down very much. My legs had been jerking and having spasms and I was just then starting to really feel the pain.

I called the pharmacist, and he went through all of my medications. He didn't think it was the Provigil, as I take it often enough I would have noticed this before. Also, since it had never lasted like that on the Provigil, nor will the drug stay in my system that long, he ruled that out. He also ruled out any interactions between my meds. The other thing was that I've never felt that manic on the Provigil, even when I do have a little run of super energy. He thought it was probably the Paxil, since it was the only new drug. He told me not to take it in the morning and to call my doctor when I got up. He also suggested I take a fast acting Xanax to try and get me slowed down. So I did that, and finally fell asleep a few hours later.

The whole experience scared the heck out of me. Of course, now I don't want to take any meds at all. But I guess that's not going to happen.

I called the doctor and waited all day for them to call me back as to what to do. When they did, they told me to start back up on my old antidepressant, increase my long acting Xanax dose to try and calm the spasms, and that the doctor wanted to see me right away. So I made an appointment for Friday afternoon. He prescribed a new med (which I'm not going to go into right now) and from everything he told me, it should help. I started it about an hour ago, because I didn't want to start it any earlier when I'm going to be home alone. He said the problem wasn't a side effect, but I really think it was. I've had some killer side effects in the past with some meds. The other thing the doc told me is that I need to get back to using a cane, just to be safe. Wonderful.

I have to admit I'm hurting like hell, although it's a little better this afternoon. Going that long with such intense spasms is very painful. On top of that, I wasn't sleeping well. I would nap, be awake for a long time, and then nap again. I couldn't get a full nights sleep. Now it feels like I've got a vise clamped down on my major muscles. Especially thighs and upper arms. This is all why I haven't felt well, etc.

My biggest problem now is that I'm really frustrated. I don't like the med he ordered at all, although I'm willing to try it as I don't really see an alternative. (No Bill, I'm not playing doctor...you wouldn't like this either.) I'm tired of hurting and I'm in a really, really bad mood. I can't decide if I just want to let myself be sick and have everyone leave me alone (although that does sound good), or if I just want to get away from everybody, go someplace warm like Florida, and golf and fall down and golf some more. At least that way I'd be warm, I could be out in the sun, and nobody would bother me there either.

Of course, I'm sure part of my problem is that I'm lonely because I don't feel well and don't feel well enough to do anything. And I feel very alone with all of this. I like to be different, but this is just stupid.

Speaking of stupid, the next person who says to me, in ANY variation, "you must be really tired of feeling sick, huh", or "this isn't very fun for you, etc."---I'm going to say no, I quite enjoy it, thank you. And then I'm going to smack them. Aren't these incredibly stupid statements? I know, let's try NOT pointing out the obvious to me. Of course, on the other hand, making statements of that kind, especially in that way, makes sure that I won't have anything to say. And I don't buy the "people don't know what to say about it" crap. Suggestion. Then don't say anything. And my illness and how I feel is not small talk.

I did learn some interesting things the other day, but it's going to wait until I feel like posting again. I took the new med not very long ago and now I feel extremely tired, I'm having trouble focusing my eyes, and I feel like there's a crushing weight on my head (although not a headache). And besides all that, I'm afraid my computer is going to catch on fire from me being so angry.

didn't want to miss a day

2005-12-02T00:08:00.000-05:00

I can't write tonight. I have lots of news, but I'm doing very badly. I'll explain later.

the letter p

2005-12-01T01:00:00.000-05:00

Look at me! You could almost accuse me of being consistent, given I've posted three days in a row! hahaha

I have not been having a fun day AT ALL. I think my Provigil acted up on me again. It's only happened a few times before, but it's awful when it happens. About 2 1/2 hours after I took it, I became what could only be called manic. I couldn't sit still, I felt hyper...I can't even describe it. Like I said, the only thing it remotely resembles is mania. I hadn't taken the Provigil for a while, so I don't know it starting it up again caused it, or if it was the Paxil or what. But I have done it before, and it is hell. I don't feel bad or anxious with it, exactly, I just can't be still. And my brain kept telling me to go go go and my body couldn't hardly keep up. Several times today I started to fall and I ended up almost running to catch myself. It's like most people do when they trip, only this is the muscle trying to give out in my leg. I can't do that at any time anymore...well, except for on this. I knew I needed to sit down and focus, but that was hard too. I hate when I'm like this, because even I think it's annoying. And my legs are hurting like hell right now from all of it.

And I believe I'm engaged in a phone war. No Bill, not with you. You know to call me on my cell if you want to get in touch with me and I'm not answering. My mother started something this weekend. She called, and I didn't go get the phone right away because I wasn't feeling well. The phone then proceeded to ring three more times in a span of about five or six minutes. My nephew was here so he brought the phone to me. It was my mother. She said she figured if she kept calling, I would eventually get tired of listening to it and go ahead and pick it up. Well, damn it! Generally if I don't answer the phone, it's because I don't feel well or I'm trying to sleep. Ringing it off the hook is not going to make me answer it. In fact, quite the opposite. I didn't answer it but one more time and that was because I thought it was Lisa on her way home. I figure this was mom's doing because I checked messages and the only message that was on there was mom...and it registered at the time the non-stop phoning started. Now admittedly, a few of those calls could have been someone else. But I don't think I need the phone to ring six or seven times in less than 45 minutes. I really don't want to get caller ID, because who is calling is not why I don't answer the phone. I'm really pissed that this seems to have started and I don't want the stress of dealing with her about it, but I don't see that I have a choice. *sigh*

Okay, I'm going to stop. Believe it or not, this is positively calm compared to earlier. I'm typing so fast it's ridiculous, and I can't focus on what I'm writing. I hope I can sleep sometime tonight...

Hmm. Provigil, Paxil, and phones. Today I'm really hating the letter p.

Jen, the smartest sis in the world

2005-11-30T01:53:00.000-05:00

What??? Two posts in two days??? hahaha

I had some great things happen today. First off, I have the absolutely smartest and bestest sister in the world, Jen! She sent me an e-mail mentioning that I should ask my pharmacist which Medicare plan to pick. What a great idea! Now that she said that it seems kind of obvious, but I would never in a million years have thought of it. That takes such a weight off regarding the whole process. Next time I need to remember to ask you, Jen, before I spend forever beating my head against the wall on something like that. Thank you, thank you, thank you!!!

Having a little trouble calming down about that, as I just found out shortly ago, but I'll try and proceed. hahaha I talked to Medicaid today and my doctor's office, and after about five phone calls, we have figured out I can continue to see my main doctor (the internist). They are sending a letter to Medicaid explaining that I am their patient, and apparently that should stop this whole mess. I just need to go to the doctor's office and sign the form they're sending in. That's a huge relief too.

And I didn't go anywhere today, but I actually got some stuff done! I cleaned out the fireplace, took the ashes to the garden, built a fire, brought in the wood from the garage and two logs from the wood pile, took out the composting stuff, and got the trash can. I admit it took me forever to get all that done because I have to rest so much, but for me that's a ton of stuff! I felt bad because I wore myself out enough that I fell asleep this evening while Lisa and I were in the living room, but she was super great about it. And I slept like a baby for several hours, which I desperately needed...I just wish I wouldn't have done it when I could have been visiting with Lisa. BTW, Lisa, thanks for the comment! I'm kinda fond of you too!

I should try and get back to sleep, but since my day ended up pretty good, I definitely wanted to share it!

survived Thanksgiving

2005-11-29T00:25:00.000-05:00

I survived Thanksgiving! hahaha Courtney had friends from college here for the holiday, and that was nice, but I'm still not used to having other people around. It makes me a little more stressed than normal. Probably just because I'm used to it being so quiet all the time. I like that, as it's less stressful, but it is a hard adjustment when there are people here. I don't seem to do change very well.

Speaking of change, I have been messing with my Medicare prescription stuff. I can only conclude after spending hours and hours on this stuff that it is debatable that it's the biggest waste of taxpayer money in history. I cannot figure out, besides insurance companies, who actually benefits from this.

Like everyone else, I was automatically assigned a certain plan. Well, giving I'm not sure why they picked it, I started going through the 40+ choices I had. The biggest problem is finding a plan that covers all the drugs you are currently on. After spending probably a total of 20 hours researching over the holiday weekend, I have yet to find a single plan that will cover all of them that I take. And of course, the ones they tend to not pay for are my more expensive drugs. No, I'm not shocked. To make it even more fun, I am also on Medicaid, which makes the whole thing even more complicated. They help cover your premium on SOME of the plans, but it changes your choices somewhat. I am so tired of looking at Adobe files of drug listings I could scream! It really makes you want to never need to see a doctor or get a prescription again in your life.

The same day I was working on the Medicare plan choices, I received an item in the mail from Medicaid, saying that since I haven't chosen a doctor, they have picked one for me. That's what has me the most stressed. I used to go to the doctor they picked for me. He's nice enough, but he's kind of weird and he has no experience with chronic illness...as he will admit. He just threw drugs at every problem I had for a while, and then suddenly said I didn't need them because he didn't know what was wrong with me, and why some of them didn't work. Well, maybe if we had done some actual testing he could have figured it out? This change is supposed to go in effect on December 1. The other thing that burns my toast about this is that I really have a good relationship with my current doctor, and he's been treating me since before I was even diagnosed with the MND...he was the one who referred me. I'm really comfortable with him as well.

So today I called his office, and his office manager said to not worry too much, she'll fill out a form for me to give my caseworker, saying I am on their rolls. As if I even know who my caseworker is...it has changed three times that I know of in the last year. But it sounds like I'm going to have to go to their office and pick that up by, oh, tomorrow??? so I can get it to the Medicaid place in time.

While I had the doctor's office on the phone, I told them I'm really having trouble again with my depression. I'm having trouble sleeping (partly because I hurt though), and I am terribly depressed. So they switched my antidepressant from Lexapro to Paxil. I did okay for about six weeks when I was on Paxil before, and then I just tanked. However, I hope it will work a little better this time. It's very frustrating feeling this way. Also, Lisa took my Provigil prescription in to be filled, so now I don't have to worry about running out. There has always been a concern that the insurance I have will not pay for it...but so far, so good. So I can restart the Provigil tomorrow as well.

There is a ton of stuff going on, but the only other thing of note regarding my health is that we're going to a thing on the 1st in Indy where one of the leading ALS doctors is going to talk about treatment trends, etc. It's kind of a holiday gathering as well. I may have mentioned this before, since I don't go back and read my blog. However, I am looking forward to it. I have quite a few questions, and am interested in hearing what he has to say.

Well, I don't want to write too much since I haven't been doing it lately...I hate to wear myself out all at once! hahaha I could go on and on about the depression, but since everybody feels that way once in a while, I think you get the idea.

I really am trying to write more...I know you can't tell, but I am going to make an effort again. It does help me to get all the stuff off my chest, and for some reason I just don't do it. But hopefully I can get started again!

Happy Thanksgiving!

2005-11-24T03:09:00.000-05:00

It's obviously very late, and I'm up because I'm not feeling very well...I'm really hurting a lot. I fell and hit the same spot two days in a row, and now that's hurting too. Of all this body to hit, you'd think I'd try a little variety. Oh, well.

I'll try and write more later in the day, but in the meantime, Happy Thanksgiving everyone!

answers to comments

2005-11-19T20:43:00.000-05:00

Today I'm going to post about a few comments that were made that asked me some questions. They're kind of buried in my blog, so hopefully I can answer them here okay.

I started writing this blog on December 9th, 2004. That was the day I was diagnosed formally with motor neuron disease. I actually found out November 24th, 2004. The day before Thanksgiving last year. I had an EMG that day that was performed by my neurologist, and he told me after doing the test that he felt there was motor neuron involvement. I was hoping he was wrong, but I knew then that I had it. I just waited to start this until my next appointment with him, when he sat Lisa and I down and told us. So Thanksgiving is a super weird holiday for me right now. hahaha

The first entry in this blog explains why I decided to write it. But it comes down to that I want to be able to document for others what this is like and what I'm feeling. It is also so I have a way to express how I feel about what's going on. Sometimes it's much easier to write than it is to say, and this way I don't have to repeat myself too often! hahaha Another thing is that I don't go back and remove what I write. Nor do I go back and read it. I don't think I could handle it. The only editing I do is when I realize right after posting I have forgotten something. Kind of like this part here. An add on. But after I post it, I won't read it again. Maybe someday....

There are scattered comments in here about stem cell research. I do believe that is my one true hope of recovery. There are drugs I can try, but I truly believe if I am to be cured, it will be done by stem cells. I can also say that I would be the first one to volunteer for that opportunity...no matter the risk. And I hope that the person who has been commenting on that has very good luck with their research as well.

I also want to thank Bill for his frequent and sometimes odd comments...hahaha...I'm glad I can share this stuff with you. And Jen, I know you read it and don't comment too often, but I do love hearing from you! I miss you, you nut! Isabo, I haven't seen you lately and I hope you're okay. You need to write! And everyone else (you too Lisa), I really appreciate you taking the time to comment on this. Geez--that sounded like an acceptance speech for an award or something! Not what I meant to do...hahaha

Also, I wanted to remind everyone (especially the stem cell research person) that if you would like to comment to me personally as well, I can be reached at bbddcat@sbcglobal.net I receive comments by e-mail when they are posted, but I can't respond to them from there. I do enjoy everyone's comments a lot. It helps me know that there are people out there that are interested enough to take the time to do that, and that what I'm doing is important.

really bad few days

2005-11-18T01:06:00.000-05:00

I wanted to write a short note and let people know what's going on with me.

I am not doing very well at all right now. I'm having very severe bone pain and I am very weak. My sleep is messed up from hurting so much and the fact I can't get comfortable. In fact, I spent today falling in and out of sleep, and I think that was from sheer exhaustion.

I also did something stupid. I went out Wednesday evening for a bit because I was so restless and lonely at home (and Lisa was there...you goof!). I went to a place that isn't handicap accessible at all...particularly stupid because I was in so much pain. And rather than feel like I had a chance to visit people, now I feel even worse. The only good thing that came out of it is that I realize that I'd rather spend time in the future on the couch alone than do that again.

I think I'm going to have to call my doctor tomorrow. This pain is ridiculous, and I can't walk 10 feet without feeling I need to stop and rest.

And Bill, I will try and call you tomorrow. I haven't even felt up to getting to the phone. Hell, I haven't even felt up to getting on the computer until this evening...but thank you for the hilarious e-mail!

I hate feeling this bad. But this too shall pass.

low dose naltrexone

2005-11-13T23:07:00.000-05:00

I have many things I could mention today, but the main one is that I think I'm going to ask my doctors to start me on low dose naltrexone. Apparently many people with MS, ALS, MND, and other neurological illnesses have had great success with it. It apparently helps the energy and seems to slow and even stop progression in some people. Also, some people say they have improved on the drug.

Naltrexone was originally used at high doses (75-150 mg.) to help with heroin and alcohol addiction. It wasn't particularly successful, for one reason because at these high doses it seems to shut of some of the pleasure centers of the brain. However, this dose is miniscule (3-4.5 mg.) so you don't have that problem. Don't ask me how it works, because I'm still pretty unclear on it. You actually have to find a compounding pharmacy because they have to take the higher dose medication and formulate it into a small dose. That makes it kind of complicated as well.

A friend of mine I know very well online, Leslie, has just started the drug. She has relapsing/remitting MS. (She's also the person I co-own the chronic illness group with.) I'm very interested to see how she does on it.

I guess this is a big deal to me because it signifies I am now ready to try anything to stop this. I think worse case scenario with the ldn is that it won't work. It has not been through any clinical trials yet, mainly (I would imagine) because there isn't any money in the drug. It's gone to generic, so it's very cheap. It seems as though the drug companies and such, who usually fund the trials, don't like to do it if they can't make a ton of money. Of course, I realize they are businesses, but hell, you'd like to think they'd at least try to see if they could help people. So trying this medication, for me, is like just tossing up a balloon and seeing where it lands. But I've got to do something.

However, back to trying things...after going to the ALS meeting last week, I realized that I absolutely do not want to die. It's not that I did want to before, but it's easy to just go coasting along and not think about that too much. And to be totally honest, I really feel I have gotten much worse in the last month. I'm still walking and such, but I am getting exhausted doing even the smallest things. It's so frustrating and very depressing.

So the next time I go to either one of my doctors (I'm scheduled to see both of them within the next six weeks) I'm just going to ask to at least let me give this drug a shot. It can't hurt to try.

I got a job!

2005-11-09T18:42:00.000-05:00

I had a pretty excellent day yesterday! I went out the course I played this year, and they have created a job for me! Starting in March, I'll work at the starter's booth. It won't be very taxing at all physically, as I can either sit inside the booth or outside of it. How nice...to be able to sit on a golf course! My job is to make sure people know the rules for the day, where the pin placements are for the day, be sure everyone has scorecards, etc., and that they tee off in the proper order. They said they want someone who is polite and friendly. (I guess they don't know me that well....hahaha!) I'll be working three or four days a week and the only downside is that it will include the weekends. The great thing is that I will get all my golf there free, a range pass...basically all the amenities of working there. I'm super excited! I've been talking to the owners quite a bit, and I'm very excited that I'm getting this chance. Of course, I was wanting to get a membership at my old course, but I'm thrilled anyway. This will save a ton of money. If I want to play at my old course, I'll just pay as I go. I do want to join the league there, but I don't think that should be much of a problem. I can't describe how much I'm looking forward to it! And how happy I am to have it to look forward to!

Lisa and I went out and celebrated last evening and had a great time too. Of course, today I'm hurting like hell, but that's to be expected I think. I was up and around quite a bit yesterday.

All in all, I am pretty darn excited I have to admit! I also have made another decision about what I want to do regarding my medical care...but I'm going to make you wait until the next post! hahaha Heck, I've got to give you some reason to come back here! As infrequently as I had been posting, I have to bring you all back on a regular basis!

I know I said it earlier, but I am so happy I can hardly stand it! What the perfect thing for me!

ALS/MND meeting

2005-11-08T00:32:00.000-05:00

The three of us went to the ALS/MND meeting tonight, and I'm certainly glad I did. It was very nice...we didn't have a speaker so we just talked. I think I need that way more than I need to listen to speakers. It helps those who have lost their loved ones, and it helps those of us who are sick. It's nice to hear other people's perspective on the illness. Oddly, talking about it in that setting I felt normal.

I also told everyone there about this blog. I have been hesitant to do so as I know it can offend people at times, but I think I'm glad I did. It's like I said early on when I started this...I don't want to censor my feelings or there is really no point in writing this. I want to be able to say the good, the bad and the ugly. And if people get their feelings hurt, I hope they understand that what I write is how I feel that day. As a lot of you know, that can change completely in 24 hours! hahaha

I have been really hurting and tired today. I went to the golf course and looked at the construction of the indoor driving range, but I didn't play or even get to talk to the owner about working something out. I just felt so exhausted, and I knew with that meeting tonight and seeing my therapist tomorrow I wouldn't have enough energy to go around. I hate that the most, I think. But I can't say it makes me angry right now. Mostly I feel it's just a fact of my life.

I hope Heather got something out of the meeting as well...it probably felt weird for her to be there, but I was really glad she was. It's good for her for her career, and I think it will help her when Courtney decides to talk about it more. And in a lot of ways, it's like her and Josh are my other kids. I joke that I adopted them...but truth be told I think they probably adopted me!

I guess I was right when I said I felt I needed to go tonight. I feel a bit of a burden lifted off my shoulders. And I definitely needed that.

some goals for next year

2005-11-06T23:55:00.000-05:00

Well, I finally had enough caffeine to post again! Good suggestion, Bill! hahaha

My daughter was home for most of the weekend, and that was really great! Lisa got tons of stuff done around the house...which I really appreciated. I guess all in all it was a pretty good weekend. We went to the horse track on Saturday because Lisa had a work thing there, and that worked out okay. Since Courtney was home, she went with us and that made it nice for me as I had someone to talk to. I got very tired, but I'm starting to get used to it, unfortunately. All of my family came this weekend, except for my brother, and we celebrated my dad's and my birthday. That was a lot of fun. I got very tired then too, but it was still very nice. I've missed my sister Jen so much! (Hi, Jen! hahaha) It was good to see everyone, and very nice to have company.

I feel like I just don't have any energy. My back has been bothering me lately, and that hasn't helped...although it was better today. It's as if my muscles just don't want to participate in anything. I've been trying very hard to pretend that I'm not ill, but it's not working super well. Apparently, whether I want to acknowledge it or not, I'm still ill. That sucks.

Tomorrow night is the ALS/MND monthly meeting. I can't decide if I should go...but the more I think on it the more I think I probably should. I don't know why exactly, it just seems like I am supposed to be there. Our "adopted" daughter Heather would like to go to the meeting as well, so maybe I should just go. And I figure that if I think I should, then I probably better do it. I just hope it doesn't cause me to be more stressed.

I also have formulated a minor plan in my head. Since I am so enamored with golf, I thought perhaps a goal might be nice. I really want to get a membership at my old club...I really like playing there. It's nice, yet the most difficult course nearby. A lot of the gals I used to play with have gotten a lot better, but I think that would be a nice challenge for me. I also want to get a driving range pass at the course I played at this year, as they are open at night, have a practice area from sand, and are apparently making an enclosed heated area before winter starts. It's a little expensive, but I think it would be worth it. I'm also hoping a can find something to help out with there in exchange for it. I'm planning on talking to them this week about it, since I know the owners pretty well. And I am working out a way to practice on some things at home over the winter, such as putting and chipping. I also want to do what exercises I can do to help my game.

I actually have two goals regarding golf. I think it helped me that I played so many different courses this year rather than always the same one. I think in the long run it will have helped my game. My first goal is to get my handicap to a single digit. It's 18 right now, which is very good I think, but probably that high because I didn't consistently play at one course. My second goal is to play in as many tournaments as possible. I think for mixed couples, I have someone to play with who is a great golfer and owns one of the local courses. But I want to play in as many as possible...I've not had that experience and I'd really like to do that. I want to play in any and all that I am qualified for. I want to see how competitive my game is, and how well I can do. Yes, if you want, you could even say I'm going on a trophy hunt. hahaha

I realize my body may not hold up for this. But if I can just keep myself where I am now, I think I can do it. It means being judicious about how much I play and when, and sticking to that schedule...not just go out because the weather is nice, because I think I can play today, etc. I also need to get more used to just playing a few holes a day during certain times. That's where the membership comes in. But now that I've stated my goals, I feel like I can work on them properly. I also think it helps me emotionally to have a plan...something to work for and look forward to.

Now we all just have to pray that my body goes along with it. *wink*

the caffeine post

2005-10-31T16:40:00.000-05:00

Ah...caffeine. I gave it up almost 20 years ago, because I had a little problem of my heart skipping beats. Stopping it helped, so I didn't use it again. Well, except for what is in chocolate, and that seemed to aggravate the RSD, so that was no fun.

Having said all of that, I've been drinking caffeinated beverages off and on for the last week or so. I got the idea from Bill, basically, because off and on we'd talk about needing to wake up and he'd have a cup of coffee. So I thought, why not some iced tea? That worked pretty well, and kept me from falling asleep while Lisa was home. So then I started drinking hot tea with caffeine sometimes. That helped too. The caffeine really bugs my RSD, and I've had occasional skipped heartbeats (which I know are benign), but I've added that. I figure it's better than taking the Provigil all the time. Caffeine doesn't work as well as the Provigil, but it at least helps for a few hours. And when my heart skips a beat, I just thump on my chest! I swear, it really works.

It's weird to have a substance in your body that you've avoided religiously for that long. I'm basically trying to find the most natural way to give myself at least a little more energy.

I also have to say it's been a great, but long, week as far as late night movies go. TCM has been airing Hitchcock movies every night until like 4 or 5 in the morning. Sometimes 6 (like this morning...hahaha). They started this last Monday, and it ended last night. Well, I just love his films so I have not been sleeping very much at night. It's not often you get a chance to see all those films. I've watched the stuff everybody has heard of, old films of his from his years in England, silent films, war propaganda films, shorts, and comedies. If it was Hitchcock and it was on, I tried to watch it. It's been great! However, I'm looking forward to getting some normal sleep for a while. hahaha Best comedy: The Trouble With Harry. Best scary film: Vertigo.

And yes, obviously, that did tie in to the caffeine. How else are you going to watch 7 hours of movies every night? hahaha Actually, I can't go to sleep when I'm watching them. They're just too good.

So I think I'll have a glass of tea and try and wake up for at least a few hours! I suspect Lisa gets tired of me falling asleep on the couch at 7 in the evening, and the caffeine does wonders to help that problem! Now to get back to a somewhat normal sleeping pattern...

accomplishing things

2005-10-28T00:30:00.000-05:00

I've been thinking of posting this week, but I've felt horrible. I've had a sore throat, earaches...generally feeling pretty miserable. I woke up this morning and started feeling really bad, but I finally started to feel better in the early afternoon.

I'm actually pretty proud of myself. There has been so many things that need to be done around the house and stuff, and I haven't had the energy or felt well enough to do any of it. This afternoon, since it was sunny and I couldn't stand it any more, I went out and pulled up all the tomato plants and put them in the compost, got the cages together and stored, moved a couple of pieces of wood, emptied out my car and cleaned the kitchen. And I did a bunch of little stuff like going through my purse and my golf purse and cleaning them out. I believe I did more today than I have in three weeks! And this evening Lisa and I got a bite to eat and stopped by the library.

I'm so glad I did all that. The problem, and this usually happens, is that get a few things done, and I figure I'm going to be tired and feel weak and be hurting anyway, so I decide to do more stuff. I only intended to get started on the tomato plants and then wait and maybe do the kitchen late in the day. By the time Lisa got home and we went to dinner, I couldn't hardly move. And the library was just stupid on my part. As I told her, I don't think I can do that again without using the wheelchair. I didn't go very far, just to the new section right at the front, but I was completely done in. We got home and I fell asleep for nearly three hours. I just couldn't function anymore. Yes, I'm writing this very late...I'm trying to stay up for a little bit so when I go to bed I might sleep through and not feel too tired tomorrow from oversleeping.

I don't know why I can't just be happy with getting one or two things done. The only real break I took was after doing the outside work, I came inside and took a hot bath. I tend to just go completely overboard and then can't hardly function for a day and sometimes quite a bit longer. I think for one thing it's because, as I mentioned, I already know I'm going to feel crappy later. The other thing seems to be that once I get started, I feel all this has to get done. It seems like there is so much I want to do, and I'm not sure when I'm going to feel well enough to do it. And no, I haven't ruled out that I'm just stubborn. I like to think I'm not ill, but pretending I'm not doesn't seem to work very well.

My body just feels so worn out all of the time. While I was working, I had to keep telling myself to do just this one thing more...I'm almost done...I don't want to leave this unfinished...I'll rest as soon as I do this last thing. I think that's the biggest one, that I keep saying to myself I'll rest in just a second. I find I'm almost literally dragging myself to the next thing to get done. All that worked fine when I was well, but seems to be pretty stupid now. I just don't seem to know how to quit it.

I also had a great conversation with Courtney late this morning, before I had a horrible coughing jag again and had to get off the phone. She said a lot of things that made me feel really good. I'll just leave it at that. But I felt like a pretty good mom. :)

I should probably at least try and get some sleep now...I'm certainly tired enough...I just hope I'm not hurting too badly to fall asleep. Earlier was more of a pass out thing from exhaustion, which is pretty bad since I had just drank a big glass of iced tea with caffeine, which I never have. (Well, not quite true lately, but that's a post for another day.)

venting

2005-10-24T00:27:00.000-05:00

I'm been feeling pretty crappy...and I wonder if it is partly because I haven't been posting. It seems that this is a good place for me to get my thoughts out, and I haven't been utilizing it. Most of the time lately, I feel I don't have anything to say...even to myself. Before I went to sleep last night, I wrote my blog in my head but of course so much has happened today emotionally that I'm not sure I can articulate how I'm feeling now.

Healthwise, I'm doing okay. I have had a bad cold and an ear infection, which has made me feel very run down. I'm also having a little bit of cramping and fasciculations in my large muscles, but I think that is due to the cold, wet weather and the antihistamine I've been taking.

I think my biggest problem right now is loneliness. I am alone so much, and I can easily go about 19-20 hours a day without seeing anyone else, and often without speaking. That is creepy. Occasionally I talk to people on the phone, but sometimes that almost feels weird because it gets to where it's like a disembodied voice. And there are few people I actually want to talk to. It seems with the exception of a couple of people, any time the phone rings somebody wants something. Not just to talk. Even when the weather is nice enough to golf, oftentimes I do that alone too. Those are the days I notice the most that I haven't really even spoken. It's like I live in this little world and no one else is there. People pop in once in a while, but then I'm back to where I was. Maybe everyone feels this way. I hadn't noticed it much before.

I sometimes feel like I'm losing some of my social skills, much of my grammar skills, and a lot of my speaking skills. I know...I talk a lot. And I think I talk a lot to make up for all the time I'm in my own head. I just don't feel as articulate. Sometimes I'll hear me say something and it sounds so uneducated. I hate that.

Another problem I'm having is the obvious discomfort of some people with me being ill. People who used to come over or ask me to do things don't anymore. This is not in my head...I actually asked someone else what they thought. It's like many people need Lisa as a buffer to deal with me. And then, ultimately, they spend time with her instead of me. I don't mind it too much, but there are times it gets very upsetting to me. I feel like I have cultivated friendships and relationships mostly myself, only to have them turn over to her. I'm not upset with Lisa, I'm upset because it hurts. That just leads me to not want to be around those people, because I feel like a third wheel in my own home or when we go somewhere. When I do see them alone, all they want to talk about is Lisa...and it feels awkward besides that.

I have been super busy with the online chronic illness support group, which I really like, but sometimes I feel like I'm getting lost there. I like helping people work through their problems and giving them support, but every once in a while I feel like I'm draining myself. That I'm not getting enough support for me. Of course, in most ways that's my own fault. I don't ask for help much.

I know, I'm feeling sorry for myself. I'm whining. (I just figured I might as well say that before someone else does.) And no, I'm not angry at or jealous of Lisa--I'm quite certain the stuff I mentioned would be the case no matter who I'm with. It feels like I'm being rejected. And I don't know that I want relationships with people whom I feel that way around.

Actually, I feel what I am doing is venting. And I need to do that. I just really hate it when how I feel gets discounted. So there...all of this is out of my system for a time, I hope. And I've got to remind myself to write more often. I think it will help. I don't know what else to do.

yes, I'm still here

2005-10-17T18:21:00.000-05:00

I know I mentioned in my last post that I've been working on an online chronic illness support group and that it doesn't keep me too busy. Well, ended up not being the case at all! It does keep me very busy, and for the most part I really enjoy it. The only bad thing about being co-owner is that I have to mess with it even when I don't feel like it. Although as I wrote that, I had to kind of smile and think well, that's a good thing, though, isn't it? Isn't that what I need? hahaha It feels good to be responsible for something outside of myself.

My headache finally disappeared, thank goodness. That was really frustrating. I still feel very tired all the time, which I think is also somewhat due to the depression of winter coming. On top of that, I'm not sleeping particularly well.

Not a whole lot new has been going on. I did get the Tiger Woods '06 game, which I really like, and I've been trying to golf as the weather permits. I've been trying to play this course that isn't too far from me (about 30 minutes), but for some reason I always score bad on it. You'd think I'd quit going there, but I am bound and determined to figure it out. One really fun thing happened there, though. On Friday, Courtney was coming home and this course happens to be on her way. She stopped there and rode with me and played my caddy for the day. I really had fun doing that with her. It was nice to be outside, spend some time with her, and just enjoy the day. I didn't play with a damn, but that was okay. And it was so cute. She was wearing a long flowing skirt and of course everyone would glance at her. I told her that if I stay well enough to play some serious tournaments, I'd have her caddy for me. And of course I visualized her wearing that! hahaha Seriously though, she does keep me calm, although she knows absolutely nothing about the game really. Okay, she knows more than she thinks she does...and at one point offered to graph the green for me when I couldn't read the break in it. That was scary yet funny!

I am still, after all this time, getting used to people's reaction to my disability. There are some people who are fine. However, some people ignore it and some people are visibly uncomfortable or even appear to be angry. I had an interesting thing happen today regarding it. I had a woman from my crazy people group say that she noticed I wasn't using a cane and that she was very proud of me. What the ??????? I just lurched away. What was I supposed to say? Thank you for saying that, I feel SO much less disabled now?

Of course, that may not make any sense to anyone. I have come to the realization that the cane doesn't really stop me from falling, or from hurting myself any worse when I do, so I quit using it. This realization hit home, so to speak, when I stumbled in the kitchen and had my cane about go through my leg and then one day later I tripped and bruised my pelvic bone really badly. That hurt worse than almost any fall I've had. (Okay, except for when I hit my head, and my cane didn't help then either.) So, no cane.

I also got a chance to hear Anna Quindlen and David Halberstam speak over the weekend. Unfortunately, the person who took Lisa and I was mistaken about the start time and we missed almost half of it, but I did enjoy it. They are both excellent writers, and I enjoyed listening to them. So I do get out once in a while that doesn't involve golf! hahaha

I think that pretty much covers the new stuff from where I'm sitting. Hopefully I won't wait this long before I post next. It's hard to do sometimes, as it seems dull to me. But I will try to do better so I don't get heckled! hahaha!

no specialist...for now

2005-10-11T23:18:00.000-05:00

I know, I haven't posted forever. I guess I really haven't had anything to say. I've had a headache off and on (mostly on) since I last wrote. I don't get them very often, so it bothers me a lot. I think I'm stressed and depressed. Of course, it seems like everyone is.

I've been spending some time running an online support group for people who are chronically ill. I'm doing that with a gal I've known for a little while and we decided to start our own group. It doesn't keep me too busy, but it is nice to have people to talk to who also have to deal with being ill. I have no idea what I'm doing as far as the group, but I figure I'll learn as I go! (Poor Leslie! hahaha)

One reason I decided to post today is because I called my neurologist about being referred to another specialist. I have been thinking about it a lot since I last saw him. I told them that I do not want to be referred right now. They told me that they will send me as a referral at any time I am ready, but that it is completely up to me.

The main reason I decided against it is because I don't see any real gain by going right now. There isn't any treatment other than what we are doing for this stage. I need a break from being sick. I know I'll still have this, but I don't want anything else done right now. I don't want to go to the doctor more than I absolutely have to, and I'm tired of messing with it. I feel comfortable with my decision although I expect a lot of flak from other people. I understand that they want me to be well, but this in no way is going to help or hurt that. I just need some time away from it.

I think I'm depressed because it's getting colder and grayer, and I am not looking forward to winter. The thought of being cooped up for months is overwhelming. And I think just not feeling well (my headache) isn't helping my mood any either. It seems like there is an awful lot going on in my mind that I can't explain.

I did find a golf videogame I like. I rented the Tiger Woods '06 game today. I had rented last years earlier, and liked it okay but this one really is much better. I don't like Tiger Woods very much, but I do like EA as far as game manufacturing, so I'm trying to ignore his name on the cover. hahaha It's kind of creepy, as you can design your player completely, from eye color to swing. You can make it look just like you...ewwh. So of course that's what I did. The game is totally awesome. It's just like me to come up with something I want for my birthday after the fact. hahaha

Lisa and I ran into some people we know from here in town on Sunday while we were in Indianapolis. We asked what they were out doing and they told us they had just finished the ALS walk. That was kind of weird in an ironic yet nice yet giving you the willies sort of way. It wasn't even a place I would have expected to see them. And what do you do in that situation? Say thanks? I just said that was cool and left it at that. I was going to go over there and talk with them, but they left.

I'm so tired of being disabled. I suck at it. But I guess somebody's got to do it.

what a day!

2005-10-05T11:58:00.000-05:00

I'm a beaten pup today. We've done so much this week that today my legs are killing me. Then I took a pain pill that made me nauseous but didn't help the pain, so I felt sick AND in pain. Yuck.

I had a pretty nice birthday. Lisa and I golfed at a nice course not too far away that had a play free on your birthday offer. Otherwise, I don't think we'd have ever spent the money. It was really nice, but there was an exceptional amount of walking...which I think is causing the worst of my problems today. They paired us up with a guy who had come alone, which was fine, although it would have almost been better if there had been two other people. He was okay, it just didn't give Lisa and I much time to talk about the course and stuff. Afterwards, we sat by a lake and had a few drinks then headed back to town...it was a late evening, but fun.

I think the thing that came to mind for me the most yesterday was that I survived a really tough year. It was a long, tough year, but I managed. And a lot changed as well...and so did I.

However, what's really on my mind tonight was that we had our golf banquet today. I was thinking before I left I should have stayed home...and I definitely wish I had. I arrived and before the meeting even started, this completely disagreeable woman I played with last week was demanding her winnings from last week. She got totally bent out of shape when there wasn't an envelope for her from it. I got so frustrated, I pulled a $10 out of my purse and gave it to her. Then she said I was holding it from her all along. Geesh! But it did shut her up. Then during the meeting I mentioned that we needed to have a second time to play the tournaments, rather than just Wednesday mornings because some people have to work and might have appointments and such that they can't get around. A couple of people were really hostile to the idea, so I figured whatever...not a big deal to me. Heck, the course owner said she knew of several people who would join if it wasn't restricted to during work hours. So after we finished the meeting, I went out to go to my car and have a smoke. This woman ended up following me outside and started yelling at me that I think I'm so important and should get special treatment and that I am a show-off. I had never played with her before, just knew her to wave at. She told me she refuses to play with me. And she wouldn't quit bitching! I have never even talked to her...nor did I know her name until later. Good lord! But was that enough...oh no. The owner's mother has mild dementia and had helped make the sandwiches. They had tuna salad and chicken salad. Well, there was little bit of both left over so she put it all on one sandwich. I knew this for two reasons. One, because after we ate she explained this to the owner. Second, because...you guessed it...I had the tuna-chicken surprise. I like both of those kinds very well. However, they are the most absolutely nasty things when put together! My first bite, I thought, oh, I got tuna salad. The second bite tasted funny. Then I realized the following bite it was chicken salad...and so on. Because my day wasn't going that badly, I then took a drink of my tea. Well, I had no idea that raspberry tea could be that vile. I like raspberries...I like tea. I thought it would be good. It was not. Not even a little. So there was no washing down that sandwich either. And I was in pain and ended up standing quite a long time after because I kept being asked to help with some handicap stuff. I came home and slept off and on the rest of the day. It seemed the safest thing to do, especially since that much happened in 1 1/2 hours. I was afraid to move, I tell ya.

Okay, actually I was in excruciating pain. My legs were cramping very badly and the only thing I could think to do was to lie down. I've been hurting so much I've had tears off and on all day, and that stinks.

But tomorrow will definitely be a better day, I know it.

stuff

2005-10-03T23:31:00.000-05:00

I'm finally sitting still for a few minutes again (in which I'm not dying of pain...hahaha) so I thought I'd write a bit. Besides, tomorrow is my birthday and I don't know when I'll get a chance to post.

Courtney came home for the weekend for the first time since she went back to school. Well, with the exception of an hour visit in which she brought three friends and they gave me the shortest haircut of my life...hahaha. That was a month ago, and she came back and couldn't believe it was that short. She was totally shocked how short it looked dry. *rolling eyes* hahaha Anyway, it was great to see her. I sure miss that kid and I can't believe she's going to be 21 before too long...wow!

Okay, I was going to write about a golf experience I had last week. The ladies at the main course I play at had their scramble tournament, and oddly enough I found myself paired with the two players with a 40 handicap (the worst it can list), and a 34 handicap, who happens to be someone I like very well. Somehow, the deck seemed a little stacked especially since the best golfer there prior to me is a 20 handicap and she had a 21 handicap playing with her. And the woman I was riding with (one of the 40's) complained from the time we got in the cart until she left. For all I know, she still is. It was rather non-specific, like where people park, the grass being too tall, her back...basically anything but herself. She also was having great fun telling me how to golf. I have a 19 handicap. (If you don't know much about golf, the lower the number on the handicap, the better you are.) Amazingly, we won the darn thing. I got so mad at one point I just decided I was going to do it myself and quit worrying about everything. And it worked, and they were all happy because we won $40. That woman was probably bitching because it wasn't $50. hahaha

But since then, I had a worse experience yesterday. I got a call asking if I would golf Sunday evening. I agreed but sort of got roped into it by giving a time I was sure would be bad and then they said that would be fine. Agggghhh! So I got there, mostly not wanting to golf because I was tired and knew I had a long week ahead of me. I was paired with the guy I usually golf on Sundays with, except for this time he was so drunk he was weaving around. And they decided to play for money...and I agreed because I hadn't seen him yet. A dollar a hole. We finished in the dark, and I have never been so mad playing golf before in my life. I thought last Wednesday was the worst, but they managed to top it. And, by the way, I won (I'm not counting him) by five holes. HA!!! I just got so annoyed I decided there was no way I was going to lose this thing. And I decided last night that I am never going to do this crap again. I love golfing, but no more am I going to play when I don't feel like it or with people I don't like. Life is way too short for that. I guess it just goes to show you that I can in fact hate playing sometimes. :)

Okay, enough about the golf other than that is the main thing I want to do this week. Lisa has the week off, so we're going to just hang out, play some, and such. I'm looking forward to it. And tomorrow night, we're meeting my daughter and hopefully my sister for dinner at a Scottish restaurant in Indy. I'm really looking forward to it as it's a really neat place. And yes, we're going to golf beforehand. :)

I've been kind of bummed and distracted about my birthday, but now that it's almost here I'm more excited about it. I think we'll have a good time tomorrow, the weather is supposed to be nice, and I do love being outside. I also think I couldn't concentrate on the day coming up because I had that test coming up too.

I have also been thinking a lot about my EMG, MRI and blood work results. I am so, so happy that I really haven't progressed that much. I was thinking about the past year, and I have had some down spots that I didn't quite get back from, but very close. All in all, I feel I am doing almost as well as I was a year ago. And that's a great feeling. I know I'm not cured and that I still have a disabling illness, but I couldn't ask for much more than this. Sure, I went downhill last summer quite a bit, but then I pretty much stopped. No, I am not as athletic as I was or able to do as much, but I wouldn't have thought a year ago I'd still be in this good a shape. And that's the best present I could have gotten.

Well, that and I hit a shot that landed 8 inches from being a hole in one...the closest I've ever been. hahaha Okay, seriously, it was a great shot but mostly I'm thrilled I'm here, in good health other than the MND and RSD and truly feel I can look a year ahead now! Hooray!

post-EMG

2005-10-01T15:42:00.000-05:00

I had the EMG and nerve conduction study. My lord, I had forgotten how bad I hurt afterwards. With all that stimulation, the muscles cramped for days. I just am now feeling better...hence why I haven't posted. I have basically been lying down since then.

Let's see, what did I learn. The larger muscles are more affected than the other ones. (Well the motor neurons leading to the larger muscles are.) So all we can say at this point is that I have motor neuron disease...luckily it isn't progressing super fast. He said some of my findings are unusual, but that the reason for that mostly is that they are unusual for him. MND is rare enough that he doesn't get many patients with it.

Now I have to decide whether to go to the ALS/MND specialist. The neurologist told me he would call him Friday, and I am to call him in about a week to let him know what I want to do. It basically comes down to the fact that there is no proven treatment for the disease itself, only for the symptoms. I have heard of only one drug that is doing much at all, and it seems to only give about three weeks more movement at later stages of ALS. Obviously I'm not there yet.

I guess I don't know what to do. On one hand, I suppose it wouldn't hurt to see the specialist. On the other hand, why on earth do I want to keep putting myself through this all the time? I just wonder how necessary it is for me to be told the same thing over and over again, when all they can do is treat symptoms. I really feel like I'd like a break from everything. So I'm going to think about this for a week or so and see how I feel. He told me its a personal decision on whether to continue to pursue this now, and that I should talk it over with Lisa and my family. I just wish I knew what to do...

I am looking forward to this week, though. Lisa has taken the week off, and we're going to try and do some fun stuff. There are some projects around the house, of course, but hopefully we'll spend most of the time out and about...particularly on the golf course. We'll just have to see, I suppose. Courtney is coming home today...so even though we ran a few errands, I've kind of stuck to the house to see her. I think my sister Jen is coming up today to see my parents and all, but I haven't heard from her. Of course, I haven't gotten online, so for all I know there is an e-mail sitting there telling me...hahaha. Now if I could just find her cell phone number...I swear, I wish I knew where I left my brain.

This will be the only the second time Courtney has come home since school started. She was here one night with a bunch of friends, but they only stayed about an hour, so I'm really looking forward to this weekend.

I am also going to have to break one of my rules and look at a previous post. I golfed in that scramble last week, and I do want to write about it if I haven't already. Hopefully I can get to that sometime today or tomorrow.

Well, I think I'll go sit by the door and wait...hahaha

onward and upward

2005-09-27T22:45:00.000-05:00

I'm going to give this another shot for a few days and see how I feel then. Thank you for your supportive comments...they do mean a lot to me. It helps me feel a little less alone.

I had a strange thing happen this evening. I was exhausted from not sleeping very well at all last night. You know the kind...where you're asleep for about 15 minutes then awake for 40, and it goes on and on all night? It's weird and thank goodness it doesn't happen very often...it's exhausting! Anyway, this evening after Lisa got home she wanted to read a little bit, and I was feeling pretty tired. So I said I was going to take a short nap, and to wake me up. She did, but I was still so tired I went back to sleep. Then I had the most horrible, scary dream I can ever recall having. Honestly, I don't think I've even seen a movie or read a book that terrified me so much. I kept trying to get awake, but couldn't...you know, yelling and such, but apparently nothing was coming out. I was being terrorized in this dream by a bunch of people. (No, I didn't know them, but in a way I think I did?) Finally, it got somewhat under control and I still felt very scared, yet I knew I had some help now.

It probably sounds bonkers, but after I woke up my mood was better than it has been in over a week. I think it was something I needed to work out and couldn't while I was awake. I also suspect it is why I couldn't sleep the night before. I guess it was because after all that horrifying stuff, I knew that I had a few people that would at least help me. Maybe they couldn't stop the things, but at least they would try. And I knew that I could handle things. Pretty odd, huh.

Two more days until my EMG. He is giving me the results while he does it, so I'll know what's going on right away. It's so hard to know what to do. I can get a diagnosis, but due to lack of real treatment options, I don't know how much I want to get it. I am still cutting back my meds. I'm off the Baclofen completely now, I'm a little under half of my previous dose of Neurontin. I admit to a lot of increase in burning pain since I did that, but my head feels clearer. I almost wonder if the reason I was so angry and frustrated with everything is because I was able to see things better than I could before. I'm not sure, but it's a possibility.

A friend also mentioned to me trying low dose natrexone. It's complicated to explain how it works, but you can look it up at www.lowdosenatrexone.com It certainly wouldn't hurt for me to ask the neurologist about it. The woman who originally mentioned it to me said she would call it a miracle drug for her. She has energy and feels so much better. I figure I'll just ask him what he thinks about it.

Tomorrow is my mom's birthday and my parents anniversary, so I have to run out and get gifts for that. At least I know what I'm getting them! My golf league is also having an end of year scramble tournament, which apparently is quite a big deal. It's an 18 hole affair, and I was told today I am captain of my team. The only thing I could think of is, could you add a little more pressure here, Grace? hahaha Today I have felt like hell, but I'm hoping tomorrow will be better. I am the only A flight player, I have a mid level B player, and two C players on my team. It sure be interesting, but mostly I hope it will be fun. I need some fun right now.

Other than that, I can't think of much that's going on right now, but I think it's certainly enough. Onward and upward, eh?

problems

2005-09-26T10:02:00.000-05:00

I was thinking about the comment that I am feeling sorry for myself. There is always that possibility but I don't think so. What I think is that perhaps this was an unsuccessful idea. I see several problems here.

One problem is that I don't always express what I want to. If I am angry or upset, sometimes I just won't write it. I think I do that because if I do, I feel I am airing dirty laundry about my friends or family, and if I write that I am upset then I run the risk of sounding pitiable or sorry for myself. See? hahaha That leads to another problem, in that I wonder if certain people who read this blog end up thinking they know what's going on with me, and I would imagine it's a hell of a lot easier to read this and decide you understand my situation and how I feel than actually asking me about it. Which would be a more serious problem for me.

I wish I knew what to do with this.

not sure if I should continue this

2005-09-24T22:28:00.000-05:00

I feel like nobody really cares whether I post or not, so it's making it a little hard to write lately. I admit I have been depressed, bummed, what have you, but sometimes writing becomes very difficult. I don't think my opinion is of that much value to anyone. I am not feeling sorry for myself, it is more that I am thinking this is an exercise in futility.

I have tried my best to write every day. I am started to wonder why. My life is incredibly dull, even to me. I can't imagine that anyone is gaining anything from this.

I honestly wish I could say I've been drinking today and that's why I feel this way, but unfortunately that isn't the case. I've been staring at this computer for a few hours now, and cannot for the life of me figure out what anyone would even want to read.

I go on a lot about golf, because it is such a lifeline to me, but I know that nobody who reads this really cares about golf.

I guess I'm really feeling alone. And that's okay as long as I accept it, I suppose. I also don't know if I want to continue this blog or not. Why should I put this much effort into something that seems pointless? It's just another of Catherine's rambles, and lord knows we're all sick of them.

I guess I'm just tired of everything. And I am not feeling sorry for myself, nor am I trying to start a pity party. It just seems futile.

rip van winkle is awake!

2005-09-22T15:52:00.000-05:00

I'm becoming inconsistent, aren't I? hahaha

I haven't posted lately, because it would require me to be awake. I started a horrible headache the other day and it didn't let up until this morning. All I seemed to be able to accomplish is sleeping over the last few days. This afternoon I decided I probably needed to re-start the Provigil to help get me awake and give me more energy...and I promptly got an upset stomach. So now I am a very awake, very nauseated person. hahaha

I have a lot going on in my mind that I can't explain to anyone...even myself. One of these things is that I feel a lot of pressure to be there for some people and I can't seem to just get up and go do something for myself instead. I know part of that is because I haven't felt well, but I feel very conflicted. I'm sure it will pass...I think I need to give it some time.

Anyway, the main reason I wrote is to let everyone know I'm okay. As I said, I think it will take a little more time for me to sort out what my problem is in my head. Who knows. I know that I like writing here, but I am starting to feel that I can't be as open as I want to be. I don't know why that is either. So off I go to muse is further.

out of sorts

2005-09-19T23:15:00.000-05:00

I had crazy people group again today. I am very upset with myself. I felt so impatient with everyone. I guess on the good side I am certain they didn't know it, but I just wanted to scream. I know that isn't being tolerant at all, but today I just couldn't stand it anymore. I've been working so hard in this group, but forward progress has just stopped completely because everyone wants to "process". I don't know why this is bothering me so much. I wish I knew, because this is getting ridiculous. Two weeks in a row I have been nothing but frustrated.

Other than that, I haven't had a lot going on today. I think because I slept so much last night that I felt groggy most of the day and kind of went around in a mild fog. Isn't that strange, that when you oversleep you feel more tired? That doesn't make sense to me either.

One thing that was kind of bugging me today is that I have felt very alone. It's not that I haven't been around people or anything, but something is bothering me and I can't quite get to it. And when that happens, I always feel lonely in a way. Like I have this big problem and no one to help me with it. Which is true, if I can't tell anyone what it is. I can't figure out what is going on with me. I am completely out of sorts.

Tomorrow I have my redetermination with Medicaid. I really hate that too. I hate needing it, but I know without it I can't afford my medications or my tests. Going to that office makes me feel like I'm begging or something. Like I have failed in some way and therefore I have to get financial help with my medical problems. Again, I know I shouldn't feel that way but I do anyway.

So one could some up my day as one in which I was mostly frustrated. I'm so tired of feeling this way. Tomorrow is another day, though. And I'm sure it will be better.

very, very rested

2005-09-19T09:36:00.000-05:00

Well, I just slept for over 12 hours again. It's really strange, because I've done that the last two times I've played in the couples league. I got home, watched a half-hour program and then told Lisa I was wanting to take a half-hour nap. She woke me up, but I ended up falling back asleep again. So I got up over 13 hours after lying down to watch a program. I wouldn't think the golf causes it, because we only play nine holes and I don't have this problem any other time. Of course, we do eat a huge meal right after we play...maybe that has something to do with it. It's just weird, though.

The really cool thing is that in our scramble, John and I shot a 31 on nine holes. Five under, thank you very much, and we really should have shot a 30. I'm pretty impressed with us! And believe it or not, I actually contributed quite a bit...including sticking a seven iron to 4 feet from the hole on a par 3 and then doing it again on the next hole with a pitching wedge. I was pretty proud of myself! (I'm doing the show off dance in my chair...hahaha)

Well, one could say I'm very rested right now. hahaha I just wish I could solve the mystery of the 13 hour naps!

after my appointment

2005-09-17T21:51:00.000-05:00

I saw the neurologist Friday, and I can't say I feel a lot smarter for it. What I do know is that all my blood work looks good, and the MRI shows only a couple minute areas of plaque. Other than that, I don't know a darn thing. I suppose all that is good, as it shows that I'm in pretty good health. I'm just neurologically totally screwed up. hahaha I go back on the 29th of this month, and he will do an EMG with nerve conduction on both legs. At that point, I have to decide some things.

He is fine with my reduced medication doses. That's a good thing, since I don't want to push it back up again. After the EMG he can refer me on to the specialist, which he offered to do now, but I would rather wait. The only thing that would make me change my mind if we find something startling on the test, which I doubt. The problem is that there isn't any real treatment for motor neuron diseases, so there isn't much to offer me. I have to be quite ill to qualify for the current clinical trials for ALS, and I'm not there yet. So here I sit. I can restart my physical therapy when I'm ready, and that will help some as it gets colder and it is harder to try and do things outside, but that's pretty much it.

I actually feel pretty okay with all of that. I want a break from the doctors and the meds and all things medical. I think I need my head to catch up to where my body is. And I'm tired of being sick...it's hard to not be reminded all the time when you're at a doctors office so much. I just don't want to think about it so much.

I don't think it will be a bad thing to avoid the docs for awhile. It's not like I'm missing treatment or something. In the words of Garbo, "I want to be left alone". hahaha

I'm tired, so I think I'm going to get some rest. I feel worn out.

neuro appointment today

2005-09-16T11:00:00.000-05:00

I think I'm in a better mood. I'm still feeling fairly angry, but at least today I know what things are causing me to feel that way.

My neurologist finally got the report on my MRI yesterday, so my appointment today is a go. Unfortunately, he didn't get the films yet but at least he has something so we can move forward. Today is when we will decide whether I am going to stay with him or start seeing a specialist in Indianapolis. He said that ultimately it will be up to me, but he wanted this workup to see if there were any changes or any contributing factors that would be causing me to get worse at this rate.

I also have a squeak in my keyboard. I have never heard of such a thing and it's driving me nuts. The spacebar is the culprit. Perhaps I can figure out how to never touch it again. Let'sseeifyoucanreadthisandthatwayI'llknowwhetherornotthespacebarisaneededkey.
Isurehopenotasthisismuchquieter.hahaha

Not taking as much of the medication seems to be helping the fatigue a little. Of course, now I can't seem to get to sleep at night again, but I think that is because I've got so much on my mind. But being tired because I'm sleepy sure feels better than being tired because of all the medication. My stomach also feels better off the Baclofen. It seems to upset my stomach quite a bit. I will admit I am hurting quite a bit more, but for now that is a good trade off. Now I just have to see what the neurologist says about it.

There's not a whole lot going on other than getting ready for this appointment, so I might as well end this while I still have your attention. hahaha

if everyone would just shut up...

2005-09-14T23:31:00.000-05:00

It's certainly taken me a few days to post. I wish I knew what is wrong with me, but I really don't have a clue. Sometimes I have felt too angry, sometimes it has been nothing other than I don't feel like talking or writing. I guess that might be because I'm angry, hell if I know.

I had and have been angry about several things...mostly about doctors, hospitals and the like...I guess really about being sick in general. If it wasn't for that, I wouldn't have to deal with them. I would like to completely quit going to doctors altogether.

I started getting really angry Monday morning. Then my appointment with my internist didn't go particularly well. Mostly because it wasn't helpful and it was annoying that I had to deal with getting my test results. That sure didn't help my mood any. I still was in a funk on Tuesday...feeling alternately angry and annoyed. The only good thing about Tuesday is that I got so mad about everything I just left and went to a golf course I've never played before. It ended up being cheap, and after nine holes of the same old crap, I suddenly remembered how to golf. (Fine thing that it only took a year.) I played the back nine very well. Today I have been a combination of frustrated and exhausted. Every single time I would try to nap, something came up. I finally did get a nap very late this afternoon, but the good effects of that ended up wearing off way too quickly.

I am so tired of being sick. I have cut my medicines drastically in hopes that it will at least allow me to have some energy. I'm tired of feeling drugged. It occurred to me Monday that I really feel very drugged a lot of the time. The Provigil helps my energy, but within several hours the effects of that are gone and I feel worse than I did before. I have tried over and over again to time the medication to where I get the most benefit, but I have been very unsuccessful. So I have pretty much stopped my Baclofen and am only taking half my Neurontin. I figure I can at least do this until Friday, when I see the neurologist (provided that he has the results of my MRI by then). I'll tell him what I did and see if that is acceptable as long as I am not having worse problems. I will take the Baclofen when I actually have spasms, but for now I just hate to take it.

Lisa mentioned to me I have done this before...decided I wasn't disabled. I think this is different. It isn't that I don't think I'm disabled, I'm just tired of feeling like I am. I KNOW I'm disabled. But of course, I'm sure I'm just splitting hairs. I am tired of taking medication and I'm tired of feeling like hell and I'm tired of being physically weak. I hate the label of disabled. It also occurred to me that I was golfing like I needed to prove something. I guess I felt like I needed to prove I could do this even though I was disabled. On the course the other day, I decided that I knew how to play before and I just need to let it happen. I need to quit trying so damn hard. And I played extremely well when I let go of the pressure. I feel like I have that going on in so many aspects of my life...I keep pressuring myself to do well, to handle things well, to do certain things. I just don't feel like it right now.

Hell, in the last day or so it's even been hard to want to talk to anyone. I think it's partly because I'm angry and partly because I have had so much on my mind and yet having absolutely nothing to say. I have been short tempered and frustrated, so I guess I haven't felt much like communicating. I haven't even been keeping up with my online support group. I read the posts but just can't get myself to answer them. And there haven't even been that many. I told my therapist Monday I would like to see her, but I haven't felt like calling for an appointment because I don't feel like talking to her. Now that I write all of that, I don't know if it is a lack of wanting to talk, or if it's because I don't want to be told how I feel, I don't want to be discounted, and I guess I don't have anything to say. There is nothing going on with me on the outside, so I have nothing of interest to talk about.

That was a lot of talking to say I haven't wanted to talk. hahaha But I guess it's out of my system, because I'm done once again. I cannot be the disabled poster child. And I can't be well either, so I'm going to sit here until I figure out what I CAN be.

very bad mood

2005-09-13T00:04:00.000-05:00

I am not going to write much tonight. I'm in a very bad mood and have been most of the day. I can't shake it right now, so I don't see the point in writing.

I still don't have the results of my tests, as the hospital didn't manage to send them to my internist. These were done a month ago. I see my neurologist on Friday, so I guess it will wait until then.

And with that, I'm stopping before I work myself up any further.

Solheim Cup and the decline of Catherine's empire

2005-09-12T08:00:00.000-05:00

I was too tired to write yesterday, as I hadn't gotten much sleep the night before and we had a very long day. I woke up this morning really excited to write about the totally great and fun day we had yesterday, but by the time I had reached the bathroom I was horribly depressed. That was a little unexpected.

I cannot believe how bad I'm doing physically. For some reason, this short walk we did yesterday entered my mind. I had been sitting for over 4 hours, and from experience I know that doing that can make me a little stiff. I had kept my legs moving so it wouldn't be as bad (which worked), but I wanted to walk a little way. For one thing, I could easily see where I was trying to get to. I can easily throw a ball that far, so I felt it was doable. I did make the walk, albeit with several stops, but walking is becoming so very difficult now. I know I've said it was hard before, but over the last month or so it keeps getting progressively worse. The difference is remarkable. And what started all of this is visualizing how I was walking yesterday.

(Another thing--earlier I said I can easily throw a ball that far...I have noticed over this summer I can't really throw anymore. And certainly not correctly. No offense to other women out there, but I throw like a little girl now. So even that is screwed up.)

I guess I'm feeling several things right now. Anger because I'm not feeling well. As I say that, I know that anger is just fear displaced so I guess it goes into the being afraid. I don't want to do this. I'm afraid of it. I'm afraid of what it's like now...I can imagine how I'll feel as I get worse. I feel very sad. When I got up this morning I could see myself walking...and I know I would feel sorry for that person. And I saw the looks of other people yesterday. I would feel pity for the person if it wasn't me. And that makes me very upset. I hate pity and I hate feeling sorry for myself, and I think that's what I'm doing.

No, I wasn't reading things into the way other people looked at me. Old people were offering me their seats. And please don't tell me how much I've been doing lately. I know I have. I know I overdid. But I also know that this has gotten worse over the past month. Not just the last week when I've been trying to do more. The problem with people telling me about how much I did that might have caused it is that it discounts how I feel. I think I'd know if I was getting worse. I feel like I'm watching the decline of Catherine's empire.

I stepped back for a minute and took a few deep breaths. Lisa and I had a wonderful time yesterday. No scooters yet again, so we went straight to the 9th green anyway. Luckily, it's the closest to the drop off point, so that helped. We sat in the handicapped area, which meant we were right next to the green and had nobody in front of us at all. We brought a towel, so we spread it on the platform and just sat. The other good thing is that they had a screen showing the Golf Channel, so we could watch what was happening before they reached us. (They have had this near the 9th green all week.) They turn it off as the players start approaching. As the 12 groups came through we got to see some amazing golfers right up close. We saw some awesome shots, some heartbreaking ones, but it was great. The crowds were all cheering and chanting for the USA team. We also met some really great people from around the country who were sitting next to us. It was a blast! We also saw the team captains, some of the founders of the LPGA tour who were there, all in all a wonderful day. We left after the US team had 6 points...we needed one more to win, but I wasn't able to get to another place to watch the golf other than the TV. We got the three shuttle rides it takes to get to the car, ran off to a restaurant/bar we like a few miles away, and got there just in time to see Lisa's favorite player (Meg Mallon) win it for the US. That was fun too...good food, a couple of beers, and off to home.

I only have one regret of the week, and it is that I didn't get a picture of Lisa with Meg Mallon. I didn't think of it until it was too late. They both went to Catholic high schools in Detroit, just down the road from each other. And yes, Meg Mallon is older. (I could hear Lisa saying "but we weren't in school at the same time") But she's still Lisa's hometown girl.

It was a great, exciting time!

totally bummed

2005-09-10T19:16:00.000-05:00

I guess I should have expected it, but I wasn't feeling well enough to go to the Solheim Cup today. Late last night, I was lying there and going over my options and the possibilities regarding going to the tournament. I knew Lisa didn't want to go, as she worked late last night and had stuff she wanted to do today. I went over every option, and how I was going to do it. Of course, my legs were burning so badly it was horrible, and I was hurting all over and exhausted. Worrying about all of that didn't help, because the more I thought about the hows and the execution of them, the longer I stayed awake trying to figure out the right thing.

I woke up in plenty of time to get there extra early, and even at that I had everything ready the night before so I could run out (okay...figuratively, not literally) the door. I walked to the bathroom and by the time I stood up, I knew I couldn't do the little bit of walking it would require for me to go alone. My legs still felt on fire and they felt very weak. I asked Lisa what I should do. When I considered asking her opinion the night before I knew what it would be, but I was still hoping for some suggestions on how I could manage it. None were forthcoming, so I had to decide to stay at home today. That led to quiet crying because of frustration about being ill. I am so tired of this. It shouldn't be this hard, even with a scooter.

The weird thing I kept thinking about last night and this morning is that I was worried I would wear myself out, especially my legs, so far and so badly that I couldn't come back completely from it. By itself it sounds odd, but I had something similar happen to me in the past. I had transcribed a very long murder trial set for appeal several years ago, and in the process of doing so I only slept a few hours a night for a little over a month. It was the dead of winter (pardon the pun), I was only coming home on weekends, and even then I was working from here. By the time the damn thing was finished, I ended up suffering from exhaustion. Lisa is convinced that I never quite bounced back. I don't know that I can disagree with her...I never have had that type of energy since. So, of course, I drew the parallel to that. And one of my biggest fears, obviously, is the time when I get up and just can move my legs in any way useful anymore.

I look at it now and wonder if I avoided going today out of fear or out of pain or both. As much as I have been loving this tournament, it isn't worth crippling myself over...frankly, nothing is.

The tournament was televised live, so I did watch almost all of it today. It was very exciting, and by the end of the day the scores were tied. It all comes down to the single match play events tomorrow. In a way, it was kind of sad watching it. All day I kept thinking about being there, and how I was missing so much of the excitement. I am totally bummed. I haven't felt well enough to do much of anything except lie there and watch golf and yet I feel stir crazy. And depressed. And trying to not start crying again. I know it's just a golf tournament, but I think the problem is more about what I am missing. I am only 40 years old, for crying out loud!

My legs are still burning and I still feel weak, but I'm going to stay down this evening and get up and do it again tomorrow. Lisa said she would go, so that helps. I thought we'd put the wheelchair in the car, just in case. As crowded as it will be, I figure we just need to get me parked somewhere for the duration. I have picked two holes I would really like to watch, so hopefully that will work out. If Lisa is there, she can get water and food for me. That was one of the drawbacks to going today...the need to get things like that on my own. And if she doesn't go, well, I'll figure out something. I can't imagine another opportunity to see the best women golfers in the world like I can this week. So, if you watch the Golf Channel tomorrow...I'll wave at ya! Just look next to the ninth green bleachers. :)

actually writing the same day! -- and I'm pooped

2005-09-09T22:41:00.000-05:00

If you've made it this far in catching up, I'm amazed. Or you're bored. Or you're just very tenacious. Or I am much more interesting than I think I am. hahaha Finally, I get to write about the same day I'm actually having! Woohoo!

One thing I have noticed about this tournament is how damn good these LPGA players are. I knew they were good, I follow their careers, their season, and watch on TV whenever I get the chance. However, when you watch them up close it is unbelievable. It isn't so much their drives, although they do hit it long off the tee. It is how close they hit the ball to the pin. To see someone stick a shot from 150-175 yards out is amazing. Honestly, I don't think I had any idea what it was like to watch them. And Annika Sorenstam...my lord. I heard the announcers on the Golf Channel tonight saying she was playing badly. If that is bad, I can't imagine what good looks like. She got herself in trouble some, but watching her get out is even more amazing. Actually all the players are extremely good, but in person you can see why she's number one in the world. Another couple of players that are exceptional...more so than I realized before...were Laura Davies and Pat Hurst. I knew Laura Davies was good and that Pat Hurst is no slouch, but they both were playing outstanding. Okay, I'll stop because I'm running out of good adjectives to use, and probably have repeated...hahaha

I set the alarm this morning for 6:00. I had everything ready, so I figured I'd get to the course a little before 7:15, in plenty of time to get a cart. I was tired when the alarm went off, so I gave myself an extra 15 minutes. This is when things started going wrong. I finally hit the door, got down towards Indianapolis and hit traffic. So I decided to go down a side street. Well, that didn't work because there were school buses and everyone else on earth trying to miss the traffic. I finally arrived and rode my shuttle to the inside gate and low and behold, they told me there would be no more shuttles for quite a while. The ladies were going to tee off in a half hour, and the shuttles were caught on the other side. So I started walking. I had to keep sitting down, and once they actually started teeing off, I couldn't cross to the scooter pickup. I finally reached the crosswalk just a few minutes after all of them had teed off. (This was four groups and took me over a half hour.) I got to the scooter area, and find out that all of them had already been taken. At 7:10. The gates open at 7:00, and I was told the line was horrendous just to get into the course. This is when I knew I was screwed.

I sat there for awhile and finally a volunteer came over and asked if I would like a ride somewhere. She took me to the driving range. That was cool, because it is close to the scooter rental place, and I was hoping someone would return one. Well, then I started getting thirsty. So I had to walk all the way to the concession stand. On the way back, a lady stopped me and was asking if she could help. Her husband is the pro at the course, and she could help me out. So she helped me get situated next to the 9th green, and even brought me a chair. (Of course I hadn't brought my own chair...I thought I was going to be on the scooter.) This worked pretty well, as there was a big screen and we could see what was going on around the course. It was weird, though, to be sitting on a golf course watching television. Not natural, I say. She told me she'd have her husband pick me up after the golfers came through and take me to the Ping Pavilion. Sweet!

In the course of sitting there, I met a woman and we got to discussing my goal of playing the Pete Dye courses, and this is one I would love to play. She asked about my illness, etc., and she told me she knew someone who could get us on the course to play. (I assume they are members there.) So I spent quite a long time sitting there. After the golfers came through, I waited for quite a while for a ride from that woman's husband, but he never showed. I couldn't be too upset, as she kind of committed him without talking to him. So I ambled over to the scooter area again. Still none.

I waited quite a long time, and then a woman drove me over to the Ping Pavilion. By this time I was dying of thirst and getting pretty hungry. I went inside and the line went all the way to the door just to get something to eat and drink. That wasn't going to work either. So I went out the back door and finally found a concession stand outside. Of course, there was a huge line. And I mean huge. But I managed to stand long enough to get to the front of the line and get a few things of water and a sandwich. I didn't make it very far before I decided I would have to just sit where I was...I wasn't going to make it any further. So I sat there and ate my food and wouldn't you know it? Annika was playing near that hole (and she was in the last group) and here came a gazillion people. It's a miracle I didn't get trampled. I finally stood up and I see off in a short distance four transport carts. Great! I start walking that way and got to watch all four of them, empty other than drivers, take off the direction I needed to go. I sat down again and realized I was pretty much screwed.

You see, at this point I was as far on the course as you can get from the main entrance. So I started walking. I figured the carts came by earlier, they'll probably come back. I couldn't have been more wrong. I had to sit over and over again. I fell once, but landed on my knees. This was in front of some volunteers who didn't even ask if I was okay or if they could help. When I did ask for help, I was told they were off duty. How nice. Just when I was holding them in such esteem. So on and on I walked (kind of like this story, huh? hahaha), and I finally arrived at the scooter tent. I thought I was going to die I was hurting so bad and I was tired. Still no scooters. So I just laid down on the ground near that tent. I knew I couldn't keep going, no matter how much I wanted to stay. The afternoon pairings hadn't teed off yet and I wanted to see them, but my legs were done. I was done. So I finally got a ride back to the entrance, another back to my car, and I just sat there in the car hoping I could make it home.

Obviously, I made it home okay. I had a nap this afternoon and watched the Golf Channel so at least I got to see some of what I missed. It wasn't the same, though. So now I'm super tired yet again. I don't think there is any way I could do what I did today twice. No scooter, no Cat going to the Solheim Cup. So tomorrow, I'm going to get up at 5:30, and try and get there before the gates open. I don't know what else to do. I've picked out the holes I want to sit next to, so it's just a matter of getting to them, but I know I can't walk that much twice. I'm not sure how I did it today. The burning in my leg muscles is horrendous.

I did see two people using wheelchairs, but I don't know how practical that would be. Not all the paths are paved, and I can only imagine (a) someone trying to push me through all of that, and (b) how incredibly uncomfortable that would be to ride. So, I guess it's onward and upward.

And yes, it was still a beautiful day, just a little humid. And yes, I still loved watching the golf. And yes, I did buy a souvenir set for Lisa. (See, I'm not near as self-centered as you thought!) And this still is the coolest thing I've done in a very long time.

long day at Solheim...and then exhaustion

2005-09-09T21:39:00.000-05:00

Okay, I'm so close to getting caught up. I didn't want to miss anything, hence I have been going back. Geez, this is harder than it looks!

Wednesday, Lisa went with me to the tournament. It was still a practice day, and so she brought her camera with her. I just have a digital one, but she has a nice 35 mm Canon with all kinds of lenses, so she took a lot of pictures. I can't wait to see how they turned out! The only bad thing is that you don't get the immediate feedback like you do when you download the digital. However, that will be something to look forward to! She covered the tournament for where she works. It's amazing the media stuff they have. Good food, work stations, even a complimentary gift book...I clearly picked the wrong career. hahaha

Once again we got a scooter, but I ran into the same problem I had the day before regarding getting autographs. I managed a few, but for the most part security and such want you to walk along with the players to get them, which is kind of difficult when you can't walk...obviously. I understand them wanting you to do that, so you don't slow them down, but it does make it hard. Lisa, on the other hand, didn't mind walking and just jumped right in there and asked for them. So now I have a bunch of autographs, which is really cool. I think I'm going to hang them up in my office. But anyway, we went all over the course! I felt bad, because I kept thinking she had to be tired, but she kept saying she was fine. The other problem is trying to pick a speed. When you go over grass, the speed on the scooter changes a lot, and I can't get it set to the right walking speed for her. This week has been the first time I've used a scooter other than in stores, and these are much nicer. You can adjust the speed, handlebars, everything. Of course, when you're riding next to somebody walking, it gets kind of humorous. She finally said there was no way she was going to walk in front of me. I can't imagine why...hahaha

I can say that now that I've used one several times, I realize how nice it would be to have one to get around elsewhere. It is much less tiring, although I can't say it eliminates the problem altogether. However, it does allow me to go much further and see things I couldn't otherwise. The course has been very handicap accessible using the scooter with few exceptions, so that's been great.

I forgot to mention the Ping Pavilion. Lisa thought I should get tickets for there as well, and that's been great. It's huge, and from the inside you would never think you're inside a tent. First thing I have to mention is the air conditioning. That feels really good after being outside all day. It also has glass walls, windows, doors, and it has plasma TV's so you can watch what's going on, food service (the food is much better in there, with more selection), and you can even sit on the patio and see several holes from there. So that's been great. There are nice tables in there with tablecloths and the works. I definitely think it was worth it to pay the extra for it.

Well, as I said, Lisa got me a ton of autographs. There were two I wanted in particular. Christina Kim and Annika Sorenstam. She gave Christina my visor to sign, but she didn't have a pen. Luckily, a guy had a ball point and she signed it. Because signing autographs caused Annika Sorenstam's group to get way behind on the front nine, she said she would only sign after practice. Lisa jumped right in line and got her autograph, also on my visor. Of course, now I can't wear it anymore but I figure it's more than worth it. My office is going to look like golf central at this rate. I put the visor on a shelf above the computer. How neat has all this been? Another thing that was cool is that Lisa was able to get right up next to the greens and everything. I can't because of the scooter, but it was neat to see her right up there. We spent a very long day there, and it was great.

Again, it was a beautiful day, weather-wise. One thing I didn't mention earlier either, though, is the cost of everything. Water is $2.50, food runs about $6.50. You aren't allowed to bring any beverages or food onto the course, so you sure can go through the money, especially when it's warm out like it has been.

The only downside is that when we got back, Lisa had to write her story. One thing she learned while we were there is that every guy she talked to said he was only there because he had gotten free tickets. They generally don't follow women's golf either. So I was thinking, what the hell are you doing standing in my way, then? hahaha Actually, it was kind of weird. So we get home and she went to write her story, and once again the computer screwed up with the internet access. It's a miracle it's still here, as I was waiting for her to kick it or throw it out the window. So she had to go into work to type it up and file it. That kind of stunk, but hey, it ended up being a good story.

And that leads us to yesterday. Finally! Whew! Okay, I woke up and I couldn't hardly lift my arms. I thought that was pretty strange. And I was exhausted. I finally figured out my arms...it was from being up on the scooter all day. I'm not used to holding them up very much, and it just wore me out. I ended up sleeping until around 11:00 am yesterday, and then took like a three hour nap. I knew I was tired, but that was ridiculous! It's so hard to realize I just don't have much stamina anymore. Of course, Bill told me I would probably need a day off to make it the rest of the way. I hate it when he's right. But hopefully I got enough rest that I can make it through the weekend.

first day of Solheim Cup practice

2005-09-09T18:42:00.000-05:00

Okay, the previous posts led us right up to Tuesday, the first day of Solheim Cup practice. If you don't know what the Solheim is, it is a tournament composed of the top 12 U.S. women golfers versus the top 12 European women golfers. It is being held at Crooked Stick in Carmel, which is less than an hours drive from where I live. I have been looking forward to this for over a year! John Daly won the PGA Championship at this course several years ago, and it just so happens that my favorite course designer, Pete Dye fashioned this course with his wife Alice who was and is a great golfer in her own right. As a matter of fact, she is considered the designer who worked to make the forward tees that women usually play competitive as much so as the mens. So, I have lots of reasons for me to look forward to going.

Needless to say, I woke up Tuesday with a huge lump on my head. I drove myself down there...which was about the time I decided I probably was going to survive my head injury. I figured if I had trouble concentrating on the road, I'd have to turn around and go to the hospital. But, I didn't have a problem. Well, I didn't have that much of a problem...hahaha

The set up for handicapped persons is really great. There is an area we are directed to park, and golf cart shuttles take us from our car to the main entrance. We go through security and then get on another golf cart that takes us to the handicapped access gate by the 1st green. Another shuttle then picks us up there and takes us to the handicap services area beyond the 1st tee box. From there, you sign up for a Pride Mobility scooter (product plug-in there), leave your drivers license, and you have free use of the scooter for the day. So all in all, they have made this very handicap friendly.

I got there the first day, and wasn't really sure what to do with myself. I scooted myself back and forth quite a bit, sort of following the European players as they were teeing off for their practice round around the time I arrived. I talked to all kinds of people who were also there watching, and finally decided to try and get an autograph or two. (I won't list most of them, as most of you probably don't know who they are...nor care.) However, on a hole later on, I had taken off my visor, which left my head injury quite visible. (Honestly, for the moment, I had almost forgotten about it!) So I think I'm pretty cool, and I stand up and ask Laura Davies (a player from England) for an autograph. I am a huge fan of hers, I really like her a lot and she's a great player, so I'm thinking this is awesome. She signed my program, looked up at me and proceeded to immediately comment on the bump on my head and ask if I am okay. I wanted to find a hole to crawl into. So much for being cool. Although I have to say, she was super nice and waved my way a few times after that. I still felt like the kid with the black eye at school though. hahaha

I did manage to take quite a few pictures as well. They allowed cameras during practice days, and that was really nice. Unfortunately, one picture that would have been perfect came out blurry...I kept thinking the picture looked blurry but I thought it was my eye or something. Oh, no, it was a fingerprint on my lens. That I didn't notice until the next day. (feeling kinda slow there...hahaha)

I managed to watch a lot of my favorite players, on the course and at the practice range and putting area. I was in pig heaven. I used to be crazy about tennis, but going to the tournaments never did quite the same for me as seeing these golfers I watch on TV as often as possible. They were all very friendly, spoke often with the fans, and were very accessible. How cool is that? That is one thing I love about the LPGA. The players interact with the fans a lot, and at times you forget that you really don't know them. They become so familiar and then you see them going back and forth or something and suddenly realize when you say hi that they have no idea who you are. I have to say, that is something I didn't expect at all. How much you feel a part of things at these events, and how much it is set up so you do. I have to give them a lot of credit...I can't think of another sport, or for that matter another professional golf tour, that lets you get up close with the players.

So yes, one could say I had a most awesome, wonderful, fun, exciting day. And the weather was perfect!

head injury

2005-09-08T22:10:00.000-05:00

Well, I guess this brings us to Monday! Oh, lord. I was feeling a little better, and was hoping to play a round of golf before the tournament started, as I knew I wouldn't be playing for at least a week. Lisa and I headed a little way north and played a course called Walnut Creek. We decided to do this primarily because we knew some people who had played there and every time we head north on the interstate, there are signs everywhere about it. So figured, this would be fun. Our first clue that this wouldn't be what we expected is when we pulled up and the clubhouse was in a pole barn. Uh, oh. But still, we figured it might be good. Unfortunately, the course wasn't very nice at all. I hate to say it, but this is one of the few times I thought golfing and the money spent was a waste. It kind of makes me think they spend all their money on signs and none on the course. And yes, Lisa did beat me again. Like a dog. And I was pretty unhappy because I couldn't hit anything correctly. It made me start to wonder if I can actually golf anymore...and you know that scared me. Nothing felt right at all.

So we left the course a little disgruntled. There is a restaurant that we really like in the town it is near, so we went in search for that. Of course, we hadn't been there for several years so this was like finding a needle in a haystack. We finally found it and had a decent meal. A little later I went into the bathroom and one of the things I have really feared finally happened. I fell and hit my head. Not just a little...hard. And I couldn't get up. I thought I was going to pass out, get sick, the whole works. That hurt more than anything I could remember. I just laid on the floor because I didn't feel I had enough strength to get up. Luckily there was someone else just coming in, so she ran out and got a friend of hers who is a nurse. Now, I was not going to go to the hospital. No way. The Solheim tournament started the next day, and I was not going to miss that. So they got me up, sat me in a chair and put some ice on it. Mind you, I did not look at it--which is probably a good thing. I tried hiding it from Lisa, as I was sure she wasn't going to let me go anywhere with that kind of bump. We got home and I finally looked in the mirror, and found I had the largest lump on my forehead I had ever seen. The swelling went from my hairline to my eyebrow. Huge...and very unattractive. However, I decided that since I wasn't vomiting or anything, I probably didn't have a closed head injury. But I am certain I had a hell of a concussion. And yes, I should have gone ahead and went to the hospital. But since I'm sitting here writing this now, I guess it worked out okay!

I have been having a heck of a time with tripping lately, so I guess I shouldn't have been surprised that I fell. My feet keep dragging. I think I have picked it up far enough, but I don't and in this case I had tennis shoes on and the rubber caught the linoleum and down I went. I hit the counter and the floor with my head and bruised my hand where I tried to catch myself. I am constantly telling people the best place for me to be is outside, so if I do fall I won't hit my head. I just never imagined hitting it that hard, or that way. I was using my cane and it didn't help at all...in fact I think it made it harder to catch myself because that hand wasn't free. I know I'm going to have to figure out something else to do to help me walk. And I know it probably needs to be a walker...I just can't get myself to do that yet.

So there you have it. First I golfed and wonder if that is something I can still do, and I cracked open my head. I got my butt kicked by Lisa on the course and by me in the bathroom. So I can say that Labor Day wasn't very good to me. Or I wasn't very good to me...I haven't decided yet! hahaha

postscript--The swelling didn't really start to go down until this afternoon. I still have a mark where I hit the counter, but at least now I can move my facial muscles without wanting to yell. Now, I just have a large bump, some forehead pain, and still have a headache but at least it's tolerable. And my vision is almost completely normal now in my right eye, so that's all good too! Remind me not to hit my head...hahaha

royal hylands and moving furniture

2005-09-08T16:34:00.000-05:00

Looking back, I decided the easiest way to do this was to try and go back and talk about my week. I have been so busy and so tired, I just didn't get to posting. I think the SBC DSL vs. XP wars are temporarily over, thank god.

Saturday, Lisa and I went and played a course that isn't too far from here called Royal Hylands. Several of the state public links championships have been played there and we had heard good things about it, so off we went. Honestly, it's the best fairly local course we have played. A tough course, but it was beautiful. I was amazed as I didn't really expect that. I had a blast! I didn't play very well as my timing was off by the time we hit the back side, but I certainly enjoyed it anyway. I admit, though, that Lisa did beat me. I guess if I'm going to brag when I win, I should say something when she wins. Of course, with my rhythm off and the fact that I was tired...let's just say those are my excuses and I'm sticking to them! hahaha Seriously, though, it is a course we're going to try and play again.

After playing, we stopped in a small town near there and had a couple of drinks in this absolute dive. Oddly, if you know us, this is the type of place Lisa likes. It reminds her of her trips up to northern Michigan. It reminds me of how much I dislike nascar. But most (that being the operative word here) of the people had teeth, so that was a little better than some dives we've been to. ;) After that, we stopped at this great restaurant on the way home. The food was excellent! We don't often spend money on a good meal, but this was worth it and we really enjoyed ourselves. My theory is that I hate to spend money on something I won't have anything to show for, so I usually would rather eat cheap. But I am glad we did it.

So, of course after having golfed, I was a mess on Sunday. I was really hurting and felt pretty weak. Our good friend Joan was having a cookout that day because her daughter was in the state to visit. What did we do then? We moved all the living room furniture. Seems logical...I feel like hell and we have to go someplace in a few hours, why not do something retarded like that? hahaha All was well until we had to move the TV. I just don't have the strength to do it anymore, yet if I dropped the television I knew we'd have to get another one and we don't exactly have that kind of money right now. So as I felt it slipping, I put it on my leg to keep from dropping it. Then I just told myself to give every ounce to get the damn thing on the cabinet. It worked, but that caused a bruise on my leg and my hand started swelling very badly. Like I said, I know now there is no way I can do things like that anymore. I don't know why I thought I could. And this was equally my idea to do.

It's hard for me each time I find something else I have trouble doing or am unable to do. That is one part of being ill that never gets any easier. Obviously, it's not any easier to write that either, as I just got up and walked away from the computer and did a few things around the house. I think I struggle with my disability and the fact that it continues to worsen with much more difficulty than I care to let on. Either in writing it or emotionally. It's not a matter of only looking at things I cannot do, because I don't feel I do that at all. It's when you are forced to see what you cannot do whether it's for safety reasons or trying to do something and discovering that it is no longer possible. There are still so many things I CAN do, and for that I am grateful.

Moving on, I wasn't able to go to Joan's cookout as I felt like hell. I basically spent the day Sunday just staying down and resting. I need to remember that rest is as important as taking my meds. It is something I have to do each day, whether I want to or not. It does help me feel better. Joan sent me home a plate of food, which was really cool. So I still had cookout food, which I just love. So I guess that day wasn't too bad either. But no more moving furniture!

So, you poor things that read this, you now have gotten caught up through Sunday. I hope I can get caught up on my writing before tomorrow night...it's hard to go back and express how you feel sometimes. And by tomorrow, I think I'll have some fun stuff (well, to me anyway) to share!

still here...will catch up

2005-09-07T23:49:00.000-05:00

I'm not giving up on writing...I have just been so hectic and etc. that I haven't gotten it done. Let's see, I just have to share a nasty head bump, fun at the golf tournament...just stuff like that. I am going to try to make sure and write tomorrow...but I didn't want anyone who happens to read this to think I fell off the face of the earth.

keep myself together

2005-09-02T10:13:00.000-05:00

I'm going to try this again. I swear this is getting frustrating. I need to learn exactly how to do this in word and then import it, until the patch is done from SBC. I hate not getting my posts up after taking that much time writing them.

I am still going. I'm very stressed, very tired, and not feeling that great but I can do this. The stress will get better, hopefully soon I'll get enough rest, and the not feeling good also has a lot to do with allergies. I'm going to head out to the golf course today. It will be the first time I've tried to golf since the disaster on Sunday, so I'm interested to see how it goes.

Heck, it's been so long since I was able to get anything really posted, I don't recall what I've written! I see my internist a week from Monday. I spoke to his nurse, and she swore that they didn't have the test results yet. Which is kind of hard to believe, but I can't force her to look in my chart. So, the mystery of what the tests said won't be revealed by either doctor for at least 10 days. I am going to live in blissful ignorance and assume that everything was okay. (Mainly because I don't see too many other options available to me...hahaha)

I am getting mentally prepared for the Solheim Cup. Okay, its not like I'm going to play in it, but I do have to drive down there each day and I won't know anyone. I didn't mind stuff like that before, but now that I'm not well it's a little overwhelming sometimes to do things on your own. I'll manage, though. It just feels a little daunting sometimes. It's amazing how far away everything looks when you don't have a good pair of legs with you.

Emotionally, I have been struggling a little bit. However, I have a new plan: I don't have to do well, I just have to manage to keep myself together. That seems more reasonable than my previous goals for myself. That I think I can do.

And with that, I'm going to post before I lose this one too.

sbc dsl vs. xp

2005-08-31T23:07:00.000-05:00

I wrote a semi-lengthy post last night, only to have it disappear on me when I tried to publish it. If it happens again tonight, I am probably going to scream. I hate that when it happens. Oh, crud...

part II hahaha

2005-08-29T16:18:00.000-05:00

Okay, part II. hahaha

I'm a little delayed getting this written, as Lisa heard the gas prices are going up a $1.00 a gallon soon today so I had to make sure my car was filled. You wouldn't believe the lines. It looked like we were evacuating or something...and I don't mean that in a humorous way as I know many people down there by the hurricane. Talk about a nasty storm!

Okay, Saturday we had my family over for my sister Jen's 30th birthday. It was really great, the only downside was that we weren't sure when everyone was coming and in the meantime things got a little screwed up. However, it was great to have all the family over. The worst part was that Lisa and I both had someplace to be much sooner than I hoped so we didn't get to visit as much as I would have liked. I can't believe my sis is 30! That's just wrong. She's making me feel old. Okay, it might be because I AM old, but that's not the point. hahaha It was great having everyone over here...I feel much more comfortable here than I do at my mom's house. Maybe it's because I can navigate it better, or that we can spread out a little further, but I do prefer it here. Now we just have to hope none of us got pink eye from my other sister....

Okay, I explained about my golfing activities in the previous post. So when I finally got home last night about 7:30, I was exhausted. 45 holes of golf in 72 hours, family over, errands, etc., and I couldn't hardly walk. I finally made it to the couch, and Lisa was a doll and helped me get dressed more comfortably. I was watching the Simpson's, which I really like, and fell asleep about 8:15. I got up this morning at 9:30. Do ya think I was a little tired? hahaha I woke up twice for about 15 minutes, managed to take my meds, and went right back to sleep. Wow...I don't remember the last time I slept that much!

I'm hurting some today, but not as much as I did last week. I took a hot bath this morning and I think that helped loosen up the muscles a little. My biggest problem right now is how tired I feel. It's exhausting being me, I tell ya. I'm not moving very fast, but hey, at least I'm moving.

A gal I know, Jodi, mentioned on Saturday that maybe I should not golf as much. Not because she thought that, but thought others might. I thought about it then and have quite a bit since, but I have to disagree. If I'm okay with bad scores and don't do it so much together...wait a day between or something for the most part...I really think it does more good than bad. I need it like air. It feels so good to be out there, enjoying the fresh air, doing something I love so much. I still don't know exactly why I feel that way about golf, but it makes me feel like I'm not sick, most of the time. The people I play with know I'm ill, and make sure I get parked close so I don't do too much walking...and when they do that I can forget all about it. Maybe it's because it's the last sport I took up and have always liked any kind of sport. It could be that there is so much about the game that is mental, and I can still do that part. I don't know, but when I'm out there I actually feel like I can breathe.

I know, it may all sound silly, but that's how I feel. I think I should write more often after I come back from crazy people group, but I feel so much clarity about what I like and what I don't. And I feel okay with those things. I even feel more confident about the decisions I make. And if you know me, you know that's a miracle! And it always makes me feel I deserve to be happy and have peace of mind. Okay...enough of that...it's annoying ME now!

I was just getting ready to post this when Bill called. I hadn't had a chance to talk to him since Friday, and we had a great conversation. I'm afraid my problems overtook the conversation (as they often do, unfortunately), but he really made me feel empowered about things going on in my life. I do appreciate him and he is so sweet to me...though don't tell him that. His ego, you know...hahaha

Well, I think that covers all the stuff since I last was able to post a decent blog last week. A lot of other things happened, but nothing of note. I am feeling pretty good, although a little tired, and feel very positive about things!

part I -- trying to catch up

2005-08-29T11:58:00.000-05:00

I'm not going to write all I want to in one sitting today, as I need to go to my crazy people group, but I did want to touch base a little.

We'll cover golf first. I golfed Friday, Saturday, and another nine holes last night. By the time I played last night, I couldn't hit the ball anymore. I would make contact, but with the edge of the club. It was ugly. I had one great shot, the rest were worse than bad. I wanted to not play yesterday, but the fellow I play with wouldn't have had time to find another partner on that short of notice. It was pitiful. However, now I know what it looks like and feels like when I feel that bad and try and play. And I can guarantee that won't happen again. Though oddly enough he and I won. Bizarre. (Of course, he's a hell of a player.)

Friday was okay fun. I still wasn't feeling my best, but I wasn't worried about playing it too seriously. A gal I play with Jodi, was going to go on a golf outing with Lisa and Joan and I on Saturday, and had never seen the course. So actually, it wasn't too bad.

Saturday, I don't know what to say about it. I didn't play that well toward the end at all. 18 is a lot of holes for me to do well on. I just get too tired. And considering how badly I felt last week, I just thought it a miracle that I was able to play at all. I was hitting off the tee okay, but the rest was hard as hell. I was putting okay, but the gals did most of that while I sat in the cart. I think Lisa had a great time...she and Joan visited a lot, and they even scheduled a bike ride for last night, which they took and had a good time then too. For me, Jodi was feeling a little unsettled, I think, because she knew she had the highest handicap. So I spent most of the day trying to make sure she was comfortable. I think I failed on that, because when I saw her at couples golf last night, she wasn't exactly warm and fuzzy. Oh well. I know I did all I could do. I hate to say it, but I didn't have a great time Saturday. I wasn't tired, just frustrated about a lot of things, and it was hard to focus on golf.

And now I have to eat and run...lol. Okay, scoot slowly.

too tired to write

2005-08-27T23:40:00.000-05:00

I have many things to post, I'm just way to tired to do it tonight. I wanted to let you know I am well, and will write ASAP. I am exhausted.

slightly better?

2005-08-25T23:04:00.000-05:00

Let's see. I spent most of the day on the internet and the phone. Oddly, I'm totally exhausted!

The cramping has let up enough that I'm not in excruciating pain anymore. Now it is more a feeling of discomfort, which at first felt pretty good in comparison, but tonight is getting on my nerves a little. My legs feel a little better as far as the weakness goes, I think, but I can't be sure because I haven't been on them very much. The horrible thing today is that it's hard to lift my hands and arms to shoulder height. Which makes eating, drinking and smoking a little harder than it should be. My arms feel so darn heavy and my shoulders feel so stiff!

I didn't call the doctor today, because I decided that I'd rather wait until I was sure he had the blood test and MRI results. I'm sure he'll at least have the blood work by tomorrow. The problem is also that I was hoping that since I wasn't hurting so much today, that perhaps I was getting better and didn't need to mess with it. However, it looks like I need to call anyway. Fun, fun!

And doggie update--she returned about 2:00 am. That was annoying, but it wasn't like I was able to ask her where she'd been. Maybe I need to give her a cell phone, and she can call when she's going to be out so late. I hate waiting up for the kids! hahaha

I need to go lie down as my arms aren't liking this typing too much, and I need to stretch out. That was the other thing today...it kept feeling like my body needed to stretch and no matter how much I did it, it didn't help. It would feel better for about two minutes before I felt like I needed to do it again. Oh well, I'm going to lie down and try it some more. It can't hurt.

I wish I had the energy to write more, because I have more to say, just not the energy to say it. Hmmph.

frustrating day

2005-08-25T01:08:00.000-05:00

I don't have a lot to say. I am still having trouble getting around, but I think it might be just a little bit better tonight. I'm not trying to be pessimistic, but I don't want to get my hopes up. I have noticed before that sometimes I'll have a few hours in which I feel a little better and nothing ends up changing. Of course, I've also had it go the other way too so I'm just going to hang in there and wait.

I'm depressed and scared. I'm frustrated. (All those are understatements, but what can I do?) I got up this morning to try and go to my golf league, but even though I was completely ready and sitting in the car, I knew I couldn't do it. I did everything humanly possible to go, but my legs and arms just weren't going to be able to handle it. Hell, I knew at that point I couldn't drive either. So I sat in the car for 5-10 minutes just crying. Isn't that special?

I did finally get to the hospital today for my urinalysis and blood work. They had to take seven vials of blood. My good vein for drawing blood was still a mess, so she had to take it from the back of my hand. Luckily, she was very good so I don't think it's going to bruise much. But all those vials, if that's not a record for me, it's darn close. I don't mind getting that stuff done, I just hate the waiting. But it's over and done with for now. They said they probably will have the results tomorrow afternoon, so that's good. I'm going to schedule an appointment with my main internist for next week so I can find out what the results were.

I cancelled all my golf for this week. I swear, bad news travels fast. Apparently the owner of the course told one of the ladies that I'm not doing well, and now of course everyone knows. That's okay, it just makes me feel a little weird. I did get some good news today, though. My friend Joan won the league championship today at the women's league I used to play at! I'm very happy and excited for her. That's quite an accomplishment...they have a lot of excellent players over there. So that makes me happy. Yeah, Joan!

And with that, I will get off of here and continue to see if I can find our little dog. Lisa let her out to do her business around 10:30, and she's still not come home. I'm awfully worried so I can't get myself to go to bed. Lisa did, but I guess I am a worrier. So I'm off to dog hunt from the back door.

possible downturn

2005-08-23T23:01:00.000-05:00

That was weird. I wrote a post last night, and now it's not here. It never did show up, the best I can tell. Oh well. I wasn't in a great mood when I wrote it anyway.

I seem to have taken yet another downturn. I got up this morning after finally getting some sleep, and my legs are so weak I can't hardly move them. They feel like they weigh 100 lbs. apiece. It reminds me a little bit of when I would work out and my legs would get stiff and sore, but this isn't quite the same. It's so hard to even pick up my feet. And what's worse is that my arms seem to be doing the same thing. It's like my limbs got exhausted for no reason and now I can hardly use them.

I had to cancel an appointment today with my therapist, who I really needed to see, because I just couldn't get enough energy in my legs or my brain to get there. I had to wait until tonight to get a bath, because I needed Lisa's help. It was pitiful in a way. Hell, she had to do all the work and I feel so bad about that. And honestly, I'm having some trouble typing right now.

I napped today, which was good, but beyond that I have basically sat in my chair today. I just haven't had enough energy or strength to do anything else. I hate this, and I'm really scared by it. I am going to give it another day, but if it is like this on Thursday, I'm calling the doctor first thing in the morning. I don't know that he can do anything, but I don't know what else to do.

I am supposed to golf in the morning. I am going to get up for it, but I really doubt I'll feel much better by then. All I can do is try and rest, I think. Perhaps I had just gotten so tired that my body is rebelling. It doesn't seem like that either, but I can hope. If this is a downturn, it's certainly a scary one.

I'm going to quit writing before my arms fall off. hahaha I felt it was important to get this on here, though. Keep me in your thoughts, okay?

I need sleep!

2005-08-21T11:58:00.000-05:00

Wow, I'm almost too tired to post tonight! I am still feeling pretty weak, but I did golf today with the couples weekly outing at the course I play. It's just nine holes each week, but I think that's plenty. I was teamed up with a really nice guy, John, and we played very well together. I had a great time, and you wouldn't believe all the food they had afterwards. They have a pitch-in each week, and there was tons of food, and I don't recall the last time I ate that much. It was all very good, and I was glad I was invited. The wife of the fellow I played with today had surgery, so she can't play for the next 6-7 weeks so John asked if I would team up with him in the meantime. I think it will be fun, and another good place for me to meet people!

Meanwhile, back at the ranch (literally...lol), Lisa has hurt her knee. She went on a 36 mile bike ride this morning with a group of people who do so regularly, and when she got back her knee was bothering her some. It's been a problem for a while and I think she might have overdone it. Tonight she stood up and was having trouble bearing weight on that leg and having a lot of pain. So I grabbed the walker, got her in the car and we went to the ER. As always happens to people, as soon as we got there she started feeling better. hahaha We drove home and put more ice on it and got some ibuprofen down her, and hopefully it will be feeling better by tomorrow. I do think it probably needs looked at, but it certainly is better to just go ahead and see the orthopedist rather than the hospital and THEN make the appointment with them. So anyway, the lesson learned here today was that Lisa cannot be left alone for any length of time. She's a menace to herself!

Tomorrow I am supposed to go to the crazy people group, but I don't know if I'm not going to skip it. Part of it will depend on Lisa's knee, part on if I feel well enough to golf, and then there is the guilt factor if I don't go. I know I picked a horrible name to call it, but I really do get a lot out of it. However, given that the weather is going to be cool and sunny tomorrow, I might just have to play hooky. :)

I need to get some sleep tonight. I didn't get to sleep last night until a little after 6:00 am this morning, woke up at 9:30 and was just dozing back off when Courtney called. Needless to say, I've been up ever since. I tried to take a nap this afternoon, but couldn't fall asleep due to the meds. I tell ya, I have got to get more sleep. I feel like I'm about to fall over onto this keyboard! I think it's beddy bye time.

company

2005-08-20T23:48:00.000-05:00

Damn, I have felt like hell the last few days. I haven't had any energy and have been hurting quite a bit from my reflex sympathetic dystrophy. Lisa did drag me out to dinner, though, and that was nice. IHOP, of all things, but neither one of us had been to one in forever. It really hit the spot, and afterwards we walked through the Goodwill store, just for something to do. And to top off our very exciting Saturday night, we started a jigsaw puzzle. Boy, we sure know how to live! hahaha

Actually I have had a very good weekend. Bill stopped by Friday, and it was great having company. We haven't really had a chance to get together for awhile, so it was nice to see him. Today, Joan stopped by as well and visiting for quite a while. That was really cool as well. It all has made for a very nice weekend for me. It is good to see people without me having to get out and go. I really need that sometimes, especially lately since I haven't felt that well. I really love having people over...okay I should amend that to people I like...so it really has made for a couple of great days.

Lisa is going on a long bike ride tomorrow with a biking group from here in town, and I know she'll have a blast. I hate missing her for most of the day, but it is good for her to do stuff like that. I think it allows her to de-stress and do something fun that I can't do with her. It sounds like fun to me, just not something I can do anymore.

I am supposed to golf in the couples group at the course where I play my ladies league stuff. It will be a first for me, as I don't exactly know a lot of guys to take with me. The ladies kind of set this up for me. Apparently this guy I'm going to play with is one of the best out there and his wife just had surgery and can't play this week, so they decided that since they think I'm the best female golfer out there we should play together. No pressure for me or anything. hahaha I sure hope I feel better tomorrow, because I sure couldn't have done it if I had to today. When the course owner's wife called me today, she said I could bring chips unless I wanted to make something. At least I didn't bust out laughing. I can't cook worth a damn, so I think they'll be safer with me bringing chips. It's probably a little rude to kill off everyone in the couples group the first time I'm invited. :)

Given that I still have a wicked headache and feel pretty weak, I'm going to get offline. It's supposed to cool down quite a bit tomorrow so hopefully I'll feel a little better then. When you have an illness that makes you weak to start with, the heat can really kick your behind. So I'm going to take my meds, get some rest, and be prepared to golf like a pro tomorrow....hahaha

lazy

2005-08-19T09:57:00.000-05:00

I became totally spoiled by being able to use Courtney's laptop to write in my blog. Now in the evenings, half the time I find myself on the couch feeling like it's too much work to come in here and write. That, I think, is primarily laziness. Or perhaps it's just because I'm just too tired. I don't know.

Yesterday I had my MRI done. I'm getting to be an old pro at it. This was my third scan of the brain in 14 months. (Insert your own joke here.) The technician was the same guy who did it the last time and he remembered me, so that was pretty cool. Unfortunately, today I have a huge painful bruise where they put the contrast in so I look like a junkie or something. Anyway, they'll compare the scans for changes and I'll find out in a month. I can't say that I'm particularly worried about it right now...it will probably take me a couple of weeks to decide that I need to be concerned. ;)

I did some hard thinking yesterday and last night, and I realize that I have been very depressed the last two weeks. I don't think it is because Courtney is back in school, although I do miss her. I realize I have many reasons to be stressed, but that isn't it either. I feel completely overwhelmed and depressed. I think part of that is because I keep running out of energy. I keep feeling wiped out by 7:00 pm, and that's no fun at all. I need to adjust the Provigil so I have more energy later, but I'm afraid it will keep me awake. It seems to be a fine line. The depression seems to be doing a number on me. I haven't felt overly well and I feel frustrated, and I find I haven't been taking care of myself like I should. I'm not lying down to rest during the day like I had been, and occasionally have had a beer or two when I wasn't even in the mood for it. It can work as a pretty effective muscle relaxer, but I don't want to get that started as a rule. A few years ago I had gotten into the habit of drinking too often for a while, and I don't want to start doing that again. It just leads to more depression, and honestly my body doesn't have enough reserve fuel anymore to help me bounce back later that day...or the next, for that matter. I don't think it's a problem right now, but I figured if I wrote it out, it will keep me mindful to not let it become a problem.

I also think I have felt more depressed because it's August and summer will be ending soon. I absolutely am NOT looking forward to that. And I think I'm depressed because I don't feel well and the docs seem stuck for the moment. It's hard for me not to go through an occasional depression because I get so fed up with being ill. I'm sure some people have much better outlooks than I do, but I have no clue how they do it. I don't know how to NOT be depressed once in a while. I can't avoid the fact that this really sucks sometimes.

Okay, enough of all that. I'm going to take my junkie looking arm and take my meds. So there!

neuro appointment and bad moods

2005-08-16T23:20:00.000-05:00

I keep telling myself I'm going to like this new computer as soon as I figure out how to get everything set. Lisa spent some time working on it tonight, and so did I. I swear, it's really, really getting on my nerves. I will get it all resolved eventually, I just wish I had more time to sit and do it. Perhaps tomorrow I can. Or I'll just never get on a computer for the rest of my life. That is starting to sound appealing too.

Let's see. Since I last wrote I saw the neurologist. He has ordered another MRI which has been scheduled for Thursday. He wants to compare it to the one done a year ago to see if there has been any changes. He also ordered quite a bit of blood work to be done. I usually leave his office feeling more relaxed about things, but this time I didn't at all. I've been hyperreflexic since my first visit with him, and over the course of the last two months since I saw him last, I am now extremely hyporeflexic. As a matter of fact, he had trouble eliciting any reflexes in my legs at all. This concerned him, and he mentioned he hasn't seen changes like this in his recent memory. Hence the work up I have to have. Lisa says its because I'm just difficult and want to be different. I think it's so I can have one more thing to be stressed about. I swear, this is really getting frustrating. I'm scared, but there isn't much I can do about it. I'll just get the tests done, and I am to go back and see him in a month and we'll discuss the results. Hopefully we'll know what's going on then.

I've been in a pretty bad mood the last couple of days. Not at anyone in particular, just about things in general. I found out Courtney's father is coming to Indiana, and that makes me extremely upset and stressed. We get along, but he is very controlling and demanding and I can't deal with it right now. He isn't in town yet, so I am at least good to go for tonight. Today I went to golf, thinking it would relax me. That didn't happen either. I swear, blind people could have guessed where my ball was going to go better than I could. Nothing went right in my round at all. I couldn't get any rhythm and I felt very tense...both of which are game killers. So of course I ended up more aggravated than I was when I started. Of course, losing four balls from the same spot into the water wasn't helping. It wasn't like the movie Tin Cup, where he was bound and determined to get it OVER the water. This water was completely out of my way, totally on the right side and every time I would swing the club I would toe it and hit it straight into the middle of the pond. It was very annoying. Usually I would at least find some humor in it, but I just couldn't find any today. At least they were crappy balls. :::big sigh:::

I am supposed to golf with my ladies league in the morning, so I best get off of here and try and get some rest. I may hang out there for awhile afterwards, just to keep from coming home for awhile. I guess I'll have to see how I feel.

new computer!

2005-08-15T04:13:00.000-05:00

Looking at the time, you didn't think I'd post, did you? hahaha That's okay, neither did I. I was starting to think I had dreamt up the internet as a pain in the butt as it was to get here. I'll tell that story in a minute.

Well, we bought a new computer. We had reached a point with the last one in which it was kill or be killed...and I can tell you right now I had no intention of going first. hahaha We brought this one home this evening...and just now am I getting it going. I made two phone calls to the tech guys, the first because the computer acted up right away. That's when I found out I had managed to get a virus just checking to see if I had an internet connection. (I already had two virus protection programs on...they think it may have gotten in before they were installed.) That stunk big time. So we cleared that up and 45 minutes later, I had a worse problem. When I called back, the next guy explained that apparently the virus had compromised my computer and I had to completely reinstall windows. That was fun...NOT. And now here I am, with two virus protection programs running, updated and if it crashes again I'm probably going to throw the computer out the window, go attack the people at the companies who make my anti virus software and move into a cave. What a long night.

Tomorrow should be interesting as well. :) I want to see the end of the PGA championship which will be on at 9:00 my time, I believe, then I need to go to the crazy people group, and from there straight to my neurologist's office. That is going to be an even longer day. And if I feel up to it, I need to install my main ISP on here so I can access my bookmarks. Other than that...

Today was also our neighborhood picnic. It was nice to see everyone, but I guess I didn't realize that everyone knew I am disabled. That was different...and made me feel a little awkward. But the good thing is that now if they see me lying in the yard, they'll probably decide I might need help rather than think I am passed out from drinking! ;) Of course, I suppose that could be the case too, but they don't need to know that. Ssshhh.

Okay, I'm exhausted and I'm going to head to bed. I have done all the damage I can do for one day. The good thing is that I'm not nervous about my appointment tomorrow. There isn't a darn thing I can do about anything that happens, so I might as well roll with the punches on it.

I truly feel like hell

2005-08-12T17:40:00.000-05:00

I truly feel like hell. I'm still hurting a ton, and for some reason I have a horribly upset stomach this afternoon...and now I'm getting a headache. This is absolutely no fun! I guess on the bright side, it's so hot outside I probably shouldn't be out doing anything anyway.

I did have something great happen this week...I finally received my tickets to go to the Solheim Cup in Indianapolis (including full passes into the Ping Pavilion where the bigshots go, thank you very much)! The tickets include the practice days and the days of the actual tournament (September 6-11). I am so excited about this! And in the information packet that they sent, they have handicap parking available, and scooters that one can use. It does say that because of the course layout, there are some places that the scooters may not be taken, but I think this is great. It says they are available on a first-come, first-serve basis, but I am going to call the contact on Monday and see what can be arranged. Using the scooter would make this event so much easier and more fun for me. I could actually go and not get exhausted...and that would be great. I can't wait to see the best women golfers in the world up close. I can't imagine how exciting that will be! I can't imagine watching Annika Sorenstam golf. I am even more excited about this than when I went to watch Martina Navratilova play tennis. Heck, any time you get to see the world's best at something, it is awe inspiring. Watching Annika golf will be amazing...and yes, I'm going to try to get an autograph. (Of course, I'll have the paper folded over...it really will be adoption papers hahaha) You can also take your camera to the practice sessions, so I'm hoping to get some great shots as well. Lord, I need to finish my website so I can post them. Okay, I've probably written enough about that subject for now, as I imagine I'll write quite a bit about it later. :)

My computer is still acting up...I hope I can post this as well. I have no idea what's wrong with it, and after two days of trying to fix it I'm going insane. I basically can only do e-mail, as it won't let me do anything once I get to other sites. Heck if I know what's wrong with it, but it really upsets me. On days like today when I feel badly and am home all day by myself, it really is my way of staying in contact with the world. I know that probably sounds silly, but I do feel that way. And there are tons of games and stuff I like to play to distract me, and I don't have that either. Arrrrrrgggggghhh!

Another good or bad thing that is going to happen (I'll know which after the appointment...hahaha) is that I see my neurologist on Monday. I hope there is something more that we can do. I think we're doing a great job at keeping me moving, but the cramps are problematic and the side effects of some of the meds are annoying...like fatigue, etc. Ironic, since I have to take them to keep moving. I keep hoping that he'll decide it's still not time for an EMG...the longer I go without it, the longer until he tells me something truly awful...hahaha. I really don't need one to tell how I'm doing, though, but I do for some of the medication trials. I am not going to say anything regarding my preferences of what we do; I'm just going to let him decide. If he asks my opinion, like he usually does, I'll just tell him to do what he would do if he were me. Now if he pulls out a gun.....

Okay, enough sick humor for today. Lisa just walked in and now I need to hide! hahaha

still here

2005-08-11T22:52:00.000-05:00

Nope, I didn't disappear! I am feeling like hell, so I'm going to make this quick. We moved Courtney into her dorm yesterday...and I totally got screwed up on my meds again during the day yesterday. I know, you'd think I'd learn.

This is the first time I've had spasms from my neck muscles all the way down to my feet. It totally stinks. My medicine will help keep new problems from arising, but won't help what has already occurred. So you can imagine how awful I'm feeling. I worked on the computer off and on all day, and this has been the first time it would let me get to anywhere I wanted to go. At least I get to put this in tonight.

I wish I could write more, but my arms are killing me. I've got so much to relate, and no ability to do it right now. I'll try again tomorrow. However, I'm still kicking and didn't disappear! A lot can be said for that!

busyness

2005-08-08T23:30:00.000-05:00

It's been a long day. I woke up way too early again with not enough sleep and I feel like I've been going ever since. It seems getting Courtney ready to go off to school doesn't get easier no matter HOW many times we do it. There is always so much last minute stuff to do.

I can tell you I'm really going to miss having her home. I have enjoyed seeing her so much this summer, although I wish we would have had more time. Of course, all moms probably feel that way. It's kind of nice because after all these years, she's pretty good at sensing my moods and what is going on with me. That's been especially helpful this year, since my health has stunk so much. I am so bad about asking for all the help I need, and she makes it easier by knowing it sometimes even before I do. But it's time for her to go be a student again.

My medicines are getting a little more on track, which helps. I took the second Provigil a little later than I should have, but not so much that I should have a lot of problems. I definitely feel better when I take them when I'm supposed to!

I do have to say I feel pretty run down right now, and pretty sore. I did quite a bit more than I should have today, but I did feel like I accomplished some stuff at least. And you will be impressed to know that when I went to the department store with Courtney today, I actually let her push me in the wheelchair! I hate using one, but that was the only way I could see being able to spend the time we needed to there. I prefer the scooters, but this store doesn't have them. Being in the wheelchair is weird, because the person I am with is always behind me and it makes it hard to communicate. And everything sits up too high for me to be able to see the clothing as well as I'd like. Oh well. It beats sitting at home.

I didn't go to crazy people group today and that makes me feel a little off too, but I wouldn't have had enough time or energy to get everything done I needed to do today if I had gone. I see my therapist tomorrow anyway, so hopefully that will work out okay. It was kind of nice having a break from it. It's good for me, but emotionally exhausting.

So now I'm going to take my bedtime meds and see if I can get some decent rest. I don't see things slowing down much until about Thursday! hahaha

stressed, but trying to work it out

2005-08-07T02:01:00.000-05:00

I believe I mentioned at the very end of my last post that I didn't want to feel like hell the next day. Well, I did feel bad. I woke up fairly early again, and felt like I was about to have a nervous breakdown. I was feeling overwhelmed, anxious, and depressed. I called my therapist and shockingly, she was able to see me about 45 minutes later. I was pretty impressed. We talked for over an hour and I felt better for a while, but all day Friday I was just a bundle of nerves and totally stressed out.

Today (well technically yesterday) I just haven't felt very good. I had a pretty bad headache that was bothering me, and no energy. I had totally screwed up my medication schedule, but at least tomorrow I should be back to normal on that. It is amazing the difference when I either don't take all the medicine I need, or take it all at the wrong time. And I've managed to do both since Friday evening.

I think my biggest problem is that I've got so much on my mind, I can't get settled on any one thing. That makes me stressed, because then I can't resolve things like I need to. I've finally gotten royally pissed that I'm ill, Courtney heads back to school on Wednesday, and I've got some other problems I need to deal with that are extremely unpleasant as well.

My therapist suggested that I need to get away for awhile. I really want to do that, but I don't see how. Physically I think I can just about handle it, but financially is always another story. I want to get away from all the mental triggers of my illness for a little while. I also know that if I just hang in there, I'll probably feel better about things before to long. I just can't seem to get a grip on stuff right now. And I honestly don't know how to explain how I feel. I've been stuck for a few days not being able to understand or describe it. I can't even get a handle on exactly what my emotions are.

Other than the above thoughts, I really haven't accomplished a darn thing in the last few days. Calling my therapist was amazing as I had never done that before, no matter how upset I've been. Perhaps I'm learning to ask for help? I'm hoping I'll wake up in the morning and all will look a little brighter, because it looks pretty upsetting and dark to me right now.

It's not all bad, though. I have a great partner, a wonderful kid, and a few pretty amazing friends (a sib can go in that category, can't they?). I have a couple of good doctors and other medical professionals and that helps. And I'm still walking! Not very well or very far, but it's better than not. And sometimes I golf pretty darn well. These are the things I need to keep in my mind when I feel this way...and I'm trying, I really am.

long day

2005-08-04T02:04:00.000-05:00

It's been a long day. As you know from my earlier post, I got up pretty early today...especially for me. I feel like I've been going ever since.

I golfed 9 holes in a heat index of 105--and I played extremely inconsistently. Imagine that. I lost four golf balls...that usually takes me a month--and I shot 10 strokes worse than yesterday on the same course on the same 9. Geesh. I also went shopping with Courtney...basically I've been doing stuff all day, and a lot of it in the heat. By the time I got home tonight, I was so hot I was feeling pretty confused. I wouldn't be surprised if I had a touch of heat stroke.

I'm feeling better tonight, although I messed up and took the 2nd Provigil a little later in the day than I'm used to. Now I'm still awake and I know I should be out like a light. I'm tired, I just can't sleep. I didn't think the med would still be in my system at this hour, but it's the only thing I can think of that could be keeping me awake. That is the definite downside of the medication--which I need to remember to have more ordered for me tomorrow.

An interesting thing I learned today, although it may only be interesting to me, is that I figured out my handicap, and I'm sitting at about a 20 as of this afternoon. Not too bad for a crip, I say. Another amazing thing is that my handicap would be that low, relative to the majority of golfers, given that I have been playing different courses all year. I played one of them twice, and one of them four times. I also discovered I've played a total of 20 1/2 rounds of golf (not counting a scramble or two), and I think that's pretty darn good considering my health. (For comparison, last year at this time, I had played just under 75 rounds.) Also, I have an opportunity regarding golf to look forward to, but I don't want to mention it for fear of jinxing it. All I'm going to say is, a possible tournament.

Given that I've been up for 19 hours, I should probably try to lie down. I know that I feel worse when I'm tired, and I really don't want to feel like hell tomorrow. It was kind of nice getting up so early. I'll have to try that again sometime! ;)

support group unrest

2005-08-03T07:45:00.000-05:00

I was entirely too tired to write last evening by the time I had a chance. I also feel another bad mood coming on, so I thought I should write before it hits. hahaha

My online support group has broken up into three separate groups. Lovely. Everyone started attacking everyone else, and for some reason this causes me horrible stress. You wouldn't think it would, as I haven't actually met these people, but since I correspond with them all on a daily basis it is very upsetting. Two days in a row I've been very busy through the day, and only had a chance to check my mail in the morning and in the evening. It is amazing to me what all can happen in the span of eight hours in cyberspace. So I came home last night after golfing one of the best nine holes of my life (the other nine wasn't bad either), we went to eat, I got online and find out that now there are three different groups. Damn! I had read the e-mails around noon, came home, and find that bunches of people have left, two starting their own groups. I haven't even started reading the stuff yet today...nor most of the stuff from late yesterday. I'm a little afraid to because I know I will get in a bad mood, yet I also need to find out where my closest buddies are and what's happening with them.

I'm supposed to be golfing right now...but I can't do it. I am too stiff and sore from yesterday. My head kind of wants to, but my body is pretty much screaming no. I figured then that this is a good time to just relax, write my blog, read the paper and stare out the window. You wouldn't believe all the different birds we have that come here. I need to put out my bird book so I can identify them...but in a way I'd rather just enjoy them. The cats certainly do! hahaha

I do want to point out one thing. I can golf and not write forever about it! And can you tell I just woke up? :)

foul mood

2005-08-01T23:46:00.000-05:00

The only reason I'm posting tonight is because I feel like I should. Probably not a good reason, but there you go.

I'm having some problems with allergies, and my legs are feeling super weak, and my arms feel pretty lame as well. This really, really stinks. All of this is putting me in a very foul mood.

Lisa and I went to the ALS support group meeting tonight. They brought in an occupational therapist to talk to us. I had worked with her in the past so that wasn't too bad, but I guess I was in no mood for it tonight. The only thing I felt we got out of it was that it's probably time I get a gait belt for when my legs are this weak. This one guy who had lost is wife and is obviously still grieving seemed to get pissed when I said there was such a thing as too much information. He slammed his hands down on the books he had brought with him and said that it is the responsibility of the caregiver to KNOW all this information, to know everything there is to know about the disease. Well, screw him. I don't want Lisa to be my nurse, I'd rather her be there for me emotionally. And honestly, I know all that we need to know about it. Lisa doesn't need the stress of all that stuff that may or may not even happen. It just really annoyed me.

So there you have it. I'm in a very bad mood and I don't feel like writing or talking about it. I just felt I should put that out here.

a not very exciting Saturday

2005-07-30T21:55:00.000-05:00

Before I write anything else, I wanted to say that Bill made a good point in his comment to my last posting. I have been doing a lot, and that would cause me not to feel very well. That is definitely occurring. However, having been through progressions with this before, it feels much more like that is what is happening again on top of not feeling well. Obviously, I would prefer that I am just tired and worn out, but it's not the same. I don't think I have explained the difference very well. I don't know that it matters, other than some people might be interested at some point. (Lord knows who!)

Each time I have gotten worse, I have noticed a very marked decrease in my coordination. It's like the rhythm isn't right on anything that I do, including the natural rhythm one has while walking. I get extremely clumsy. Also, I just don't feel right. With each decrease in my abilities, I have had a period of time where I don't feel the same. It's as if my muscles are completely confused. The natural movement that I have is disturbed. It requires more concentration on my part to perform every day tasks. Perhaps I can give a couple of examples. Normally when I walk, it's left, right, left, right. However, during each exacerbation of my illness, my body gets confused and I might go left, right, right, left--and oftentimes my leg doesn't move when it's supposed to. I have to catch my leg when it starts to go in the wrong order so I don't trip. Since I've learned to do that, I don't fall as often at all. Another thing that happens is that when I reach for things, sometimes my brain completely doesn't understand the distance involved. I might reach for a glass, and stop a foot short, miss to the side quite a bit, etc. That's what I mean about how it seems different. Much more thought is required to do simple tasks. I can't even begin to explain how it feels different. I can say that my muscles feel confused, which is extremely accurate, but I don't know for the life of me how to adequately describe that. hahaha :)

I haven't done much today. I had decided to have a quiet day to let my body and mind rest. Unfortunately I am not sleeping much, and I feel the need to keep busy. I feel very restless. At least I didn't go running around today. I did get a lot done on the computer that I needed to do, and feel pretty caught up there. Given how time consuming that is, I'm glad it's over for now.

It appears neither Lisa or I can sleep the last couple of days. She got up around 3:30 this morning when she realized I was still up. We stayed up for quite a while just vegetating. I did finally get some sleep, but woke up with a start feeling I needed to be up right away. I know that I am very worried and concerned about the MND. I am worried about what the doctor will say when I see him. I'm afraid of getting worse. I feel a frantic need to do things that are physical. I want to sleep because I'm tired, but another part of me doesn't want to do it. My therapist thinks that I have a fear of dying that causes that. It's certainly possible, but hell if I know what does it. I feel like I'm in a hurry.

As far as Lisa not sleeping, I'm not sure what's causing that. I don't know if it's my being ill, stress from work, or what. Work is going very well, so I doubt that is it, but it is so unusual for her not to sleep well. Usually, she is a person who can go to bed early, fall asleep right away, and get up and going pretty easily. Well, except for some weekends, when I think she tries to see how long it takes for bed sores to develop. ;) I hope she can resolve it soon because I know how much it stinks to not sleep well.

I really don't feel like saying anything else tonight, so I'm just going to stop here. Maybe I'll write later, who knows. Hell, I don't know much of anything right now. (Not that I did before--lol)