Monday, February 7, 2005  3:33 pm  <|>
<207> A Year Of Being... Better?: This is a post I've been thinking about writing for over a week now. One I first planned, knowing coming events, then one I had to skip over due to plenty of reasons, and now one I write, looking back on everything that has happened not just in the last year anymore, but in as long as a lifetime and as short as a day. It's kind of an exhausting thing to do really, but something that must be done, especially by me, especially now....

What a couple weeks I've had. I have had colds and things off and on (mostly on) since the day after Christmas. And, even though now things are finally seeming to be a little calmer on that front, this is probably only because I've had multiple other health related things to deal with. The week before last I still hadn't been feeling that great and that Wednesday night I had been working on my computer, feeling kind of tired out but nothing specific. When I went to stand up, I got this numbing feeling throughout my body and crazy chills came on that would not stop. I didn't seem to have a fever, but I went to bed still shaking. By morning, I had a 103.6 fever and felt terrible. I couldn't even think straight. Dan even had to stay home from work to take care of me. I feel asleep off and on and by 6pm when I woke up a final time for the day I felt a lot better, the fever had broken (I'd been taking Tylenol all day to help it along) and I was able to go out to our living room for the first time all day. The next day I stayed home from work again, but I felt a little better, mostly because I'd felt so awful the day before there wasn't any other way to feel but better. I even managed to make it to a dinner/concert that I'd bought tickets to the week before, though that was about all I managed to get done that day. The weekend came and I started feeling pretty bad again, plus the left side of my face started to hurt. By Sunday, it felt like someone was stabbing me in the side of my face all over and I couldn't do anything to stop the pain or even lessen it, it was terrible. Turns out I have a skin infection, which is not uncommon for people on immosurpressive drugs or steroids - lucky me - I'm on both. Imagine having a cut infected, except an entire side of your face. Yes, it's painful. It got all swollen and gross and I will spare you most of the details. It's doing better now, though still there, at least I'm not in constant pain. I had to miss 5 full days of work and didn't have a full day until this past Thursday.

Now here comes the second part. Friday I had my regular transplant check up. The last time I was there a couple of weeks ago, my kidney function levels were rising slightly, but they didn't feel there was anything they needed to change. Well, needless to say if something is rising and you don't do anything about it and go weeks without checking it again, it stands to reason that the levels will be even higher the next time... which is the case for me now. They think it *might* be one of the blood pressure meds I'm on combined with me not drinking enough liquids. Umm, ok.... this is possible, but it seems rather strange. Then it might also be that I've been sick and had this skin infection... but the levels were rising long before that showed up. And, having just gone through the acute rejection in November, you would think they'd be more concerned. Well, I just don't know. I'd move to another hospital if there were a better option, but in reality there isn't one near here that would be too much better. So I'm working with my social worker to get the doctors to change a little (long story that I won't get in to), but the whole thing overall is frustrating.

This is not the post I was prepared to write before. I had planned to write on the 3rd, because the 3rd of February marked the date of the 1 year anniversary of my kidney transplant. One year of being better, that is what the title of this post is talking about. But now, looking at the events of the last few days, you have to wonder how far I've really come. It's still an amazing thing, don't get me wrong. My life would still be so different and worse off if I hadn't had my transplant, but at the same time you look back and want to see such a wonderful year and really it's a lot of bumps, full of ups and downs. Some are to be expected but ever since what happened in the hospital following my transplant, things haven't been the same, my new kidney never fully recovered, and now it's time to refocus on this and everything else that's taken place since and evaluate where I'm at.

It's not an easy thing to approach, especially not when I have a whole life to manage, but it's one of those things that is really up there at the top of your priorities whether you want it to be or not. You always end up with more questions than answers at most stages of life's game, but sometimes you just get fed up and want even just one solution before you move on to other problems. For me, being sick is such a big part of my life - it changed me and everything about me in one way or another, and has effected everything to the core in some way, directly or not. There is no way to get around it, no way to avoid it and even when you are "doing better" it is still there and can strike at any time.

Most people take their health for granted. I don't see it as much because you can't know me well and not be affected by it, so most people I know are more aware of it than the general population. Everyone in my life is affected and it's so much there that you don't see it most of the time. It keeps me from being completely 'normal' and even to the people closest to me who do their best to be understanding, can't help but be affected by it... whether it means seeing that I'm not always able to hang out the same way, or am too tired to do even simple things, or need more alone time than others. I am guilty of it too, because no matter what when you have something that limits you what you really want is for it to not be there at all. And it's frustrating to no end to encounter these problems over and over again when you just can't explain why you look and seem the same, but inside you are not. When you stand up to it all and face it with strength and push on, you overcome a lot, but then those times you can't do it anymore it seems like you are "letting it get the best of you" when really you just need a break sometimes. Well yes I get tired of being strong, most people do eventually. And you don't lose this ability only at the worst times. Sometimes you might be able to overcome the hardest stuff more quickly than the little things that build up and build until you just have to let them past you once in awhile. I think I've been at that point here and there over the last week too. I'm tired of being sick, plain and simple, and I need some kind of break when I'm facing more problems than I care to right now. And things just begin to wear down on you when there is little let up in between. I'm not asking for complete understanding, maybe just forgiveness for that day that I'm not feeling like even being nice about the fact that I seem like I don't care what other people think. Fronts are tiring and I learned long ago not to let them build up because it is simply not worth what amounts.

Now that my rant is out of the way, I'll say this: I feel like I've been trying to consider a lot in my life recently.. not only health stuff but all kinds of things. Some days I'm ready to plan out half the future and others I just want to get the day over with... it makes for quite a moodiness at times I'm sure. All in all, things are pretty good when you can look at them from off to the side...

Now I finish this post much later today... it's almost midnight. I started writing at work, which I only do when I really need to sometimes. Now I'm feeling much different - which goes back to the whole moodiness thing, haha. I heard back about my blood test from today. My levels are heading back down, so for whatever reason they were running so high, be it from being sick and low on liquids, or that the skin infection is really starting to go away now, or what have you, the point is it's going in the correct direction for once and at least that is something, right? It doesn't change everything, but it does show some control existing and I will go with that for now. All in all, I'm going to take it one thing at a time and I will just have to see where I end up.