Friday, October 29, 2004  11:10 pm  <|>
<192> Repeating mistakes: I try throughout my life, given especially all that I have been through thus far, to keep a positive outlook on things. But, as you might imagine, sometimes that is hard to do. And because I've had so much experience with my health issues, I have learned and been reminded over and over again that you cannot trust anyone completely, but you have to rely on yourself first, even before the doctors sometimes. It is this situation that I have found myself in times before and now again right now as we speak.

For those who need a recap, I was diagnosed with Lupus when I was 14, in the middle of my freshman year in high school. During my junior year, some routine tests showed that the Lupus was affecting my kidneys and I went through some monthly IV treatments to counterattack the damage. After 6 months of this, things were better, and I went back to my usual high school life. Then, during my sophomore year of college, right in the last week of it in fact, it was discovered I had complete kidney failure and I had to go on dialysis. 1 year and 9 months later, I was able to go off of it thanks to a kidney transplant from my mom (this past Feb). Now of course they've followed me closely all this time, but sometimes I question their actions towards medication and treatment in general. This sometimes falls on deaf ears and sometimes not, but in the end allowing myself to trust in my doctors has once again caused a decline in my health and my trust in the system overall. Honestly, I'm growing tired of it. My spirit does grow weak sometimes, especially after the last ordeal which followed the transplant, that was also due to treatment against my own beliefs and feelings... They've been trying to lower one of the medications, Prednisone, that has kept my Lupus in check since I was 14. A drug that for those who are on it for long periods of time like me, does not come out of your system easily, or sometimes, at all. So I expressed over the last couple of months, each month when I went to a checkup, that I did not wish to lower my prednisone too much because of my past and because I wanted to at least get over my 1 year mark for the transplant itself. The usual doctor I deal with had no problem with this, but the last two months before this past Monday, I had a different doctor per chance, and he insisted, against my wishes, I lower my dosage. Now come this past week, my levels were high and I come to find out they've been going up slightly for the last couple of months, directly in the same time frame since I've been lowering the Prednisone. First of all, it's strange they didn't tell me this before now, because I would have spoken up now, but would they have even listened if I had?

Let's move to present day, this morning I went for a kidney biopsy, my 3rd in my life, but my first for my transplanted kidney. I got the results tonight, there is some attack on the new kidney and he thinks I'm going to need to be on Prednisone... I have been telling them this for months!! It's amazing. I'm working with the hospital social worker for the department and everything now. This isn't the first "mistake" they've made her and now I'm not sure I can believe in their treatment for me at all. I believe they are all nice people, good doctors for most patients, but it turns out I am a much more special and complex case than anyone, even I, ever thought. So what I do from this point is hopefully somewhat standard, but if nothing else for me is standard, can I trust that this will be at all? I try to hope that there will be no problems now that the issue has been recognized, but that part of you that can never be sure, that can never fully let down it's guard... it's hard to keep up sometimes. They said the Lupus could not touch the kidney or affect me at all once I had the transplant, almost all patients have no Lupus every again, but the keyword there I must assume from their point of view is "almost" - there must be the select few that this does not apply with. Now yes, they would think that me being young and no other complex health problems on top of the already complex network of problems brewing, wouldn't fall into that rare breed, but it must happen, it must be possible. So here I am, for all I know, maybe I have never had Lupus, maybe I have something similar, maybe I have something totally different - who knows. But it looks like the break I was taking from my constant research needs to end. It already has actually.

So right now I am on much higher doses of Prednisone for the next week, then they'll run another blood test on Friday. We'll see how that goes and hopefully my kidney is responding to the medicine. And at least they will have to realize that I was right and I've been right because the last two times I had kidney involvement were also because my doctors at the time were trying to lower my medicine further than it should have been lowered. It's frustrating to say the least, but I just have to continue to speak my mind.. you should always speak up when you feel you have reason to. I'm not saying to defy what doctors tell you, but you have to have questions, and look for answers, where you can.

So I'm sorry tonight's rant has been all on this one subject, but it is mostly what is on my mind right now which I'm sure isn't hard to believe. In other news, I'm still working on Sticky Art, getting the next edition setup as soon as I can hopefully. I consolidated my student loans tonight, pretty exciting, huh? It's something I've been putting off, enjoying my 6 month grace period after graduation. But scary enough, my payments would start in January as of now and the due date to get the low interest rates is the end of November so I went ahead and took care of it. I wasn't really allowed to move around a lot after my biopsy today, I had to stay at the hospital for a couple hours, then they did a blood test and another hour later I was free, but was told to take it very easy for the next day, then watch myself for the next couple of weeks. I'm sore, but it's not awful. I haven't even had to take any Tylenol yet, though I might to go to sleep.

Tomorrow is Jon's Halloween party at his new place. I haven't seen it yet, so I'm excited about that and intend to go, but I have to see how I feel tomorrow between today and the high dose of medicine. It seems that just when I finally have plans to do something, especially to be social, something medical comes up to try and stop me. I try my best to prevent that from happening, but often you are helpless in certain respects. Ahh, but you take it time by time and you do what you can to hold on to what control you can. I need to make it through work, at least through into next year from as much as I can. Not to mention the obvious that I don't want to be sick again, I don't even want to think my kidney could be damaged even more now. I'll have to start considering other hospitals and doctors to talk with in the area. I've always took careful care in knowing where I was going and who I was working with, but sometimes once you get into a situation you have to allow yourself to change it and not only in times when things aren't going well. It's hard to want to shake anything that isn't shaky, to fix something that isn't broken... but sometimes preemptive attacks aren't such a bad thing... this if of course my thoughts on health.... NOT my thoughts on political and military events....

Voting happens on Tuesday. I'm voting for Kerry and I'm thankful to vote I can do so before work on my WAY to work as the voting center is a Temple on the corner of my block. Very helpful I must say. This will be the first time I will be voting in Philadelphia. I thought awhile ago I didn't have to worry about the outcome of this election. I have a lot of strong views on certain things, but often I try to stay as far out of politics as I can. I do not choose down party lines when I do have to, at least I try not to, I try to always look at the people running, what they say they believe in, and go from there. Because of this system, I find I rarely choose anything but the Democratic side (though I have voted for local level Republicans in the past so I prove my point) I think you have to look at the issues that deal with the position the person is running for. In the case of President... Clinton would always get my vote, if he had reran it would have been great, I think he'd probably been elected... but I doubt he'd ever put himself through that again... I doubt most presidents would once they get through that... but Kerry I think will do quite well. He has thoughts in line with what I believe should be our countries actions environmentally, prochoice, and economically for starters. But you should choose the way you see fit always. The thing with politics is that people take it so personally, and when you look at the issues that effect your life, yeah you probably should... but then you look at issues that have to do with the way corporations run their businesses for profit. Yes, we should do well as a country, but reputation and allies are important to, whether we are the most powerful or not does not mean anything if we are hated everywhere, even within our own country. But enough of political for tonight, I'm too tired. Maybe I'll still be writing more often, I'm not feeling too bad and my energy is returning, so we'll see has this course of action goes. The past health problems have warrented a few good things, and some of those has been intense bouts of creative and other energy. I'll take what I can get, especially in that I've been feeling pretty tired the past few months. It would be nice to find a clear head again, if there is such a thing. So we'll see how it goes, I'll probably write again soon, but don't worry if I don't. Until then!