Saturday, March 18, 2006 5:03 pm  <|>
<247> World Upside Down: Everything is off. Nothing is quite clear. Everyday I think a little differently, and sometimes this is good, and sometimes not. I really don't know what's going on anymore. Everything's been turned upside down. My whole world. And I didn't want to come back here, especially not now. Part of me feels like it was willed, but could I have really done that to myself? I cannot let myself believe that to be completely true. It's just, I just don't know what is going to happen from day to day, even moment to moment... and it doesn't get any easier at all.

Two years ago I was recovering, but headed for a new chance at life, but even then it wasn't smooth sailing. I knew even from then that this day would come. I couldn't be sure how long I had, but I suspected it wasn't as much time as I would like. Then sure enough, the following February after my transplant I got really sick all throughout the winter months and that was hard then. It hurt the kidney more and we had to worry, but in the end I could keep going on. Then I had a great summer at least. I took on school and was determined and I have no regrets still. If I didn't start it then, would I ever? I doubted I would and as things are going now, I'm ever more sure of my decision. But those plans now have to alter anyway too.

So this winter came and I knew deep down that I was scared for what it might bring. You see, when you are on medications that suppress your immune system, well, you are bound to catch some trouble when the cold months come. And so I did. I had a cold going for a good month straight and then around February it started to change even more. Additional symptoms came into play and I ended up getting so dehydrated that I was in almost constant pain in my legs and ankles and no matter what I did I just couldn't seem to fix it on my own. At transplant clinic they told me to go home over the weekend and try to drink as much as I could. I felt so awful. I did my best but I could barely eat or drink anything. I had hoped they'd put me in the hospital to give me fluids and the fact that I had wanted that on my own shows just how terrible I really felt. More tests and things occurred and in the end I ended up coming into the hospital on that Tuesday morning, waiting in the doctors office most of the day... all I wanted was to get hooked up to some meds or fluids but instead I just waited and waited. I felt so horrible. When they finally did admit me, I eventually got hooked up, but not without a lot of other trouble (it's always hard to get an IV on me, near impossible when someone is super dehydrated). That part was really terrible too. I've already begun to stop thinking about it clearly anyway, not to mention the whole month I pretty much lost track of time. I was in and out of the hospital. That first time I was there maybe a week? I'm not even sure. But I ended up coming home for a night and going right back, through the ER this time... it's pointless for me to retell the story.. all I know is I went back and forth to the hospital several times, was there overall for several weeks, and took too many trips in the ambulance for any such period of time. And in the end, the bottom line, is they are pretty sure my kidney has failed.

It was determined that I had a bad infection in my kidney that I couldn't have detected myself because of certain meds I'm on anyway. The doctors apparently didn't even think of infection when I was explaining my problems that first week, though really they probably should have. They put me on high dose IV meds, they gave me fluids, but in the end, they decided it wasn't enough. I've had to go back on dialysis and while there is just the slightest chance it could be just temporary, the doctors aren't doing very much to encourage the kidney to go back to working... in fact they haven't even been checking the working levels like they are supposed to even though I've asked on several occasions now. I'm terribly upset with the way everything is being handled. Now I'm figuring out transplant options and wedding plans at the same time.... it was never supposed to be this way. I have to question why karma is kicking me just this far. I could also mention how while I was in the hospital Dan was told at work that last week was his last week. He knew that everyone was being let go in June, but suddenly they decide they have to let people go now and that includes him.

So two artists, both out of a job... one let go and the other just not sure she's going to be able to work - at least not the way I was. It's not that I totally don't want to, but dialysis makes me feel so terrible. I don't feel I'm able to drive (which is a problem when I need to drive to NJ everyday for my current job). I really need something that let's me work from home or really close by part time in the city. I'm thinking of applying to a couple jobs like that. Of course there is no promise that I'd get any of those jobs. And I feel terrible about leaving the job I just took after only working there a couple weeks... and those couple weeks I felt terrible because I was already getting so sick. It's such a disappointment and such a mess. I take this much better paying job to help us move forward and it kicks back in my face and throws my health out the window for good measure. Did I make the wrong move taking this job and getting the payback for it now? Was I getting too greedy?

The biggest issue besides my health is our apartment. I love our apartment. It might seem silly or selfish or petty, but I just think it's such a nice place that fights us so well and still let's us be right in the center of the city. And in addition to losing my health, my job, and so much, everyone expects me to let this go too without any kind of fight and I just don't want to do that. I know Dan wouldn't mind living farther away. He wouldn't mind living in a less safe area... but I can't help it safety is a big issue to me. And until I changed jobs it was important to live nearby to work for me since I can't get around by bike etc... as well as Dan because I'm just not in the same physical shape. Then needing to drive to work was ok because it didn't take that much extra time, maybe took less to get there even though I had to go earlier, and was had a space for the car with our apartment so it fit well for all kinds of options. Maybe I'm selfish to want to stay here. Probably... some people understand and some don't. I don't even understand anymore. Every time I feel like I'm moving to the next level, you know like a regular working adult who doesn't have to scrape by like a student anymore, it seems like something comes up to hit me in the face. I don't know why. I will never understand.

So I'm left with more questioning then I think I've ever had in my life. So out of no where. So much to adjust to. Yes, I've gone through some of this before. It'd like to say that makes it easier, but actually it's the opposite. It's harder than before because I know all the different stages and I know that not only am I at a bad one, there aren't any good ones coming for awhile. I need something to save me, but I know that's not possible, at least not for awhile. I'm being as strong as I can. Dan is amazing. I can't even say how much. In the end, time will tell how this all plays out. I really have no idea what will happen from one day to the next. It's scary. It's hard to even want to think about too much. I want to let go of a lot of it and just let it happen. I'm starting to care less and less, but I'm worried that later I will wake up out of this and see what I've lost and be sorry I didn't put up more of a fight for those things I really didn't want to lose. It's hard for anyone to really understand. I know some want to try, but no one can fully and I guess I can accept that. There is nothing more to say about it for now. I'm sorry I don't have better news for my update, but hopefully I'll have more news soon and then... who knows?