Lifes Not Really Worth Much...

It's cheaper to kill me than to keep me alive. That's the fine print as far as medicare is concerned. We only pay for the fourth pint of blood but not the first three? btw...(if you need 4 pints of blood you have a major problem) Oh your on dialysis? WE DON"T cover end stage renal failure, unless you were covered with us before you needed it. What's that? You had a kidney transplant before being covered by medicare and now your on immunosuppressants for the rest of your miserable life, yeah well we didn't replace your kidney so we not covering the those meds. Yeah we only cover up to 4 grand in yearly prescription costs, after that your on your own. Oh your meds cost about that in one month? Sorry...if you want you can BUY medigap coverage, but it won't cover your meds, there too specialized. oh and I forgot, we don't cover doc appointments. All this and it will cost you almost all if not more than your monthly income we give you. I KNOW YOU WERE PERFECTLY HAPPY ON YOUR MEDICAID, AND THEY COVERED EVERYTHING WITH OUT A HASSEL GIVING YOU THE ABILITY TO SURVIVE. But, your entitled to this crap and you have no choice but to take it. Great! After you kill me where exactly do I send the bill?
It's a sad day for human kind when you can only live if you can afford it. You could live an almost normal productive life, look at all the progress modern medicine has made, but your shit out of luck if you can't work cause of your disease. Life is tough enough, for people who are ill, do we really need to make it just that much harder? Oh sorry I forgot, it's cheaper to kill me, than save me. Aparently my life isn't in the budget.
WTF!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Jan. 12th

To all those who know what I've been going through with my illness, I have to announce that for the first time in 2 1/2 years since I was diagnosed I am able to get myself up from a seated position on the floor to a standing position! For me this is very exciting. The fear of falling and not being able to get up has been very real not to mention very limiting for me. To not be able to sit on the floor and play with my nephews, or the cat, or exercise, watch fireworks, go to the park and sit on the grass with a picknick, sit on the ground by the river or at a lake, to garden, and so forth has been a part of my life that I miss greatly. So for the first time at 12:45 today July 12,2007 I sat on the floor and tried to get up. My only assistance being my body. I am so happy it is hard to contain myself. It's amazing to me how something so simple can affect your life.

Walking Around with a Hole in My Soul

I'm thinking about my life today as I sit here on a hospital bed. So much has changed and yet in a sense everything remains the same. I'm missing desire in my life. I shouldn't have this problem having been through what I've been through. You think I would be full of life and have a renewed sense of wonder and hope, but I seem to be missing this? It's as if life has just continued and I'm wearing shoes that are just more worn out than before. Walking around with a hole in my sole and the knowledge to change, but not the desire to? I don't understand. It's like I'm stuck. Or maybe I'm scared that If I try to reclaim my life, disaster will strike me down once again. Last year I got to the point of wanting to do something with my life, I could finally conceive an idea of a future, than I relapsed and got another rare disease. A part of me thinks that if I can remain still and go unnoticed than nothing else bad can happen to me. Like a forgotten about shoe that's sits in the back of the closet and goes unseen for years, preserved in a thick layer of dust……… A mummy from a life already spent. I don't like this aspect of my self but it is the truth. It's as if I'm afraid to make a commitment to myself and to life. …..I can't read the fine print so I don't want to sign up. Sometimes I dare to dream about things I want or would like to do. It's hard because I feel like it will be ripped away from me. But at the same time what is the point of all of this if I don't move forward? By not moving forward aren't I achieving what I don't want? I guess I don't know how to blend my life together with who I have now become. I feel like I should be able to get to the point that I can live my life like I did before. Independent and unencumbered by complications unless they were by my choosing. I don't know how to take this broken body and turn it into life. I feel like I've been dumped in the middle of the desert with no directions.