I hate the way I am feeling right now....I mean besides the obvious fatigue, gritty dry eyes in the morning, a mouth so dry that it is hard to swallow a biscuit, foggy brain syndrome, muscle tenderness, and the nausea that comes and goes. I feel bitter and angry about my Sjogrens. I want to know why it is also attacking my kidneys. I often ask the classic question... WHY ME?
I often feel guilty that I seem to be bathing in self-pity. Even though I have been diagnosed with SS for almost 4 years and misdiagnosed with Lupus...I think it is starting to sink in that I don't feel good. I work with cancer patients a good bit with my job and I see what they go through. The looks on their faces when they just had chemo can be heartbreaking. Some of them have the best attitudes and they are at peace with their illness. I want that. I want to be the one that everyone says that I have a great attitude towards my stage 4 kidney disease. I want to feel like I can beat this! I don't want to go into dialysis. Everyone constantly reminds me that dialysis isn't a death sentence. Why do I feel like it is? I am only 36 and I have 2 small toddlers that I want to be active with. I don't want them to think their mommy doesn't feel good!
I start Procrit injections tomorrow. I don't know if it will once a week or bi-weekly. My husband is going with me. He'll have to give me the shots. I can't do it! (I couldn't even prick my own finger to check my sugar when I had gestational diabetes). Thank goodness my doctors have got my insurance to pay for the injections. I have a high co-pay of $100.00 for eight injections. My insurance originally said it wasn't covered. I heard that each injection can cost $1400.00-$2000.00 a piece!!!