The new formulation of the main medicine seems to be considerably more gentle on my digestive system than the original, although it did wipe me out for one day. I suspect when I up the dosage it will lead to another wiped day, but I'm ready for it now.
Yesterday wasn't too bad. I was up in my computer chair for a good period of time, which was nice enough. I am still having issues getting anything done. My mind is still very scattered from the prednisone, which is horrible stuff but keeping me alive, so what can I do?
I have found that rage is perhaps the worst thing that I can do. I get so angry about the state of my health and my insurance and my fears of how we're going to pay for this nightmare, and then I run out of energy and feel defeated. When I imagine some wonderful savior coming and paying off my bills and the bills of other people like me who are suffering - and suddenly I can start to sleep and rest again. It's dramatic: if I imagine punishing the people who are profiting off my pain I get sicker, but if I imagine people being helped (not just me, but everyone in my situation) I feel better.
Today I noticed my feet weren't too swollen when I woke, so I decided to try to get the compression stockings on again. It worked. Since I have a blood draw today, I plan on leaving them on until I get home from that. It feels like a small victory again. But that's all I have right now, the small victories.
Back to money, I decided to start a GoFundMe for the hospital stay. I suspect the amounts will go up as treatment continues on my kidneys, but we just cannot swing the amount in the gap between what the insurance paid and the hospital charged for my 11-day stay. The health situation in this country is barbaric, and we have parasite billionaires trying to become the next tyrant king while people are dying from preventable illnesses because they know if they go to the hospital they will bankrupt their families. Right... I can't dwell on that. It will make me sicker.
I keep thinking about my friend Justin Manning, and how he faced the end of his life with dignity and grace. I didn't understand how he could be so happy. I've had a glimpse now of his view, and I begin to understand. I'm not there yet, but I see that shining glimmer and I wish I'd known him longer. I treasure the short time we spent together even more now.
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