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I woke up at 2, sat around drinking water and tried to go back to sleep. No such luck. So, at 3, I came outside to sit on a bench. 68° feels cold! It made it up to 93° Monday. Desert air just does not feel like Vermont.

Sometimes I really do want to escape from this body. The peripheral neuropathy is with me 24/7. There is no part of me that doesn’t suffer from numbness, tingling, hot and cold. Even when it’s 90°, my hands are like ice.

I ran out of space to store edema in my legs and abdomen. I am packing it on my arms, again. My entire body hurts from the tightness and water weight gain. It’s uncomfortable to be alive. There is no position that alleviates the pain.

I am also back to having searing pains flash up and down my spine. They are sudden and almost make me pass out. It feels like something very sharp and very hot. After it attacks my spine, it goes after my hips.

No wonder I can’t stop crying. Those are just a few of the background pains to the queasiness, trouble breathing, swollen joints and awful weakness. I hate being in this much pain!!!! It hurts to think and it sure as heck hurts to merely exist.

I am too cold to type…back in the building I go.

When I was in bed, I was thinking about all of the many doctor appointments I have been to. I might see doctors who diagnose things, but basically they do nothing. I had high hopes about the dermatologist making my lipodermatosclerosis leg feel better. There were all these therapies, yet nothing has been done. The norm is to take money for consultations, then never follow through. Most doctors in this particular system must get paid better to do tests than to heal. I could rant for hours about each specialty and how they have dropped the ball. The healthcare system I am in exists to continue growing and raking in money…not to serve patients like me on my sort of insurance.

Monday I thought I saw a paper under my windshield wipers. I hobbled out to retrieve it. A new healthcare facility just opened a block from my apartment! I got on the internet and read everything I could find about them. Then I called to ask questions. They take my insurance! A minute or so after I hung up, the guy called me back. He wanted me to know that if I am a patient there, my prescriptions will be filled at their pharmacy with no co-pay. Cool beans!

This place is owned and run by an Indian tribe. They are hoping to use the profits from this to plow back into better healthcare for their tribe. I feel MUCH better having profits from me going to that cause. I am beyond disgusted with the university system here that is all about opulence.

No word on my power chair. I feel very stuck without it…too weak to drive the RV and too weak to get to bus stops. Sigh….

This week I should be getting the biopsy results and I SHOULD hear more about the power chair.

I can’t get Leslie off of my mind. He is the 61 year old guy that just died here. I have no idea what happened. He always looked perky. It shocks me when people who seem in way better shape than me are dead…and I am still here.

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