I was in bed 3 1/2 hours last night. I got zero hours of uninterrupted sleep. I coughed, choked and drooled while holding my belly. I gave up pretending to sleep and sat in my chair. That meant a bit of a reprieve from coughing.

In the late morning, Olive was still getting her beauty sleep on the bed. The bed bug inspector showed up. Olive hissed at him. No bed bugs here!

Then I got an email from my doc’s nurse. He found a different home health agency that said they would do the IV antibiotics. A very nice guy nurse came and spent more than an hour talking and filling out paperwork. He was fascinated with my MG….and was wowed by the pics Heather took of my totally open belly wound back in June 2013. He measured what’s left of the hole in my belly now. He like seeing all my medical weirdnesses and talking about each one. I think he was impressed that I am still alive!

BellyHole

He noticed each time my eyes drooped more, my voice changed, I got dizzy and all that stuff. He said it was very obvious that I have MG. Then right on cue, there was a knock on the door. It was the mailman with a registered package. I quickly looked through a few pages until I found “denial of IVIg upheld”. There are dozens of pages. I put them in the magazine rack for a boring day. One of the things the ruling said (paraphrased) is that by Utah statute, they are allowed to ration health care and IVIg is too expensive. Isn’t it the Republicans who always say a one payer system or the ACA or anything sensible will cause rationing? Pretty funny, NOT…that they don’t mind doing it to me. But everyone knows a poor, disabled senior is the bottom of the barrel and a real POS that just sucks up tax dollars without giving anything back. Republicans put a price on everything. My life is not worth much to them. They call themselves Christians, while acting nothing like Christ. That and a whole lot more came to mind. I will spare you the rest.

The nurse looked like he was in shock. He had just said I need IVIg. So…back to work on the IV antibiotics. In the not-so-funny comedy show that is my typical health care, nobody knows how or where to get the meds and supplies. Don’t these people do stuff like this every day??? The nurse said he was an office guy and he would push all the right buttons to make sure I got the IV antibiotic treatment. I never heard from anybody the rest of the day. Are you seeing a pattern here?

I had a pleasant 6 hour chat online with a woman who is getting diagnosed with MG. She’s 55 and LDS. It was fun to have someone to talk to and take my mind off of the volumes of evil paperwork that I was ignoring. Also, my hyper neighbor stood outside my window and talked. The woman from last night’s altercation came running to make sure it wasn’t a creeptoid at my window 🙂

I wonder what tomorrow will be like?

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