No time was wasted to scramble, and try to change things in their own favor. I got an early morning phone call from the neurology scheduler. The doc I was given an appointment with is suddenly not available to me. And yesterday I was told that no neuros had time to give me a SFEMG test until mid July. Golly, gee! Another miracle! I have been switched to the neurologist who is actively opposing my MG medical care…..and he can do the test next week. I believe this is called being railroaded 😦

My doctor’s office confirmed that the neuro he wanted me to see does the test. The times I talked to the scheduler before the hearing with the judge, she never said the doc did not do SFEMG and said I just had to wait for it to be worked out. Then after talking to the judge, suddenly I am not allowed to see the doc my neuro gave me a referral to, and my choices are a stranger or the doc who wants me undiagnosed. I chose the stranger. And now this morning, I had no choice and the test would happen in a week. Does this all sound fishy to you…..or what?

Then today, a bunch of us in Utah talked about our experiences at the big hospital. Way too many stories about the doc I will be seeing. He just loves to undiagnose women with MG, not just me. Lots of anger in the group because of the way he acts. Just great 😦

PeekingOutPinkRoses

So….my whole future in Utah healthcare is going to depend on one guy having integrity in his testing and opinions….when he has shown he doesn’t have any…..over and over. The deck is rigged, and not in my favor. I really need an advocate to go with me for the test! Someone I can trust, someone to be a witness.

After the test….the trial. The judge could go either way, depending on how much weight she gives to my past medical records, my response to IVIg, my February hospitalization, the testimony of my witnesses, tests, etc, etc.

I went to FNB today. I was at the end again. Not much for 3 trips through the line.

I went to Trader Joe’s after FNB. I was hungry for something already made. I knew I didn’t have the energy to do much. I looked at every possible sort of food. I talked myself out of them because it’s so much cheaper to cook from scratch. Finally I decided on Punjab eggplant at $1.99. I came home, made some Jasmine rice and steamed the foil pouch above the rice as it cooked. It felt so decadent to eat pre-made food that I bought on purpose!

I spent some time this afternoon out in the common areas. Got plenty of ribbing for my droopy eyes. Then they got better 🙂 I will either feel better or worse without Mestinon for a week. Should be interesting!

 

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