Thanks to Jen the RN, I looked up Meals On Wheels. At first I did not think I would be eligible. Then I watched the local video and realized some of those recipients were talking and walking better than me. It was just last year that both the GP and internist wanted me to move into assisted living….so maybe I am in tough enough shape!

Now that cooking is so difficult, most of my meals are just one thing….not a variety of foods. When I first moved here and looked at the monthly menus, all I could think was yuck! But with today’s eyes, it suddenly looks more appealing. More balanced than what I eat. I would rather get food delivered than go sit under fluorescent lights at the senior center.

I am finally eligible for breakfasts and lunches at the senior center! Breakfasts are free and lunches are $3. Well….there’s no way in heck I could afford $3 for one meal, but they do say it’s a suggested donation.

The senior center newsletter says they have a wheelchair maintenance event next week. My poor chair needs assistance.

Hmmmmm….I did not get excited about becoming 60 because I thought I was moving soon. I need to find out what perks are available. Some of the programs begin at 60 or 62, some at 65. I need to find out all the particulars. I like having a new project πŸ™‚ I see there are case managers available. I wonder if there are any good ones? These are the sort of offerings that have the possibility of making my life easier.

The first 2 emails I read this morning were a birthday card from my uncle and a letter from a fellow MG patient. Perfect timing on her part. I was starting to think maybe I could just endure here in Utah. She grew up here and had to leave because of the same neurologist who has made my myasthenia gravis life in Utah hell. He almost killed her 😦 The guy seems to exist to undiagnose women with MG and to then tell them it’s not MG….it’s conversion disorder. It doesn’t bother him in the least that I was diagnosed and treated for MG for many years prior to meeting him. It also doesn’t matter to him that both the psychiatrist and mental health counselor say I do not have conversion disorder.

This young woman was financially able to move. It has changed her life. I am glad I got her letter today. I cannot become complacent about my health care!!!!! Here are snippets of what she sent out to dozens of us.

Hard work and persistence is seeming to finally pay off. After 4 years of dealing with difficulty getting the treatments I need for my Myasthenia Gravis, I am finally getting it. I am now getting IVIg every 3 weeks and I have doctors who are listening to me and helping me. These doctors I have now are telling me my feelings are true, it’s okie to have them, and I’m not crazy unlike some doctors who believe something else, I won’t name… (Dr Smith).

I am so grateful I moved. Literally one of the best decisions I have ever made in my life. The doctors here are addressing my Myasthenia Gravis.

Because of the neglect and cruelty I dealt with, with the University of Utah’s neuro department I have piles of debt, PTSD, had to quit school, had to quit work….

I am so grateful she wrote. I must not forget! Life could be much better again with the right treatments. I must not be lulled into thinking I can stay here. They will literally kill me. It’s never far from my mind that my insurance company now has permission to let me die by withholding IVIg. I keep wondering what will happen to me if I go into crisis again. Utah sucks!

Well….that’s cheerful for my birthday πŸ™‚ But if I hope to have my next birthday, I need to keep trying to get to a better state.

 

 

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