The online portal to access my tests and health records has changed in format. I was surprised when I signed on. Then I went to the list of health problems. There was one new one and several were missing. And the dates are screwy. Now my chart says “butterfly rash”. Who put that there? The docs most concerned about my lupus are not part of the health care that’s online. The listing for MG exacerbation…..MG crisis, is gone. There is just the regular listing for myasthenia gravis from the first time I saw my internist in 2012. And the listing for MCTD is missing. Is someone sanitizing my records in preparation for the meeting with the administrative law judge? Hmmmmmmm…quack, quack…

I am sooooooooo tired of insurance and healthcare shenanigans in Utah! It never ends.

Now that my voice is back to being broken, I wrote a letter to the doc who was studying my voice and wants to teach me how to talk. I reiterated that my voice gets better with antibiotics when I have an infection and from steroids and IVIg to combat my muscle weakness. No amount of trying to “teach” me how to talk is going to make a difference. The last voice appointment pushed me over the edge and caused me to have prolonged difficulty breathing and profound weakness. I thanked him for caring and for what he taught me about voice. Geeze…..I wish more docs understood what it’s like to be weak from MG. It’s not like being weak that regular old people feel. The neuromuscular junction is being trashed thanks to an autoimmune response. It makes the muscles not work. Duh!!!!!! I have spent most of my life being made to feel guilty for this sort of thing. It’s no different than being blind. Blind people aren’t made to feel guilty for not being able to see. Grrrrrrrrrrrrrrr!

Being blind has been on my mind a lot. I think it totally sucks to be blind….no doubt about that. But ever since I met Rhett, I was fascinated by how much different blind people are treated as opposed to other handicaps. Some states even give higher disability checks for the blind. And it has better perks than some other disabilities. I never understood why people who work at the blind school and are highly capable individuals are automatically given unlimited Paratransit services. It’s frustrating to need a dog and/or a cane, but many of those folks had bodies that worked just fine. Why was their privilege automatic when it isn’t for people with other challenges? I also noticed the bias many times at church and among church members. It’s once again a matter of where a person falls on the “deserving” ladder. Blindness is mentioned by name in the Bible, myasthenia gravis is not.

You might be able to tell I have grown weary of fighting the system. Understatement of the year. Why is it so hard for the bureaucrats and society to treat all disabled people with dignity? Why are these artificial divisions created that pit one sort of disability against another? Why is it so hard to just give and get help?????

Ohhhh….that was so cool!!!! My whole forehead and face have been severely drooped today. It was making me crazy. My lids were covering part of both pupils and the weakness in my face was physically painful as it dragged down my mouth. Then I had an electrical storm and muscle spasm all around my head and POOF! I am better able to open my mouth and the weakness lightened up. I can even both turn my head and hold it up easier. But….I can also feel some creepy headache taking hold. My hand muscles are twiching and spasming. Argh! How about they all go far, far away?!?!?!?!?

The sky has looked blue the last couple of days, but dang, the smell of Siberian smoke is obnoxious! Then I went to read news stories. The Lung Association says Utah has bad air….not just bad for here, but compared to the whole country. 7th worst in the country.  

For days now I have been looking around my apartment and thinking about what I could give away and not miss. I don’t own much STUFF, but I could still pare down. I keep getting a stronger and stronger urge to move. It’s a tough decision, though. I never want to be homeless again. At least in SLC I have a fairly decent apartment, public transportation, and Food Not Bombs. The unknown is well, unknown. I don’t want to live here because of the IVIg policy, no dental, low benefits, politics, air pollution, crime and the over-all culture. But is it any better somewhere else? Where?

If someone said you have 24 hours to pack up, a moving van is coming to take you to “xyz”, I would get right on it. I stayed in Florida 3 years, the Adirondacks 3 years and now Utah 3 years. That seems to be my expiration limit. Somehow I managed to love Vermont most of the 26 years I was there. I didn’t love winter, though. Sigh…it’s my parent’s fault. They named me Wendy, which means wanderer. My very favorite way to live is wandering around. Nowadays I can only wander tethered to medical equipment, doctors and hospitals. Dang it!

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