And you should be disgusted, too, if you are a taxpayer. Most of what is billed is CRAZY! That sham of a SFEMG test cost $972.37. The guy did it incorrectly on purpose, but still got paid all that money for 10 minutes or less of work. All the rooms were filled. He went right down the line, giving EMG tests to one person after another. It was interesting to listen to how he treated people differently. For it to be a valid test on me, it needed to be longer, to test my weak muscles and to test around my eyes. Any neuro knows that. He cynically did the test to get the results he desired. And he gets paid no matter how well he performs the test.

I asked if he was only testing me for MG or was seeing if I had other neurological problems. He said only MG. My good neuro sent me to that hospital to see a certain specialist and to get other things ruled out, not to do a bogus test by the doc we all know has been trying to UNdiagnose me since I first went to his hospital 3 years ago. Then, the unethical neuro had the gall to tell me I probably had occular MG that had gotten better…..yet he did not nerve test my droopy eyes! So much corruption!

I looked up my entering diagnosis and what he determined my diagnosis was. My neuro wanted me evaluated for “weakness” and the guy who tested me gave me the diagnosis of “tiredness”. What a bunch of bull!

I have always been the canary in the coal mine. Whatever happens to me, happens to others at a later time. It particularly irks me that I am pointed at as THE PROBLEM because I am sick and disabled, and therefore am breezing through taxpayer dollars. Pffffft! It’s not me, it’s the healthcare establishment milking the government for every penny possible. It’s a racket.

In my case, the hospital and insurance company are the same entity. Insurance keeps changing the reasons they won’t pay for IVIg. At first they assured me it would be covered as long as I had a prescription. I got the prescription and they said it wasn’t FDA approved for MG. Then I got IVIg on an emergency basis, so now they say I don’t have MG, I have conversion disorder. I shudder to think of what they will try next!

I am feeling mad today because I am getting worse again. Yesterday my eyes got droopy and today I cannot fully open my eyes again. I am feeling lots of weakness in the proximal muscles of my arms and legs. It hurts to swallow because I have to try so hard and my breathing is labored. For the first time in days, I woke up choking ๐Ÿ˜ฆ I seem to hurt EVERYWHERE. I think the reason I am getting worse is the mystery infection. I am back to having all night long night sweats.

The myoclonic jerks feel more electrifying that ever. Also I will be absorbed in whatever I am doing, then start screaming. I am having random cramps and pains that bring me to tears. The hand arthritis is back. Sometimes my fingers refuse to bend. I really, really hate when all the sickness, weakness and pain comes back ๐Ÿ˜ฆ

Besides the BS on my medical chart, what got me miffed was the latest politically correct idiocy that keeps showing up online. Now people who are “transabled” want the right to have perfectly good body parts amputated so they can be disabled. When decent care is denied for people who really are disabled, there’s no excuse for that crap.

And there are no advantages to being disabled! There’s a myth that people feel sorry for you or maybe treat you better. Ha! Sure there are a few nice people out there, but not many. When people hear my broken voice or see my eyes almost closed, they generally get a look of abject terror on their faces. Most people are afraid of disability. And I sure as heck very rarely get treated with more kindness or consideration. If people are walking down a sidewalk together, most will just keep walking straight towards me rather than switch to single file so we can share the sidewalk.

When I cross the street, it’s ALWAYS scary. Whenever I go out, I doubt there has ever been a day when someone didn’t almost hit me. When I get on TRAX, there is only one spot per car for a wheelchair. It’s a favorite space for cyclists to prop their bikes or for people who like to stand instead of sit. It clearly says it’s for people with disabilities. I could go on and on about the rudeness of people who reach around me on the platform to push the door open button before I can hit the one for the wheelchair ramp. Or if I am getting off TRAX, they repeatedly push the door opening button while the ramp button is trying to do its thing. The last time I got on TRAX, a woman strolled by the open space in front of the ramp as I was going up it. I had to take my hand off the power, which made me feel like I was going to flip over on the incline. Then she refused to move so I could get off the ramp and onto the train.ย The daily indignities of being in a wheelchair are many. Many, many, many…..

Wild

The two most common looks I get are disgust or the deer-in-the-headlights fright that they might be forced to interact with a disabled person. I could write a whole book about how often my safety is put in jeopardy or I am treated like a third class citizen. I try to smile my way through it all, but sometimes what I really want to do is smack them ๐Ÿ˜ฆ

Besides the crappiness of being sick and unable to function like most people, I am forced to live on almost no money. No one in their right mind would give up self-determination or the ability to work for decent money, to be handed $733/month to subsist on. Now that my rent is $525 of that, the pain is deeper. I don’t even want to hear about people who willingly mutilate their limbs or blind themselves in order to think they will feel better! I can’t stop thinking about people who identify as transabled ๐Ÿ˜ฆ

I talked to the manager about all the excitement outside my window last night. Sam has been talking about it all day today. People here are real tired of the crazy guy yelling at them. This is the first night that the druggies haven’t hung out in the parking lot ๐Ÿ™‚ I am glad they got a scare thanks to the cops being called on the crazy guy. I hope I got all the ranting out of me!

This evening there were all sorts of weather service warnings for high winds, flash flooding and severe thunderstorms. We had some scary moments! I could hear what sounded like trees cracking and falling over….then the power went out. That was it for my router. Ever since, I can smell something strange in the air. I guess I will have to wait for the Thursday morning news to find out what happened.

I made a video tonight. It’s boring. I am dorky. I just wanted to keep track of how I am doing.

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