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Finding my way back
I am slowly regaining some pieces that look more normal. I actually ate too much tonight not thinking how my body wasn’t used to a larger snack. I am having breathing stuff tho. My daughter had Covid in the early months and she got tons of steroids . I am just trying to see a way to another solumedrol shot. This persistent fight for small pieces of healthcare has me so worn down. Now to add to my COVID my apartment building is doing work on the wall outside my unit. This was day 2. The fella above me seemed to need to compete with the noise. He has PTSD pretty bad. There was no warning and given it’s just supposed to repair siding loss from the big Derecho storm I don’t get why it’s not done. I am exhausted and stressed from the 2 days. The new land lord person is a. Huge problem. She could care less whereas the last person was really good. She was half social worker. I admit I am afraid to go back to ER after this last visit. Our Governor has allowed our state to drown in covid. My pulmonary nurse actually got angry at me for calling about new symptoms in chest. I was stunned and hurt. She kept saying they have been trying to call you and you are not answering. I said who is calling? I have not been getting calls. People are so worn. But I need care too. I am hoping my daughter sees I need to go back to Mayo. As a new wrinkle I have some problem an inflammation that is causing a problem in my right breast and side.. Sculptor44
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Very pleased to see your post.
I thought you must have been in the hospital with Covid. |
My days have been even shorter than before so I regret I was unable to check in sooner. I have missed being here. I honestly feel my Constant work to keep my Vitamin D levels above 42 or what some call farmer levels is why I have done this well. There is science on this that started last year when they started to see people fair better that ended up in hospital that had higher Vitamin D levels. My endocrinologist wrote me a letter saying I need to be above 42 which requires me to do tanning beds so I can get some coverage as a medical expense. If I take vitamin D by mouth it does nearly nothing or makes my levels worse. A doctor ran a test with me doing the 50K pills once a week. After 2 months of this my vitamin D levels had gone down into the 20s. Anyway I was diagnosed with this D issue in 2006. It was a life changer so I am pretty fanatical about keeping my levels up. I think there is very old research on a bad illness in UK that seems to point to some relation to vitamin D issues. I do deep dives when things affect me. I am continuing to slowly improve. Just have a less clear path with my chest. I am grateful for what has improved. Like getting my taste back. Sculptor 44
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I am having a harder time emotionally handling my breathing status. About a month ago I did a 6 minute walk test for the pulmonologist I have seen these past months in my town. Having pulmonologists who don’t know that I would perform better with Mestinon in me is a constant puzzle and roadblock to any treatment. Honestly common sense would say Mestinon changes the out come. I also have better stats because of getting some solumedrol on and off since August 2020. That month I was down to barely getting 2 hours of sleep at nite. And daytime was a struggle too.. So I tried the ER locally. I had given up on University of Iowa ER. I decided I had to somewhat accept I May die because ERs know other breathing issues but not MG. So I stated to staff locally I need a steroid shot so I can sleep and walk more safely. Perhaps too busy to debate this I got the shot and was released. My sleep soon was up to 4 hours. And my legs better. So based on the 6 minute walk which if you see me every each step is obviously very hard that office in last phone call about contracting Covid was actually so why are you calling us? Wow. I did have good experiences with pulmonologists but it has been years. Sculptor 44
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