I feel deflated….as if all my strength and energy leaked out. This is the first time that myathenia gravis came back with a vengeance since starting steroids. I cannot open either eyelid fully. I am weak all over, it’s difficult to breathe, my head is splitting and I just plain feel AWFUL! 😦 It’s after noon and my body shows no signs of rallying. I forgot how much my chest used to hurt when struggling to get in enough oxygen. (Insert all the bad words you know here.)
Feeling like a blob forced me to sit still for the longest time this week. I have been using that time to research Ledderhose’s and Dupuytren’s forms of fibromatosis. I now have a bit better understanding of those…and am pretty darn sure I also have the relatives of those diseases that affect my tongue, guts, lungs, etc. Sure explains a lot.
Docs first guesses are always the most common ailments, then the guesses get narrower and narrower until some smart specialist goes AHA! Sometimes docs don’t wait for the aha moment. Story of my life. They are busy, I am complicated, so all problems get lumped together under MCTD or MG or whatever…without looking further.
I have been overwhelmed today with info about fibromatosis. I don’t ever remember reading about that name before. It’s caused by excess collagen. MCTD is a collagen-vascular disease. MG adds the neurological. Almost everything wrong with me is autoimmune…which translates to inflammation. I had already been told the reason my hernia happened had to do with all that, as my collagen is not holding me together properly. With fibromatosis, collagen is being deposited in places it’s not needed.
An interesting tidbit of info is that people with fibromatosis do not do well with glucosamine and chondroitin. I have tried taking those a few times for my joints, but ended up in heaps more pain. This might be why.
The podiatrist gave me several tubes of CeraVe renewing cream to put on the bottom of my foot. I quickly realized that was a waste and put it on my cracked knuckles and palms, instead. Ahhhhhhh….. I think I will stick with O’Keefe’s foot cream on my feet. It lasts longer….and my hands hurt much worse. I wish I had a vat of the stuff. I need more O’Keefe’s working hands. Of everything I have ever tried, that helps the cracks and fissures in my hands the most.
I feel like an idiot for being so upbeat when I was feeling better. None of the bad things in my life have improved, I just felt better for a few days. That’s not the same as my life being OK. I guess it’s the equivalent of shoving all the dirt under the rug instead of sweeping it up and throwing it out. A lot has come back to smack me in the face. I do NOT want to live in Utah. I do not want to live in this cesspool of public housing, I do not want to keep hoping that I will get good medical care and I don’t want to live on so little money! Something….lots of things….need to change. Trying to make the best of things can be both a virtue and a curse. I cannot fix corruption. It feels like I can either be part of it or flee. I am tired of enduring!
Not too sure anyone understands exactly what I am talking about. I don’t want to get all specific. I have ranted enough about what goes on around here. My last straw today was a guy with extreme bass speakers who pulled up in front of my window and kept his car running for about 45 minutes. Not only were the exhaust fumes and vibrations annoying, the guy was obviously high on something. He kept contorting in his seat…stretching diagonally, mashing his face into the windshield, putting his head on the steering wheel, looking on the floor and repeating many times. Then he got out of the car, left the door open and looked at the passenger side by crouching down. Then he turned off the car and contorted around some more. Turned the car back on, sat there. Minutes later he abruptly backed up. He acted like he didn’t remember how to drive and just sat diagonally across the parking lot. Then he pulled toward the road and stayed there awhile. After a long pause, he went north on my street. I got up to see where he went.
The resident assistant walked by while I was looking to see where the crazy guy went. I asked if she knew him. He drove back in! This time he backed up to my window and another car pulled in to talk to him. Neither of these people live here. The RA went over and said something to him…then came back to me to say it was OK!?!?!? What? Soon they both drove off. Earlier I had called the manager. I saw him get as close as my window, turn around and go back in. WTF? Makes me wonder if all the illegal stuff around here is from being downtown….or if it’s by design. About half of the people evicted from here still mysteriously live here….and sell drugs here and hold stolen goods here, etc, etc… The crazy guy has been back several times tonight. He just zooms through the parking lot.
I miss being a hermit. I wish I had a wheelchair lift vehicle and could spend some time traveling about. I have had more than my fill of public housing 😦 I need to get the heck out of here. Being this poor sucks. I have never had so little ability to help myself. I have no idea what to do or where to go. I want the Star Trek crew to transport me from here to some place with good health care and a place I can afford to live. I need a communicator so they can beam me up. Maybe I can find a used one over at DI?