Hooray! I am finally off the pain killing regime that made it nearly impossible to type. I did type a few sentences very painfully but it was difficult to do, made constant errors. I am still feeling the drugs but it is going away and I make typos only every third word than every word. I did a fair amount of research on autoimmune diseases when I first became sick last month. Then I decided to watch some Mystery Diagnosis episodes.
This show is very useful for teaching doctors! Nearly all the missed or screwed up problems treating patients with strange symptoms was due to these being caused by autoimmune diseases! So after seeing a couple of these episodes, I saw the one at the top of this story. It was me in a nutshell. The early scenes where the lady couldn’t go up the stairs except by clinging to the bannister…was me. I was stunned. The sudden appearance of red rashes in the legs…again, this was me. The stomach problems, problems sleeping, the rising intense horrible pain that is a stabbing pain, not aches, was me, too. I wanted to hug the lady in the show, we are sisters indeed!
I argued with every single doctor I interacted with this month. I fought ferociously. One doctors sneered, ‘Autoimmune diseases are RARE’ as if this meant I couldn’t be the rare critter with the disease. I chewed him out telling him, ‘So, what is YOUR diagnosis?’ He had none! But showed zero interest in figuring out it was because he dismissed the only possible diagnosis. Another doctors claimed I was insane. ‘I love working. I hate being in bed. Why would I want to secretly lie in bed screaming? This gets me zero sympathy,’
He said I wanted him to be sympathetic. ‘Are you?’ I asked with great skepticism since he was not showing the slightest kindness to me. I glared at him from my bed daring him to say ‘Yes’ when he was obviously attacking my intellectual integrity and my ability to do research myself. One doctor suggested my research done this last month while my condition deteriorated, was making my symptoms appear. By then I had an answer and I felt like I was a lawyer shredding the opposition in court: ‘Ok, you tell me what is causing my autoimmune symptoms!’
Finally after five days, a woman doctor saw me, I gave her all the information and…she agreed with me and has arranged for me to go see a specialist that does only autoimmune patients. I will seem her (she is a woman) this week and can’t wait. I am sorry my blog has festered all this time but I couldn’t write and reading was hard since the drugs gave me double vision. Some doctors said I would become a drug addict if I asked for pain killers.
The pain was hideous! My entire body was burning with stabbing pain! I had to be on morphine! I hate pain killers and told them this but they withheld drugs too often because of fears I would become addicted to drugs I do not like to use ever. Only when I had doctors that listened to me and trusted me, did things go well. The bad doctors refused to believe me as if I didn’t want to fix all this which is infuriating. Normally, I use my regular doctor to do all this talking but he was on vacation from mid-June to mid-July! I am going to scold him when I see him next week (joking!).
Vasculitis Symptoms, Causes, Treatment – What are the symptoms of vasculitis? – MedicineNet lists the symptoms of my disease and I had every one of them and any damn doctor could go online and see the perfect fit. I lost 30 pounds in less than a month, for example, became so weak I couldn’t open pill bottles. I had severe muscle pain, too. At one point, I had to be on a heart machine because they thought I was having heart attacks and it certainly felt as if this was happening. And I had the sudden, unexplained rashes that appeared instantly in a virtual flash. Telling doctors to go to the website with this information was like pulling teeth, only one (a woman) did this. Sheesh!
cyclophosphamide is used to stop this horrible condition from killing the patient and no one gave it to me because they wanted to find the correct doctor to give it and I couldn’t get it for myself and the waiting list was three weeks long when my life was in danger. I got moved up by two weeks, thankfully, after explaining that I was being hammered by this and it was killing me rapidly.
Well, yesterday I had a huge sweating episode and…the attack on my body pretty much ended. I was stunned. It was like trench warfare during WWI. Suddenly, the guns went silent last night. I finally got to sleep easily. My digestion is still totally screwed up but I no longer vomit when I look at food and I can drink again without sending it across the room (don’t try this at home). My entire body was bright red all this month and now looks more or less normal.
My main food for a month has been jello. Tons of jello. It was a joke in our ward at the hospital when the nurse went around asking patients if they wanted to eat their jello and if they didn’t want it, they gave it all to me. I could also eat crackers sometimes. One day, I ate three graham crackers and thought this was a big step forwards. I am so happy to be returning to normal again…I hope. This has been a horrible, scary ordeal. Most of the time when I went to the hospitals it was after 2am. This is because it always become much worse at night.
The insurance I have is extensive and sometimes useless. Since there was no ordinary diagnosis slot for the insurance agents to click on, they said I get no health care! I told one doctor after being kicked to the curb by another hospital, that he was to give me the phone and I would explain that anyone who cannot eat or drink or sleep at all will die in three days so they had to take me in even if they had no idea what caused this…when the head of the hospital services came into the emergency room and said, ‘This is ridiculous. I have an idea.’ And she (note the sex here) then called the agent in charge of my case and told him I was going to come and go every day for one minute and thus not be a full time patient. This worked! It was hilarious, we joked each time I ‘left’ and came ‘back’ again (not moving an inch).
The US healthcare system should have been reformed years ago instead we got ‘Obamacare’ which was what GOP leaders wanted in the first place because it works poorly. I hate fighting hospitals all the time but one has to be lawyer to get sick these days. This is why all my family from top to bottom relies on me to watch over their affairs when they go into hospitals. And I have to be very severe about all this, I force hospitals to do my will including reporting them to regulatory agencies, meeting with the board of directors, bringing in lawyers, too. I file reports and call the cops, too. I have removed people from hospitals because they are poor health caregivers. I have forced hospitals to change protocols and systems and alter their way of dealing with patients.
But it is hellishly hard to do this while I am lying on a gurney screaming in pain, drugged to the gills. That was pure torture, not being able to impose my will on the hospitals. I hated it. A lot.
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Petersburgh, NY 12138
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