Yep, I surely have tried most everything. I wish I could afford to have someone clean and I do believe that dust mites are one of the problems, thus why I have to sleep on the cot and make the homemade laundry soap. Your suggestions are great
Unfortunately, my body is just difficult.
My doctor has been consulting with a team for my care, a neuro muscular doc, a sleep doc, now the oncologist and then it sounds like pretty regular with Dr. Castells pretty much right from the get go because I showed up on her doorstep in pretty rough shape
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The chemo is a last resort and I think we have to figure out if it will help, depending on what the mutations look like, etc. I was diagnosed with rheumatoid arthritis and put on Plaquenil last March of 2013 and since that drug has a very long half-life I suspect now that 6 weeks of a medicine I was allergic to being in my system could have been what really amped up this disease and I went from miserable to barely alive. That was an incorrect Dx btw...it was just this disease apparently.
I didn't think about the fact that I could be terrifying people new to this, but my understanding of this disease is that, yes, it stinks, but with proper treatment and understanding and avoiding your triggers you can have fairly decent quality of life. I think mine went too many years without a diagnosis and then had a pretty big catalyst to propel it to the next stage because I had gotten to where I was passing out all the time and by July and August it was indescribable the misery I was in. So, compared to last summer, I am doing better, but I cannot get reaction free. Who knows, I may not be a candidate for the chemo, either.
So sorry if I scared people, totally hadn't thought about that. As near as I can tell, I decided to get a rare disease and then just be different about it on top of it
Why not, right???
However, I have been lurking and reading but not as a member and as near as I can tell, I have all of everybody's symptoms and then some and I would just like to ask questions and try to figure out what others' day-to-day lives and reactions are like and also, what your quality of life looks like now that it's under control.
Also, do any other people with mast cell also have angioedema? I would love to hear if there are. For that we tried Stanazolol to which, wait for it....I am allergic...even compounded.