...Is of a mixed connective tissue disease, an autoimmune disorder that is attacking my lungs like rheumatoid arthritis, but also has bits that look like lupus and other diseases. It's almost a non-diagnosis, but the good news is there are drugs to treat it without steroids. I now have to look at this as a permanent lifestyle change, and it is very uncool. I will probably never be 100% better, but we can get me to 80% for a while.
I had to develop it completely backwards, of course. Normally lung symptoms start way after joint pain and swelling, most of my heavy-duty joint pain didn't start until my lungs knocked me offline. Basically, lung-disease is something they see after treating someone for 10, 15 years for this stuff...not the thing they see FIRST. Especially in a non-smoker...a never smoker!
The bad, bad news is that I'm on a steroid break before we can start any new drugs, and it is going very poorly, I am coughing several times an hour and back on oxygen therapy. It's not cool, and it hurts, but the idea is to try to get antibody testing while my body's ability to make antibodies is not impaired.
So if I seem to not be here, that is why. Also, still putting off writing that essay. Heh.
I had to develop it completely backwards, of course. Normally lung symptoms start way after joint pain and swelling, most of my heavy-duty joint pain didn't start until my lungs knocked me offline. Basically, lung-disease is something they see after treating someone for 10, 15 years for this stuff...not the thing they see FIRST. Especially in a non-smoker...a never smoker!
The bad, bad news is that I'm on a steroid break before we can start any new drugs, and it is going very poorly, I am coughing several times an hour and back on oxygen therapy. It's not cool, and it hurts, but the idea is to try to get antibody testing while my body's ability to make antibodies is not impaired.
So if I seem to not be here, that is why. Also, still putting off writing that essay. Heh.