I had a pulmonary breath test yesterday and, yippee, I now have an oxygen diffusion rate of 57%. Up from 50% at the height of the inflammation. Such a small difference, but I feel so much better! I can breathe in what feels like a "normal" manner and I can actually do things which require physical exertion! 57%.
I can't remember what it was like to be at 100% and I guess I won't get to experience that anyway. This is about as good as it gets this time around. What a strange disease this is - no clue as to how I got it, no cure for it, no effective and safe treatment for it, and no telling when it will strike again. Or where it might migrate. Sarcoidosis is not just a lung disease - that happens to be where I contracted it. But sarcoidosis also shows up in the heart, the eyes, on the skin, lymph nodes, liver, brain, nerves, among others.
I plan to have my eyes tested because I have already developed cataracts in both eyes and my vision is dreadfully bad. I just don't know if they can replace the cataracts now though, since I do have sarcoidosis.
One of the interesting responses I have had to the space I have created around this illness is that I have withdrawn from all Internet activity regarding sarcoid. During the first weeks, I was compulsive about reading everything I could find, looking for online support groups, clinical trials, treatment programs, anything and everything. Then rather abruptly, about a month or more ago, I just stopped.
I removed my name from email lists, discussion groups, everything. I found that there are many sources of painfully and potentially dangerous misinformation on the Internet about sarcoidosis. There are also medicine hawkers lurking on the sites who flood you with emails about their miracle cures. Then there are the people posing as physicians with their own "certified" treatments costing many dollars. The only thing they have that qualifies for being certified is themselves! And scare tactics and stories abound. A lot of the "groups" feed into each others' fears about treatments and tests. They make claims about some new diet or vitamin they use that cured them, and for me, that is too small of a sample size. Or they rant about a reaction they had to a treatment drug, tarring all pharmaceuticals with this unverified brush. ENOUGH.
