(A few of you asked me to post my email from today. This is it,—below.)
...so when someone tells you that you have a potentially fatal lung disease, you don’t really care what it is called anymore.
I met with my pulmonology team today and I know now, for certain, that the thing to care about is not that I have Wegener’s (or Churg-Strauss ), but that I am still super responsive to steroids...which it turns out I’ll be on for at least the next six months (so again, please pardon my puffy face and boorishness). I’ll be going in for pulmonary function and kidney tests every 1-2 months for the foreseeable future. As long as those maintain and/or get better, I can continue to wean off the drugs a little bit every few months.
I meet with my gastroenterologist early tomorrow afternoon to discuss what this potentially means for my Crohn’s disease treatment, and life in general, but I think this is me signing out on the updates as we have finally (sort-of) reached a diagnosis.
Feel free to forward as always and thanks for your love, support, and all-around greatness. I’m going to listen to some Stevie Wonder now as that treatment method also yields great results for me every time :)