Hi all, I haven't posted in a little while.....my rheumy FINALLY says I definitely have lupus! I had a positive ANA titer of 1:160. I'm not happy about
having lupus but am glad to have a definite diagnosis after the back-and-forth yes-you-have-it/no-you-don't dance that he and I have been doing for the past several months.
I'm still on prednisone and Imuran, but my rheumy lowered my pred to 10 mg and raised the Imuran to 150 mg per day. My Lyme doctor is happy about
that, because Lymies are not supposed to be on steroids! But I don't know if I will be able to ever get completely off the pred. Still, less prednisone is always good!
I've moved to the central coast of California....it's much cooler and cloudier here and my lupus and Lyme symptoms seem to flare in the heat and bright sunlight of southern CA so I'm hopeful that this move will help prevent flares. We are losing our house back in SoCal because my insurance won't pay for one of my Lyme meds (IV Rocephin) so we had to make the decision: mortgage payment or medicine. When our mortgage company suddenly informed us that our payment would go up by $650 per month starting in July, it was a no brainer! Our rental house at the beach saves us more than $1600 per month, which helps some towards the $2200 monthly price tag of the IV Rocephin + visiting nurse + IV supplies.
I'm still working part-time over the Internet, but don't know how much longer I will be able to do so. I just feel so overwhelmed sometimes; just doing what I need to do right now for my illnesses...getting to doctor's appts, figuring out what to do with/when to take all my meds and herbal supplements and probiotics, fighting with Blue Cross....all of that feels like a full-time job anyway. I don't have time to work because I'm too busy being sick!
Anyway, I hope that everyone is having a flare-free day today! Thanks Amy, I'm glad you asked how everyone is doing.