hello everyone. thank you for letting me introduce myself and participating in this community. i have already learned a few ythings since arriving here and its greatly appreciated.
i'm Dina. D.B. is just acronymn ( lol like we need anymore of those) for nickname given to me by awesome friend who i met around the same time as i started presenting symptoms (2005). i was diagnosed w GPA a few weeks ago at mass general hospital boston. currently o60 mg prednisone aiting for insurance to approve rtx infusions. this disease is so exhausting and challenging. new really i feel like its full time job res earching and educating myself. so grateful to find SO much vvaluable info here.
in october i decided to consult w facial plastic surgeon to reconstruct my nose. its very messed up and besides being upsetting to look at i am getting nervous its just going to collapse. surgeon says ok if i get rheumy clearance, which i didnt think would b an issue. but no! new rheumy sats i do have Wegs even though old rheumy said i didnt in 2010. so more waiting. TG i am patient by nature. well i am when not hopped up on prednisone and manic moody pod person lolc
latest labs have pANCA around 1,600 (mpo). reading that wegs more % for cANCA w pr3. also now finding blood in urine. we are "keeping an eye on it"
having dealt w health issues for such a while without knowing whats wrong w me has changed me in some ways, but i still am outgoing and love to laugh. total foodie and hate when i go for long periods of time not being able to taste food. ben really trying to step it up in the nutritional area w lots of new recipes.
just a couple more things to know about me...major NE/boston sports fan. ya WS champs Brady & Bruins! and i LOVE my pampered cat. hes been there for me when i was feeling my worst and would just lay next to me and make things a litle better. i