Hi everyone!

I've been reading the forums for a few months now and I finally worked up the courage to introduce myself. I'm 27, female, live in a city on the East Coast (but my heart is in my home state of California!), am married, and love running around outside and generally being active. I was diagnosed with WG in May and it's definitely turned my life upside-down. I'm still trying to figure out what having WG means for me and how I can manage this disease long term.

My WG story, in brief:

After experiencing 4 month of a mysterious never-ending sinus infection, I started developing WG symptoms: loss of hearing, some loss of eyesight, gingivitis, ruptured eardrums, coughing up blood, joint pain, and of course, terrible sinus congestion. After seeing several doctors (and thinking that I was on the brink of death), I was admitted to a hospital, where I was given the diagnosis of WG on May 20. I have sinus, lung and kidney involvement. They gave me the first Rituximab infusion in the hospital and I've been home recovering ever since. I finally return to work this week and (fingers crossed) back to my normal life.

Medications: 4 infusions of Rituximab, 20mg Prednisone (tapering from 60mg), Bactrim, Methotrexate, Folic Acid, and I'm going to get an infusion of Reclast soon. My body has responded really well to the treatment so far and my team of doctors seem optimistic. I just started the MTX last week and have only had mild side effects. I'm hoping that the MTX takes away the lingering sinus issues and joint pain.

The prednisone has caused some awful side effects, most notably I've gained 22 lbs in the last 2.5 months and my face and neck are HUGE. It's mortifying--I never thought of myself as vain, but I hate looking in the mirror now. I really can't wait to get my face and body back. I also have stretch marks everywhere :-( I have trouble looking at photos of myself from a few months ago because I look so different now. And I feel like a walrus.

I'm also terrified of developing saddle nose--my ENT said that it could develop over several years. My sinus involvement was pretty significant and my nose still aches every day. I've been really gentle with it, hoping to keep it around for as long as possible!

I'm still working through the psychological parts of what WG means for my life. Up until this point, I've been fortunate enough to have very good health--really have never had any issues before this. I definitely took my good health for granted! And now I have so many questions about the future and what managing this disease will mean. I'm so grateful that my WG was found relatively early on, and I'm grateful for the wonderful support I've gotten from my family, friends, doctor, and job. Nevertheless, some days I just get really sad.

A lot of well-meaning friends and family have offered ideas about how to "cure" me--through lifestyle and diet. It's been hard (and sad) to explain to them that this isn't something I can cure--instead I have to manage it. It's also hard to make people understand just how serious a relatively unknown, rare autoimmune disorder is. I'm trying my best to help my body heal: Over the last few months, I've been aquajogging, walking, doing yoga and meditating every day, and in the last month have really cleaned up my diet. If anyone has any other ideas about how to help your WG, I'm all ears!

Finally, thank you to the members of this forum for posting. Your posts have been a great resource for me as I'm learning about WG and am coming to terms with my treatment and progress. I really appreciate all of the information that's on here!