On Thursday I made the trip up to my Rheumatologist in Boston. The visit didn't quite go as I expected. I was confident that we were gonna forge ahead with my treatment and take this RA head on with the strongest of meds. I was way wrong.
The only backup I have to my diagnosis of RA is an ANA tilter of 1:160 and joint inflammation with pain. Based on that I have been treated for 4 years for RA. Four years of toxic medications like chemo (MTX) and biologics (Humira, Enbrel, Orencia).
My Rheumatologist throws me a curveball. I may not have RA. I haven't been responding to any treatments. Even a little bit. She has never seen my inflammation in person other than a picture I showed her. My case stumps her. She has never seen anything like this. I can't go to the next step in treatment, which is Rituxin, because without her confidence in my diagnosis, she can't expose me to that drug.
I'm sitting in her office and I can feel the blood rushing to my face. I'm trying my best not to burst into tears. I remember this feeling. It's the feeling I had at all the doctors visits before I starting going to Harvard Med. I'm suddenly lost again. My head is spinning.
What does this mean? I have RA! I have to! I am the Arthritis Foundations Walk Ambassador. I've been running an RA support group on Facebook for almost a year. I speak at functions for the Arthritis Foundation. Countless hours to spread awareness and what was it for? I have all the symptoms! I don't understand.
RA has not defined me. I just have a real problem with what I've been through these past years. All the surgeries, some because of the RA meds. I processed the disease mentally. I grieved my old life and I rebuilt a new one.
I'm at a crossroads and I hope I make the correct choice.