Sunday, September 9, 2012


We all have them at some point in our lives. When we are forced to choose the best option, the lesser of two evils. A moment when we wish we could fast forward into the future to help us make our decision. I have found myself lost without a map. Unsure of my path and what's to come.

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.

What do I do? Do I go off all my meds and hope that they are working and I suddenly flare from not taking them? This is the 4th Rheumatologist I've seen. Do I go get a fifth, sixth, seventh opinion?

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.



  1. OMG!!!! Do they have any idea what they think it might be? Have you made any decisions on coming off the treatments? I'm so sorry that you going through this!!!

  2. Stay strong Bri. I imagine it IS RA, sero-neg is so fickle and the meds did help your inflammation. I am sure it will all work out. You are in our prayers my friend. You are an inspiration to many!

  3. So sorry about the no mans land you're in. Seronegative RA can feel like that. The majority of seronegative people convert to positive later on. You might want to ask for a new RA test called Vectra DA that measures 12 proteins instead of just one or two like traditional RA tests.

  4. I love you so much. Your RA journey may not have the right title, but it has the right fighter. You have given so much of yourself to others. I know that because of going on an RA journey others found a home, a friend, a safe place. You are an amazing person. I can't believe how lucky I am to have you as my sister. I love you with all of my heart.

  5. Omg I feel like I am reading my life story with RA right before my eyes. I was on all those meds and now orencia my 3 rd week, but I have all these other doctors I have had to go to b/c of all the problems these meds have caused me and they want me to get a second opinion if I even have RA b/c I am not responding to the treatments. I have been devastated trying to find which way to turn and what to do and I happened to have come across your website group and reading your blog and I have so many questions.

  6. This comment has been removed by a blog administrator.