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Sunday, September 9, 2012

Crossroads

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.

 

6 comments:

  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!!!

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  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!

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  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. http://www.vectrada.com/

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  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.

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  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.

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