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March 31, 2012

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RA Guy

I recently saw all of the photos that you posted to Facebook during your recent trip to Paris. I love love love how you take awesome trips all the time!

I'm so happy to hear that the meds/biologics are working well for you Thanks for sharing your experience with healthcare in Massachusetts. (Reading about 'riding the T' bought back memories of my years spend in Boston.)

I too am looking forward to Seamus Mullen's new book!

Jane Abrams

I'm in Boston now too. I cried when I found out there was no waiting period and no huge co-pays. I go to Mass General and it's a similar setup. I love my new rheumatologist. I am also well controlled and things are looking up. I am glad for you as well. And the T here rocks!

britta

Your posts always pump me up to know that I can beat my arthritis even if that doesn't mean remission and complete pain relief! Thank you!!!!!

Amy

Welcome to Boston! Glad to hear someone isn't complaining about the state of health care, here. I have HMO blue and haven't had troubles, either. Glad you are doing well and are feeling encouraged!

Linda P.

First, don't feel guilty! I'm not in remission and I'm 100% happy for you!

Second, I'm not in remission, but after a year, my rheumatologist has hit on an Enbrel, Plaquenil and Diclofenac combination that has brought me back maybe 50-60% of the way in my day-to-day life. Most days, I can stay out of bed, if I can no longer jog, for example. I can still play the violin--badly, some days--even if my stiff and swollen fingers make it impossible to play in the orchestra any longer. Like you, I have met the improvement with a mixture of emotions, with fear definitely being one of them right along with gratitude. So, yes, I experience that same mixture of emotions, too. The unpredictability of these autoimmune diseases ravages our lives as much as the other symptoms.

sara

Thanks for all the support! So great to hear from you all.

Sharon

I was on 50mg Enbrel every week for about a year when my health insurance ran out....after I stopped my shots I realized I didn't need them anymore and was in remission! I have been without my meds for over a year and a half and trying to control any lingering symptoms with enough rest, good diet, etc. So far, i've been successful, and hopefully I won't experience any flares anytime soon! But for now I am enjoying a shot-free life....

Marietta

So good to see you blogging again! Regardless of remission or flare, RA will be with you somehow, even if only in the back of your mind. It is wonderful to read about someone doing well on meds!

Kat

Hey Sara, I am so happy for you. My rheumy has been working me off my Methotrexate for the last year or so. It's a slow moving process but I am down to a dosage that is basically a joke, in my opinion. Soon enough, I have a feeling I will be on a dosage that is basically a placebo. What a day that will be!

I do relate to your thoughts surrounding your identity. What has struck me is that I never had it "bad" so I always felt like I was some sort of an intruder looking in on this club. I was lucky - my RA was caught VERY early and responded quickly to meds. A lot of the pain and suffering was prevented.

Still, to imagine a life without RA in the back of your head somewhere...it's strange to me

jodi

nice to see you posting again here. xo

Kelli

Hi! I did have an experience like you have. Or I am experiencing that. I have an undifferentiated autoimmune disease and was on plaquenil for 5 years. The plaquenil controlled my joint pain symptoms and lymph node swelling. It also made my labs go back to normal. Gradually I had more muscle pain, though, which turned pretty debilitating. They found I have a toxic myopathy. Now that is improving and my autoimmune labs have remained normal. So I have been getting back to yoga and hiking (though I broke my leg doing that a few weeks ago----yuck!). It is SO strange because I'm doing things I haven't in a couple of years. While that feels great, it's like my brain has to catch up that I actually DO feel somewhat better. It also feels like a cloud is going away that has been there for awhile and it is strange to adjust to. The possibilty that my muscles will go back to completely normal with my labs being normal also seems so strange, but exciting! This chronic illness experience and the remission part currently just further resonates with me to enjoy each day for what it is without worrying too much about the future and relishing in the ability to do whatever 'doing" is for that day. :) Counseling has helped me a tremendous amount. I hope this helps. :) Here is my blog: http://intricately-connected.blogspot.com and email: intricately.connected@gmail.com.

Cynthia

Yay! So glad your "back.". I'm so happy life in Boston is going great and that you are potentially experiencing the big "R"!

Hannah Mae Smith

wow, what a nice place, I'm dreaming to visit that someday.. :)

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