Supportive Community Important When Living with Rheumatoid Arthritis

  • There were moments in the two weeks I was off that were wonderful. It's been a long time since I didn't have a to-do list as long as my arm and spending a couple of weeks with my primary responsibility consisting of sitting still and being nice to my body turned out to be very healing for perpetual buzzing in my brain.


    And then there were moments, rather a lot of them, where the reason I was off was front and center, coloring my day with the kind of pain and inability I haven't experienced for a long time. Hard days. The kind that make you feel alone inside a world of pain and nastiness, wondering if you'll ever get out on the other side. Those were the times where I would pop back by MyRACentral and read the comments you left on Brad's and Allison's posts and I would no longer feel alone. Every one of those comments felt like a hug and made the hard days easier. I am humbled and grateful for your messages and want you to know how very much they helped.

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    I often talk about how wonderful and supportive this community is and this experience has me realize even more that we have become a true community on MyRACentral. We may live in different areas, even different countries, but here, that doesn't matter. What matters is that when one of us is hurting, we circle the wagons and help them through. Sometimes by a laugh, sometimes by sharing our own experience and sometimes by picking them up with love and gentle hands and lifting them into the light. I'm not just speaking of my own experience of being on the receiving end of the compassion, but of the way you all stepped up and covered for me. Some of your volunteered to become featured answerers now and in the future, taking on the roles of becoming leaders in our community and some of you kept doing what you've been doing all along - giving of yourself in comments and the Q&A area, helping others who needed it and sharing of yourself.


    And in the meantime, I sat as still as possible, but early last week, three days before I was supposed to come back to work, it felt as if there had been no progress at all. I was still taking an unnerving amount of pain medication and it was still not controlling the pain very well. Doing anything at all very quickly got me back to the place where everything was pain. But slightly later in the week, the day before I was supposed to come back to work I got my Humira shot and was granted one of the Biologics miracle moments. They happened quite a bit when I first started taking Biologics, but rarely these days and the odd time it does, I'm left awed, grateful and teary-eyed. Because that evening, a mere six hours after my shot, I was fine. Well, there was still pain, but not the blinding, all-encompassing, neverending pain that leaves you breathless and incapable of doing anything but sitting and rocking. Now, it was manageable. And did not increase if I puttered around and did a couple of things.


    And this is why we take these drugs. Because they give you back your life.


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    So the big question is, am I healed? Did stepping away for two weeks have the intended effect? Did my Humira miracle moment take me the rest of the way into being back to normal? Yes and no.


    Yes, staying away from the computer allowed my body to focus on healing and probably allowed for that moment of Humira taking me past the line that separates feeling like crap and feeling OK. But on the other hand, going back to work has made it clear that I am not altogether healed yet. And that's why I need your help.


    For the next month, maybe longer, although I am back to work, certain of my activities are going to be more limited. Working on the site is hard on me - when I write in Word, I use Dragon NaturallySpeaking, but answering questions and making comments takes more keyboard and mouse work and the injury has let me know in no uncertain words that it still needs time. So I'm asking you, all the wonderful people in our MyRACentral family, to continue what you've been doing while I was away and take care of each other.


    Please, if you can, keep an eye on the Community Alerts in your My Home area and if you see a question or SharePost where you think you can add to the conversation or give an interesting perspective, please leave comments and answers. Even if there are already other comments and answers, you may have an experience or perspective that can deepen the discussion and ease the pain of the person who posted. I'll be here in the wagon train with you, but not able to pay as detailed attention as I normally can, so if you see a question you think needs my input, please send me a message with a heads-up. If you do, I'll acknowledge your message, but please be aware that if I get a lot of them, I'll probably have to do some sort of standard/form reply in order to not strain my shoulder too much with individual messages.

    Thank you again. For everything you did for me and for everything you do for each other.



    p.s. Our tech department is tinkering behind the scenes and we occasionally have the odd technological hiccup. I got a few message alerts while I was off, but no actual messages. If one of those messages was from you,, please try to resend it.



    You can read more of Lene's writing on The Seated View.

Published On: July 30, 2010