Behind the Scenes Video: Patient at a Social Media Conference

Telling it like it is. On camera. It’s uncomfortable.

Behind the scenes at a conferenceIt’s very hard to talk about harsh pain. Why does pain seem so embarrassing? I even gave birth in quiet agony a few times because of that.

3 aspects of RA that are difficult to discuss

  • It’s hard to talk about pain, so most of us are pretty private about the intense and constant nature of pain with RA. I strongly recommend the article about the study by Vibeke Strand from 2010. It shows the constancy of RA pain, even with treatment.
  • It’s also hard to explain The Usage Principle. I recommend this blog post and the 50 comments after it. It’s what I call the “dirty little secret about RA.” Almost everyone with RA experiences it, but it’s not in the academic literature. (It’s one of several things first brought up on this blog.)
  • It’s hard to function in a crowd of healthy people who don’t understand that you need help. That’s why I wrote By the Way, I Have RA.

Anyway, the other night, I took 5 minutes to talk about how hard it is and we created the following 90 second YouTube video from that. After we stopped recording, I took pain medicine and slept. I couldn’t even wash off my makeup. You know how it is when you hit the wall.

Post blog: By the way, I recorded some happier sounding videos a couple weeks ago & we’ll post asap. I learned iMovie on KB’s Mac to edit this one. And I think I’ve finally got a program that will relate my Kodak flipcam to my Dell laptop. Exciting to solve long-standing tech issues isn’t it?

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

4 thoughts on “Behind the Scenes Video: Patient at a Social Media Conference

  • October 24, 2011 at 9:58 pm
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    Hi Kelly,

    I’m sorry you’re hurting. We all know what it is like. I was at a conference myself last week. My Enbrel treatments finally started to work after the 4th dose. The pain and stiffness are a bit better, but I still have pain. Thankfully my rheumy upped my pain med dosage the last time I saw him. So at least now I feel more comfortable. I noticed at my conference last week that the pain wasn’t so bad, what was really getting me was the fatigue. When you hit the wall you hit the wall and all you want/need is a warm place to lay down. Hang in there.

    Reply
    • October 25, 2011 at 9:43 am
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      Thanks for the encouraging word. And the great news about the Enbrel. Thanks to good support, I will hang in there – my kids force-fed me 2 scrambled eggs after the flight home – it was after 10:30 pm. They convinced me to get into a warm salt bath – but I got out in less than 5 minutes for fear of drowning (I could not keep my eyes open). Ten hours sleep did help, but this all-over flare is par for me. It has progressed slowly over the last 5.5 yrs but never remits even a little. The days at the conference were – up by 6:00 am and back to the room to collapse around 10pm – working through meals and walking long distances between events. – the upcoming ACR week is similar – last yr I prepared by spending a whole week in bed resting to try to quiet my RA down. It’s so hard to explain because my nature is to gogogogogo. That does not help RA.

      Reply
  • October 25, 2011 at 8:24 am
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    Sorry you are having a hard time and I hope you are getting better treatment now. My treatment is working pretty well for me but I’d like to talk more about the usage principal you spoke about. I re-read your post and I know that exercise is recommended for RA when your joints are not flaring (so hard to find that spot for many of us!). But I find that even small increases in activity can bring joint pain and fatigue. I would expect to have to take it slow; I have been two years of not being really able to exercise or do what I had been doing. But the joint pain seems to indicate that the RA symptoms are not really under control but just barely surpressed. I understand too that RA damages tendons and muscle fiber and I have to wonder how much of what I am experiencing is the result of lack of exercise and what is disease damage.

    Reply
    • October 25, 2011 at 9:10 am
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      Hi Leslie. Good to hear from you & that something’s working for you. I’m not having a harder time than usual – this is how it has been for me since the early spring of 2006. No treatment has made much difference & my RA stays the same.

      There are 2 usage principle posts & 4 exercise posts you can go back to. A 5th exercise post is scheduled to go up later today (I wrote it before the trip to Rochester). Anyway, there is usually a lively discussion afterward, in part due to the fact that some people only read part of what is said before they give an opinion – and in part due to the political football that “exercise” or “movement” is with “arthritis.” Distinguishing Rheumatoid disease from “arthritis” will make this clearer for everyone.

      Joint pain (or stiffness and weakness) brought on by movement can be a sign of inflammation. It does not feel the same as the “good pain” of tiredness from exercise when you are healthy. You may not ever be able to do exactly what you did before RA or in exactly the same way, but only you can know just how hard to push yourself. There are few physical therapists that know enough about RA who can help you exercise safely – but even if you had one, I believe that you are the only one who can know what your limits are – and the right time to stop some activity.

      Investigators are just beginning to recognize the vast (inflammatory) effects of RA on soft tissue which occurs prior to bone erosion and the potential of various imaging techniques to observe this – there are articles coming up here on the blog on these topics – — One day, these issues will be better understood because there will be “proof” that the doctors can “see.” However, good doctors who listen to patients can know already about this principle and how it works with RA.

      Reply

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