3 Things That Control How Much #Rheum Can Steal from You

Ever feel like Rheumatoid Disease is eating away at your life? Stealing abilities – even responsibilities – you enjoyed?

How much wood would a woodchuck chuck?

woodchuck- eatingRoo’s been asking this tongue twister / riddle lately: ”How much wood would a woodchuck chuck if a woodchuck could chuck wood?” He enjoys saying it faster and faster. Boy was he surprised yesterday when I responded with the favorite tongue twister from my childhood: “Peter Piper picked a peck of pickled peppers…” We laughed and he started to practice to be as fast as me. Good luck, Roo – Peter Piper is imprinted in my tongue, the way so many others activities were on my hands – even things I have a hard time doing now…

What is “chuck”?

According to one study quoted in Wikipedia, chuck suggests eating through: “chuck to be the opposite of upchucking, determined that a woodchuck could ingest 361.9237001 cubic centimetres (22.08593926 cu in) of wood per day.” Mmmm.

So how much of our abilities can Rheumatoid Disease (RD) chuck (eat through)?

1) It depends on our disease: Rheumatoid Disease can range from mild to severely active. How can we measure how active RD is or its impact on abilities? Measuring disease activity has been a thorny problem discussed in 25 posts on RAW. How active is your RD? Is it 24-7 or just “flares”? Does it affect every joint or just a few?

acr20 pie chart32) It depends on treatment response of a particular person with rheumatoid disease (PRD). The 20% improvement (that about 29% of PRD receive) means something different to a person with 5 joints affected than to a PRD with 25 joints affected! And even more so for those who have a 50% or 70% improvement who may have a “got my life back” experience! How well do disease-modifying drugs or Biologics suppress your RD? Did you get your life back with them?

3) It depends on us. To some extent it depends on our effort. I won’t foolishly say, “You can do ANYTHING you set your mind to.” Because you can’t fly. I’m sorry it’s just the truth. But with EFFORT, PERSPECTIVE, and CREATIVITY, you can probably do more than you thought. Instead of saying “I can’t,” I’ve learned to describe myself as “a struggler” insisting there MUST be a way, pushing my limits (probably farther than I should sometimes). How hard do you struggle to do the things important to you? No one may know but you how much effort it is.

Funny thing: I didn’t remember until after I started writing this post, but woodchuck is another name for the groundhog, the adorable mascot for Rheumatoid Awareness Day – February 2, Groundhog Day – click to read about why that’s meaningful.

NOTE: Please read this BRIEF UPDATE WITH REQUEST FOR HELP. “In some ways RA Warrior (RAW) and the #rheum community that grew from it have been like family to me and to one another. Many lasting and close friendships…” keep reading.

Don’t miss 26 posts on “Rheumatoid Arthritis Disability” – Humor, tips, and, and encouragement.

Related articles on RA Warrior:

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/

9 thoughts on “3 Things That Control How Much #Rheum Can Steal from You

  • November 6, 2015 at 3:53 pm
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    I’m in a seriously active period right now after 7 years of doing well on a biologic,am hurting all over 24/7. Trying my 5th biologic treatment for 2015 and admit being discouraged. Still pushing it,struggling to do things and have a life. There are so few people who will listen or places to say this. I don’t want to whine, but gosh it helps so much to just Tell someone!

    Reply
    • November 6, 2015 at 4:02 pm
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      It’s so hard to struggle every day especially when people don’t realize it so there is not enough help. I hope this new treatment works for you Karen so you can get some relief!

      Reply
  • November 6, 2015 at 8:30 pm
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    I AM SO GLAD YOU’RE BACK! There is no other patient blogger like you! What a master of the medium!

    Reply
    • November 8, 2015 at 11:03 am
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      E-Patient Dave – you said it better than I can! After months of wringing my hands (figuratively, of course) and worrying, I (and the rest of the community, I am sure) am so relieved to see that Kelly is back.

      Reply
    • November 8, 2015 at 11:16 am
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      EVERYONE!!!
      We need to create a TSUNAMI of help for Kelly!
      Only $13,689 in 22 days is pathetic! I have seen over $100,000 collected in a shorter period of time for injured animals! (I don’t begrudge those contributions, but I’m appalled that we can’t get more contributions for Kelly who has given so much to so many people for such a long time!)

      Almost all of us can afford $5 or even $10 to help Kelly. We just need to DO it! Those of us who can need to contribute on an ongoing basis. Those with the wherewithal might organize bake sales, garage sales and other fundraising efforts with the proceeds going to Kelly.

      I’m setting up an ongoing monthly donation. Such arrangements can be discontinued when needed. Every little bit will help! Kelly has sacrificed time and money for us for YEARS! Let us now sacrifice at least a little for her!!

      Love, Hugs, and HOPE!
      Elizabeth Riggs

      Reply
  • November 6, 2015 at 10:30 pm
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    At 65 am dying from my inherited Rheumatoid. Methotrexate injured me twice the 2 times on it. Biologics did not work or not for long. After foot surgery 10 years ago I got hospital infection it has come back this year for 3rd time. My hip is broken from rheumatoid and my left knee now wheelchair bound Rheumy tells me cannot have surgery as it would kill me. Now looking at palliative care.

    Do try medicinal cannabis as I know from others it has stopped this disease for them. Unfortunately Australia does not legalise medicinal marijuana

    Reply
    • November 8, 2015 at 10:48 am
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      Heather, you are in my prayers. My mother died at 59 of complications of rapidly progressing and severe rheumatoid arthritis mutilans. I’m finally on a biologic I can afford, and it is helping some – not totally, but I am better.
      Please keep in touch through RAWarrior – and I will do the same.
      Gentle hugs!
      Elizabeth

      Reply
  • November 7, 2015 at 1:03 pm
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    Heather. You are in my prayers. Peace and love to you.

    Reply
  • November 13, 2015 at 11:34 pm
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    Wanting to know anyone that has been on infusion Simponi?

    Reply

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