Severe Rheumatoid Arthritis Can Leave You Stuck in Orbit

Severe Rheumatoid Arthritis can get you stuck.

cropped space shuttle

We who live on the Space Coast follow the Space Shuttle like most towns follow their local high school football team. When there’s a launch, people run out into the yard, climb up on their roofs, and cheer like it’s July 4th. What are fireworks compared to a giant rocket launch?

A large portion of the jobs here relate somehow to NASA or the facility at Cape Canaveral, which makes it feel even more like we are a part of that family. At my house, we even pray for the Nasa-nauts to be safe as they take off, de-orbit, or space walk. (Nasa-naut is the word my son taught us for astronaut when he was 2 years old.)

Well, Florida is awash right now; this is our sixth straight day of constant downpour. Roads flooded out, etc. So, of course, shuttle Atlantis scrubbed its landing this morning. No big deal, right? They can try to come down again tomorrow. And after that, there’s always Edwards Air Force Base in California.

Still, there is a sense of apprehension when the local space reporter describes the ways in which the Nasa-nauts have had to reduce power usage. They have to conserve power – just in case. They began to save energy a couple of days ago when NASA saw the weather report: rain in Florida with no end in sight and a few storms at Edwards, too.

Conserve energy, I smiled to myself.

Wow, the Nasa-nauts and I have something in common. I constantly have to worry about whether I will make it home. I’m not usually in orbit, mind you. But I do live about an hour from most shopping or doctor’s appointments. I get myself out there (Orlando or Melbourne, usually) and then it’s all about how I will make it back.

Energy used to seem limitless.

However, severe Rheumatoid Arthritis broke my fuel gauge a few years back. I read about it once in medical journal. No, they didn’t call it a gas gauge. But, doctors say that when you have RA, you are supposed to pace yourself carefully because you can no longer accurately judge how much strength you have remaining at any given time. It can be completely gone quite suddenly.

It’s like this: the fuel gauge reads ½ a tank. Two miles later, you look down and you’re approaching “E.” Then, you’d better get back quickly or you’ll be stranded in orbit.

Alas, physical energy must be conserved, but the engine inside the soul revs up just the same. Every day, I hear people with RA talk about the frustration of these restrictions and limitations. If physical energy remains limited, maybe we can become limitless at something else – like compassion or patience or joy.

We’ll learn new ways to express that powerful energetic enthusiasm of ours. And that way, when others are flooded out or stuck in orbit, we will still be soaring.

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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/

18 thoughts on “Severe Rheumatoid Arthritis Can Leave You Stuck in Orbit

  • May 26, 2009 at 8:35 am
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    another great picture. great writing.

    D

    J

    Reply
  • August 11, 2010 at 11:30 pm
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    Great thoughts Kelly. I can’t tell you how many times I’ve been “energy stuck”,somewhere in the mall shopping or at the swimming pool, worried how I will get home. “Orbit” is a great descriptive term,as I often fantisize a day where I can say “beam me up Scotty” and the transporter will magically take me where I need to go without any effort or all consuming pain. Haha!

    Reply
  • August 11, 2010 at 11:37 pm
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    Kelly, I am experiencing this more as I get older, of course, but I have begun to refer to that condition as “scary tired.” I finally, last year at 76, had to permanently retire from a volunteer job I’d had for more than 26 out of the last 42 years–booking and publicizing folk concerts– because I wasn’t always sure I could make it home at 11 or so at night after the concerts. Hanging on to the steering wheel and chanting “I can do this,” is probably not the best idea, even though the psychic energy is still there.

    Reply
  • August 11, 2010 at 11:58 pm
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    Yes, I remember doing the same thing watching the shuttle take off…I lived at Patrick AFB for 2 years, as a Navy wife. Matter of fact my youngest was “launched” at Cape Canaveral General. I never thought about RA in relation to orbit or space but it certainly gives me a new perspective.

    Reply
  • August 12, 2010 at 12:43 am
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    thanks for posing this kelly…now i know why i get easily tired even when the day is not yet over. i’ve noticed that i can’t seem to do the same activities i did in the earlier years i was diagnosed with RA.

    hope we could really find something wherein we could be limitless though physically limited… 😀

    Reply
  • August 12, 2010 at 7:29 am
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    Kelly~ What a great comparison!!! So true…I always wondered if zero-gravity would make a difference on our joints??? Wouldn’t that have been cool if they could do some kind of “science project” in space on inflammation and pain factor??? Although, I don’t know how we would all live in zero-gravity if it worked!! =) Thanks again for the enlightening descriptions of our “fuel gauge”. I love the “nasa-naught” term–how cute and clever of your son!!!

    Reply
  • December 8, 2010 at 7:59 am
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    Kelly-What a wonderful post. I am also from the Space Coast, and would love to get involved locally! Just knowing that there is someone else here in my own backyard who truly understands RA is so encouraging! Please contact me!

    Reply
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  • March 25, 2012 at 1:56 am
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    I particularly like your fuel guage analogy. Can’t think how many times I thought I had half a tank left, and suddenly I was running on empty. Great post. I’ve sent many friends to your blog (who don’t have RA) because I think these kinds of posts really help explain what to them is inexplicable.

    Reply
  • May 17, 2012 at 10:24 am
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    Has anyone on or has used mylan azathioprine. I made up my mind not to use this because of the side effects. Even if I only have a small chance of the major side effects. How I see it I have one big problem with R.D. r.a. and I don’t need other major problems. These drugs make me so sick.

    Reply
  • November 29, 2012 at 12:18 pm
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    I was glad I found this post. It explains alot to me as a newby to RA. I was wondering if I was crazy.

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    • November 29, 2012 at 12:23 pm
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      no, you’re not crazy! I should put that as a recording when people visit the site. This disease is so misunderstood that those who live usually with it just find their way through. So glad you found us Carol.

      Reply
  • September 17, 2013 at 2:00 am
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    Kelly
    I’ve so enjoyed reading this blog from the very beginning.
    I’m really glad you didn’t give up because you have made a tremendous difference in this world and to me.

    I found inspiration and hope in the thought that even though I have about an 8th of the energy I use to have, I may be able to make a difference in this world, despite that. As a counselor, I believe I can with some adaptation of how I work. The biggest adjustment for me is accepting that the old energy I use to have is not going to return. But my spirit for contribution lives on. You have become a role model for how someone with RD can do great things in this world, despite chronic illness.

    Thank you!

    Reply
  • May 27, 2014 at 5:10 pm
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    “If physical energy remains limited, maybe we can become limitless at something else – like compassion or patience or joy.”
    That speaks volumes to me right now. It is an attainable goal and one that will impact my 3 year old son hopefully as much as a mommy that could keep up with him would. I greive every time I have to say, ‘No, let’s just read a book right now” when he had rather be outside and running. I hate this disease for taking that from HIM. Forget about me, HE deserves so much more. But compassion, patience, and joy, I can do that anywhere.
    Thank you I needed to see that today.

    Reply
  • April 20, 2017 at 6:50 pm
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    My rheumatologist says I don’t need biologics yet because I have just little inflammation and swelling! Wants me to try curamin for the pain I am having! Has anyone tried this? It’s an herbal remedy. She prefers natural treatments such as turmeric, bromelain instead of pain meds. But I feel she is not doing enough for me. I will be seeing her in 6 wks instead of 3 months because she is so sure this will help me! I have doubts.

    Reply
    • April 20, 2017 at 7:03 pm
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      I tried those Helen to see if they would help and they didn’t. It’s possible maybe for it to help some if one’s disease activity is very mild.
      If your disease is aggressive however, treatment should be aggressive also.
      I disagree with doctors who say wait until it’s worse for medicine because that’s “old school ” and disproven. The modern way is to try to ***prevent full-blown RD like i have (which doesn’t ever remit but only progresses).
      Please read more and decide for yourself so you can choose a treatment and dr that you trust. I know its hard.

      Reply

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