Severe Rheumatoid Arthritis Can Leave You Stuck in Orbit
Severe Rheumatoid Arthritis can get you stuck.
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.
Recommended posts:
- Working and Rheumatoid Arthritis
- The Rheumatoid Arthritis Curriculum
- Rheumatoid Arthritis Makes Things Difficult
another great picture. great writing.
D
J
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!
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.
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.
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… 😀
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!!!
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!
Teresa, I will email you. Yay! I’m just behind. 🙂
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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.
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.
I was glad I found this post. It explains alot to me as a newby to RA. I was wondering if I was crazy.
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.
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!
thank you Roberta. This means a lot to me.
“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.
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.
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.