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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.