Posts tagged ‘rheumatoid arthritis’

March 18, 2013

#431 – How Does It Feel? – Part 2

> Dentist

Image courtesy of Marcelo Terraza.

It’s often true that you can’t fully know what something is like unless you have lived it yourself. Sure, you can empathize, you can imagine, but you don’t, won’t and can’t really know unless you’ve walked the day in someone else’s shoes and on someone else’s misshapen feet. And you can’t really do that, nor would I want you to do that.

So, how do you explain what it is like to live with a chronic disease such as rheumatoid arthritis? By using an analogy.

The one I’ve come up with is the acute pain of a toothache. It nags at you, grabs your attention and distracts you until you make your way to the dentist for that relief . . . until you get the bill, but that’s another type of pain, altogether! 🙂

Anyway, imagine that toothache, going on and on, day after day, grinding away at you, distracting you from what you hold dear.

That is what rheumatoid arthritis is like when the disease is active and uncontrolled. Unlike going to the dentist, where you get immediate relief, often the fire of a flare-up can take time—months in some cases—to extinguish.

Deepening the Understanding

There’s a post on RA Cellist’s blog that provides a link to a clip where a rheumatologist dons a simulation suit called a “Physical Function” suit. He wanted to better understand what his patients go through when their movements are impacted by a chronic and debilitating condition such as rheumatoid arthritis. The suit mimics the restricted mobility of RA, but as the interviewer pointed out, “No simulation can fully replicate the pain that people with rheumatoid arthritis suffer”.

Wouldn’t it be wonderful if more people had access to the Physical Function suit. People who work directly with those of us with rheumatological conditions – doctors, physiotherapists, occupational therapists, nurses, massage therapists, etc. I can just imagine how different our world would look if policy makers, designers and engineers were able to spend some time working in one of those suits. Products might be more user-friendly and policies more inclusive, and reflective of our needs.

I’d like to acknowledge that things have come a long way since I was first diagnosed, thirty-five years ago. However, I think that journey has not yet been completed.

Related post: How Does It Feel? – Part 1.

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February 2, 2013

#387 – A Poem: In Honour of Rheumatoid Awareness Day

For colleagues, friends, family and neighbours …

Marianna Paulson

I have RA, but it doesn’t have me.

It will come, and it will go
Advancing, retreating, and advancing some more
Mercurial, mysterious, omnipresent
It can arrive slowly, silently
Or come thundering in.

Its presence is felt
Gnawing at your joint linings
Grabbing your muscles, rupturing your tendons
Eroding your ligaments, altering your vocal cords
And, yes, even stealing from your generous heart.

At times, you can be so exhausted, too tired to talk
To listen, to participate, to be a good friend
Sometimes your life is guided
By a disease that claims you for its own
You’re there when you’re able, when you’ve had a good rest.

It can drown your dreams
Curtail your ability to work and play
The costs can be huge, lost time – a big price to pay
Physically, emotionally, mentally, and spiritually, too
It can change you, make you stronger and more determined, that’s true.

If medals were distributed, for effort, perseverance, and energy expended
To accomplish what you might call “regular”, “everyday”, or “ordinary”
Upon the Olympic podium, you could proudly stand
Claim first, second and third, you deserve a hand
For feats favoured by Heracles, Nike and Proteus.

It will come, and it will go
Advancing, retreating, and advancing some more
Morning, noon, night, can bring drastic changes
You have rheumatoid arthritis
But it won’t have you.

Please help A Rheumful of Tips get to Page 1 of Healthline.com’s Best Health Blog of 2012 contest. Consider voting for A Rheumful of Tips every 24 hours with your Twitter or FaceBook account. The contest ends on Feb. 15th. Thank YOU!

Thanks to all who entered my giveaway; your love of tea was evident with your creative answers. A variety of Chai Teas will soon be brewing at Karen’s home, thanks to the fine folks at Stash Tea. Stay tuned, I’m working hard to find some other giveaways for you.

January 1, 2013

#371 – Invoking T.O.T.O.M.

Theory othe Oxygen Mask.

Just like those pre-flight instructions that go something like this: “In the unlikely event of an emergency, oxygen masks will drop. Please put your mask on before attending to your children.”

When you live with a chronic disease, it is important to look after yourself.

This means eating well, getting adequate amounts of rest and exercise. Thinking P.C. Nurturing yourself, which includes your spirit.

Minding my spirit this New Year’s Eve means that what was planned will not be, and what will be, will be. It means that my intended post will have to wait. (For a hint, please visit my new website—thank you, Kathrin!— and check out the slider on the topic of joy.)

2012 began with a pop and ended with a (belly) flop, which wouldn’t have been so bad if it had been into water!

Missteps. Slip Ups. Fall Down. Get Up.
A teeter-totter of losses and of gains
Times of triumph and of pain
Body, Mind, Heart and Soul.
Time travels, friendships grow
Laughter shared; tears flow.

Missteps. Slip Ups. Fall Down. Get Up.
Breathe out, breathe in
One foot, then another, and again
The winds of change are blowing strong
Nature soothes, friends hearken
Thoughts clarified, decisions loosely woven.

Life, like rheumatoid arthritis is mercurial. Sometimes, you’re on a teeter-totter, other times a roller-coaster. Reach out, hold on, hunker down. Pause. Breathe.

My wish for you is a heart-felt Happy New Year! May 2013 bring you more joy and less pain.

December 20, 2012

#369 – A Snow Shovel of Trouble

mariannasnow3Fortunately, I now live in an area that rarely gets blanketed in snow, so shovelling is not something with which I have to contend. However, I can’t help but draw a similarity between a serving spoon and a snow shovel.

For someone with rheumatoid arthritis, something as innocuous as a basting spoon can present the same sort of challenge an able-bodied person may have with a shovel, mounded with heavy, wet snow. Wrists and hands that are ravaged by rheumatoid arthritis become weak; the joints are not providing the necessary support to assist in the work.

Here is a last minute gift suggestion: If you know that your neighbour, friend or family member has rheumatoid arthritis, consider helping them out this winter, if you are able to do so. Surprise them by clearing the snow from their sidewalk and/or driveway, or provide a gift certificate to a snow cleaning service. Perhaps there is a kid in the neighbourhood who is looking to make some extra money.

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