All Posts Tagged ‘Rheumatoid Arthritis

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Organized Bohemian

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The house we live in has “character” or is…how to say, a little….ramshackle in places, and while I do love clean uncluttered space, minimalist decorating here at Chez Boots only accentuates the plentiful cracks, tilts and gaps.  So I’ve been slowly decorating with a theme I have come to call, “Organized Bohemian.”  “Bohemian” in the sense of artsy and colorful (distracting ones eyes from the cracks, tilts and gaps) and “organized” in the sense of sending a clear message that this is not in fact a hippie commune.

The bedroom has been my latest focus, where I ditched an enormously wide falling-apart bed frame, and bohemed it up with a drapy canopy and a luscious amount of colorful throw pillows.  Voila. We’ve got a romantic and comforting artsy little nest.  When my Venn Diagram dictates an afternoon in bed, I feel quite luxurious laying there.  And so does Midge.

 

Duvet cover by Target.  Sponge-painted walls by us, paint from Lowes.  Art by Christopher.  Throw pillows from Marshall’s.  Canopy from Amazon.  Scarf atop canopy a brilliant find at our local Rite Aid.  Cracks in the walls and tilted floor by Father Time & Mother Nature.

How could you make your Venn Diagram dictated resting spot more enjoyable for yourself?

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In a Venn Diagram kinda way…

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When I’m asked, or in places such as my little book or the “About” section of this blog, I tend to describe my health  as “3 illnesses overlapping in a Venn Diagram kinda way.”  While visiting with Julie (of the blog Counting My Spoons) over email we talked about actually putting our diagrams down on paper.  This morning I dragged this dusty pad of paper out from under a bed and made it happen.

Ten years into chronic illness, it was an interesting exercise for me, and I think it could be really useful for someone in the early years of their illness.  My imaginary dream doctor would assign this as homework and then discuss it with me at the next appointment.  And then they’d reward me with a massage gift certificate.  Somehow I doubt Medicare would cover such luxurious and obliging medical attention.  In the mean time, I will be my own health advocate, treatment coordinator and medical detective – roles most of us have learned to play out of necessity.

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Don’t wait around for your imaginary dream doctor – get your symptoms as organized as you can.  You’ll be equipped to ask better questions and make better treatment plans. But then tuck it all in a drawer and put it out of your mind – your symptoms are just that  – they’re not you.

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A big hard __(blank)__ just might cure your headache. A book, people! Get your mind out of the gutter.

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It doesn’t ALWAYS work but it works enough times for me to mention.  I’m talking about one of those headaches that is based at the intersection of your head and neck.  I first heard tell of this solution on a really silly PBS historical drama called Lark Rise to Candleford.  What happened in the show was the the new, wealthy hotel owner in the village falls in the love with the progressive spunky post office mistress.  All is well until this nasty, controlling, older woman shows up and turns out to be the hotel owner’s ex-lover and secret business partner.  She decides to intimidate the post mistress by telling her intimate details about the hotel owner, for instance that he has frequent insomnia caused by headaches (scandalous, what an intimate detail!) that she alone could cure by sticking the hard edge of a book at the base of his head. This was later confirmed when my physical therapist would end my dry needling appointments by making a ridge with her fingertips and placing them in the same point with the weight of my head pressing down.  Whether it’s a blood flow thing or a pressure point thing (maybe that’s the same thing?) there’s a definite reaction that happens, most often followed by some pain relief.  Best of luck!  At the very least you’ll have something to read.  Just don’t get the book Lark Rise to Candleford was based on.

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A calm, well-argued opinion piece

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Follow this link or click on the image below to read a succinct, calm and well-argued opinion piece by Donald Unger in the Boston Globe.   I had the pleasure of briefly meeting Mr. Unger earlier this year at NH Arthritis Foundation event, and within 5 minutes he kindly offered up a Fibromyalgia doctor recommendation and also told me about the US Pain Foundation.  He strikes me as a great example of living incurably –  he didn’t shift the conversation towards his own health once, indeed I had no idea he was a pain patient himself until I read this article. {2/14 Redaction: Donald Unger was NOT the man I briefly talked with at the NH Arthritis Foundation event.  I have never met Donald Unger and have no idea why my foggy brain insisted with such clarity that he was.  My apologies.}    If you approve, share it via social media – I think it’s such a reasonable argument that it could even sway people who are close-minded about pain management.  Bravo.

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…and happy snow day to New Englanders today.

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Dry Needling: The Most Painful Thing I’ve Ever Loved

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I became interested in dry needling after I was informed that the trigger point injections I was getting were not a wise long-term plan.  Both trigger point injections and dry needling have been helpful in lessening the severely painful muscle spasms I have in my neck and shoulders, but the steroids they inject with trigger point injections can be dangerous if repeated too often.  So I turned to dry needling which involves a needle being inserted into the same trigger points, but not injecting anything.  (Dry needling is used to treat all kinds of pain, not just shoulder muscle spasms.)

As I understand it, the  medical procedure goes like this: My fabulous physical therapy doctor Irene inserts a needle into a trigger point (i.e., my most sensitive points of pain) then moves the needle around until she elicits a twitch of the spasmed muscle.  This twitch disrupts nerve signals and ultimately relaxes the knots plaguing me.   Here’s one company’s summary of the process and here is a short YouTube video showing a real patient getting dry needled.

Does it help and does it hurt?  In my experience, yes and yes. During the procedure (which I get done 1-2x week) some of the needling causes a really intense pain that takes my breath away.  For weeks and weeks I bragged to people that the pain was just awful, but that I could somehow “separate” myself from the pain when it got really bad and therefore could handle it.  That was when my appointments were in the afternoon.  Then one day I had a morning appointment – before I had taken my usual 10:45  first dose of Tramadol.  Not surprisingly, that day I had trouble “separating” myself from the pain.  Not such a super tough patient after all.

I often leave my appointment feeling like I have deep open incisions all over my shoulders.  The next day, I feel really good – way better than I did before my appointment –  and my shoulders are much much looser.  For me, the discomfort is worth it because the spasms torture me to such an extent I think I will go crazy if I don’t get some relief.  I joke that if they weren’t sticking needles in me, sooner or later out of frustration I’d be sticking a fork in my shoulder myself.

My Dry Needling Pointers

* If a practice says your insurance doesn’t cover dry needling, try other places before you give up.  I’ve been turned down by offices saying they take my insurance but that my insurance doesn’t cover dry needling, and then had the procedures covered in full at another medical office.  I guess they must bill dry needling differently at different offices.

* After your appointment, resist the urge to curl into a ball and lay still.  The more you move around and stay loose, the quicker the pain will dissapate.

* Do the accompanying stretches your PT doctor tells you to every day.  It will make the effects of the dry needling last longer.  But do them gently or you’ll just make things worse.

* Let your PT doctor know exactly how much you think you can take.  It’s okay to say, “I only want 4 needles today please.”  Make it work for you, not to you.

(This is not medical advice; I am simply relaying my own experiences for those interested.  I am not a medical professional or a dry needling expert.)

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