All Posts Tagged ‘Multiple Sclerosis

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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 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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Oh that AshleyJane

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Gil Pender was getting a check-up today at the verternarian (yeah Banfield conveniently located in PetSmarts) and one pamphlet in particular caught my eye.  Not one iota of me wants to think about my beloved cat having a chronic illness.  But that’s a reality for some animals, so I guess it’s a good thing that veterinarians are progressive enough to frame the issue as such.  But still.  Ugh.  What a dismal notion.

You know what, I wouldn’t ever want anyone to feel that way about me.  Oh that AshleyJane with that depressing chronic illness.  All those symptoms.  All that pain.  Ugh.  How dreary it is to think about her.  Must, must, must make it life’s work to avoid being the subject of such remarks.

Oh let’s look at how handsome and precious Gil is in his favorite box top.  Adorable.  Spirits raised.

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Washington, DC Metro Ad highlights invisible disabilities, encourages idiots to NOT pre-judge people

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Check out this Washington Post article reporting that new signs have been posted in the Washington subway system (called the Metro) highlighting the fact that not all disabilities are visible and therefore non-disabled folks should not scoop up the reserved seats just because they don’t see anyone around in a wheelchair.  I like it and think it’s friendly and informative.  Probably something I never would have thought of if I wasn’t chronically ill.  I’m extra proud this is happening (first?) in DC, as it was my home city for close to 5 years and the Metro was my sole means of transportation.

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Great job by the Metro’s Accessibility Advisory Committee.  We all appreciate your thoughtfulness so very much.

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Metaphysical Furniture

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The bed consisted of a mattress atop a wooden box-like frame.  The corners of the frame were constantly coming unconnected.  Every few days she would sit on the carpet wearing her grey cowboy boots and kick the weakest corner with her heel, temporarily reconnecting the two pieces of wood.  

I’m no John Irving (BEST 1ST SENTENCES EVER) but I’m indulging myself in thinking this opener has some nice atmosphere to it.

Self-flattery aside, the issue at hand was that my bed needed to be secured more permanently.  I was told it involved an electric drill, an extra-long screw and hope that the already weakened cardboard-like wood wouldn’t fall apart upon its encounter with said drill.  A dreaded task, but it needed to be done.  Or did it?

In addition to the bed frame constantly coming apart, due to the not-so-levelness of our house floors, in many places there were gaps between the frame and floor that bit and cut up my toes on a regular basis.  And the frame added 2-3 inches of width and length (but zero height) in an already small room.  So why was I putting effort into permanently securing a piece of furniture that provided no benefit to me and was indeed injuring me on a regular basis?

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Well I’ll tell you, once I had this realization that bed came apart pretty darn fast.  With a manual screwdriver and the vigor of two tween girls, it seemed like that frame was in pieces and in the basement before my episode of the The Good Wife ended.  The bed is now in the corner, the floor space has increased temendously, there’s no kicking maintenance required and my toes are safe from harm.

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The metaphysical aspect of this experience leaves me wondering what (or who) else in my life 1) requires constant physical and/or mental maintenance?  2) drains energy?  3) causes harm?  4) provides little to no benefit? 5) could easily be removed?  Something to think about for sure.

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