Day 230. A Bump in the Road

Still Life With Pucker

Warning for the faint-hearted:  this entry is all about whining, and not the good oak-y kind from Sonoma.

 

Doing my best not to be disappointed about being absolutely miserable from the drive back home the beach.
It was one of those miserable trips up the East Coast, an accident here, a detour there (How did they justify simply blocking off the exit ramp to 95 N in Va. Beach on the Sunday of Spring Break weekend, for instance?).  By hour two, I had already chewed my mother’s head off, and it took well into the sullen hour three and a half to realize that I was ready to gnaw off any one of my limbs to deaden the pain.
Fuck.
We left for this trip on Thursday.  Arrived Thursday night.  Thursday night I was up all night in this kind of pain.  Riding in the car makes me crazy with pain.  I thought this time would be different because I have a potent muscle relaxer I didn’t have before. Ha!  That muscle relaxer laughed at me and my pain.  So, Friday was not fun (compounded by the fact that it was a rainy day).  But I didn’t complain.  The foul weather was pretty.  There was the puzzle with the family.  Etc., etc.
Every time I go to the beach I have another reason to think that This Is The Time It Will Be Different.  But every time, riding in the car for five hours (which is the duration of the trip when the traffic gods smile on us) puts me into paroxysms of pain.  What is to be done?
This feels like an enormous bump in the road.

Travel seems like something I can’t live without.  When have I not traveled? My earliest memories are in Spanish, when I was living in Argentina.  I have been to many places in the Americas, the Islands, and some in Europe.  That is so little of the world. I was planning on traversing so much more of it: Asia, Eastern Europe. But right now, I’d be happy to make a car trip, say, to southwestern Virginia (on the Tennessee border), to visit my little brother at Emory & Henry College.

Oh puhhleeze, Heidi.  There’s more than just a hint of the whinge here. In my defense, though, it feels to me as though I whine the best and most when I am problem solving.
I want to be able to take my older brother on a trip for his 50th birthday, but what good will I be if I can’t travel?   If I force myself to travel under present circumstances, I may ruin everyone’s trip.
Mike, my phenomenal physical therapist, educates me about the neurochemistry of pain.  He says that if you have chronic pain, at the spinal cord level, your body’s neurons can misfire.  Rather than firing up toward the brain, they fire backward, releasing neurotransmitters back into the synapses in the body, which creates a hypersensitivity to pain. The more the body floods with those neurotransmitters, the more the entire makeup changes. Of course, my explanation is grossly oversimplified, and only one part of what happens, but it is an important part of the explanation.
However, the good news is that these synapses, or connections between the neurons, can be completely rewired in seconds, minutes, or hours, which means that the pain response can be entirely different by the end of the week.  In other words it is entirely possible for you (or me) not to have any more chronic pain by Sunday.
Some fascinating recent research demonstrated that patients with chronic pain in abdominal muscles lit up numerous areas of the brain in a functional MRI that shouldn’t have been lit up when they tensed those muscles. SO, when their doctors explained this pain response to them for three hours in just the language I used now, and then asked them to tense the same muscles, the functional MRI showed a dramatically improved response.
The theory behind this doesn’t argue that this is a “mind over matter” transaction, but rather that knowing, intellectually, that this process exists can help rewire the body’s neurotransmitter response.
The idea is to un-learn that pain is a threat, which is counter-intuitive. For me, that has been difficult:  I am too good a researcher and am capable of imagining precisely what sort of danger this or that pain could be.  However, I’m working on that and have it down pretty well. So this week, when suddenly my right wrist just hurts and is swollen for the first time, I’m just pissed off, rather than worried (C’mon, man, it’s my writing hand!). Clearly, it is some dumb Ehlers Danlos thing; what a massive inconvenience now to have to wear a brace for a week. But, I can’t let those neurotransmitters get me down.
I don’t know how far this will get me down the road, whether it will take me far in terms of travel downstate, cross-country or cross the pond.  I wish I had some ideas about that.  I’m hoping those issues will resolve themselves with my new resolve.
What is your bump in the road? What are you overcoming?

 

 

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Day 347. Pretty in PEMF

So my mom and Nathan watch the local FOX station evening news, and I happen to admit that because they called me the other night to say that Dr. Oz had been on to promote the next day’s show.  The topic was to be a patient-controlled device that seems to be quite successful in treating a number of health concerns, but particularly chronic pain such as headache, backache, and nerve pain.  Yes, please.

So, that was one Dr. Oz episode I TIVOed.  I was so excited about the topic that as I watched the show, I did more internet research than pay attention to the commentators.  Do you ever do that, and wake up from your internet dream only to discover that the whole show is over?  If you have a DVR, you can rewind it, but the time you set aside to watch it has passed and there you were, foiled by the time suck on your lap.

Well.  So, I learned that PEMF, or Pulsed Electromagnetic Field Therapy, has actually been around since the 70s, and received its FDA approval in 1979.  (To be clear, this has nothing to do with the ordinary refrigerator type of magnets sold fallaciously as headache and arthritis cures; it’s a different type of magnet.)  The device is frequently used in the field of orthopedics for things like broken bones that won’t knit and arthritic pain.  Also some rheumatologists and physiatrists (pain doctors) are experienced in treating soft-tissue wounds as well as suppressing inflammatory responses at the cell membrane level to alleviate pain and increasing range of motion.

The device(s) (by various makers) seem to have been studied extensively over thirty-odd years — although I did note among the 40 and 50 abstracts I read that none seems to have investigated in a large study group of beyond, say, 50 subjects.  But studies seem to prove in small groups that PEMF Therapy can treat acute pain dramatically well, and chronic pain as well, but somewhat slower.  This has been my experience so far exactly.

Here’s what it looks like:

These machines have one major disadvantage, and that is cost: at present, insurance doesn’t cover treatment, so there’s no $25 copay/visit, and even if there were, at the very least one should be treated three times weekly.  Ideally one would be treated twice daily.  At $25 a pop for copay, the cost would immediately be out of most of our reach (and who pays a $25 copay anymore?).  If there is any good news, it is that some of the machines are now made for home use. Thus, rather than costing $25,000, they cost between $3000 and $5000, which still puts them outside of most of our reach. We can gather, though, if the insurance won’t cover a copay, they certainly won’t cover the purchase price of the machine.

One company, iMRS, figured out a way to let desperate people try the machines.  They rent a brand-new machine for $500/month (with a refundable $1000 deposit on the credit card).  We can rent as long as we like, and if we decide to keep it, all the rent (and deposit) will go toward the purchase price (which is close to $4000).  The cost is still outrageous, but for someone who is desperate (and potentially has only 347 days left on the planet), all money starts to look like the gold-colored five hundreds in Monopoly:  imaginary.

That last argument not holding any water, my Mom and Nathan helped me rent it for a month.  Let’s see how it goes.

Here are a couple of other parts of the machine:

So far, it hasn’t afforded the miracle cure I’ve been hoping for.  I would say, though, that it is fairly miraculous on acute pain, like the headache I wake up with three times weekly that I mention in the probe video, a feeling like someone is cracking open the bridge of my nose and then chopping it up in pieces.  If I run the probe over the offending areas for the prescribed 16 minutes, the headache will be gone afterwards (rather than taking a day, or more, of extra narcotics to try to treat it).   Similarly, it can help sometimes with arthritic pain that pops up as well.

Karma is sweet, though.  Nathan has had a shoulder injury for many years from parachuting from a plane.  He’s a tough guy and doesn’t take any painkillers or complain, but he says he hasn’t slept well for as long as he can remember, and putting on coats and things have been impeded from his range of motion.  I put Nathan on for one eight-minute treatment for chronic pain.  He didn’t feel much different immediately afterwards–and he was pretty skeptical about the device. However, he called me the next day to say that he slept better the night before than he had in as long as he could remember.  And even more compelling was that he had just about 100% range of motion back, which he hasn’t had in lo these many years–since a few years after the injury.  It couldn’t happen to a nicer guy, frankly.  He deserves it!  (He’s coming back for regular treatments now, to make sure the treatment “sticks.”)

Now, here is the controller:

There are so many settings–and I have just as many ailments–I have had some trouble choosing the proper setting to use.  My brother suggested choosing the most painful thing for me, the neuropathy, and empirically pursuing that for the next month. That sounded reasonable, so that is what I mainly do, for 1-2 hours daily (except when I need to treat acute pain). I’ll let you know what I find out.

Any lower back sufferers out there?  $20 a pop; meet me in my guest room!  (By appointment only)

Day 351. Paint Your Pain

Heidi's Pain

It’s not arts-and-crafts day at the loonie bin.  Rather, Dr. A. Suggested that I paint my pain.  (That sounds a bit like self-contradiction, but just never mind).  He mentioned it before, but I could only conceive of it in abstract terms:  how will I draw pain?  What does my pain, the thing, look like?  I have no idea.

Finally, he showed me a drawing someone else had made for him in his office.  It was terribly disturbing, a person’s body with pain on it, and the dreadful, sad colors that one would expect with pain.  I finally understood (a little dense, I am, since the aneurysm).  The painting could be of me in pain.

I went home and tried to write what I saw in my head:

With closed eyes, I see
     zig-zag lines of electricity
       over my body from above
I’m on my knees, facing
     downward, with my arm back,
like a Thanksgiving turkey,
     with emaciated drumsticks
     and wings that swell up 
              and turn bright red
                   to the horror of the guests

Knowing this of me, you probably are thinking it is better I missed Thanksgiving dinner at Melanie’s.

Well, so then I painted my crazy picture, which is remarkable for a few reasons:  first, it’s a second draft, meaning that before you laugh at it, consider that the first was the really juvenile one!  Second, as I look at it with a few days’ distance, I wonder why I chose those colors.  It seems like I should have chosen dismal, disturbing colors, not bright cheerful colors, as though to say, Hi, peeps, isn’t pain just swell?  Third, if I were to include text, wouldn’t it make sense to write the words large enough to read (it’s easier to see them if you click on the picture and see it in a larger size); safe to say, though, that this is not a piece that reflects the artiste in me.

Still, it was a cool assignment.  Dr. A (as in Dr. Philip Appel) is a killer, amazing psychologist at the National Rehabilitation Hospital, who specializes in patients who are managing chronic pain brought about by chronic illness or disability.  He is so good that you almost should get a chronic illness just so that you can go see him.

Anyway, Dr. A. mentioned that at least part of the strength in painting one’s pain is that it allows us to experience the pain as something outside our body, a step towards stepping outside of the pain.  I like that possibility very much.

I wonder if this means I should take the painting, shred it in little pieces, and burn them in effigy tonight…