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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3 thoughts on “Day 230. A Bump in the Road

  1. I just registered with ‘Rites of Passage’ to do an aboriginal style VISION QUEST for 10 days in June. I’m very excited. It means joining up with a community of about 8-10 women, then spending 3 days solo (sola) fasting and soul searching in a wilderness setting, then back in community to understand and interpret the experience to bring it back to your every day life. Now that I have retired from teaching, what will be my new purpose in life? Will writing satisfy that need? I’m on an existential search that would give Camus and Sartre a run for their money!

    xox Laurissa

  2. Hello Heidi,
    After reading this about your pain I have a few suggestions. You might have already tried them and I will write a blog some time about pain…but I don’t want to wait to give you this information. Have you tried Neurotin? It’s an anticonvulsant but works well with neurogenic pain (for me I can’t live without it). Spinal Cord injury physicians prescribe it often with varying dosages. Sometimes one needs more than others. I take maximum 1200 mg three times a day…but when less is helpful we’re all happy! Another idea…order the book The Pain Cure : The Proven Medical Program or borrow from library. You’re very intelligent and I believe you will understand this book. It is used for nurses continuing education. It’s the best book for Pain and understanding how to help. Pain is Hell! It’s so under treated, and all I know I still deal with it. Hope this is helpful. I was concerned and felt compelled to try and help. I want you to enjoy those days once again.
    Stay safe,
    Edie

  3. Hi Edie,

    Thanks for the tips! I really appreciate any that you have. I will certainly check out the book right away. I have tried Neurontin, and it didn’t work for me (actually made me really nutty), but I have been taking Lyrica for years, and it is a wonder pill. I would be bed-ridden without it. So that much is good. I also take Amitryptiline and Topamax for pain (in addition to 3 narcotics and a muscle relaxer) a day, if you can believe that. It sounds like so much, but the result is that I have some good days. Like today I wrote a guest blog for a friend of mine who does a literary blog. And I worked on my book all day. So there are some days when it all works. I just wish I could schedule them (or have them once or even twice a week) so that I could go back to work or get a job or something. But we must hail our progress, right? Life is good. Thanks again for the tip.
    Best,
    Heidi

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