exactly that

Same story…different day…

and different patient.

This could be a page out of my memoir:

This letter was written after a nasty incident with another doctor in my clinic. She gave me all of twenty seconds to explain why I was there before launching into a very loud diatribe about how I was crazy and ruining my life, and she was going to send me to rehab. (If you want that story, it’s highlighted in blue here. The yellow blocks are the purely-necessary background, since the letter is so long.)

That left me with no option but to go to the emergency room to ask for a Vicodin script. The experience was humiliating. Nurses outside my exam room joked to each other “We should put a sign on the door that says ‘We are all out of Vicodin, go somewhere else.’” The doctor who saw me gave me a long and patronizing lecture, telling me that I should be seeing a pain specialist and not having my primary doctor coordinate my care, guilting me for using the stuff at all, with many dramatic sighs and furrowing of the brow.

Before he gave me my prescription, I asked if he had a recommendation for a pain specialist, and he gave me one. I called them up. They requested that I send over my medical records before they would make an appointment, because the doctor sat down to read them for every new patient so that he could establish a customized treatment plan. I did as they requested and two days later, I got a call. His receptionist told me that they were not going to schedule me an appointment, because the doctor said “There’s nothing else we can really do for you” and said to continue doing what I was already doing with my primary doctor.

In other words, I was doing it right.

Only, it was back in Hawai’i, and my regular doctor had been deployed suddenly.  When I went to TRICARE to request a new doctor I was told specifically, by the TRICARE rep, to request a Medical Officer (an O-5 or above) to manage my care, which I did. Then I was told by central appointments when I tried to schedule my initial appointment with the new PCM that Medical Officers were only seen on referral from general practitioners.

Cue the three ring circus.

When I arrived, in pain, and barely able to drive myself, I was force to wait, on a cold, stainless steel examination table with not even a crappy pillow for over an hour while the Chief on call read my record, because he said I was exhibiting all the signs of a drug seeker:  allergic to aspirin and several other routine migraine medications, tylenol wouldn’t work and I couldn’t take toredol because it was akin to aspirin.  Sure, I had used midrin, but it never helped.  And that was just for the headaches, but I was also having unbearable body pain…which was all in my record…and I was here for a vicodin script.

I had been out for about two weeks because of the unforeseen deployment of my old doctor.  Oh, also, GPs don’t hand out Vic scripts to first time patients.  Best I could hope for was a referral to a Medical Officer (really?, cuz, like, he’s not my PCM or anything!) and a script for 800mg Ibuprofen.  Guess how much good that does my pain?  I can swallow a whole bottle of those puppies and it won’t do me any good.

Chronic pain creates obstacles.  Obstacles in your life, physically and socially, and it is literally one of those “you had to be there” things.  A chronic pain patient already more than likely is having hir life criticized by those who used to call themselves hir friends.  People in our lives will think they know better than us how to manage our lives will want to stand back and wag their fingers thinking that all those pills we are popping are for fun or making us useless drones.  Crappy doctors with patronizing tones will make us scared to seek help to the point where we will literally suffer rather than make ourselves vulnerable.

But occasionally we find the good doctor, the one who gets us on the right track, and helps us see that we are doing it right.  Who helps us through the hoops.  The health care professional that talks us through the rainbow of pills and reassures us that we are not weak because we need the pain killers, or reminds us that they could give us a little bit of our lives back.  The partner or friend who takes the time to drive us to appointments or hold us up on the subway or help sort the pills into dosage boxes or smooth our hair when the pain is too much to bear…

Any glitch in that care, any hiccup in the process, though, causes problems of apocalyptic proportions, creating more work…not for our doctors and not for the clusterfuctastrophe of a rat race in quick sand we call our health care system…but for us, the PWD who are just trying to hold on the the high wire act that keeps our lives functioning.  So that we can have jobs and do silly things like shower and hug our kids and feed our cats we suck up the energy we are already lacking and crawl through the hoops.  We drag our tired asses around and play the game and write the letters and get the labs and pay the last dollars…because we have to.  We have to because even though the system and the world is ready to forget us and willing to not see us we are insistent in our desire to exist.  We are audacious in our temerity to take up space in the world of able bodied people and drag ourselves over those hurdles in spite of the condescension of everyone around us who insists that we just have to remain calm and everything will work out OK.

Fuck calm.

These are our lives.

And that is worth expending a little energy.

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