The Reason I’m Writing A Book


I’m not a CRPS expert, I’ve learned a lot though in the last 6 months or so.  I know no one has ever heard of it.

I know suicide rates among CRPS sufferers is high.  And I understand better than most why.  It’s probably not the medications, although all 3 – Cymbalta, Lyrica, and Neurontin do carry that risk.  It’s the pain.  It’s the being lumped into a into a category of drug seekers.  We aren’t.  We just don’t have anything for our pain.  God forbid you not handle opiates or not get relief from them or turn out to be allergic to hemp and all its derivatives like me.  It’s the stigma.  It’s the loss of quality of life.  It’s the loss of ability to smile.  I rarely smile anymore and I know it.

Even without risk factors for heart disease, heart attacks and strokes seem to be common among CRPS patients.  Without the opiates or some other pain medication, our blood pressure rises to dangerous levels and stays there.

The injections vary from mediocre to worthless.  For my lower legs, the spinal injections helped, but for my hip the injection lasted 3 days and I wasn’t pain free for those 3 days, it was just tolerable.

It’s the lying.  We are constantly lying to ourselves our family our friends.  I’m fine means my pain is excruciating, but I don’t want to talk about it.  Hell we even have to lie to our doctors.  We have to pretend to be excited to try their alternative therapies even though most of us are aware they don’t work.

It’s the money.  God it’s expensive to have a chronic illness or pain syndrome.

It’s days like yesterday.  I thought I was seeing an expert.  If he had tried to scratch his brain, he probably would have scratched his ass instead.  I was so disappointed when I got home.  It’s demoralizing to realize that a doctor isn’t seeing a patient in pain just a drug addict looking for a fix.

It’s the judgement.  Do you really need the pain pills?  Yes.  I really do.  I can’t waste a single Vicodin to get high.  There’s never going to be a risk of me overdosing, unless I really do cut off my leg.  There’s never going to be a risk of me using a pain pill to get high and not just because I don’t like the feeling but because in a week, that one pain pill might mean the difference between being able to see friends which I rarely do anymore and being stuck at home watching reruns of Lucifer.  I don’t mind watching reruns of Lucifer but some days I would most definitely rather go out and see friends.

It’s the depression.  Not just because I’m home but because I hurt all the time.  Nothing makes me pain free, nothing.  Not injections, not pain pills, nothing.  There are nights the pain is so bad, I don’t sleep and I really like to sleep.  There are days I’d love to go out and do something, but I can’t because if I do, I’ll use a pain pill I might need later when I have to go grocery shopping.  It’s not being able to work.  It’s not being able to relate to anyone anymore.  I’m not a crier, but I have cried more in the last handful of months than I ever thought I could.  Mostly because of pain.

And after seeing the theoretical expert yesterday, it’s thoughts of suicide by non-treatment.  I could just stop all the meds, stop the Lyrica, I have organ involvement, without the Lyrica my pain increases, but so does the spread.  It probably wouldn’t take me but six months to a year to start having kidney or liver problems.  Or if I got lucky, I’d have a heart attack because my pain would get that high, a massive one, and that would kill me before I had to deal with kidney failure.

It’s knowing that no matter what, I will never be pain free again.  I will wake up every day for the rest of my life and feel like I have been run over by a car.  My spine is going to feel crushed.  My legs, hands, arms, they are going to feel crushed, my hips are going to feel like that was the point of impact before they drove over me.  Because that is what I feel like every day.

It’s knowing that this is fatal.  It’s knowing that even with treatment this could spread to another organ, a more vital one.  It’s knowing that my life expectancy has been shortened more than smoking a cigarette ever could have done.  And for the rest of my time, I will deal with the pain and doctors that treat me like a junkie instead of a patient.  There are going to be more doctors like the one I saw yesterday in my future.

There is going to be the internal struggle of do I have the energy and pain medication to do a load of laundry?  Or load the dishwasher?  Or be able to get up and let my dogs outside?  Or the focus to write today, for an hour, maybe two, if I can get comfortable in my own skin.

It’s knowing that it’s not just me affected, but everyone in my life.  My husband suffers because I suffer and not because he loves me that much but because this has drastically altered and changed his life just like it has mine.  It’s drastically altered my dogs’ life, how unfair to them.

It’s the hopelessness.  I want to be functional.  I may never drive a car again, fine.  I want to be able to work, I want to be able to go to darts and at least socialize.  I want to be able to go out with friends to dinner without worrying about my pain increasing because the chairs or booths are uncomfortable.

There’s a new thing called Pain Acceptance that patients are supposed to start practicing.  It’s the most ridiculous thing on the planet.  Isn’t it the doctor’s cred to do no harm?  If they can help aren’t they obligated to do so?  That’s gotten lost lately.  Yet as suicide rates for chronic pain patients increase and heroin addiction rises, maybe there’s a cause and effect at play.

Other CRPS patients are functional.  I could be too.  But nobody is brave enough to write me a prescription for 90 percocet or 120 percocet because my father is a recovering alcoholic, but opiate addiction among chronic pain patients like me are low.  Overdoses by chronic pain patients who do not have cancer are nearly unheard of.  They happen but they are more likely to happen when Fentanyl patches are used than things like percocet.

Holistic medicine doesn’t work for me because I’m allergic to just about everything on the planet.  It does work for some people though.  It works better than opiates and Lyrica, but it’s not an option for me because I’m allergic to most of it.  That leaves me with opiates and Lyrica and chronic pain because to most doctors, I’m just a drug seeker, because the last two years we have beaten it into the brains of every American that anyone who needs a pain pill to function has to be an addict which is sadly not the case.  Most of us just want to survive.

2 thoughts on “The Reason I’m Writing A Book

  1. My mother had degenerative joint disease and had a wonderful pain Doctor, he prescribed what she needed to live life and not just exist. So I know there are good Doctors out there and will keep praying you find a Howard Weiss in your life. He did not care if my mother was addicted as long as she did not abuse. He had. My mom on fentanyl patches , cymbalta, and Norco with morphine on back of the pain got ahead of her. So push on until you find the right Doctor, and do not settle for less

    Liked by 1 person

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