So out of sheer desperation, I emailed my non-MD/DO ASD therapist today and requested a doctor's reference. Actually, I'm not sure that I even know what I'm requesting, only that I am all tapped out of resources, as well as tapped out physically and emotionally. The request kind of spiraled into a blog-esque format, so I figured I'd share, because who doesn't love the struggle of trying to find adequate medical care?
Here it is, in all its unadulterated glory:
Hi. So, because of all the stress I'm under from my job and because of the fact that I have a billion dollars of student debt and only make $31 a day (which is taxed, by the way, which is ludicrous), I basically feel like I'm dying all the time--I constantly feel ill, and everything hurts and everything is terrible and I don't understand how I can be in this much pain and not just die already. Obviously, I do not wish to die; I am too funny to die, and my cats and dog would be super mad at me for dying, and also there are way too many TV shows and movie sequels that I need to see.
Simply put, I cannot live like this much longer, and it is quite frankly astounding that I have even been doing it for this long.
So anyway, I suspect that my current PCP got her medical degree from a box of Cracker Jacks. She is not empathetic, she is condescending, and her office is run by a bunch of pilgrims who do not accept debit cards (not even the flex spending cards, which is what I depend on to be able to see the doctor).
Clearly, I need a new PCP, but it's kind of difficult to do that when you don't have any money. I'm going to ask people in my office for advice on PCPs who are not terrible, but due to the nature of my conditions, it's going to be hard to find someone who does not actively suck as a healthcare professional.
In the meantime, I've scheduled an appointment with a specialist (Rheumatologist) to see if I can get better healthcare--or even just run-of-the-mill, not terrible healthcare.
Last night, I went through the beginning stages of withdrawal from my Tramadol (I try to not take it in the evenings, as it keeps me up at night, and I have a difficult enough time regulating my sleeping patterns--normally I'll just do stretches and take a hot bath or shower to relieve pain at night). Unwittingly, I had not taken any in about 18 hours.
I have never, never, never had this problem when I was taking Percocet. I have never felt sick to my stomach on Percocet, I have never felt chemically dependent upon Percocet, and certainly never went though heroin-like withdrawal on Percocet.
Unfortunately, obtaining a prescription for the medicine that has proven to be effective for my pain management has kinda been like trying to run through lava wearing swimming fins. Ineffective, exhausting, and painful.
I've twice been kicked off of (and been discharged as a patient) pain management plans for reasons related to Autism and, quite frankly, for my inability to understand and play the system.
The first instance was with my PCP of seventeen years. I called in my prescription, and upon arrival, was asked to give a urine sample. The sample itself was not the problem; it was the sign on the door indicating that the practice would no longer accept patients with pain conditions, sleep disorders/disturbances, or attention problems--all of which I had been treated for at one point or another. The anxiety I experienced (compounded by the already terrible day I had) stemmed from the fact that UPMC had taken over their practice, and my insurance through my mother was Vincent's, which meant that unless I wanted to pay double on bills I already couldn't afford, I had to find a new PCP--and if this office could discriminate against people with certain conditions or disabilities, then anyone could, and I'd never be able to get the treatment I needed. All this was swirling around in an already ruffled Autistic brain when, to add insult to injury, I was made to wait for over half an hour to piss in a cup. Fearing that I would have a very public and very embarrassing meltdown, I removed myself from the situation to have a proper meltdown in the comfort of my own home, resolving to come back the next day. As it turns out, it's illegal to do that in Doctorland--they discharged me as a patient because I "could have taken something to cleanse my urine."
First of all, I'm pretty sure there's nothing that can clear urine in 24 hours. Second, I am not sneaky. I have Autism, and I was in an unsafe situation. I attempted to explain the situation, but to no avail. I was discharged after being his patient for seventeen years.
The second time, you're aware of--as you are also aware that the staff are a bunch of goons who can't keep their dates or facts straight. I was prescribed Perc and Tramadol, and I was having a lot of success weaning off of prescription use at all because I was swimming and going to the gym because I had pain medication to fall back on (basically, my body is arbitrary, and there are days where exercise, even yoga, will cause me intense amounts of pain for no reason). I DID AS I WAS DIRECTED BY MY DOCTOR. PERC FOR VERY PAINFUL DAYS, TRAMADOL FOR LESS PAINFUL DAYS. Then the nurse negates that, says I'm supposed to take it three times every day regardless (WHICH IS HOW AND WHY PEOPLE GET ADDICTED).
**[EDIT]: So, you are not my therapist, and you don't know what happened. Basically, I had to take another urine test, which I took after nearly a two week period of only taking Tramadol (I was swimming every day and really starting to focus on non-narcotic healing methods). The only reason I took it then (and unwittingly so) was because I had forgotten about the lab work in the first place, because I have really terrible executive functioning. Ironically, it was me trying to NOT get kicked off that got me kicked off. After the results came in and I was notified that I was no longer going to be receiving narcotic treatment, I called twice on my own behalf, and my therapist joined me for a third conference call, all of which was through an intermediary--my actual doctor didn't speak with me at all. I scheduled an appointment to see him, and was made to wait an entire HOUR while I rocked myself back and forth, desperately trying to keep my cool. After the one hour mark (and two hours' worth of work time wasted, I might add), I walked out of the door and the perky nurse's aid piped up with, "He should be right in, sweetie!" The very same sentence I'd heard an hour earlier! Later that week I requested my medical records, and discharged myself from the practice. He is actually a really good doctor, so not only did it hurt my feelings when this happened, but I lost a competent medical professional who actually listened to my concerns and input about my health (up to that point, at least). He was also an Allegheny grad.
So because of miscommunication based on Autism and medical professionals' incompetence, I have been kicked off the one thing that has helped me to mange my pain.
I'm sure I don't have to tell you how supremely unfair, problematic and ableist that is.
I'm not stupid. I understand the risk of long-term opiate use. I understand that as a daughter of an alcoholic, I have a genetic predisposition to addiction. I understand tolerance, and I understand the reticence of the medical community to prescribe it to someone with my diagnosis, particularly because of my age.
Opiates should not be a "go to" drug. All other avenues should be exhausted--anti inflammatories, muscle relaxers (both of which I take, both of which are ineffective), even SSRIs and anti depressants, and recently they've had successes with diabetic neuropathy (gabapentin, also ineffective).
However, with my ASD diagnosis, it should be taken into consideration that my brain is fundamentally different from an NT, and that I've already been run through the gambit of all these mood stabilizers and it really wrecks my brain. A doctor's opinion should, of course, be respected, but in all fairness, I LIVE in this body, and I should be allowed, within reason, to make decisions regarding what chemicals be put into it.
My ASD actually works against me in that respect--always noted in my files is my "flat affect" (seriously, all the time), so when I say I'm at a pain level of 8 or 9, I don't LOOK like it, so they assume I'm lying.
I have been living in pain ever since I can remember. Having shooting pains up and down my legs when I sit too long in one position is all I've ever known. Can you imagine how horrible it would be to be around someone who is constantly complaining about every ache and pain? I don't have to imagine--I used to be that person. I was either ignored or outright dismissed, because what twelve year old has the same kind of pain that an 80-year-old arthritic does? I have come to learn that it doesn't matter how much pain I'm in, it is never taken seriously because it happens in my neurotransmitters, in the very fiber(s) of my being. For all I know, this is how I will live my life until I die. My brain is not only fundamentally different from most others, it has also been heavily traumatized, particularly in my early childhood. I probably learned fear before most kids learned how to walk.
Basically, I never had a chance.
The best I can hope for is management, and I have made peace with that. I will always have bad days, but those serve to remind me how incredibly special the days when I'm pain free are. I will have to remain active with yoga, swimming, and low-impact exercises, as well as maintain a food lifestyle that nourishes my body and helps to regulate it.
What I need is not opiates. What I need are resources--resources that at my current income level, I do not have access to: specialized care in pain management homeopathic remedies, massage, acupuncture, chiropractic care, yoga/swimming/exercise facilities, etc.
I learned a long time ago that doctors don't know it all; in fact, it was the most disillusioning thing about being an adult. I have had to take an active role in my self care, but it's to the point where I'm out of the energy and resources necessary to sustain my health, and I need help.
I'm sorry that this was a million years long, but I really don't know where else to turn. I strongly believe that there is a reason behind my struggles, and that I will someday use these experiences to help someone else, or even to be a public advocate for the health and rights of chronic pain sufferers. However, if I'm constantly wishing I would get run over by a bus for some decent pain management, I may not make it long enough to fulfill my dreams of authorship and advocacy.
I need help, I need help, I need help
**[FURTHER EDIT]: So she wrote back, and was like, "Not sure how to respond to this..."
To which I was all, "Fair point."
So I more clearly delineated what I thought I needed from her, which isn't so much a reference to a doctor, so much as a note to a potential dispenser of much-needed medication. I'll share that here, and end on that note, because even though about half my psychic energy is expended on wishing to be hit by public transportation, I think it's important to be cautiously optimistic, and definitely irreverent, because if I can't find hope or humor in any of my statistically improbable situations, then why am I even here?
Dear Medical "Professional":
Sam is not lying, she has Autism and that's just what her face looks like, quit being an ableist douche wheel and give her pain meds so that she doesn't actively wish that she would get hit by a bus.