All the phone calls I am having to make right now are ruining my story writing ability plus changing what I’d write about my 7 hour day yesterday. Red tape bureaucratic BS is making me insane.
In fact, I WAS offered the chance to go to a psyche ward by my pain manager….never say “I can’t cope with my pain level”. I have learned everything NOT to say from her after 3 1/2 years.
Had to go to my Pain Manager, it was a planned appointment before the car accident. I go there every 3 months, but this was a “special” visit. Ever since I figured out what KIND of dystonia I have and got on the right “medication” for it – dopamine….My spine and legs, after 5 years of being twisted, “went straight”….I have Dopa-Responsive Dystonia or DRD for short. Dopamine is an essential neurotransmitter, needed to make bodies move and act like they are “supposed” too. I’m apparently missing it. I was diagnosed with dystonia in 2009, but I am the one who researched my brains out until I got 2+2 together. Technically, it’s not my job to have to diagnose myself or figure out what is “wrong” with me, but…after 60 doctors, loads of “specialists”, being told it’s all in my head (pretty common thing unfortunately…) sometimes being the type of person I am has it’s advantages. Particularly the fact that I can walk now, after being told in 2013 I never would. But….5 years of twisted, has some permanent downsides, especially for spines. I have this dystonia crap head to toe, but my legs were really the main issue for since the beginning. “IT” started in my left leg before crawling itself upwards to my eyeballs. ANYWAY, IF I take the dopamine replacement drugs on time and regularly, my legs stay straight and so does my spine, but my upper back decided to protest this change and I have some discs that prefer to stay to the right and NOW, my world is revolving around my right shoulder and everything in a 10″ radius of my shoulder blade. It sucks and the regular toxin injections I get every 3 months from my neuro, called Dysport, (kinda like Botox – not the Joan Rivers kind – the medicinal kind but a little different….one less protein molecule but I’m not here to get all technical right now) for cervical dystonia aren’t helping one bit. No neurosurgeon in the world would consider messing with me, and the car accident didn’t help AT ALL. Car accidents and insurance agents make STRESS. STRESS makes ALL this dystonia stuff WORSE. Its called “dyskinensia”….if you can do Latin word descrambling, that word explains itself. Wrong muscle action…or any similar translations works.
I never slept, I had to leave at 7am which is when I usually fall asleep. One of the side effects of the dopamine medicine I take is “sleeplessness”. YAY. I’ve had WAY WAY worse side-effects, but eventually sleeplessness becomes not cool at all…
I forgot my Axon Optics glasses, which is probably the cause for the whole day turning out like it did.
As soon as I got there, I was told I couldn’t be seen because of my Medicaid card being wrong. It has the wrong Network printed on it. A place I don’t even go to. (That’s because I moved 4 months ago from another county and nothing has gone right since) Well, I could be seen, but I’d have to pay then appeal the whole thing. I had them call the PCP (Primary Care Physician) listed on my card and “Jackie” confirmed I have been trying to be seen there for 3 months. They were too busy to ever accept me and I was told that this week. Jackie gave me a NEW place to try, but I can only do so much in a couple of days….She gave the authorization for me to be seen yesterday, just because she happens to be helpful in my situation and sort of was part of the mess anyway.
That and the drive itself (2 1/2 hours) already had me at a 7 -8 pain level which is dangerous for me because that’s when I tend to cry as soon as any Dr. comes in the room. And THIS dr. is one I KNOW I can’t cry around. EVER.
I’d waited desperately for this appointment and had 20 min to ask/convince her to help my upper back somehow. I was going to ask for a cortisone shot or something…Plus the car accident happened in between my last appointment with her and I had to discuss that too.
I’m about 5 minutes into my rehearsed but not working out plan and she has a way of throwing me WAY off.
I was talking 100 mph, she refused to look at any of my pictures and said cortisone made no sense if I get Dysport. I said, “I don’t know, it was just an idea, you tell me what to do”.
2 nurses come barging in saying “104”. She says “ok”. Meantime, she’s looking at the wrong MRI report and I tell her, which pissed her off. That matters.
Nurses come in again. “104 NOW! HE DRANK MILK!”
She barks “I’ll be there in a minute!”
Nurses: “He’s coming off the table!”
I’m like WTF, REALLY????
Every time I go there I NEVER get MY time or can even speak, she hates my personality and I am not fond of hers either. Usually I just get my narcotic scripts and leave, for the last year I just see her PA because there wasn’t a need to talk to her anymore and we avoid each other. It’s no secret in that office.
So this man who drank milk, had some kind of “fit” because of it and whatever procedure he’d had “done”. Out of the WHOLE place, SHE had to leave and strap the man down to his table.
I start sobbing. I’m crying over a man and “spilled milk” ruining everything I had to talk about. Like my last scripts not being mailed to my pharmacy either…. My pain level gets to the 9 level and the nurses can hear me in hysterics. At the same time, my tiny bit of normal brain is laughing somewhere about this man and milk and I realize I am evil.
Dr. comes back, I immediately try to contain myself and that’s when I said, “I can’t cope with my pain anymore” and I get the oh-so-polite offer for a psyche ward or EMS, it’s up to me, whatever I’d “like”. STARE DOWN…..I win.
She says no surgeon will touch me and I need a cervical epidural. I said cervical or thoracic? She slams my file shut and leaves. A minute later the first nurse comes back in and declares my pharmacy is rude and incompetent. I told her I know, I had already said that a hundred times. I live in NOWHERE. She gives me my usual scripts and tells me to check out and make my appointment for the epidural.
So blah, blah, blah, more stuff ensues but whatever, this isn’t as funny as I intended to write it…it’s my THIRD blog, so don’t blame me yet, I have a million varieties of stories but this one just happens to be one of my “Dr. Appointment Stories” I like to write in my support group, except I am learning how to write it for people who most likely (maybe?) have no idea what a life centered around doctor appointments and agencies is like. I don’t even know if “normal” people WANT to know, but I can tell you one thing…IT can happen to anyone at any time. I used to be one of those people who never knew or thought about being “disabled”. Not to jinx anyone….just sayin’….
I’ve got the freakin’ dog with me too in the car. By this time I couldn’t get my coat on, could barely walk her and couldn’t drive. So I sat in the parking lot. I got a call from the “new” “new” GP, because Jackie expedited the REAL new one and I made my first appointment. Something went right!!! I call Medicaid right away to get my card changed and they tell me the new place isn’t in my Network.
I LOSE IT.
I asked my phone where the nearest e-cig store was…spent tons of money I don’t have in there on a new one because mine broke and I use it in Dr. offices. Truth. and ER’s….nicotine is “poor man’s dopamine”…It’s a fact. So is chocolate. (I was going to attempt quitting on New Year’s, – not the chocolate, of course, but that was before Christmas…you know smokers and excuses and justifications. I’m not gonna lie. It is what it is…)
I always buy shit after bad appointments. Always. I think it’s a girl thing in general, to go buy happiness after some crap happens….Then I see an Army Navy store. A halo glows around the sign for me.
I needed to cut the stupid white “I went to the Dr. bracelet” off and couldn’t get my “survival” bag open that’s in my car – all THAT is in my 2nd blog post BTW – The Army Navy Store people are watching me like I am totally psychotic. I am limping around with a white bracelet, trying on fake combat boots (they have wide toe boxes, which accommodate dystonic toes and cost less than orthotic ugly things) and testing knives out that I can open with one hand…..It was hot as hell in there and I start stripping off clothes, obviously not “right” because I can’t use one arm.
I left with a pair of 6R black and green boots made in China and a knife that needs sharpening.
I also left my black long hair sheep fur neck wrap from Brussels laying on their floor. It was really hard to try on combat boots wearing a hot 8 million dollar European neck piece my ex-mother in law (the first one) bought for me on a shopping day….(maybe she gave it to me, I can’t remember, I really don’t think she will ever see this, but just in case, I better say that I still wear it).
I called the store when I got home.
This morning I have called both “new” PCP’s. I’m trying to get proof the NEW place IS in my Network (computer says no but Jackie says yes).
I called the pain manager to find out if I needed a driver for the epidural. Yes. (I have no one) AND…..NO MILK before the procedure. I almost blew coffee out my nose when she said that, with other instructions.
5 minutes later the Pain Manager place calls back and says that the prescriptions mailed to the pharmacy here last month were returned to their office in the mail today. That is making me switch pharmacies this week.
I REALLY should’ve said YES to the offer to go to the psyche ward. I had my chance and I blew it.