Spilled Milk and Combat Boots


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 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.


Eight Days and So Many Cars

Because I just started writing, I have to preface a bunch of stuff for a while. One day I think I will be able to just get on here and write without all the background intel…or not. I have no idea really.

It has been eight days since my first blog post. Even then I wasn’t sure what kind of writing schedule I would put myself on because too much happens in a single day to save it all for a weekly post. It would make each post a novel. Writing everyday is preferable, but then there’s spell check and all the things that make just saying what I want more of a technical process that is a time suck and a buzzkill. So I still don’t know and getting closer to deciding it doesn’t matter at all and doesn’t even make it on my real things to think about list. I just get excited if I can find two minutes to even try.

On Christmas Eve my mom and I were in a car accident. It was 21 days ago and feels like months.

I was three hours away, back at HOME, not in this “vortex of strange” town where I live NOW – to visit my mom, son and aunt. Christmas morning an ambulance took us both from the hotel to the hospital. We waited the night because neither one of us knew what was hurting the most and basically couldn’t even think. We didn’t know what was caused by the slamming of brakes and seat belts and the flying car which turned left right in front of us or the horrible adrenaline which is one of dystonia‘s evil adversaries coursing furiously through our muscles. I had to be hooked up to the good drugs before I could even get x-rays,IMG_3446 it took 6 hours and getting caught making the picture on the left before being released to go back to “my hotel”. I even have “friends” there now – another story, I am back(b)logged with stories, they will just have to come out when they have their turn. My Mom was okay physically, but car accidents never leave someone “okay” really.

The next day I had to get a rental car. It felt and looked like a spaceship inside, blue lit dashboard, voice commanded or touch screen optional controls, too short, too fast, too new and too plain scary.  I didn’t like it one bit, but also didn’t know I’d end up driving it for 16 days. I had to go back “home”…Christmas was over. I have endured every single day since, Insurance World. Eleven agents (so far) and I am treating them like I do doctors and neurologists. Double checking them, getting copies of every thing they say, making folders with folders….I’m trained to cover myself and know exactly what everyone is saying and doing and have it on paper. The Medical part hasn’t even started yet.

I have waited too long to write about any of this, so my whole point of writing about details is lost on this second blog. Now I know and I won’t let it happen again. Makes for bad story telling and the weirdness escapes. The weirdness can’t escape because that’s the whole reason I am even doing this…as so boldly introduced in Blog #1. My apologies but must proceed. It’s not like I will never be in “my hotel” again and describe in detail the man who lives there with his poodle.

Three days after returning to my new home of Nowhere, NC, i found out my car was totaled. I had a special relationship going on with My Car. My whole life I have picked bad cars with one exception. My first car was a 1979 Ford LTD, black, and I could fit 9 other high school friends in it but never could see over the steering wheel. I was popular for my hearse car but SO wasn’t my “style” and traded the gift that I was never grateful for (yeah that’s another story too…I will be writing a LONG time from now on) on a gold Peugeot sedan. I left home at 16 for art school and I had to go in classy. It blew up in the middle of downtown Baltimore 2 years later. I think I got some money for the tires. The Saab turbo blew its radiator next to the Charlotte Colosseum. In between those two, I bought a brand new Mitsubishi Mighty Max pick up, which was the only smart decision I ever made and why the Saab ruined any thoughts anyone had that I had matured in any way. That truck lasted through 4 years of college, Baltimore and Chicago break-ins and one marriage. I gave it to him…The used Volkswagon Beetle was returned for a full refund after a month and two more brand new cars proceeded. The “final-adult-for-real” 8-5 hard-working mother SUV was repo’d after less than a year, when December 26, 2008, dystonia took my last day of working in the real world away.

It took becoming “officially disabled” after three attempts and getting the Social Security Disability Income “lump sum” before I REALLY at 40 years old, spent months finding the perfect car to last the rest of my life and had the approval of everyone in my life. I had it ready to live in. It was made for camping, dogs and sleeping (Amazon even sells air mattresses just to fit THIS car and it did!) wheel chairs, power chairs…This car was my world. I’d moved 9 times in 13 years at this point and I made THIS car the home I would never have to leave or beg for the security deposit. I had everything i needed to survive for days…I’d spent over a year collecting things to make it more than what I even thought “HOME” meant. (I have re-painted, renovated, restored and made every place I ever rented to be a palace for my son and myself, but THIS CAR was a whole different thing.) I had NO idea I would never see it again when it was towed away on Christmas Eve. I had NO idea that when the wrecker guy said “Take what you need out of the car”, that it should’ve been EVERYTHING, not just my dog and a bag of sausage I got an hour before as a present. Priorities are strange when in shock.

I have to fast forward to catch up to now. I don’t want to fast forward but paragraph 2 explains why….

Eight days….

I have no way of writing about the past eight days. Like I said, this second blog is a rip-off for us all. I get it. Eight days have been one very long one day. I have to steal time to write at all. Steal time between endless phone calls, the 11 agents, emails, texts, the people I help support and support me…steal time in between hours of increasing muscle spasms, panic attacks, and life that goes on endlessly seeming to dictate what’s left to be “mine”. In eight days I found out anything with a USB cable was stolen from MY car. The remaining contents of MY car had to be packed and shipped to me before it was taken away to an auction house. MY car arrived 2 days ago in that box. In eight days, I had to mail the title with a notarized limited power of attorney to be paid in full for MY car. That meant still driving scared through town, cringing at every intersection, to the bank and the post office, ALL with their own stories I wanted to tell in full detail of undeniable weirdness. That included me getting in someone elsIMG_3522e’s car by mistake just because it was barely the same color as the rental, locking the keys and my dog in the rental, walking to the fire department to get it unlocked, website after website of used cars and with a deadline of seven days to find and buy my next car to last again, in my mind, the rest of my life.

Another HOME, in Seven.Whole.Days. I have had my “new” car for 3 entire days now. Six hours at the car dealership doesn’t count. The dealership itself is a WHOLE story. Hell in a giant metal box full of small fabric covered boxes with identical looking men inside each gray box. Showroom lights glaring into my worn out eyes suffering with blepharospasm, ( I know…WHAT?!?…I just call it “blepho” – like “bleh-fo”…means dystonia of the eyes. it’s great, I’ll tell you about it sometime. Promise) my neck and shoulders burning in searing hard spasm and I was WAY past my bewitching hour of 4pm, when I make the steady decline into diurnal dystoniaville. I didn’t even test drive the thing. I just wanted to get OUT.

It’s the same make and model but born a year later and green like a Carribean Cruise drink on special…not a chance on this Natural Green Earth that I will accidentally get into someone else’s car again. Night before last I started unpacking the box, it looked like “Car Christmas” in the living room floor, which of course is ironic. I was dreading it, expecting to realize much more had been stolen but didn’t other than what I already knew, the Bluetooth connector I use with my phone to hear the GPS lady through the speakers. I bet the woman who packed my car stuff got a good idea about me…the essential oils, blepharospasm “kit”, lots of pennies and about a hundred elastic pony tail bands and old prescription bags. I finally have all my pens I couldn’t find.  BUT most importantly, I have all the things back that made MY car so special.

That same night I re-ordered the Bluetooth connector and by 2am (insomnia and Amazon are a bad mix, especially with a gift card from Christmas) I decided my NEW car needed a compass NOT on my phone, a magnesium fire starter, a chainsaw link chain, MRE food bars and sterile water packets. I already had a first aid kit, emergency heat blankets and body warmers, Sog tool, multi battery charger, jump kits, an air pump, flashlights, air mattress, a white sheet, sleeping bag, gloves, bungee cords and more..(I failed to mention earlier that growing up with a dad who served and hanging out in Army Navy stores forever rubbed off a bit, in addition to earlier reasons given) and it ALL fits in ONE bag. All of these things cost next to nothing. To be able to easily start a camp fire in seconds for $3.49 is my kind of excitement. No firearms, so my stuff is just enough to make me look paranoid or very prepared.

Today the sun came out for the first time in forever. I felt like I was on another planet, it was blinding and I kept expecting to see another moon or giant globe on the horizon or through the trees. I was finally able to go look at HOW green my new car is…I changed the tag to the one from “the box” and slowly began adding the things back, reorganized, re-wrapped sleeping bag and air mattress, just a few things…I started to notice how clean and ready it was for me. It didn’t care how green it is, it glowed in the sunlight like it had no self-image issues at all. It made me laugh. I was excited to take a picture of it to show my friends in “The Group”, my other “HOME” that isn’t a house. They have heard about ALL this STUFF since the night it began, Christmas Eve, 2014, two days shy of my 6th year anniversary of my ever changing, endless journey, every day survival, hope for better days, onset of generalized dystonia. Here is my car, this sunny day 🙂IMG_3528

The Weirdness Can’t Escape Now

Starting a blog about nothing at 42 pretty much screams “I don’t have a therapist”.  I actually forgot the last one’s name, even while seeing him, because I referred to him as “The Man with One Sweater” for so long. The real reason is that I have an excessive amount of thoughts about just about everything. Have you ever tried to get a boyfriend or husband (or two) to sit down and do the “Hey, come look at all my journals for 20 years and my doodles from art school” for that special bonding moment? They would rather be DEAD. NO ONE likes reading or looking at other people’s journals. Or hearing about that crazy dream had the night before or about how intense a yoga class I had just taught turned out to be. ALL of the above, including the shrink part, produce that glazed over stare like they have been held mentally hostage until the time is up or they are deep in a plea  “omgidon’tcarehelpmegetawaybeforeifreakoutIneedabeer”.

My style of speaking, writing, and thinking at the velocity, mass and the ability to make 360’s out of it all is a special skill which people kind of like, maybe enjoy (if I am writing) or absolutely dread if it’s in the verbal form. It can also induce thoughts to find duct tape, a ball gag or a big fruit as fast as possible.

I have always liked to write. It was encouraged from grade school through college to write and draw at the same time, even though I didn’t like to be “encouraged”. That word also meant piano lessons, dancing, soccer, space camp and insect displays. Actually, I think I was “encouraged” to do everything I could possibly do (legal things by teachers and parents of course, anything illegal I handled myself). I write everyday but not in ragged journals with cool doodles and elaborate schematics for the bazillions of things to make or think I could make and not with a pen that has to be perfect anymore. Shit…there goes my phone alarm to take my meds. I hate that alarm…

Ok. Yeah….So, i write all the time, online but not publicly and I am going on my third year now. I am quite aware everything I have written so far only emphasizes the first sentence. I write in a support group for people who have neuromuscular disorders. It’s what I do and it’s what I live with everyday. I write for the other people in “there” and for myself in “there”. I have had to cultivate different voices as I am the main administrator for this group. I have dystonia. Six years now, and I know as I type this, “what the hell is dystonia” is the question if you haven’t glazed over by now. I don’t want to explain what it is right now. I figure if I keep doing this, you’ll end up knowing more about it than most humans alive at the moment. I do that in other places – advocate, explain, give away stickers…I just want a place to rattle off about the inexplicable craziness of every thing. I type at night to no one to help me fall asleep but sometimes I have thoughts that might mean something to somebody out here and then classic question plagues me to death. “Is this really just for me, art for art’s sake or is this self-centered activity (not selfish) pointless unless read?” My ways of expression have had to change as I have and since I’m not in art galleries I have come back to my default. 

The only thing I need to write regarding “it” in this first blog I never thought I would “do” is that I have Loggorhea (verbal and inside my brain thought diarrhea). It is a fabulous side effect from a medication I was not only allergic to but also never needed. And it’s real.  Because I am always super lucky, the rare “can cause excessive speech” in the fine print of this drug, took a part of my brain already active enough – the speech part – and sent it into hyperouttacontrolsuperspace. I was given this drug in 2011 and it’s only gift to me was this love/hate relationship of hearing my voice never end. Everyone around me thought it was awesome. I lie. It made people scatter like roaches and i’m still pissed off about it all. The Man with One Sweater never stood a chance.

So now I am guessing, I have given enough information at this point to explain the name chosen for this “isn’t it too late to start a blog because I got on this media train after everyone and their mother already left the station and no one reads them unless they are really cool” new thing for me to do. I am not sure what kind of format I want to do this in because I write everyday and I don’t think I want to post a blog every day, so maybe I will post a week’s worth at a time on Sundays or maybe I’ll decide I don’t want any schedule at all. My life is already pretty much dictated by derailed brain signals and the weirdness of the world itself, in which I often feel as though I am in the central station. How this evolves will definitely wind up being a pure representation of that truth no matter what I do anyway…the details of events and the thoughts with their bags packed and ready to go on the simultaneous trip always have their tickets ready. I’m prepared that way because if not, the real weirdness escapes and that’s just not right. My introduction is now over but nothing else is, it never ends.IMG_3493