“WHAT?!?” – A Series of Surreal, Funny and Real Moments when Dystonia Awareness Would Have Been NICE.

The main point of my blog here is to highlight the weirdness of my own life. I find it to be a never ending day with me scratching my own head, thinking, “WHAT?!?” I am using my blog this month to highlight what other people can’t wrap their minds around.

When it comes to dystonia, it turns out that I am not the only one left, almost daily, with an ultimately dumbfounded realization that dystonia awareness just doesn’t exist like it should. Not “my SHOULD”, the real world “SHOULD”. This is the second year that the dystonia community and our supporters have petitioned the United States government for an official declaration to Make September National Dystonia Awareness Month. This petition requires 100,000 signatures in 30 days. We have 7 days left and just over 10,000 signatures. Over 500,000 people in the United States alone have some form of dystonia. It is no longer “rare”. It is the THIRD most common neuromuscular movement disorder behind Essential Tremor and Parkinson’s Disease. I will NOT bet anyone my HUGE disability check for a month that if you ask your closest gas station attendant if they have heard of Parkinson’s Disease, they will say, “Sure” or “Yeah” or nod affirmatively. I WILL bet my HUGE disability check for a month that if you ask that same person if they know what dystonia is, they will get a deer in the headlights look or some sort of zombie face and be afraid to say, “uhhhh, no?”.

Whether it is the general public, people in positions of help we count on, or our friends, more hurtfully our families (we have to “work” at making that not hurtful) not having an understanding or at LEAST knowing the word, (I want to petition for a name change as well. “Dystonia” is far from catchy…however it is stuck in our heads, literally…I’m digressing. It is “mybloggorhea”, after all. Tangents should be expected by now) the BIGGEST issue as many of us see it, is that the medical community is very, very unaware….and THAT needs to change very, very fast. It does not seem to matter if someone famous has dystonia and puts a link on their website, although appreciated…it’s the normal guy next door who cannot get a proper diagnosis for months or years, or their child goes from “specialist” to “specialist” or someone just sits at home alone in physical and mental pain, not knowing where or how to find help for this debilitating disorder.

My last pathetic blog post was a very hasty call to anyone who follows my blog to PLEASE sign the petition and hear the amazing video produced by an awesome guy I just met named Navpreet. It comes on automatically, so I’m letting you know so it doesn’t scare you AND so you will LISTEN!  (If I could have written recently, you’d know ALL the reasons why it was pathetic…) SO, while I have made links and am AGAIN asking you to sign the petition NOW if you haven’t…here’s one more thing: ask 10 other people to do it too. JUST 10! It takes 26 seconds. I WANT to bet my HUGE disability check that you will get 10 other people to sign it. Hear the doubt? SAD, isn’t it? I don’t want to have ANY doubt!

Most of you know I am the Admin of Neuronauts, a support group for people with neuromuscular disorders. I had just had “one of those days” – you know, hectic, crazy, totally overwhelming and probably made my collarbone point to the sun (in the day, of course….) and I sat down, opened the computer to check in and a “chronic poster”, good friend AND the Secretary of the Dystonia Awareness nonprofit organization, Neuronauts Now….had just written the first post below….I laughed and knew right away I wanted to ask everyone for their craziest, wackiest, funny, bizarre, WHAT?!? story so I could put a collection together portraying the oblivious world we function in everyday. This was in June…WELL….Somehow, funny and wacky (there are still some pretty hilarious moments here) was eclipsed by what our biggest issue is….not being heard or understood by our doctors. THAT is what came to many minds before anything else. I want to show real people this, to HEAR us, what our need for “awareness” really is…and NO, it ISN’T just ME talking this time!

Here are the stories sent to me, when I asked for the moment when all they could do was just stop and think, WHAT?!?

“I left my sister’s class reunion Saturday night because my head started shaking too bad. One of her classmates asked what was wrong. Sister explained Dystonia and that I get Botox injections but they aren’t 100% effective. Classmate said that she gets “hair Botox”. Huh? So, I looked it up and it is a marketing term for a humectant treatment and it doesn’t contain Botox at all. It is sold in vials with syringes for application. Ummm, thanks for understanding and glad you can relate! WHAT?!?” – C.F.

“After I could no longer work, go to school, take care of my toddlers by myself, and had to move away from the central coast of California my father told me that I was only sick when it was convenient for me. My case has been referred to one of the top neurological teams in California at UCLA. It must be because I’m so good at faking this horrible disorder. WHAT?!?” – A.A.

“My mother-in-law was asking me how I was feeling because I have been having a lot of “storms” ( A word dystonia sufferer’s use to describe a sudden acute attack, sometimes resulting in going to the emergency room) recently. At the time I was speaking with her, I was having tremors in my hand. She said to me that she must have what I have. She stretched her arm out in front of me so I could look at her hand. “It shakes too!”, she says. Yes…you definitely have what I have because your hand “shakes”. I am glad you can understand what I go through when I have my painful storms because your hand “shakes” 😉 and I’m glad I’m contagious. But sadly enough, this isn’t the only person who has said this to me. WHAT?!?” – C. H.

“I went to a neurologist with my head down to my shoulder and a droopy face. He took xrays and an MRI. He brought me into the office and said, “Everything came back normal. There’s nothing wrong with you. You should hold your head straighter and your face will fix itself. If it doesn’t fix right away, don’t worry it’s probably just a virus and it will go away in a few weeks.”
Funny… it’s 4 years later and I still have that damn virus! WHAT?!?” – M.K.

“At an IEP meeting for our son, to discuss him returning back to school (he was on home hospital schooling) the school nurse said it was probably best for him to return when he had better control. Both of us couldn’t believe she said that, like he had diabetes or something he could actually control. We were so shocked. This came from the lady who is supposed to help take care of our son while he is at school. WHAT?!?”  – J.C.

“Come to my essential oils class I have a healing for your tremors”. “WHAT”? No, I thank you so much but your essential oils class is not going to heal my dystonia. Or “You just need to relax, your fine.” WHAT?!? You don’t know what dystonia is? Jacked up CNS (central nervous system) – look it up if you really care and are my friend. Chronic is chronic, gluten free, paleo diet, oils, and acupuncture may help but they will not take it away. Sometimes I lose patience being the educator on my condition which is responded to sometimes with skepticism. I just want a f*@king hug – its called comfort.” – A.S.

“Shortly after my husband died, while visiting my dad and his wife, we were talking about Earle and some of the “situations ” that had sometimes resulted from unexpected spasms, movements, etc. My dad had the ability to yell at Earle if a spasm had just started and many times it would kind of shock him out of certain types of movement. My dad’s wife, who had known Earle for about 8 years said,”You know, I looked up dystonia and that’s a real disease. I thought he was always faking it.” WHAT?!? – D.W.

“The most upsetting responses I’ve had to sharing with others that I have Cervical Dystonia, is that in a few instances, people have clearly been trying to hide a smile. WHAT?!? They can see my head is shaking – how on earth could they find this funny? I say very little about having dystonia to others, and will give a few words of explanation only when my head is very bad, and I’m especially self-conscious about it. This reaction has made me more cautious still.”  – J.F.

“Well, for the most part, people have looked confused and asked me about it so that they could better understand it (dystonia). The only trouble I had was my mum. She kept thinking that MORE EXERCISE would help. Um, NO!!! Exercise triggers mine (symptoms) like mad. Took me 6 months of flipping out on her for never listening to what I was telling her before she finally asked me, “Why do you always get mad and flip out?” Like, SERIOUSLY?! “Um, how about because you’re not LISTENING to what I’m telling you?!?”
I’ve had someone tell me that acupuncture will cure me. I’ve had someone tell me that exercise and a balanced diet will cure me. But for the most part, everyone else has been really supportive. When the weather gets bad, I get a few texts checking up on me, which usually brings me to happy tears.
Funny story though: I have the no-no CD (cervical dystonia) tremor (in which case the head shakes side to side) and was waiting for the bus early on in my diagnosis, so well before the Levocarb. (Carbidopa/Levodopa, a dopamine agonist for Dopa Responsive Dystonia – DRD) So, there I am, standing at the bus stop, waiting, head shaking back n forth. Oh, here comes the bus! I get my bus pass ready to board.
I look up, driver looking at me as she approaches, points to steering wheel and shakes her head, mouthing “No?” And goes to continue on without stopping. I throw my hand up to signal her to stop. Poor driver felt so bad when she realised I couldn’t stop the tremors!
Another story. Waiting for the out of town bus driver to come back from bathroom break with my neck tremoring, she approaches, looks at me and asks, “Do you have a problem?!”, in a real snotty tone. I looked straight at her and said, “Yeah, it’s a neuromuscular disorder that causes uncontrollable tremors and contractures. Do YOU have a problem??” WHAT?!? She looked like she wished she could crawl under the bus while it was in DRIVE!” – T.G.

“Before I was diagnosed with dystonia, or even knew what dystonia was….I went to a neurologist at a local health center. I told him that my neck that was pulling to the left, I was in pain, and my head was beginning to shake. He examined me, and then laughed and said “You shake like an old person!” WHAT?!? I was only
40 years old at the time! I was mis-diagnosed by this uninformed and insensitive neurologist. I left his office and had a good cry in the parking lot. Soon after this humiliating experience, I met a woman at work. She told me
that she noticed my symptoms and thought I had Dystonia, as she also had dystonia. She explained what dystonia was and gave me the name of her Dr. at the USC Movement Disorder Clinic. I made an appointment with this Dr. (neurologist)
and was diagnosed with dystonia (specifically spasmodic torticollis – cervical dystonia) the same day. What a blessing this woman was!
The lesson I learned is to tell others about my dystonia, I might help someone who is suffering. x” – L.R.

“I have Meige’s Syndrome. (A form of dystonia which affects the eye, face and mouth muscles) An oral surgeon here told me, “There is nothing we can do for you. Go to a sporting goods store and buy a football mouth guard to protect your tongue.” WHAT?!? – J.G.

“I swear I’ve FINALLY heard the dumbest thing EVER today.
I’ve been waiting 3 days for a new prescription. I called the pharmacist a couple of hours ago and he said, “Oh yeah, we got that fax from your neurologist three days ago but we don’t have the drug. Do you want me to call around to find it ?”
HE asked ME that! Isn’t that their JOB?? WHAT?!?
I can’t even write what went through my head as I sit here hurting in dopamine needing limbo. It’s filled with lots of dirty words.” – L.R.

“While talking to my neurologist after diagnosing myself with Dopa Responsive Dystonia a year and half ago, then Hashimoto’s Disease a few months ago because my stomach got huge, I went through a wild researching spree to write about neurotransmitters involved in movement disorders and autoimmune diseases and he declares without hesitation, “I don’t remember what the neurotransmitters do.” WHAT?!? You HAVE to! He just laughed.” – L.R.

“While applying for Disability, I was turned down the first time because I filled out all the forms myself. They sent a letter back saying that if I could fill out the forms, I could be a secretary. WHAT?!? The second time, they said, “Since you got dystonia in a day, maybe it’ll go away in a day.” WHAT?!? It doesn’t GO AWAY…I had what is called sudden rapid onset, my generalized dystonia started on one day and I never worked again. The THIRD time, the judge said, “I have no idea what dystonia is, but you have 2″ of Dr. notes, so it must be something!” Three WHAT’S?!? – L.R.

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To everyone who sent in their “WHAT?!?” stories. Thank you!

The last three were mine, I have SO many, I wouldn’t even know where to start. I think I have heard some of the absolutely most crazy and insane things I have EVER heard since I “got” dystonia in 2009. When I asked for these stories in June, I thought it would be easy and funny to have the public read how ridiculous some of our experiences are. What I “got” were little snippets of WHY we NEED dystonia awareness. Some stories were too long and too sad and complicated for this blog post. Too many of us have been diagnosed with psychiatric “issues” instead of dystonia. When dystonia doesn’t “look” like what whatever it is that doctors think it looks like, true treatment doesn’t happen and many lives suffer.

September has been declared Dystonia Awareness Month, but the dystonia community wants it to be OFFICIAL. To them, to be officially recognized by the government with a “real” month symbolizes a victory. A victory where we got the signatures ourselves with HARD work. We deserve it. Instead, NO National Network TV interviews, no big media events, just US, again, and unless everyone who has signed, gets 10 more people to sign in 7 days, we will no doubt have to try again… BUT it’ll have to be a very different game plan.

For me, what I want…is for the oblivion to dissolve. No more self diagnosing. No more moments of WEIRD. No more dystonia “WHAT?!?” stories. THAT will be the real victory. 

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The Results of the Warm Fuzzies

“I know you don’t want to hear this…”
Genetics Counselor Carrie starts it off like that… knowing I am the type who would rather have 50 genes mutated and destroyed than tell me I tested negative for DRD or (DYT5) and 13 other dystonia gene mutations.
Genetics people, scientists and researchers are SO different to talk to than doctors.
She said over and over that they firmly believe my mother and I have a form of Dopa Responsive Dystonia but they just don’t have enough genes and markers to do the testing yet. She reminded me that genetic testing for dystonia only became available at all in the last decade and that there are 50-75 genes they “sort of” know exist for dystonia but a test of 14 is just not accurate enough for specific mutations.
She wanted me to know it doesn’t change my diagnosis, it doesn’t change anything. She “blamed” science and difficulty of the process,
and she apologized to ME… I told her that Drs do not think like scientists or geneticists, they really don’t think all that much other than their own SUBjective opinions and the fact they must put something on paper.
I told her a negative test would immediately be “judged and sentenced” before knowing genetic testing is barely 40% accurate.
She said for us to keep in touch every 3 YEARS when they may have some new genes to test and to always keep track of trials where scientists are trying to locate new dystonia genes, that my mom and I are perfect candidates.
I have no doubt my mother and I have genetic dystonia.
Her dystonia made a big appearance in the hospital because of her broken leg and finally got it in her records to be treated for dystonia properly too.
I am not telling anyone yet.
Ok. I just told an entire group of people, but I’m not telling my neurologist yet. I have to think about all this a little longer. She is mailing the results just to me.
Carrie said she would be happy to write a letter to my neurologist letting him know this in NO way changes my diagnosis, treatment, medications for DRD, etc., and I really appreciated that offer.
I don’t need an “I told you so” or ANY even HINT of that thought or I might be sued and taken to a prison for angry semi-blind female patients with dystonia, wearing a sling, on and off twisted legs, giant traps and a giant belly if I eat a bean or onion because no one can figure out what to do with my shoulder, eyeballs,
poop and other body parts and problems that can most assuredly lead to insanity.
I studied too hard and have way too much “evidence” accrued to believe that this FIRST test is the end all final anything or that I don’t have dystonia. I sure damn do and it sucks like no one’s business.
We may be DYT46 … When that is available to be found…
I know I’m a mutated number… Somewhere in our DNA/RNA/protein/hormone (epi)genetic soup bodies.
Sigh.
Time to take my meds.
I’m upset but not as much as I thought I’d be.
I still know in all my brain and heart we suffer from one of the most complex disorders of many and one day science will catch up to our daily lives. Science isn’t dumb, it’s not even about how much money they have for research. It’s just BIG, COMPLEX and the variables are too many for this part in our lifetime.
At one point the earth was flat.

(Actually, NOW there’s a whole new theory on this…I won’t go there this post. It messes up my last line….)
Things change.

Fantasy map of a flat earth --- Image by © Antar Dayal/Illustration Works/Corbis

Fantasy map of a flat earth — Image by © Antar Dayal/Illustration Works/Corbis

Read this! …..     www.whatisepigenetics.com

Spilled Milk and Combat Boots

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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.