My Cousin Passed Away

Earlier this month my cousin passed away, the one with cancer. In all the time that she was sick I didn’t visit. Before she was sick I’d go with my parents to visit her and her family many many years ago. On occasion I would see her during family reunions many years ago. I remember her smile. She had a great smile, but other than that she was a stranger to me. Except through my mothers mouth I knew nothing of her and except through my mothers mouth she knew nothing of me (and my mom loves to distort the truth about her children). I didn’t see the point of attending her funeral and so I made no point to talk to my supervisor about missing a day of fieldwork that I really couldn’t miss so close to graduation anyways.

Am I callas? Probably in the eyes of some. Sometimes even my own. I find it odd that I feel more comfortable around strangers in rehab during fieldwork than I do around blood relatives.





Just a Thought

Dr. Hope didn’t see me for my appointment. One of his colleges did. I found out the day of my appointment, during the ride downtown to the doctor’s office. I guess they didn’t understand that I only wanted to see Dr. Hope. It didn’t matter. If I rescheduled I would have to wait another month or more, but I didn’t want to wait any longer. I proceeded with the appointment and my boyfriend, who was with me agreed it was best not to reschedule.

The doctor’s assistant saw me first. She was young. She asked a lot of questions. She didn’t take down any notes. She didn’t even have a computer with her to type up my answers to her questions. Either she had an amazing memory or there was a recorder in the room I didn’t know about.

About 10-15 minutes into the visit my nerves must have gotten the best of me and triggered the spasms. The doctor’s assistant was happy to see this (in a clinical manner) and went to fetch the doctor. I will call this doctor, Dr. Matter-A-Fact. By the time she came around I was already having trouble speaking, but my episode still wasn’t as bad as it could get. The doctor proceed to check my reflexes which made the symptoms worse and then she flashed a flashlight in my eyes and I just hated her for doing that.

She sat down in the stool and proceeded to tell me as I struggled to breath and as the pain set in deep that she agreed with my previous doctor. She continued to tell me there was no cure for what I have, but  that my symptoms are more scary to experience or for my loved ones to see than they are harmful. She expressed I would not die from them. She then went on to express that she believes it is psychogenic and that  perhaps it could be an underlining issue or stress that is cause of it. She said no one really knows for sure. . She recommends making an appointment to see a psychiatrist and she tells me to look for one that does cognitive behavior therapy. She said a therapist is my best option and so on and so on…

By this time I tuned her out. She become an noise in the background as she answered my boyfriends questions and my shortness of breath grew louder and louder in my ear, tears rolling down my cheeks and my jaws locked so tightly shut I felt ache in the roots of my teeth. What was the point of listening after all. She pushed my problems on to someone else.  She saw me once and that was enough in the span of less than half an hour and that was enough for her to throw her expertise as a movememnt disroder specialist in my face.

With my jaw locked, I couldn’t defend myself. I couldn’t ask questions. I couldn’t beg her to see me at least 3 or 4 more visits before she made her quick diagnosis and pushed me on to someone else to help me solve my problems. My muscle locked and twisted as I sat crooked in my chair trying to force myself upright I could barely breath. My boyfriend continued asking questions, but all I wanted to do was get up and run out of her office, except I couldn’t.

She spent less then half an hour with me. She watched videos I previously submitted prior to my visit. She looked at my file…she’s an expert in this. Who am I to argue right?

She didn’t see or hear anything else. She didn’t take into account that when this began happening to me almost 4 years ago it was the happiest time in my life. I was out of a bad marriage. I was in the middle of going to school to pursue my dream job to make a better life for my children and myself. I had a lovely man in my life. I was the healthiest and strongest I’ve been in many years. None of this mattered.

I went home and I cried for days. I hardly said a word to my boyfriend. He wanted to talk about it. I didn’t. I just wanted it to all go away. I wanted to pretend I didn’t see that doctor, that she didn’t sit there calmly diagnosing my future. For once in all these years that I have been fighting to find a cause or a cure, I lost hope. Who am I in comparison to experts?


About a week passed of wallowing in self pity and then I grew tired of myself. I began to research again and I came across two website and FND hope. It was the best information that I could have come across in a long time. Psychogenic dystonia is often also termed functional dystonia and something else I can’t recall. There is controversy of which to use because it is not yet clear why “this non-organic” dystonia happens, but it is possible to have the symptoms without stress and it is also possible to have it because of past trauma. There is a movement happening to correct the terminology to functional dystonia in the DSM-5 diagnosis book so that patients receive more than just psychological treatment and doctors don’t just push us off onto a therapist when they don’t know what to do with us.

With that said I understand now that I do have functional dystonia (I refuse to call it psychogenic) but I do not agree with the idea that it is current stress. Is it possible that my past trauma could have rewired my brain? Yes! That I can accept. But I still want to know why my brain rewired. Is it a chemical imbalance. Where in the brain is the rewiring occurring? I know a lot of people who have been through worse trauma then me. Why aren’t their brains rewired and their bodies locking and twisting?

It basically comes down to this. There isn’t enough money for the research to be done to discover why this is happening. Until there is enough money, research wont be done and all of us with functional dystonia are stuck with two options, experimental drugs and a therapist because movement disorder specialist, at least where I live are just pushing us onto therapist and washing their hands of it.

I know if I don’t at least try the route the doctors are asking me to take, they wont give me a second look. So, I am in therapy. I also went back to my neurologist. The one doctor that actually paid attention to me and gave the time of day. He wants me to try medication to see if it will help change my brain chemistry. So, currently I am looking for a psychiatrist.


It’s In The Manner

It’s the wording. It’s the way someone says something, the tone, the timing, the vocabulary used. It makes a difference when you are sitting across from someone with power telling you very matter a fact what is wrong with you without knowing who you are at all in the half an hour of time that they spend with you. There is something so dehumanizing about it, so humiliating and frustrating. How do you argue with an expert, a specialist? How do you look at yourself in the mirror and not feel like shit? Hopeless? Weak?

Dr Hope didn’t come to my rescue? I didn’t even get to see Dr. Hope. One of the other doctors at his practice accepted my new patient application and made an appointment for me. I found this out on the day of my appointment on the way to the doctor, but I wasn’t going to dare reschedule. Waiting another 3 months to see Dr. Hope was not a smart idea in my opinion. I could see this other doctor for now and then transfer over, maybe. But what if that doctor wasn’t as good as Dr. Hope? What if….

She sat there. She watched me as my body twisted and tightened and I struggled to breath. She was so calm. so collected. As if she has seen this a million times before and she very matter-of-fact tells me she agrees with the first specialist I saw. She goes on to tell me about his credentials for a second and then continues by telling me there is no cure but I wont die from this. It looks really scary to people when they see it, but I wont die from it she explains. She tells me to look into cognitive behavior therapy with a therapist, but other than that there is not much else that can be done. She goes on to say a few other things but my this time I’ve tuned her out.

In about 15 minutes she made a decision about me based off what she saw in the room, my patient folder and the videos I sent in to the other doctor over a year ago. What was I suppose to do? She’s the expert. Besides my jaw was locked and I was struggling to breath so I couldn’t even defend myself or ask questions.

I wish I had never gone. Aside from the doctors and the dystonia symptoms this has been the happiest time of my life, but they insist it must be an underlying issue. I hadn’t felt this defeated since the last specialist I saw…

Laying on the bed, defeated, hopeless…

Google: psychogenic dystonia also known as functional dystonia, somatoform disorder or conversion disorder. This dystonia is not neurological in nature. Often treated with psychologist  that does psychotherapy with either biofeedback  relaxation or CBT cognitive-behavioral therapy…



I Will Wait For You

1502391620214-400916556-e1502391820473.jpgI found myself staring at his picture. After I hung up the phone with the hospital’s front desk receptionist (or whatever the politically correct term is these days) I stared at his picture, at his eyes, at his smile, at his kind face on that folded print out. It was a print out handed to me by the first neurologist that saw me about two years ago. He was the first person, doctor to ever mention dystonia to me, something he admitted he knew little about. After months of lab work and test and wires on my head, like a lab rat, proving (according to all test results) that I was perfectly healthy human being, but clearly I was not, he referred me to this movement disorder specialist. I didn’t even know there was such a thing as a movement disorder specialist.

He told me to look into the doctor in the picture as he handed me the print out with his name and credentials and some more papers explaining what dystonia is.  He sent over my medical records to this specialist doctor, but two years ago the health insurance I had didn’t cover this movement disorder specialist.  I will call this doctor Dr Hope.

I ended up with another movement disorder doctor and he was terrible. I will call him Dr. Ass. He is the one I love to quote as saying to me “I have 40 years of experience” to prove to me that he was right about my psychogenic diagnosis (after just one visit with him) and then told me I needed to accept the diagnosis in order to get better.

Fortunately, as of today my new student health insurance begins and this insurance does allow me to see Dr. Hope, the specialist I was originally referred to.

Now, I  have renewed hope that this doctor, that this man, that this human being will look at my medical records I had sent over to his office from my PCPs office,  after I signed a medical release form. Now, I have hope that he will look at my medical records and accept me as a new patient. I have renewed hope that he will accept me as a new patient and he will give me that second opinion that will cure me of all the twisting, jerking and locking my possessed  body tortures me with when I become too exhausted, or I’m on my period or whenever the hell dystonia decides to show back up.

I stare at his picture and I beg, I plead, I pray as if he’s a new God, my new hope and my stomach turns and churns. This doctor, this man has the power to decide if he will see me or not as a new patient. I cannot as a patient choose him. This is how limited my options are for doctors with movement disorder specialties. My stomach turns, as I chant “Please! Please! Accept me as your new patient. Please!”

If moths are more upsetting to the stomach than butterflies, then I have moths in my stomach and so many of them. What if he doesn’t accept me?What do I do then? It isn’t as if there are a bunch of doctors with a specialty in movent disorders available.”Let me help you help me figure out what I have! Please…” I say the doctor’s real name repeatedly in my head and out loud as if I was face to face to him now. Does he see me? Does he see my struggles, my humanity, my worth, my pain, my kindess, my family…

He has a nice face. A kind face. This is what I tell myself to convince myself that he is a good doctor, that he cares about people as if a face in a black and white picture can provide all that information. This is what I tell myself because I need to believe that someday I won’t be frightened of exherting myself into a storm. I need to believe that someday I will feel strong again and confident of myself.  If I have a good day I won’t be afraid to enjoy it physically without feeling like a fish on a boat gasping for life as my body finally relaxes and  allows me to breath. I need to believe that I won’t be attacked by pain in my back, in my neck, in my limbs during these episodes, but most of all I just don’t want my loved ones to see me this way anymore. The pain on their faces when they see me in pain. That helpless look they have when they know all they can do is let the storm pass and offer me rest and water after.

Please Dr. accept me as your new patient. Please! I will wait in the 3 month line with the rest of my fellow twisters and shakers, because you have my cure or at least more answers and more options than the other doctor and I deserve an answer from a doctor who cares.


15017772654032070041691I was athletic. I was in martial arts. I ran. I worked out. I spent time outside and gardened, walked stairs instead of rode elevators. I parked far away to walk farther. I practiced yoga. I was fitness instructor….

Now, I am afraid. I am afraid that after a walk or run or a workout, if I make it through the workout (I often do) I will go home and suffer. More often than not I am perfectly fine, with maybe just mild symptoms, but on other days I struggle to walk and deal with multiple spasms and twisting and pain or worse… I struggle to breath.

This year, it’s the struggling to breath that has kept me from consistently putting on my running shoes or my running clothes, even to go for a walk. Except for martial arts, which I practice about twice a week these days at tai chi pace, I hardly work out at all anymore. Even going to class for martial arts makes me nerves, but I love how supportive everyone is and how several of my instructors have learned to helped me adapt to  modify for my left side or how they’ve learned when I am having a bad spell from a terrible spell. They remind me to do what I can and rest when I need. They know I’m the type to push myself hard so sometimes, they’ll whisper in my ear to take it easy when they see the symptoms begin. They knew me before  dystonia… Don’t get me wrong I can still defend myself, but I will suffer for it later.

My sanity is being tested by this latargic fearful lifestyle, all for the sake of breathing. It isn’t the workout itself. I am still fairly functional enough to excercise, but it’s the “side effects.” It’s when my body starts to slow down, to rest to recover that my body goes haywire and I squeel and cry and groan as my stomach and my chest and my arm and leg and face tighten and lock and twist and bend or hyperextend. The air won’t come in and it won’t go out. And then finally it’s as if my body says “ha ha jk!” and every muscle in my body relaxes enough for me to gasp for air. I begin to feel alive again thankfull I can breath, but then just as quickly as I gasp and feel alive my muscles tighten back up and I can’t breath in or out again. This happens several times over and over.

If I am lucky enough to have it happen when I am home when my boyfriend is there, he is there by my side stroking my hair softly, gently telling me to calm down when he sees me begin to panic. Sometimes he says nothing at all and he just lays next to me, his warm body next to mine until it’s over. Than he tells me he loves me.

In the beginning he use to panic too. He thought I was going to die. Now he understands differently.

In the past if I was worried or stressed or just had a ball of energy to expend I would go for a run or a walker or a hike or whatever and now it excercise that is my biggest triggers if not the cause. My best outlet is gone and I am screaming inside craving for it, itching for it.  I want it so bad, but I can’t seem to get out there anymore without memories of not breathing haunting my brain.

I laugh when people tell me to try yoga. I wish I could. Should I tell them I was taught and certified to teach yoga just a bit over a year ago… I wish I could find a style of yoga that was nonweight bearing on my left side and didn’t require balance or any stretching of my muscle on my left side. I wish I could find a yoga that would not irritate my foot or hip when  my ligaments/tendons are swollen and painfully throbbing as if they are about to explode from the inside out.

The pain of those swollen tendons/ligaments is unbareable. Something as simple as walking can leave me with swelling for days and the pain is intense, undescribally painful. It makes me agiitated, tired. All I want to do is lie down to alleviate the pain, but the pain takes days to disappear and then I feel like a lazy ass for just lieing around so much at home.

All my energy has to go to my work, my school, tending to the kids, getting the kids to school and from here and there. Then at home I just want to put my legs up.

When I have less pain or none at all and my energy is back, I get up and I do things. I remind myself to take it easy. I do take it easy, but then at the end of or near the end of whatever I am doing, when I still feel good I say to myself, “I can go a little longer” and forgetting about the side effects I do. And it feels great! I get stuff accomplished. I finish projects that have been staring at me in the face from my bed or my sofa. I am happier. I have plans. I have goals. I workout, easy of course, but I work out. I am normal again and oh it feels so wonderful. I do it again the next day. Maybe for a week or more or less I continue this, because one day at the end of the day  I am a bit too tired. I mean, oh man I am really tired. OMG I am so tired, so so tired. Maybe I went too far. I can’t really tell where. Honey, I am really so tired. Do you mind making dinner tonight or can we go out to eat. Or maybe we can just pick something up because I’m too tired to go anywhere. I am so tired. Why am I so tired. They tell me to just rest, relax. They have it covered. So I rest, relax and then I can barely get up for dinner. My mouth…I…  my arm, my leg…oh shit I over did it.

Sometimes I have small episodes. A goodnight’s rest, maybe even a nap will help me recover. Other days I have storms, those too can vary in severity, but they last longer and I need a lot more rest after.All of them I can handle, deal with, manage except for the breathless ones.

Please no matter what just let me breath! Please just let me breath!

Skimming Through

booksI don’t know if it’s age, I’m almost 40 yrs young, or if its dystonia, but I notice that I’ve lost my patience. I save articles, blog posts, links, books, magazine articles and so on, to refer to them in detail later, when I have more time to read, but I end up skimming through the information instead. It doesn’t matter if its paper based or online based. No, that’s not true, if its paper based I do better, but not much better.

I reserve what ever energy or want I have for reading for school books or for anything I have to read at work, but even that takes quite a bit of effort to concentrate and read well. For leisure I have resulted to audio books as I drive to school or work. But at home when I have free time (this is rare) and I grab a book to read it, at least the first chapter, I find I can’t sit still long enough. Reading ebooks are the worst. I need to hold a page. I need to feel it. But paper or online and I shift. I move. I get up and go.

It is rare that I just read like I use to when I was younger. My BA is in English of creative writing. I had to read book or two daily for school and I loved it. I was elated by it. I was intoxicated by it. I wished I had more time to read and then I would write. I had so many ideas. Every scrap paper, napkin, blank canvas turned into places I could jot my ideas.

I don’t even have patience to write anymore. I shift, twist, stretch and move. I can’t sit still for too long. When I am sitting I am moving my legs, my arms, my head… my eyes. I am most content when I am up and about except after half a day of up and about I need to relax, sit down, sit still. I need a break from that too.

Is this age? Is this dystonia? I couldn’t even reread my own past post a few minutes ago to find and edit mistakes that stand out like a yellow browning leaf on a indoor potted plant. Trust me there are many mistakes. I am surprised internet trolls haven’t made a mention of this yet. Yes, I am flattering myself. If only I had enough readers to my blog to even bring in the trolls. Why are some people so thirsty to put other people down anyways?

I digress. I have lost patience to read, to write I just want to write and be done with it. I just want to say whats going on even if it comes out in rambles. I just want to read the gist what you are trying to tell me, the reader, so that I know. Yes, of course the details matter. Details are very important. but I just can’t get myself to concentrate and sit still long enough to do it. Sometimes I reread a sentence over and over until it actually sinks in to my head what I am reading. Some of these sentences are very basic, but it’s as if I didn’t read what I just read because I can’t remember what I read.

With that said, I want to apologize for all the grammatical and spelling mistake I have left in my blog. Most of you wont mind, not much anyways, but there are some reader out there that define intelligence by the grammatical perfection or attempt of perfection of a written entry.  I also want to apologize to all the bloggers who I follow whose partial articles I read or articles I save with intention to get back to, but am overwhelmed by the long list of articles when I try. I also want to apologize to all my English teachers who helped guide me through as I earned my degree. I am disappointed too. I will work on this even if she one paragraph at a time. I guess it would help if my computer was a bit faster. This thing takes such a long time to load sometimes I want to punch it.

One of these days, soon I hope, I will go back and correct the mistake I have seen. Until then I’m tired of sitting here. I need to move.

Daily Rant of a Dystonian

My teachers are aware of my dystonia or rather they are more aware of the severity of it now that more of my symptoms have surfaced during the day. Actually, this is what happened. My ex came back into town, made his usual ex asshole words and demands and long story short that set me off into an anxiety attack that kept me from getting much sleep. That lack of sleep and anxiety caused major fatigue that triggered my symptoms at the end of a school day during a meeting with my teacher.

I struggled to speak.  The muscles of my mouth on my left side where locked. I had to write her a note and slipped it in front of her as I approached her to tell her why I couldn’t speak. I wrote that I could still understand everything that was going on and everything she needed to tell me and in writing I could respond. She like an awesome OT understood, was calm, spoke to me, saw I understood what she was saying and could communicate, but could not speak. I tried to speak a few times, but my words came out choppy or stuttered or not at all depending on what words I had to say. I was so embarrassed and worried about what she was thinking. Was she going to kick me out, fear that I would hurt everyone in my path? Has she not seen all the hands on I have done so far?  Has she not seen my hard work, heard my knowledge, seen my creativity, my love for the OT field?

It was embarrassing too. I worried that my classmates might see me, but luckily my classmates were occupied and speaking loudly about the homework assignment as we sat outside the technology for disability center where we had just had a tour to show us what kinds of technology is available to people with special needs.

As I tried to speak the look of concern on my teacher’s face at the end of her review of my homework assignment worried me. She asked me if I was ok. I told her in choppy whispering words that I was just frustrated and as my turn was done I got up and found another place to sit among my classmates and correct my homework mistakes. When my classmates asked me a question or made a joke I nodded my head or smiled. I rested long enough to be safe enough to drive home and I waved bye to those paying attention and I quickly snuck away to outside and then the parking lot to my car and then home.

Later my teacher and I had a meeting and her first concern was for me and then naturally her second concern was for my future patients. So she and I and with my permission (she protected my medical rights like the natural OT that she is) my other instructor discussed what my symptoms are, how often they happen and so on. I think they felt better knowing that most of the time I can feel my symptoms coming on and I can take myself out of a situation so that I do no harm to anyone including myself.

We discussed what the doctors know and what they don’t know and all the tests I’ve had done and how as soon as health insurance is available to me again i will get a second opinion. We also discussed how it would be strongly recommend to talk to the the field work instructors before I start field work for liability purposes as well as for any assistance or modifications or help I may need during any symptoms that may occur during field work. My instructors assured me it was my right not to, but it would prevent confusion and so on in the future. I agreed. We all discussed discrimination and facilities right to turn away and so on. I discussed my understand of both sides of it, my worry of discrimination and my best work etc., etc.

Really it went a lot better than I expected it would and when assignments for fieldwork were handed out they did not baby me and give me easy stuff. That made me feel good. So, this is my chance to show myself what I can do and say Fuck You Dystonia! You cannot control me. You send me a spasm and I learn to rest, to calm down, to sympathize with others who live like this. You lock up my limbs while I’m walking and I walk backwards, sideways, lay down rest and then get back up. You may slow me down and I appreciate time more, spend more time with kids, become more patient. You control my left side but I still have my rights side. Every breath I can breath I cherish, because thanks to you I know whats its like to not to breath over and over again. Every word I say I cherish because thanks to you I cannot always speak. Every relief of pain I live I cherish because oh the pain you bring is torture. Every day I walk, talk, breath, feel “normal” I cherish because even though I am more often normal than not, it takes a toll on me. I am stronger because you are my daily battle. You get me down and my family gets me back up.  Fuck you dystonia or whatever the hell you are!