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.

Advertisements

Steady

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!

Judgement

I’ve been avoiding everything or more like everyone. Not because of the dystonia so much but more because I don’t feel the same anymore. I’m not sure what to say to people, what to do when I am around them. I am not sure what to do with their judgement of me when they see me acting differently and they make assumptions as to why. I’m not in the mood to defend myself or to prove a point. Honestly I just want to be left alone. I’m tired of explaining or defending or feeling guilty for not acting the way I am expected to act. Maybe it’s selfishness or maybe I’m just exhausted, overwhelmed with everything else. that I don’t have the patience to deal with anything other than what is right in front of me, right now. I am not asking you to compare your life story with mine or for you to tell me how hard you have it too and to prove to me that you still push through no matter what. Good for you. You are better than me, kinder than me, more organized than me, a better mom, dad, friend than me. Me, I’m tired. I’m just trying to make it through the day, one day at a time. I’m not sorry that I’ve distanced myself from the group you feel I should be a part of. I am not sorry that you think of me as a bad daughter, sister, aunt and so on. My priority is to be a mother to my kids. This is all I can handle for now.  This is all I want to handle right now. It isn’t that I have forgotten about everyone else. That isn’t the case at all. I just….it just isn’t my priority to a part of everything else right now.

We are dystonians

I saw a personal video of a baby with dystonia. Despite what its body was going through this tiny thing of a few months old looked almost amused or entertained by what his body was doing. He was not crying when his body spasamed. He was just living. I guess when you don’t know different this is all you know of who you are. I imagine as the baby gets older he will begin to feel and see how his body is different from others. I only hope the baby doesn’t feel pain.

I saw pictures too of kids going under DBS, their before and after pictures. As an adult the idea of someone opening up my brain to fix me terriefies me. How does a 5 year old or a teenager deal with it. How scary. Poor things. My specialist doctor  with 40 years of experience is absolutely certain my dystonia can be cured with proper therapy and stress relief. Though I believe there is more to it than that, I do pray his snobby ass is right and I can be one of the lucky few who doesn’t have to worry about a future with DBS anylonger, but what about the little baby, all the little babies and the kids with dystonia. It seems so unfair. So unjust that they are born with such a crappy disorder especially when I know first hand how difficult it can be to walk, talk, and worse sometimes breath. I know there are other terrible and sometimes worse things kids have to go through in life and I wish I could help with it all and I will try to do what I can I guess I can just tell my story and share stories of others. With dystoniamovement disorder

 

 

 

It’s What It Takes Away From You

I don’t know what it is that has caused me to have multiple episodes of dystonic storms/attacks over the past two weeks. I don’t know if its stress as my cocky neurologist (who saw me for five minutes) deemed it to be. I don’t know if it was the painful time of the month I had last week. I don’t know if its just progression of this disorder. What I do know is that it is scary in a way only people with movement disorders can understand.

How do I set any goals? How do I make any dreams? How do I go outside with confidence and pride if at any moment dystonia decides to take over and show me how much more powerful she is.

There is no cure for Dystonia. Most doctors don’t even know what it is and there are waiting lines that are months long (sometimes years long) to see doctors that do know something about dystonia, but not much more than you or me, or don’t know what they can do about it. Most of us are just waiting, waiting to be told what is wrong with us only to finally see someone who tells us its is all in our heads, pschologically. They take our money. They take our health insurance. They take our time. We pay for medications that only dull our symptoms, but don’t take away the problem. We fear losing our jobs if we haven’t lost them already because of the fatigue and the spasams and…

Of course I am stressed. Here I am in school trying to get ahead in my life, for my kids, for me, for my family and trying to study after a spasm attack is like….. Its like asking me to go a few days without sleep and then open a book and take in what I read. I cannot focus. I can’t even concentrate. All I want to do is sleep even if I just woke up.

My boyfriend thinks I forget things easy these days. I tell him I feel more figity. I can’t focus. Even trying to write this entry is proving to be very difficult. I cannot collect my thought and order them and I didn’t even have a spasm today, well a super tiny one in my arm. How am I going to make it through school. Sunday evening after a lesiurley walk in the park, 20 minutes into the walk I began to siginificantly slow down and struggled to lift my left leg until I couldn’t even get my foot off the ground. I stood there for a moment. Then I do what I learned to do and I turned myself around and I walked backwards to the nearest bench. My left foot dranging like dead weight. My balance was terrible, but still I made it to the bench. My boyfriend, who knows I have a lot of pride pretended not to watch me from afar. I made it to the bench and took a rest. Each one of my kids passed by, taking another round on their bikes, asked me if I was ok. I assured them I was, I just needed a break. After about 5 minutes I got back up and did what I could to lift my left leg. It twisted inward, but I was just happy I could move forward without having to do it backwards. My boyfriend caught up to me and walked next to me for the next two rounds that I was determined to walk. We were arguing again so we walked in silence. But he couldn’t help but ask, “Whats going though your head”. I shook my head and said, “I can’t even walk anymore”. He argued, “You can still walk. You aren’t in a wheel chair.” He said a few other things, but I didn’t hear clearly because it wasn’t what I meant and I wanted to point out that I have been temporarily in a wheelchair because of this. He was right though. I was still walking. Painful as it was becoming to do so I was still walking. I walked to the park like a perfectly healthy normal human being and then about 20 mintues later dystonia said NOPE! you’re going to struggle to walk.

So after 1 round of healthy and two more rounds of zombie walking we began to walk back home. Standing straight was so hard and breathing was painful. My boyfriend even turned to me and said, “you are in a lot of pain aren’t you”. Struggling to breath I confirmed with a nod. Had he not been helping me watch the kids ride safely across the streets on their bikes, I think he would have carried me home. Instead he rubbed my back with his hand and continued to walk very close to me. I told him to catch up to the kids and get them home quickly and he could come back and get me. He refused to leave my side.