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
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.
We were talking, while walking, our rounds around our neighboring street, when I discovered and he discovered how angry I am; how much pent up anger I have. I let it out. I let it all out.
I let out how angry I am with my father and his absence in my life and my mother for her excuses for him, her enabling of him, her treatment of him as a child instead of an adult and allowing him to get away with his neglect as a father because of his “sickness”.
I let out my anger for my siblings and how out of place I feel more often than not when I am around them. As much as I love them I so often feel like I don’t belong, like they don’t get me and I don’t get them. It’s a lonely feeling.
I let out my frustration about my best friend and how frustrating it is to keep watching her and listening to her forgive her husband each time he says “I’m sorry”, though she knows deep down inside he’s not.
I let out how angry I am that I’ve lost my patients, that on top of everything dystonia won’t leave me the fuck alone. She creeps up on me at my happiest, at my saddest, at my most exhausted, at my least exhausted and/or all of the above. She turns my world upside-down and it’s so hard to stay strong, to know what to do, to figure out the triggers to know who to talk to or who to turn to for help.
I let out my distaste for the snobby doctors who say this isn’t organic, who wasted my time and my money and only saw me as a number.
I let out at how guilty I feel that my boyfriend has taken on my dystonia with me while I struggle to go to work and school and care for the kids. I feel like a burden to him, like I’m taking away his opportunity to have better opportunities. He tells me I’m pushing him away. He wants to stay. I want him to stay.
I’m angry because this all feels so unfair. Am I a spoiled brat. I am well aware other people are much worse off than me. I have a cousin I hardly know fighting stage 4 cancer. She just had major surgery over the weekend. She too has 3 children. I have to tell myself at least I don’t have stage 4 cancer.
I let out how angry I am that I can’t stop talking about dystonia and worse that when I do there is noone I can talk to that I love that understands what it is or what I am going through. I am angry at the stupid limited support groups available on Facebook filled with suffering people talking about their suffering. It’s like turning on the news and only hearing bad news, people murdered, dieing, raping…It doesn’t feel informative or helpful at all. It feels like the end of the world is coming and we need to strap on and watch our backs. I don’t want to be a part of a vent group. I want a support group. Where is the damn support group? Where is the damn therapist to lead the group? Where is the damn cure and the damn treatments and….
Why isnt there more available for people with dystonia?
I think it took me less then an hour to let it all out and maybe more. In between he gave his two or three cents but overall it was me just venting and he just listened and I just wanted to hug him and apologize for venting. I told him I am turning into one of them, one of those people who are sick and their whole life is consumed by the sickness that they can’t speak or think beyond the sickness. I cried. He held me. Where is his support group? Where is the support group for my kids?
I have a cousin with Stage 4 cancer. My mother told me this over the phone about a cousin I’ve seen maybe a handful of times in all my life. I remember her face, but I haven’t seen her in many years. Its partly my fault that I haven’t seen her.
I’ve distanced myself from family reunions and such events. My schedule is packed with kids and work and school. It’s been this way for years and everyone lives so far away it takes over an hour each way just to drive out to see someone. I am also not close to my extended family because, well that s a story for another day. No need for tangents today.
Today its about my cousin who I hardly know. Her cancer has spread. She’s about my age, maybe a little older. She has 3 kids like me a little older than mine and my mother tells me this information over the phone and I don’t want to hear it. I should have known by the way she worded the text why she wanted me to call her.
I don’t want to listen to more bad news. These days my mother is full of bad news. Maybe its her depression, maybe its mine, maybe we are just getting older and the world sucks.
I want to tell her “the next time I talk to you on the phone will you give me only the good news”, but I don’t dare. Why? Because its immature, selfish, inconsiderate and on the border of denial about the real world.
I fight the urge to get off the phone. I grew up with my mother depressed. I grew up with my father depressed and drunk. I just don’t want to listen to the sadness anymore, but love is a bitch and so I stay on the phone and listen.
But what am I suppose to do with this information. Am I suppose to go visit this cousin of mine who I don’t know at all except by my mother’s word of mouth. Am I suppose to go sit by her hospital bedside way on the other side of town and tell her what? Hey cousin, I’m sorry you have cancer. I know we’re perfect strangers. It sucks that you are going to die. How can I help?”
Wait how the hell can I help? I can barely take care of my responsibilities….Geeze I am selfish and self-centered these days. I will do it for work and I sincerely want to help, but for extended family….
As she continues talking to me I realize the phone call is not about my cousin, not all of it anyways. Its about my mom getting this sadness off her chest, having someone to talk to. I am about the age of my cousin. I have the same amount of children. In a way I think my mother is morning for me and my siblings. She worries about loosing us.
I guess my mother notices my hesitation because she asks me to pray. She knows I don’t believe in God but she knows I tend to be a very spiritual person so she tells me to pray to mother earth or the trees or whatever I pray to because its all the same in the end and I can’t help but giggle. I guess she has a point. Maybe. But I can defintelly pray to mother earth or the trees or whomever for my cousin to get better, but she has stage 4 cancer…
A few weeks ago an ex-boyfriend from high school messaged me on Facebook. We’ve been Facebook friends for a while, but not really. He sees my posts. I see his. That is about as far as it goes. I was in love with him in high school. Stupid puppy love, innocent love you think is forever because he’s cute and sweet and makes you feel special, but neither of us really knew anything about each other. Not really. It didn’t matter though he broke my heart. Yada yada yada. I moved on and we’ve both grown up since then and have both had worse broken hearts since.
Then he messaged me about his wife or rather his ex-wife. They are recently divorced according to Facebook posting and it sucked. Not too long after she ends up in the hospital critically ill. Weeks after being sick and loosing ability to walk and other things she is finally diagnosed. She has MS he messaged.
He knows I am in the occupational therapy or something like that. I tell him I am in school for it. He wanted to know if I knew of any locations where he can take her for therapy. They have no insurance. It’s out-of-pocket and he jokes about luck and charm.
A man I use to hate for breaking my heart is now choosing to stick it out and help a woman, the mother of his children, through a life long disease, despite their divorce. I can it isn’t as fairy tale and as easy as it sounds, but his heart is in the right place…I don’t know it made me think how people can grow up. Back then he cared about himself and only himself and now….I don’t know. I guess I’m proud of him. Maybe becoming a parent did that for him. Maybe he saw the bigger picture.
I offered to send any information his way and chose not to tell him my story. What for? I don’t want to tell anyone, not even myself. I blog about it in hopes that it helps someone. I blog about it in hopes that a doctor will see that I am one of the many people they have turned into numbers and sent us away with pills but no cure. I blog about this to get it off my chest, maybe get a message from someone who can relate to me. In fact i did the other day. A person reached out to me and sent me an email asking if I took a certain medication. She noticed our symptoms were similar. I planned to email her back and tell her I never took that medication, but I didn’t email her. I couldn’t get myself to do it.
Those of who still don’t know, who are still trying to figure it out, who have been misdiagnosed, or ignored or have run out of insurance or…it hurts to keep hitting that brick wall, at least it hurts me. I don’t want to know anymore what this isn’t. I…
Last night we, my boyfriend, children and I went to a friend’s house. We had tacos, buffet style. We had movies, kid friendly. We had good talk, a little of everything. After the movie Trolls the dogs came up to me again and I pet them, something I’ve done my whole life when ever a pet is around. I am not very pet friendly but I know where there is soft when I see it.
So, there I am petting this beautiful white dog rescued from the pound, with clear blue eyes and he’s loving it when I notice my left arm begins to freeze. I could no longer use my left arm. I begin to spasm in my stomach. My left leg stiffens and as my son comes to give me a hug I kindly whisper not to hug me just yet. My boyfriend and my daughter see me and they tell my son I’m in spasm. But the spasms calm a bit after a few minutes. We all get up to eat left over birthday cake. I try my best to hide my limp and stiff arm. I sit down to eat cake. Its good cake. It has a little too much frosting but not terribly sweet. I hate super sweet cakes. I think about how my healthy eating for the week was just ruined by this cake.
I begin to feel a little light-headed but no big deal. I feel a lot like this these past few years. I slowly walk to the bar to sit on the stool and watch the grown ups in the kitchen, stiff arm, stiff leg. I sit down. I love how strong my upper body is. It makes getting up onto things much easier when my leg is stiff. I sit down and I’m dizzy. I’m tired. I feel….not all together there like I’m there but far away. My oldest sees me and asks if I’m okay. I tell her I’m ok just a little dizzy. She keeps watching me. I can’t look at her because I’m now just spaced out, but I’m aware of it all I just can’t do anything about it. I manage to get her to not take another goodie bag, like a normal parent trying to teach their child not to be greedy would, but I barely manage that.
My boyfriend comes over and asks me how I’m doing. I manage to say something like I’m okay, but I can’t remember what I said. he keeps watching me. I notice he creeps closer and then before I know it I hear my call her husband’s name, I’ve slid out of my chair and I’m spasming, my legs caught in my boyfriends arms. Someone has my head. he says something about like a seizure and they try to carry me up the stairs to lie me down and away from the kids, but we end up on the bottom steps and for a long period of time my boyfriend is holding me up keeping me from hitting my head and our friend is untwisting my foot from staying twisted and rolling over because I am whimpering over my ankle and hating on how difficult it is to breathe.
Our friend keeps telling me to relax and I want to say YOU FUCKEN RELAX when you can’t breathe, but the other part of me says he’s your friend he’s trying to help you. My boyfriend is telling him about dystonia and the stupid doctors saying its stress related and our friend says “Bullshit”. I talk when I can and try to make jokes or talk or soemtimes I mumble. I am completely embarrassed.
Finally, when my body relaxed enough for them to take me upstairs they did, but then upstairs it began again. So, after just a few minutes on the bed and after several spasm I went from laying down on my left side to sitting up and then falling forward off the bed. They kept me from hitting my head as I fell to the floor and then I continued to spasm. I think the whole thing lasted at least an hour, if we don’t count the stuff before the fainting or the locking of limbs after I was finally at least able to breath normally again.
The whole time I was on the floor our friend asked questions after question and suggested Chinese medicine and acupuncture because western medicine is nothing, but a pill popping culture. We couldn’t agree more. We understand medicine helps save lives, but it’s out of control how easily we are just told here take this, we don’t know if it will work or what you have, but take it or don’t bother me. I get sometimes some disease are about trail and error, but…I just know this isn’t stress related and I’m not taking an anti-depressant for it, because I’m not depressed.
As we left his house, my left arm still locked and curled, our friend realized and asked why I couldn’t just turn my wrist to unlock the stiffness in my locked arm. He has friends with MS and dystonia. I said to him, “because when I look at my hand (as I looked at my hand to show him) and tell it to turn at the wrist nothing happens. My arm doesn’t listen. My brain is not connecting to my arm or any of my left side. Someone else has to move my limbs to help them relax or I have to wait it out until they fianlly unlock. That is painful. Our friend then asked me, “why they haven’t checked you for chemical imbalances? Or,” he thinks for the word. “Neurotransmitters problems,” I interrupt. “Yeah,” he says. I looked at him and said, “EXACTLY!!!!”
Last month with the holiday break, less work, less working out and plenty of lazy living I gained a few pounds and had less “dystonic” episodes. The same thing happened last year. Then the new year begins and I go back to my workout routine and there I am again struggling to walk at times. First week back at the dojo and this is exactly what happened.
I’ve given up on doctors. I’ve given up on finding a cure. Nobody knows what this is. Its just a part of me. Sometimes I can’t walk right. Sometimes I struggle to breath. Sometimes I get dizzy and I fall. Sometimes I spasm for hours and I’m very very tired all day because of it. Sometimes all of the above at the same time. The pain in my muscles and joints isn’t as bad as at use to be when this all began or maybe I’m just use to it now. Either way when the symptoms begin especially the breathing difficulties or when I can’t talk because my jaw locks I cry or I get pissed or both. Then I try to calm down and I rest until it gets better and then I’m back to “normal”, except these days my new normal comes with that never ending fear of my symptoms being triggered by anything physical that I do.
I suppress the fear more often than not. Its the only way I can cope. I just keep going. I keep telling myself I’d rather try and move and live than atrophy. What else am I suppose to do, wither away? Am I suppose to just give up? Whatever this is: dystonia, stress, a chemical imbalance, or whatever it is, I can’t let it beat me? I have to keep going. When the doctors figure this out in 10 or so years I don’t want to be skin and bone and frail or 400lbs and bound to the living room sofa while my kids are all grown up and I miss out on their entire lives. I am worth something. I have a purpose. I have plans and a life to live.
I would rather spasm for a few hours than atrophy. When the spasms become too much than I take a longer break until they are gone and then I get back up and start moving again. It isn’t a fun way to do things, but it is what I believe is the right thing to do. This is just a part of me now so is school and work and family and love…
Symptoms for a few hours or atrophy is what I have to keep telling myself over and over and over especially when the symptoms are bad. Sometimes I give up for a little while. I mope. I cry. I eat chocolate and snack on crap. I go to sleep. I rest. I start to feel better. I force myself to get back up. I get up I get moving.
Earlier last week I had to bow out in the middle of my martial arts class because I began to seriously struggle to breath. My stomach and chest became so tight I couldn’t stand up straight any more. I rested for the rest of the class. After two or so years of this. They no longer question if I’m OK or not. They seem to be able to see the difference. They too have seen me on a bad day and since then I can see a mixture of pride and fear in their eyes each time I come back to practice.
Yesterday, I ran with my boyfriend. We are finally running together like we’ve been talking about for months. It took bad news from his doctor to really get him going. It was cold out, but a beautiful day. On the walk home after a successful run of ten laps it wasn’t until about half way home that my left leg began to twist inward and all my muscles in my left leg stiffened and stayed that way for several minutes at a time so, I struggled a bit to walk. It wasn’t bad though, in comparison to other times. It was tolerable. He watched me carefully, always an eye on my knee when my leg turns inward. He mentioned that when I slow down my symptoms creep back up. He confessed he feared I would struggle to breath as we got even closer to home. No issues breathing yesterday. Yesterday was a good day.
In November I saw another doctor. By chance my doctor rescheduled my appointment to March 2017. Fed up, I wrote a complaint email and surprisingly I was asked if I would mind seeing another doctor. If my insurance covered it I would do so with joy and so they scheduled me in with another doctor.
I thought I was going to get a second opinion. I was nervous and excited, but when the time came and I saw the “other” doctor I realized he was my doctor’s assistant. I was disappointed that it wasn’t a new doctor but still happy it wasn’t the original. The original was a pompous ass. This one, the assistant, was by far much nicer than my doctor. He definitely had a much better bedside manner. Unfortunately like my doctor, the assistant too had his mind made up about what they believe I have, psychogenic dystonia. What is psychogenic dystonia? In short, it isn’t organic dystonia.
Instead what they claim I have is stress related, but not the stereotypical stress he assured me. And he confirmed my symptoms are real, but they are caused by stress not because of rewiring in my brain like organic dystonia. Even when I argued again about my healthier life style again he stress perhaps and underlying issue in my life I am not aware is causing me such pains, and it could be causing me to have dystonic symptoms. Their proof…how inconsistant my symptoms are, constantly changing in severity, body parts and pain. It is important that I accept it he insisted like my other doctor told me months ago. Accept the assistant told me with more compassionate eyes and less narcissism than my doc. Anti-depression medication could help ease and clear up my mind so I can figure out he told me with kind but confident eyes. He implored me to try, to at least try it. I almost fell for it. I almost gave in. I mean who am I? I’m just a mom. A woman with limited medical knowledge. I’m not a professional or an expert in anything, except….except I know my body. I know my body I looked at him teary eyes but confident.
Thanks to my friend sitting next to me who asked me to ask him what the differences where between organic dystonia and inorganic I asked him to list off the differences to me. So he kindly did and true my kind was different from organic and perhaps it could somehow still be stress related, but still….how in the world can my stress be so different from someone else that at times I can barely walk, talk, eat, move. Is it some sort of chemical imbalance, something. It can’t just be stressed.
Stress is powerful, it can really affect the human body and mind he explained. Yeah, I get that I get that, but how then sometimes at my happiest, least stressed and physically healthiest am I at my worst with dystonia? Why do I feel this constant numbness in my muscles? Why is it the more fatigued….I attacked him with questions. Naturally I grew defensive. Naturally I tried hard to hold back my anger and my tears. Naturally my emotions spewed, but still he asked me to try. I asked him about second opinions about getting my muscles tested, my muscles had never been tested. He said I would need to see a neuromuscular doctor for that but they would do test after test after test and he didn’t want to see me go through that. He just wanted me to accept it and try the medicine. I could go on about figuring out why they couldn’t just test my muscles and what the differences in specialties are and why my info couldn’t just be forwarded and how I would still have to wait months before seeing another specialist and how my insurance may or may not cover a second opinion or how thanks to the rising premiums I may not even have insurance next year, but instead I’ll explain how I finally reached a point of acceptance. Acceptance that no one knows what I really have and doctors are still trying to figure it all out and at least I am not dying and most of the time I can walk and eat and breath like a normal person so I quit seeing doctors for now. I sat there and accepted that.
Then I finally looked at the doctor’s assistant and said to him, I guess I will just have to live with whatever this is because I can’t accept what I don’t understand and I’m not going to take medication for something I’m not even sure your sure of and you can’t really explain as to why I have other than to call it stress. My words came out a lot choppier and less confident, but that’s the sum of what I meant. He looked sad for me, sorry for me. He wanted me so bad to just give the medication a try. I so badly wanted him to look at me again, look outside the box, start from the beginning. Was there something they missed, but there minds were made up and I had limited resources with my crappy health insurance and limited supply of doctor specialist in this field and even fewer options in the treatment possibilities. Here take two of these blue pills and call me in the morning.
Its been over a month since that last visit to the doctor. My symptoms have considerably subsided and I am pretty sure now it’s because I am almost at the point of no exercise. I still get in a workout at least 45 minutes about 3 times a week. If I push myself any harder I begin to lock up or spasm. I have been testing this for over a year now. Due to my lack of excercise I have gained another 5 pounds. Between school stress, life stress and weight gain my mood swings are on the rise and my self-esteem is shot. I mentally feel better when I exercise, but physically my body will spasm if I push myself to hard. Catch 22 right? Maybe one day a neuromuscular doctor will read this and treat me pro bono. I can dream right?
This is my journey down the path of invisible chronic illness and learning how to self-care. I have interstitial cystitis, chronic migraines and more. But in between all the chronic illnesses, I have a life...kind of. -Rachel Bob