The Small Details

I wish I had something profound to say. I wish I could hook you with my first line and then reel you in for the rest, but truth be told I am tired. I am too tired to blog, too tired to think. Since I began school I have forced myself to make time to open books read and study. To make time to post on here is even harder.

This past weekend I missed out on a fun bow and arrow target practice weekend with my kids and the sweet man in my life, so that I could stay home and study for another test, another practical. I aced it by the way (95 Sweet!!!), but that was just one of many I will have to sacrifice weekends for. That was just one of many that will make me grumpy, tired, scatter brained and envious of others free time. Before my biggest fear was how dystonia would keep me from graduating and practicing, but lately I wonder why I have chosen to add additional stress to my life. Wait!!!! Didn’t a super experienced doctor with a lifetimes worth of experience tell me that my dystonia was stress related???? Wait what? If I was ever more stressed it would be now. It would be now when my grades determine my future as OTA/OT. More than two C’s and I can get kicked out of the program. This is no joke. I have had panic attacks over it.  My grades determine if I stay in or I get booted out. If I get booted out there goes all this hard work I have already put in to a better future, for my kids, for me, for us. Don’t let the sweet faces of my instructors fool you. Then of course, there is always that underlying stress of if my grades are fine dystonia will decide to suddenly show her nastiest face and render me useless. Everything I have read about dystonia and it usually says it will get worse according to experts who have no idea what it is or why it happens.

I’ve told myself (you know those pep talks)  to take it one day at a time. If I can work as an OTA for at least a year and I make a real difference in someone’s life while doing it than that is more than I thought I would be capable of doing when all this started two years ago. I had no clue at all of what was going on with my body. I’m not dieing (pep talk), sometimes it feels like I am, but I am not. I also like to remind myself that maybe because of my dystonia I will be more compassionate and understanding in my line of work especially with anyone with neurological disorders. This last part is not pep talk. I honestly believe in that respect dystonia has helped me be more compassionate and understanding and even more knowledgeable of the human body, especially mine.

Today was a great boost for my ego too. Not only did I do a great job with our interview-to-make-a-personalized-craft-gift-tote bag assignment, but I also realized what a beautiful thing it was to do, how something so small can really help lift up someone’s spirits and make them feel valuable. The bag made for me by my classmate was so touching I almost teared up but I held it in. The bag I made for the classmate I interviewed helped bring out my stick-man creativity and hoped that with it I could help uplift her if even for a little bit from her woes. I am so thankful my instructor had us do this assignment. It is REALLY nice to have fun assignments between the medical terminology quizzes and the practical and chapter exams. I can’t wait to continue my growth project (I am learning how to make mosaics) and then move on to the clay project.

I like that not everything in my life is about dystonia anymore. For awhile my life revolved around dystonia. I obsessed about it or went into complete denial about. Sometimes I cried for days about it, other days I was just happy to get be able to walk or breath normally. Not being able to breath really puts a lot of the petty things into perspective.

Since I stopped teaching my weekly fitness classes and not doing as much martial arts my dystonia has improved. I haven’t taken a pill in about week. My boyfriend has noticed that too. Does that mean I can’t exercise? I hope not because then my muscles will atrophy. It is sad to watch the muscle I worked so hard to build turn into just skinny.

Is it gone? No! It has improved, but it hasn’t gone away. Its still there. I have had period like this before when the dystonia is barely noticeable that I can barely feel it, not even the numbness, tingling and weakness and then it comes back with a vengeance. Even today during the practical, I lost my balance standing on my left leg (demonstrating mm strength for pelvic tilt). Everyone else thought it was because I just lost my balance but I know deep down that weird feeling I felt standing on my left leg like that was all thanks to dystonia. Luckily no spasm followed.

The last time I had spasm and trouble walking was at the dojo last week, before that I had been to several practices with no problem, but last week was different. I was doing great. I kept up with everyone and did what I had to do. Then half way through practice my leg froze and my foot rooted. I could not take another step.  All of the black belts and most of my classmates understood what was happening. When I couldn’t pick up my leg or foot off the ground and we all had our little giggle, my instructor helped me walk backwards (left foot in foot drop and painfully dragging) to get to the wall and rest. My left arm locked up too. The rest of the class went on and I watched in some envy and hope that if I concentrate long maybe I can visualize into physical practice eventually. If only I wasn’t so much of a hands on learner. My boyfriend can see a move once and pick it up like he was born to know it and me… I use to have a little bit of that. Now its hard for me to connect my mind with my body. I use to be so determined, so strong, so… Now it is so hard to keep myself from quitting. The stares, the embarrassment, the frustration,  my ego…

But today was a good day and that tiny loss of balance was no big deal. At least my leg didn’t glue itself to the floor. Tomorrow I will go to work and then take another stab at the dojo. Then on Wednesday I will go to school and I will keep going until I can’t go anymore.

 

 

 

Vanity Meet Zombie

Sitting here in my Ford escape, parked under the few small tree/bush shade available,

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Dystonia Blues

about 15 minutes before work I’m thinking about dystonia. I’m thinking about the pictures I just saw on Facebook of a little girl with twisted legs. Her mom in the dystonia support group is wondering if loved ones ever get over seeing a loved one like that. Do they? Do you ever get over seeing your loved ones spasming, twisting, twitching, struggling to breath, often in pain or sometimes struggling to eat? Do you ever get over looking at the pain on our faces? Do you ever stop feeling helpless, angry, confused, exhausted taking care of us? Do you know how often we feel like a burden to you (this is our constant worry)? Do you ever notice how embarrassed we are because we worry how we look (hideous) and sound (stupid) to you? Why do you stay?

Since dystonia, especially during dystonic storms I worry about how I look a lot. I’ve never had an amazing self esteem, but it really sucks now. I know its vain, but it is a true emotional worry of mine. When my children see me or my boyfriend sees me with my limbs twisted and my hands contorted, my eye twitching and I struggle to breath I feel them looking at me and I want to hide. I want to move to another room and be alone during my spasm, except I can’t always get up and walk and so there they are looking and trying to help, feeling helpless and I am begging my children to look away because I don’t want them to see me this way. I want them to see me normal. I want them to keep that vibrant healthy strong image of me. I am suppose to care for them, to help them That is the natural order of things.

I am begging my boyfriend to let me be because I don’t want him to see my zombie walk, my twisted arm, my hunched back, my locked jaw. When we first started dating I remember feeling his stare as he watched me walk. He would come to me and place his hands on my hips. He made a comment once or twice back then about the way I moved. I remember moving a little slower so he could watch a little more carefully. I can still walk sexy most days, but other days it’
s a good day if I don’t fall over a twisted drop foot.

Putting Our Lives On Hold

I am grateful that on most days I am for the most part functional. I am grateful that my dystonia has not affected my job or my life in such a profound way as it has affected some of my fellow dystonians. I can count on 4 hands the times I’ve struggled to breathe because of it, on one hand the times I’ve struggled to open my mouth and speak because of it, and on 2 fingers the times I’ve been put in a wheel chair because of it. Yeah, I know it all sounds scary having to go through any of that even once. Trust me it has all been very scary for me to have to go through, but I can still take care of my kids, work, cook meals,   practice my martial arts, go to school and so on. Yes, dystonia has slowed me down a bit, during bad dystonic storms a lot, but I still manage to get up and going the next day.

Sure, I have to take longer breaks, be more careful about my workouts (no more than an hour of intense workout)), rest more on the weekends, get a good amount of sleep and I have to continue to eat better. I have to be diligent about it. That is not always easy either.

Despite my efforts the dystonia never goes away. Though I may not always have spasms that debilitate me I can almost always feel a “weird numbness or weakness to my left limbs”. The superiority of my right side over my left, especially when I lift weights or furniture or run or do yoga and so on, is incredible too. My left side is, what feels like my weak side. I know my left side is there and its mine, but I have to work extra hard to train my brain to control it, though I am not exactly sure what is causing it to malfunction.

Ugh, I went on a tangent again. My point is, in my opinion, my level of dystonia is mediocre in comparison to those who have had their lives completely altered by dystonia. They cannot work, they can barely walk. Some of them can barely eat or speak. Just go to YouTube and type in dystonia. There are hundreds of video of babies, kids, young adults and older adults giving all of us glimpses of what it is like to have dystonia. There are more than a handful of Facebook groups, meetup groups, twitter groups and a lot of other organizations all over the world talking about their symptoms and how little help there is to treating it. So, my question is WTF is there such little awareness about this disorder?

According to American Association of Neurological Surgeons, “As many as 250,000 people in the United States have dystonia, making it the third most common movement disorder behind essential tremor and Parkinson’s disease. It is a condition that knows no age, ethnic, or racial boundaries – it can affect young children to older adults of all races and ethnicities”.  This isn’t a new disorder either. There are people who have been living with dystonia for over 3 decades. It angers me that today, with all the technology we have I can go to a movement disorder specialist and all he wants to do is push another pill on me and tell me I need to keep seeing my therapist. People in worse condition than me are also told to take a pill and see a therapist. Who do we need to see to prove that this is real? We are not making this up. Who would want to live like this? Not me.

I read dystonia is progressive…

I want to become an Occupational Therapist, (I start the OTA program the week after next) and not worry I will have to quit months after I become one. I want to earn my black belt in martial arts. I want to walk not wheel down the aisle with my future husband. I want to dance with my children at their wedding. I want to hold their babies without fear of dropping my precious grand-babies. I want to wake up tomorrow without worrying that by the end of the day, if it’s a bad day I may not breathe for a few seconds over and over again until I panic that the next time it happens I wont be able to breathe at all because my muscles wont unlock no matter how hard my boyfriend tries to relax my muscles or if the hospital will even know what to do with me, because many doctors still don’t know what this is. Are we suppose to put our lives on hold until they figure it out, until they find a cure? I don’t think so.

This lack of awareness is going to change. In the following days I will be posting Question and Answer interviews of some of my fellow dystonians generous and brave enough to post a little bit more about what it is like to have and live with dystonia.

By the way did you know September is Dystonia Awareness Month?

If you get the chance take a look at James Sutliff, a fitness model with dystonia, who is kind enough and brave enough to post videos of his battles with dystonia and his progress with speech therapy.

My first post: The Spirit Is Strong In This One

 

Babies, Bodies and Baclofen

So my boyfriend and I have been on shaky grounds recently, not because the relationship is about to go south. No, instead it is moving forward and we both want it, but it is so unclear as what is too  come for the both of us. Dystonia has changed everything.

When he and I first started this relationship I was sure I wanted to end up with him and have his babies, even though I already have babies of my own. Then high blood pressure took hold of my body and didn’t let go no matter how healthy I already lived or how healthy I continued to live there after. For a short period I thought WTF!? Why even make an effort if I have it no matter what I do, and then my little sister who seems to be taller and wiser than me said, “If you weren’t living healthy that high blood pressure could have killed you already”. I saw her perspective of it. I had to agree.

Still, my boyfriend knew if I wasn’t taking my BP medicine that could be dangerous for me and that look in his eyes of wanting to have his own babies with me changed. Then dystonia invade my body and that look in his eyes completely disappeared. He wouldn’t even talk about it or he would just brush me off and say it was too dangerous. And that was that. He didn’t even hear me out. He didn’t even give us a chance to talk to a doctor, but I guess since doctors don’t know jack about dystonia how in the world would they answer our questions about pregnancy and parenting during dystonia.

So, I began to do some research: pregnant with dystonia, pregnant dystonians, having babies with dystonia, is it possible to have a safe pregnancy with dystonia and so on.  There is so little information about dystonia its incredible. The information on the internet on dystonia just explains the basics about dystonia, but there is no elaboration, there is no unique case by doctors and their ideas on it. What ever is on the internet about dystonia is created by dystonians themselves, videos, news, articles, blogs, vlogs about dystonia are all created or encouraged by my fellow dystonians and our effort to create dystonia awareness. Thanks to a blog I gained more insight on the affects of dystonia during sex which was a very hard topic to talk about to me at first. Then I got over it.

Thanks to a blog I also had the opportunity to read day by day what a poor woman went through during her pregnancy, the pain, the loss of hope, the hope renewed, the surgery, etc. I showed my boyfriend. I told him about it. I told him it wont be easy, but I told him it might be possible. He still kept pretending he just didn’t want to have kids, but I knew deep down he didn’t want any because he was afraid me or the baby would be hurt and he didn’t want to loose either one of us. He said what if you spasm during pregnancy or stop breathing. I knew then I caught him in his sweet lie and he could no longer deny he wanted a baby.

Earlier this week he said the words out loud, “I want to have a baby with you. I was scared. I am still scared”. He began to list what if scenarios. I began to list some possibilities. We talked a bit. Talked about the timing. We would have to wait at least two years because I was about to begin the OTA program in two weeks. We talked about my age. I am almost 8 years older than him and not to off from 40. We talked about possibly needing to take me off my meds for at least 6 months prior to trying to start making a baby. We  both stayed quite for a bit. We knew the dangers that would pose. We need to talk to the doctors I reminded him, but at the same time that came out of my mouth we both knew doctors don’t know what they need to know about dystonia how will they know about pregnancy and dystonia.

Here I am, not to far from 40, about to start a second career, 3 of my own children, a young boyfriend, a body that is falling a part and I just want to cry because I feel like because of me he is missing out on an opportunity to have his own babies. I’ve told him before I would let him go, that I understood if he needed to leave, but he keeps telling me he isn’t going anywhere. He is here to stay and I can’t help want to have a baby with him. FU dystonia! FU!!!!!! We will expose you. We will defeat you!

As Needed

At my last doctors visit with my PCP, she was delighted the medicine is helping my symptoms. I admitted to her that I forget to take it sometimes. Surprisingly she told me it was a good thing I was not taking the medicine everyday. She explained that she didn’t want me taking the medicine everyday, but instead just to take it as needed. I explained to her taking the medicine as needed is difficult to do, because baclofen makes me drowsy and I need to be able to function throughout my day and so I can only take it at night at bedtime, but most of the time my symptoms do not happen at bedtime.

Still I was excited of the idea of not being tied down to the drug, so I decided to experiment with the idea of only taking as needed. For 5 days I was able to go without the medicine, except for the numbness everything seemed fine at first. Then it was time to really test how well my body could handle it without the medicine. So far not bad. Not only was I 5 days off the medicine, but I had taken a month off from much of any exercise at all (yes I still had a few episodes during the month, but not much) including martial arts. The day I returned to class my symptoms returned mildly with tremors and mild spasms, and terrible foot drop, but I managed to make it to the end of class. It was hardly much cardio at all that evening, but I was still breathing like I had just run a few miles. Still I figured it was a manageable tolerable evening. At home I went to sleep earlier than usual and I made sure to take my medicine right before bedtime.

A few days later during interrupted intimacy with my boyfriend and a bunch of laughter from the interruption, I began to feel really tired suddenly and not too long after I began to spasm. The spasms kept coming and me eventually kept from breathing in or out for seconds at time until he pushed on my diaphragm or a movement allowed me to gasp for air. This went on for several minutes into the night. He was afraid to let me fall asleep, afraid I would stop breathing. I knew I would not stop breathing completely, but the terrible feeling of not being able to breath was to say the least traumatizing. I asked for my pill right away. He already had baclofen in hand.

I have been afraid to not take the pill since then. Another thing I have noticed is that whether I take the medicine or not the numbness and weakness on my left side still exists. For example, yesterday while trying to carry furniture into the house as I am picking up furniture I feel like I am really giving it my all to help and my right side is, but my left side isn’t.  Also on some days more than others I am sensitive to being touched on that side. I don’t necessarily go into spasm when I am touched, but I really don’t like the feeling of being touched on my left side. It is difficult to explain that to my kids when they try to hug me. I don’t want them to be afraid to touch me.

I’m Not Depressed I’m Freaken Pissed

 

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Depression by Eloquent Existance

The good news is that today, after months of waiting to see one, I was finally able to see a movement disorder specialist. As expected the moment I opened the door to my boyfriend’s dodge truck to hop out and step down on to the parking lot and then took a step forward, my left leg began to twist in and buckle. I’ve noticed that more often than not my spasms can be triggered by major visits to VIP doctors. The closer we got to the office the more I twisted and spasmed.  I also noticed I began to walk slower.

On the bright side, my randomly visible symptoms would be fully visible to the doctor today. For me this was proof to him that this wasn’t in my head, that I am not making this up. In fact for the first time in over a year I was put in a wheelchair again. The doctor’s assistant called for a wheelchair for me to use as we transferred rooms because he was terrified I would fall again as we walked to it. Just moments before, as I tried walking to the next room (the one we were in was too hot for the assistance’s comfort) my left leg turned inward and I fell to my knee. Ouch!

So, in a wheel chair I went, to make him and my boyfriend feel better. Me, I had to swallow a lot of pride again. I would have preferred just walking backwards, but I could see the worry on their faces and in their demeanor. Before I was wheeled into the new room he wheeled me to the video room. He wanted to take advantage of the fact that my symptoms are visible and record them for the doctor. I signed a consent form to allow doctors to use my video for case studies and documentation. The assistant asked me to raise my arms, move my legs, try to walk etc. As always my left side decided to be rebellious and embarrass me, twisting, locking and the wiggles…oh they only got worse. I was then wheeled off again to the new cooler room.

In the new cooler room that he was not used to being in, the assistant fumbled with the mouse cord and explained how rarely he was in those rooms and that the others were occupied. He continued on and asked more questions about my symptoms, my history and so on. He noticed my tremors, asked about the spasms and then finally got up to do some hands on physical test. He used that tool doctors use to check for reflexes, a silver tiny hammer, and taped both my right and left limbs in different areas, also checking for my ability to feel temperature. My right side handled it all like a champ, my left side went into spasm after spasm. It was torture. Toward the end I even felt a charlie horse on the bottom of my left foot and in my ribs….All of it sucked royally. Did I mention the wiggles/tremors had me in constant movement? It really takes a toll on the body to move uncontrollably for so long. I was so exhausted after all of it and the the tears… I tried holding back the tears several times. I wasn’t always successful, especially not in front of the video camera, but I tried.

Finally, he told me to rest and wait and try to relax if at all possible. He said the doctor would be in a few minutes. In a few minutes the doctor was in. The doctor, from this very prestigious medical place I have heard raves about, walks in and introduces himself, sits down at the computer and listens to his assistant reread all the notes he had just taken from my answers to his questions. He reads the notes out loud in front of us, but for the doctor as the doctor writes scribble notes on the margins of some printed sheets he had in front of him. I couldn’t make out the words of the writing and I gave up when the wiggles started back up. The doctor did a few double takes in my direction. When his assistant finished reading the doctor turned to me and asked me if there is anything else that was left out or that I need to add. I couldn’t think of anything. The doctor asked  me to extend my arms. My left arm was back in a spasm so I needed to use my right arm to lift it. He asked me to walk across the room. When I couldn’t walk forward, I asked if it was ok to walk backward. I did that earlier for the video too. They were both surprised by it and asked me how I discovered I could do that. I told them about the research I have done and the story about the female marathon runner I came across. She learned she could run backwards to keep going. I figured I could try walking backwards. It worked for me. I told them I researched what I could to learn as much as possible so I could be as functional as possible. They agreed with the idea. A few more questions and test were done. Of course the usual questions about medical history were done.

The bad news came not when he confirmed that he believes I had dystonia, but when he told me the type of dystonia he thought I had, psychogenic dystonia. It hit me like a punch to the face. I really struggled with the idea. Silently I agreed when he said it is much better than having any form of brain damage or something worse, but what wait WTF?!!!

As respectfully as I could I disagreed with him. I told him I do yoga, martial arts, I eat healthy, I exercise, etc. Yes, I have stress, but who doesn’t. He rebutted that all my symptoms point to psychogenic dystonia. He pointed out that some people have underlining stressors or depression they aren’t aware of. He sat up proud and let me know he has been doing this for 40 years and he knows what it looks like and he could refer me to other doctors or I could get second opinion, but in his experience his patients who have accepted the diagnosis get better faster and those who don’t accept it don’t get better. He continued explaining in a very blunt and honest fashion that it would be wise for me to accept the diagnosis so that I could get better. He then said he was going to prescribe an antidepressant for me. I could choose to take it or not. I tried staying calm and tried to respectfully argue that I wasn’t trying to ignore his 40 years of medical experience and yes I am stressed, but again who doesn’t have stress in their life. Unlike most people that do though, I actually follow the right steps to deal with it. I repeated my list of healthy living again (not extreme healthy living) and continued with, if I have any depression it is because of the dystonia getting in my way, not the other way around. I even mentioned that I was talking to a counselor since my divorce to help me cope…And before I could finish my statement he just cued into the word divorce and used it as ammunition to confirm my stressor….He didn’t wait to hear how long ago my divorce happened or how I am happier now than I was when I was married or about all the good things that are happening in my life right now, including my sweet boyfriend. So, I pushed through with questions like,  what else is someone suppose to do to get rid of stress? Again who doesn’t have stress and why do episodes of dystonia happen when I am at my happiest like during great sex, spending fun time with my family, or during martial arts class (my best de-stressor). He said “good questions”, but he had no answers. He could refer me to a specialist that deals with my form of dystonia and to psychologist, if I need he repeated. He stuck to his belief of what I had, wished us a good day and suddenly I felt myself fuming. I wanted to say, “F! U! you stupid narcissistic doctor! I am not a freaken number. I’m real you ass! This stuff that’s happening to me it’s real! I have no control over this. I don’t even know when it is going to happen”.

A few minutes later his assistant came back in and asked me if I had any questions. I stayed as calm as I could if for no other reason, but because my stupid Obamacare government insurance for which I am lucky to have, but unlucky enough to have to  pay $300 a month only covers this medical doctor. I am stuck with him! I cannot piss him off. Right now he is like a God to me. A God that I strongly believe has misdiagnosed my dystonia and there is not a damn thing I can do about it right now. If I don’t take the antidepressant he will blame my continuing symptoms on my lack of following his advice when I see him in 4 months. That’s right I have to wait another 4 months before I can see him again. If I take the medication and he is wrong than I am on another set of meds that are filled with chemicals not natural to my body and not needed by my body. So much for not doing drugs in high school. Now, I will be a walking freaken pharmacy. Did I mention, in some of the research I did certain medications, like antidepressants are the cause for dystonic symptoms. I feel like I am damned if I do and damned if I don’t. That’s a stressor in it of it self and I didn’t need it. Thanks doc!

But what if by some chance he is right? Does that mean I’m crazy and I have been doing this to myself. That’s freaken crazy! I’ve been on depression medicine before. Almost 10 years ago when my husband (ex now) was doing months of training to be deployed to Iraq not too long after. Who wouldn’t be depressed. Geeze give me a break. I was morning his absence and possible loss, not to mention I had two kids to take care of on my own. That’s more of situational depression. It isn’t permanent if taken care of. Yes, our marriage had already been on a rocky road for years, but again situational. So yes, I was depressed and I sought help and I was not ashamed and I took medication to help because exercise and eating healthy was not enough to keep me happy and sane. I was told it was a chemical imbalance in my brain and the meds would help balance it out. The medicine did help, but today…I am not depressed not in anything except maybe the trouble that dystonia is causing in my life. There is no shame in admitting depression. If I felt I had it I would admit it and take care of it, but I am not depressed. I am pissed! And if this has to do with stress, well shit… aside from doing what I am already doing, what else am I suppose to do.

Say the doctor is right and I have depression and anxiety and/or stress why do I have dystonia too? What in my body is saying,  “oh! you can’t cope like other people so let’s make life more miserable for you and cause you to twist and wiggle in pain so much so that sometimes you will end up in a wheel chair. Oh oh oh and just to make it all the more confusing lets just do it on your left side”. Ahhhhhhh! Damn doctors and their 5 minutes visits with us!

I am home now. I am going to curl up into a ball under a blanket on the sofa, in the dark closes the blinds of the living room, binge eat fruit (i have no junk food in the house), binge watch mystery, crime investigation, and land invasion sci-fi, feel sorry for myself, make myself feel better with Kevin Hart comedy clips on Youtube, cry a bit, confirm my clients for tomorrow, maybe do a few chores, maybe look up scholarships for school and then do more research on what I have and video tape all of my dystonic episodes from now on. Then I am going to bombard the doctors inbox with videos. Yep that’s my plan.

Denial is My Frenemy

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Uplifting by Eloquent Existance

When I was in high school I fell in love with a looser, except I didn’t know he was a looser until we broke up and I stepped out of the box and grew up to see what kind of person he really was.  But between the breakup and my heartbreak I spent days, weeks, months, almost years trying to figure out why someone as beautiful and as kind and as funny and talented as he was could  hurt me so bad. I thought he loved really loved me

Amongst my friends (but never around him) I cried and vented and vented and cried. I went weeks without eating properly. My sister had to force me to eat a sandwich. Any update about him I had to tell my friends about it. Even when he and I moved on with other people, I emotionally couldn’t figure out why I wasn’t good enough for him and I talked and talked about it until I began to see my friends pretending to listen.

There is nothing worse or more annoying than a person that obsessively goes on and on and on about something. I mean I get mourning. It’s important to talk about your troubles, it helps with healing and growth, but when is enough enough?

There was this girl in college. I don’t remember why, but she was in a wheel chair, had been most of her life. She had a lot of physical obstacles to overcome physically, but mentally she was sharp as a whip, especially in our advanced French class. Still, not many of us where too happy to work with her during group work. Though most people would have assumed it was because of her disability, on the contrary as smart as she was with her on our team it would have been to our advantage, but there wasn’t a day or an hour that didn’t go by that she didn’t stop talking about her disabilities. She would always turn a normal fun conversation into something about how hard her disabilities make it for her.

I tried putting myself in her shoes, really not easy to do with so many obstacles she had to over come and I tried to be more patient. I told myself she must be in pain, or maybe no one’s tried to be her friend before or maybe she doesn’t have anyone to talk to so she tells everyone, or maybe she isn’t aware of her obsessive talk about her disability. It would have been nice to know something else about her, something not sad, but it seemed every path down her past or present was depressing. Had I been more mature than maybe I would have realized she just needed a hug, but back then I wasn’t very touchy feely kind of person.

Today, I suffer with this undiagnosed disorder one doctor thinks is dystonia and all the research I’ve done proves him right. In July a movement disorder specialist should tell me if what my neurologist thinks is true. In the meantime I’ve grown tired of hearing the word dystonia. I am avoiding the online support groups. Everyone is always talking about the medicines they’re taking, the symptoms they’re having, or the terrible pain they’re in accompanied by exhaustion. On occasion there are positive post, but they are rare and few between. I can’t even stand to hear myself talking or writing about it anymore. This is why I haven’t posted in a while. I haven’t posted how my speech was slurred last week and how my muscles locked and my boyfriend kissed me so sweetly to help me relax and hopefully unlock my jaw. It was the sweetest kiss I have ever had and it did help the muscle in my jaw relax for a bit. What wasn’t sweet was how scared his face looked or how I saw tears in his eyes. I felt so terrible for him and for my kids who luckily were upstairs getting ready for bed and so didn’t see it happen, but I know they will someday. What wasn’t sweet is when he realized and said and I secretly thought it, “It’s getting worse”.  Just a few minutes later when I was able to speak normally again I looked at him and asked him for the medicine even though we both knew it was early.

I don’t want to post that. I didn’t want to be that broken heart girl in high school or that girl in the wheel chair from college bringing you down with my sad life. I didn’t want to make you feel like my mom makes me feel when every single time my mom visits me, even on my birthday she tells me about how bad my dad is doing or how one more of my distant cousins or aunts or friend of a friend is dieing or died of some disease. Mom do you have any good news? Please any good news, a joke, a good memory. I see enough bad news on TV with mass shooting and poor babies and children beaten and abused by their own parents.

For a moment I want to pretend everything is ok. I want to feel like everything is okay. I don’t want to be a Debbie Downer and bring others down with my sad news, there is enough of that already. Everybody has problems, everyone is going to die of something, everyone is going to hurt from something.

You know what’s good in my life, I have 3 very smart beautiful healthy children who make me laugh and love me so much they don’t underestimate my abilities despite my disabilities but when my pain kicks in they don’t treat me any differently or act any differently. They still squabble like little turds and are driving me insane but when it matters, when they know it’s a bad day, my oldest helps with dinner, my middle one brings me water and a blanket, my youngest hugs me and loves me. My boyfriend is beyond amazing for what he’s done for me. Have I mentioned that he has saved my life a couple of times, but he never lets me quit and he doesn’t feel sorry for me even though he knows how bad my symptoms can get.

My mom, Debbie Downer that she can be has also been the reason why I am such a strong woman, determined, and a good mom. My siblings….I could go on.

I know talking about dystonia is important. I know it’s important to get the sad and the pain off our shoulders so we can move on. I know it’s important to make people more aware of it not only so they understand (though really it takes one to know one) and also through awareness hopefully one day a cure, but what I also want everyone down in the dumps and obsessively talking about it that we need to take a break from the obsession. We need to give our loved ones a break from the dystonia obsession. We need to stop being such Debbie Downers and not let dystonia win. Dystonia is not who we are and though it may feel like it’s taken over, like it’s in control, it isn’t. Don’t let dystonia win. Don’t let it alienate your body, mind and spirit. Don’t let dystonia dehumanize you. Take a moment to look at what is wonderful about you, what is amazing about your life, to show the world that your are a person.

I know it’s hard. I say all this knowing it is hard and the worse it gets the harder it will be to be positive, but maybe as a support group we should have more jokes.