Saturday, February 27, 2016

My Story-Continued...

After I finished the three months of outpatient intensive therapy I found a part time job working for an interior designer as her assistant. The only way I could describe how I felt was shell-shocked. I constantly felt like I had electricity and poison running through my veins and the pain in my neck and body was getting worse.  I always took pride in being a hard worker and I had such a great love for design but felt useless at this job. I was mentally and physically exhausted. To make extra money I took a job waiting tables a few nights a week. I was having a hard time concentrating and keeping up with the job. I started having bouts of insomnia again. Within 8 months I ended up losing both of these jobs because of my inability to concentrate and work effectively. In all of my years of work I have never been fired or let go of a job. This absolutely crushed my soul and I felt so lost, sick and so helpless. What happened to the girl who used to be fearless? What happened to her creativity and desire? Where did her passion go? Why am I not the mother I always dreamed I would be? Why am I just going through the motions and not enjoying life? How is it possible I went through all this therapy and I'm still all f**ked up?

After I lost those two jobs my father-in-law was kind enough to hire me to work at their family business. My husband was at his wit’s end as anyone would have been in this situation. I knew something was wrong but all the doctors said I was physically fine and I kept taking all the medication the psychiatrist had given me. I now felt like a zombie on top of all of the physical issues..  I was doing some web design work which I enjoyed and I also found a job working part time at Crate And Barrel. I was still feeling the same symptoms as before, but I seemed to able to manage. I had come to a point where I accepted the fact that I had a sleep disorder and chronic pain and would have to learn to deal with it. I stopped the therapy sessions and my primary care physician prescribed an antidepressant and xanax along with the trazodone I was taking for sleep. I was taking all this medication and still felt all the same symptoms.

Eventually, I applied for a full time position at Crate And Barrel and got the job. Once again, I did not feel that my full potential was being realized and I had a difficult time keeping up with the job. I had a hard time concentrating and keeping up with the physical aspect as well. My neck pain seemed to be getting worse every day and I was going to the chiropractor 3 times a week for help. All of my paychecks were going to pay medical bills. In July of 2014 I noticed that I was having a hard time turning my head to the left. In August when I was driving my car suddenly my head  started shaking uncontrollably and I had to use my left hand to hold my head still so that I can drive focus on the road. The chiropractor told me that I may have spasmodic torticollis and they could  help me work it out. One night I was trying to prepare dinner and I sliced my index finger open with a knife. I went to my primary care doctor for stitches and he referred me to physical therapy once I told him about my head and neck issues. I tried physical therapy for 4 weeks and I was just getting worse and felt like someone was pulling my head to the right and I couldn't look to the left. Somehow I was still going to work. I felt like I was losing my mind and I'm sure my coworkers felt the same.

To be Continued...

Saturday, February 20, 2016

Fake it Until You Make it...

 I am trying my best to stay positive while experiencing so much pain. I feel like I'm faking it and putting on a good face when I am around my children. I have some days where I will literally cry for hours when I'm home alone and then laugh at myself because it is all so ridiculous. I feel like a lunatic.

 I have read The Secret and in the book they discuss how you must think good thoughts and even when you are in pain think about how good you feel. I am really trying but some days you just snap and say it's bullshit. But I know it is not and it does work. you have to believe it will work. My husband is sometimes exposed to these outbursts of emotion and he holds me and tells me he wishes he could take it all away, while I'm thinking "why aren't you running away as fast as you can?" On days when the pain is not so bad I always overdo it. I'm so excited to be able to change the sheets or cook a meal and not be doing some form of stretching or therapy. For those days I am thankful.

I am grateful that I am experiencing less pain in my arms and legs. I am grateful that I can walk. I am grateful for my healthy children and my supportive husband. I am grateful that my family is doing everything they can to help me seek the best treatment possible. I am grateful for the friends that have really stood by me during this difficult time and accepted phone calls from me that they knew were likely going to be unpleasant. ( sometimes I would even surprise them by not crying!) I am grateful for my home and my cat who snuggles with me when he feels like it. I am grateful for the clean, hot water that soothes my aching muscles every night. I am grateful for the comfy bed and medications that help me sleep and take the pain away at night. I love to sleep. Falling asleep is difficult because of my head tremors, but once I'm out...there is no pain. Most days I would dread waking up to realize another day of pain lay ahead of me, instead of dreaming that I was running and carefree. I have to believe in that dream. I have to hold on to hope and accept that this is my reality. I have got to stay strong and put a smile on my face.

 I will fake it until I make it. 

We just booked my next trip in April for re-evaluation and testing of my eye movements and coordination at The Plasticity Brain Center in Orlando, Florida. I will do my best to share my journey with you.

Tuesday, February 16, 2016

"Take the first step in faith."

"You do not need to see the whole staircase.  Just take the first step."

Dr. Martin Luther King Jr.

Monday, February 15, 2016

Professor Carrick Interview

Last Summer I taught myself how to knit. Yep, I said knit.

These videos on YouTube were fantastic. Knitting helped me get some movement and coordination back into my hands. My shoulders would get sore after about 15 minutes, but it was fun to learn something new. Knitting is also a good way to reduce anxiety and stress because you are so focused on the project. Give it a try! 

Bamboo Knitting Needles Set (18 Sizes From 2.0mm to 10.0mm)

The First Signs of my Dystonia

When my son turned one, I decided to look for a job and started working full time at a kitchen and bath showroom as a designer and salesperson. On my first day I had to leave because I was sick. I went home and was vomiting for two days. We had put Micha in daycare and I figured I'd just had picked up a virus from him. Four weeks later I was sick again with a cold. I felt like all of my energy was drained and all of my symptoms were getting worse. My left ear would turn bright red and get very hot and I would also get ringing in that ear. Of course I went to  a ENT specialist and  they found nothing. I ended up calling off of work quite often and the stress was really getting to me and causing friction at home. I went to the emergency room at least three times after work because I felt so ill and was having a hard time swallowing and breathing. They said it was an anxiety attack. 

I finally went to an immunologist and after a series of bloodwork. I was diagnosed with selective IGA deficiency. A normal average number is about thirteen and mine was one. My immune system was shot and unable to fight off any form of virus or infections. I was treated with pneumovax which is a pneumonia vaccine that would reboot my immune system. The vaccine took a while to kick in but eventually I stopped getting sick so often but my neck pain and fatigue did not go away. After 8 months at this job I had a night where I felt completely panic stricken and could not sleep. This turned into weeks of total insomnia which I have never experienced before in my life. I literally did not sleep for 3 weeks and thought I was losing my mind. I lost 8 pounds in one week. I was worried sick and felt like I was dying. One night I came downstairs at midnight and told my husband I was going to get help. I drove myself to the Western Psychiatric Hospital where I waited 8 hours to be admitted. I was so scared and so sick. I could hear people screaming in the emergency room. They put me in a private waiting area with a bucket that I could vomit into until I could be admitted. I was taken upstairs to the trauma unit where I was asked remove all of my clothes and hand over all of my personal belongings. You have to sign a form acknowledging that you will not be released until the doctors say that you are able to go home. I could not stop shaking. 

Over the next few days I was evaluated and diagnosed with post traumatic stress disorder and generalized anxiety disorder. (When I was 12 years old I came home one day to find my father after my mother had shot him 5 times. Thankfully, my father survived and that's an entirely different story that I will write about some day.) I had already gone through many months of therapy to sort through the PTSD years ago. I kept telling the doctors that I would feel physical symptoms like nausea or trouble swallowing or losing hearing or ringing in my left ear and then I would panic.The doctors said that most childhood traumas don't show up until adulthood so it seemed to make sense at the time. I spent eight days in the hospital and then had to do three months of intensive outpatient therapy. I was also given medication for anxiety and sleep. It was truly a nightmare. When you come home from a mental institution everyone treats you differently and I was forever changed by that stay.

To be Continued...

Saturday, February 13, 2016

Functional Neurology and Elite Athletes

Functional Neurology and Elite Athletes

My disorder is called Meige’s Oromandibula Syndrome and has caused a secondary disease called Cervical Dystonia.

My disorder is called Meige’s Oromandibular Syndrome and has caused a secondary disease called Cervical Dystonia. For the past 10-15 years I have been struggling with various symptoms trying to get a diagnosis. Unfortunately, Meige’s syndrome is almost impossible to diagnose and cervical dystonia can only be diagnosed once it is visibly noticeable. In the beginning, my symptoms began as migraine type headaches and muscle cramps. I have always had trouble sleeping and felt like someone had poisoned me. 

In 2004 I decided to get braces because my teeth had started to crack. My orthodontist said that I was grinding and  clenching my teeth while I slept. In February of 2009 I was 40 years old finally about to graduate with my degree in Interior Architecture from Chatham University. I was in the last month of my internship at The Design Alliance Architecture Firm. I also found out I was pregnant with my second child. There was also the recession going on so I was basically screwed as far as getting a design job. I ended up waiting tables until my eighth month and then I ran out of gas. During my pregnancy I was very emotional and felt “off”. I would wake up with night sweats and my feet and hands would cramp-up while I was sleeping. Once again, normal symptoms of pregnancy-so I just went with it.

My son Micha was born in November of 2009. One month later on his first Christmas I had to go to the emergency room because I was breaking out in hives and having trouble swallowing. I was told I must have had an allergic reaction although I've never had allergies in my life. I thought perhaps since my husband has so many allergies maybe it was transferred through the pregnancy to me which the doctors said can sometimes happen. The next few months went by fairly well but I noticed my energy level was low and I was having trouble losing the weight I had gained during pregnancy. I was also having muscle and severe neck pain. I chalked it up to being older, hormones, possible perimenopause and taking care of a newborn at 41.

To be continued...

Thursday, February 11, 2016

This Photo was taken on our family vacation two months before the dystonia was visibly noticeable.

Wednesday, February 10, 2016

Foo Fighters. Walk

The Future of Functional Neurology

The Future of Functional Neurology
July, 2015

I'm sitting here staring at a blank screen wondering where to begin. 

I just finished watching a documentary about the life of Kathleen Hanna called "The Punk Singer". It is a great documentary and is available on Netflix.


I had the pleasure of meeting Kathleen in the early nineties when the band I was in, the Barbed Wire Dolls were lucky enough to be the opening act for her band Bikini Kill
I remember being amazed that she knew all about our band and that she was a big fan of ours. She was so incredibly sincere and genuine that it made a lasting impression. I was floored and will never forget that show.


Back then (1990's) it was hard to stay in touch with people you met. There was no internet, just postcards and telephones. I never saw her in person again. I watched the documentary about this amazing woman who had the world by the balls and was completely fearless. So many emotions were running through me as I watched this. Pride, envy, awe, and sadness and generally missing that feeling of being carefree and unstoppable that only youth provides. 

Seeing Kathleen struggle with her late-stage Lyme disease in this documentary made me feel connected to someone who can understand having their life and creative force ripped away and fighting every day to try to get it back. I love that once again she put herself out there and shows the brutal truth of chronic pain and illness. I am so happy for her that she was able to come back strong. GO Kathleen, GO!

Monday, February 8, 2016

Muscles Involved in Cervical Dystonia

What does it feel like to have Meige/Cervical Dystonia? One step forward, three steps back...

Let me describe how my Meige's/Cervical Dystonia feels.

  • You feel like you may have been poisoned and then you feel nauseous and sometimes dizzy. 
  • Then you start to feel panicky because you do not know why this is happening. (Before my Diagnosis) 
  • Your mind is sharp yet you try to control your body movements and it does not work. 
  • The pain is excruciating. 
  • It feels like someone is pulling the back of your head by the hair and your muscles have turned into coiling serpents under your skin. 
  • You feel possessed. 
  • You have anxiety and panic attacks. 
  • For any woman who has given birth and experienced labor... I can equate the feeling of contractions to the dystonic movements as far as having no control over what your body is doing.
  • You scream in your car. You scream at home. 
  • You curse God and you pray to God.
  • You cry A LOT. Anywhere, anytime...
  • You feel like you had 20 margaritas and none of the fun.

The part of the brain that is damaged when you have Meige/Dystonia is the Basal Ganglia and it controls muscle movement and emotions. You isolate yourself and lose many friends because you are in such a state of pain that is all-consuming. You also find out who your true friends are. You want to crawl under a rock and die. I read an article that a woman with CD said "Dystonia does not kill you, but you wish it would."

I'm not telling you this because I want your pity. I'm telling you this because these are the facts. Take a step back and be thankful and grateful for everyday that you have good health on this earth. 

I am grateful for every day that I make progress and terrified on days that I feel like I'm not. I am thankful for my husband for sticking with me and telling me I'm beautiful at my worst...and my children who keep me going every day. I am thankful to have such an amazing team of doctors helping me.

One step forward, three steps back...I am walking when others cannot and I am thankful.

Thursday, February 4, 2016

Dealing with Dystonia. 

This interview is a simple explanation of dystonia and goes through traditional medical approaches to treatment.

Monday, February 1, 2016


This Nifty Infographic Is a Great Introduction to Neuroplasticity and Cognitive Therapy

Breakthrough Practices to Heal the Body and Ignite the Spirit


Ana Forrest has been changing people’s lives for nearly 40 years.  Now this innovative yoga master draws on her own amazing life story to reveal powerful physical, emotional and spiritual practices for healing and growth.   In her new book, Ana offers a guide to living fully in our lives and bodies, allowing us to discover the healing power of our body’s wisdom.  From “stalking fear” to “walking free of pain” and “learning the art of truth speaking,” Ana distills and shares wisdom from her own life experiences, making complex ideas practical and easily applied, offering a new blueprint for life.

This book is an excellent read if you need some insight and inspiration to learn to help yourself heal your own body. You can purchase this book HERE.