It has been 6 years since cervical dystonia reared it's ugly head. For me it was like a dark cloud filled the sky and removed all the joy from my life. My saving grace has been my belief in my body's own healing power. The body is a beautiful creation and when given the right tools it will flourish. This has been a long winding road and I am almost free. Let's start back at the beginning.
It was the summer of 2006. I had the best summer of my life. I was a budding business owner. I worked part-time for an entrepreneur in a parallel business. I was also selling my artwork and working on a children's book. I had met a great man. He was stationed at an army base in Hawaii. I dropped him off at the airport exhilarated and tired. I headed for my part-time job and then home. I woke up a few days later with some horrible bites on my body. I know what you are thinking but it was not anything he did. My house was infested with spiders which I had thought was no big deal. Spiders couldn't harm you. I was wrong. I had an allergic reaction to them. Skip ahead to January 2007. I was in Maryland saying goodbye to my mom. She was dying. I had a spider bite that was infected to the point that there was a dime sized hole in my stomach. I went to my mother's doctor who prescribed antibiotics. I took those antibiotics on and off for 2 years. It took that long to destroy all the spiders in my house.
Skip ahead again and it is 2009. My father has passed away. Over these past two years I have had strange symptoms. My neck is a bit unsteady. I am always cold especially around my neck. Often I feel like my head is too heavy for my neck. I went to a standard chiropractor and continued to take antibiotics whenever I had a spider bite that wouldn't heal. By May 2009 after my head had slowly been tilting toward the right, my head stuck there. It was just turned over to the right. I went to the doctor. They gave me some more pills. I continued to go to the chiropractor and to a massage therapist. I continued to get worse. At some point my head started to spasm. Still no one knew what was wrong. I scoured the internet for answers. I continued to workout, see the chiropractor and go to different massage therapists. I continued to get worse. In 2011, I found an article about Torticollis. I called the National Spasmodic Torticollis society and found some answers. When I mentioned torticollis to my doctor he sent me to a neurologist who diagnosed me with Cervical Dystonia. Torticollis and Cervical Dystonia are the same disease. I was told to stop exercising.
After a month of no exercise, no chiropractic and no massage, as recommended, I was worse. I couldn't believe I could get worse but I did. I had balance issues, eating issues. I was weak and depressed. Something as simple as washing a pot could be excruciating. I had memory issues and speech issues. I started acupuncture. I had started to gain weight so I switched to a vegan diet low carb diet. I then switched to the reboot your health juice fast. My memory problems skyrocketed as did my self-esteem. At work, I wrote everything down. I didn't trust myself to remember any detail. I became quiet because those around me made fun of my speech problems.
At the end of 2011, at the height of my depression and in debilitating pain, I found turmeric. Yes, that's right the spice. It was around Christmas and a friend recommended "indian golden milk". I started drinking that concoction every night. I gained more weight but it felt like that 300lb monkey on my back was gone. I was still in pain. My neck still spasmed mercilessly. Driving was a chore so I only drove to work and back. I did mail order and delivery for most items. My work hours were dwindling. I could not spend more than a few hours at work per day. My free time was spent lying on the floor of my house in pain. I literally went to work and came home and lay on the floor. I kept trying to exercise even do a little yoga. I couldn't. I continued to research. I called doctors, practitioners, research organizations. I bought tons of holistic supplements. I switched from one diet to the next. I tried gluten free, vegan, juicing, cleansing, fasts, no grain and on and on. When I started eating meat again in the summer of 2012 my memory came back and my depression disappeared. Also, I found a supplement called inositol. My spasms started to slow meaning every few minutes instead of every second of every minute of every day.
In 2013, I was able to find some exercises that were used to help parkinson's patients. There was also a free Felden Kras class at the local library. I dragged myself there every chance I could. Sleep was becoming impossible as my head spasmed all night long. I took tylenol pm, soma, and lots of aleve. Migraines were becoming an everyday event. Both shoulders were in excruciating pain. Regular everyday movements were impossible. At this point I hadn't bought clothes or been to a mall in years. I was ordering online or buying while at my monthly trip to Target. Going to the laundromat was every 2 months or so when a friend would come with me to do all the heavy lifting. I never went to parties or family gathering. I missed both my nieces' wedding. Going more than 15 minutes from my house was daunting. I mostly went to work, doctor's appointments and that was it. If I ran out of something, I did without. I was depressed alone and almost completely isolated. I had not told anyone the severity of my illness.
Did I mention that trying to eat and drink was a marathon and often I stabbed myself in the face with my fork. One time my head stuck to my chest while cooking and I almost set my hair on fire. My clothes were covered in spills and stains. I did not eat out in public, though at this point no one was asking.
Sorry I digressed. The exercises and Felden Kras and acupuncture were somewhat helpful. I started to pray and meditate. The depression started to lift and I felt more clear headed after I started eating meat and removing all grains. I still had problems and it was causing problems with my work environment. A client complained when my head spasmed and asked "Do you have to do that". Her husband had parkinson's but at the time I did not know how to fully explain my condition except to say "sorry these are involuntary". It added to my depression that I felt like a freak.
In the summer of 2013, I had a healing done from a healer in Brazil. For two days, my head did not spasm but only if I walked and moved at less than a snail's pace. I inched around like that for a few more days but the spasms increased. No one can move like that forever. It gave me hope. I planned a trip to Brazil in January 2014. After that, I started to notice that the slower I did things the more control I had over my body. Also, I noticed that when I was away from work and clients I was better. I realized that stress, any stress made it worse. Little did I know that the answer to that was coming down the pike for me and soon.
I had not taken a vacation for last 8 and half years. I would take a day off here and there. I did take a week off for my parents illnesses and preceding deaths but that was it. I had basically give all my time, effort, heart and soul to work. Once I got sick my painting stopped, trips and walks, beach going, parties everything stopped. When I was around others they had no idea that all I wished was to go home and lay on the floor. I was one big ball of pain and spasms.
Again I digressed. In January 2014, I went to Brazil. Leading up to that time. I fell down a flight of stairs and sprained my ankle. This was caused by my neck spasming. The last day before my trip I remember putting my head down on my desk. I wanted to continue working but I could not hold my head up for one more minute.
Let's just say Brazil was great. Uplifting! The other people on the trip really took care of me. Okay except for one crazy guy who kept seeing demons but there is always one crazy, right!? I was much better while I was there. Although the flight there made me wish I was dead. 14 hours on a plane in my condition. God, kill me now!
On the way back, my stress was less I had had some peace. Being away from the stress of the job for that extended period I am sure helped. Now back to reality. I show up at work after just 3 hours sleep and still jetlagged. No one told me that it could take weeks to get over the jetlag of such a long flight. Like the trooper I am or the crazy overzealous committed worker bee that I am, I went to work. Then it happened the being of my real journey. I was laid off. Period gone. Done. This wave of relief washed over me and fear.
Of course, in true worker bee fashion I set out to job hunt. Along the way I found my new chiropractor, acupuncturist, and other holistic practitioners. I had time to do alot more research in between job hunting. Then the fear and stress overwhelmed. I ended up on bed rest for 2 months. Although I was stellar on paper and amazing on phone interviews, let's just say my spasms scared people. No amount of explaining was going to change that.
It was September 2014. The upper cervical adjustments were not working quickly nor the other treatments. It was slow and steady. I was seeing progress but I kept sabotaging myself by trying to find ways to speed up the healing. I found others who had healed there CD. They call it remission. That's what I yearned for. I refused to fight for handicapped services. I refused to waste my energy. I knew I had limited resources and I needed to get better now. In October, I went to a TMJ doctor. It has helped a little. You see everything is helping a little. At the end of October...
See what I didn't tell you is that I had made a deal with myself that if I didn't start seeing some significant progress by year end I was going to find a country or state that would euthanize me. I knew a woman with CD who had gone to switzerland or sweden and they euthanized her. She had CD like me. I just couldn't see living this way forever. I wanted to date, hangout with friends, have a career and enjoy my life not sit at home like I had for the last six years.
When October came and went I realized I had only a few months before I had to find a place to euthanize me. I wasn't ready to give up. The reality of death pushed me further to finding an answer. I started researching and testing many different things. I found a Trager practitioner and after one session I was walking better. Also, I learned easy does it. The lesson I had learned when walking and moving slow when I had my first spiritual healing finally sunk in. I started to do all my exercises very slow like tai chi. I started to find the practitioners I needed to teach me. I am slowly progressing but a bit faster each time. I can eat without stabbing myself with a fork. I can wash a dish without leaning my head against the cabinet for support. I can put on my pants without toppling over. AND no crazy diets for me. I am learning that yes nutrition is a big part. I opt for a banana instead of a cookie. When I took away cookies and bananas I had to cheat. For me a banana is cheating. They are not perfect but given the choice not perfect is better than disastrous.
I am learning slow and steady wins the race. As much as I want to get back to a full life, I have to take it easy so I can have a full life not a half life. If I have to resort to living in my car so I can still afford healthy food, and the practitioners that can help me then so be it. Lately I noticed myself smiling for no reason. I am laughing for no reason. My pain is way less. My spasms are way less. My joy and faith are much higher now.
Update: I wrote this in March of 2015 and never published it. In April, I started getting worse again. It has been a steady decline back into hell. God save me!
