Living With Dystonia: The Skinny Truth/Rumors

I think one of the hardest things for me to figure out in dealing with this whole situation is trying not to push people away. Right after I was diagnosed, I ended up in the ER again and this time it was BAD, and I mean BAD. I remember screaming the whole way to the hospital, my mom was speeding down the freeway as fast as she could and I barely remember any of it; just a lot of screaming. They couldn't do much for me. Pump me up with a lot of morphine to kill the pain but that doesn't stop the contorting and my muscles were still fighting each other. This was the event that made it impossible for me to walk around; I went on independent study at school and did not leave my bed for 3 weeks. I couldn't even make my own meals. When my parents were at work, Taylor was the one making sure that I got what I needed-thank God for him. I was given 3 meals a day, lots of movies, lots of sleep, lots of pain. I was so exhausted at this point I think I was just relieved I didn't have to go to school and pretend like nothing was wrong-I was free to suffer without judgment or questions.

I didn't let anyone visit me. My friends were awesome in supporting me, but the most I would accept were text messages. The first friend I did let see me is one of my oldest and dearest-Liz. Which is where the whole weight thing comes into play-a subject I have tried to avoid because it makes me extremely uncomfortable-but this is my reality and if I am going to tell the truth about Dystonia, I am going to tell the whole truth. When Liz came to visit me, I will never forget opening the door and seeing the look on her face. She didn't even look at me-she just grabbed my torso and said "Oh my God...oh my God..you are so tiny." I had no idea what she was talking about. I don't have a full length mirror in my house and I didn't give a damn about how I looked, so the look of shock on her face was very confusing for me.

I received my first round of Botox treatment November 19th,2008. Hard to forget a day like that. Botox is one of the only forms of treatment for Dystonia-and I say treatment, not cure. It just eases the symptoms but it never fully goes away. Essentially, the Botox injections block the messages the misfiring neurotransmitters are sending to my neck. I pretty much blacked out the first time I got treatment. 10-30 needles injected directly into the muscles around my neck and shoulders...makes me cringe. It is extremely traumatic. It's invasive. And unfortunately, it didn't work the first time.

I started on a medication called Artane, and I will never forget that day because that's the day I stood up straight for the first time in weeks. I was able to go back to school. And here's where the ignorance comes into play and absolutely broke my heart. I knew my jeans were baggy-I just didn't know how baggy. I felt like everyone was staring at me my first day back; walking through the quad was bad enough because I felt like absolute SHIT, having people start rumors made it worse. Apparently, people started a rumor that I was anorexic and I was MIA in school because I was at a facility getting help. I wanted to throw up when I heard this. If only people knew what I had gone through...that would have shut anyone up.

I was depressed. Straight up. Dystonia drains the energy out of my body, and here's why. This is also why I lost so much weight. The muscles in my neck are contracting and working 24/7, even in my sleep. It's like working out constantly. The first time I realized how tiny I was was in Yosemite; my family had rented a house up there to celebrate my 18th birthday. I got out of the shower at that house and did not realize directly across from the shower was a full-length mirror. I stepped out and almost fell to my knees-I could not believe that was me in the reflection. 92 pounds of nothing but bone. I felt hideous. I still have days where I wake up and hate what I see when I look in the mirror. I have done everything in my power to try to gain weight and it just hasn't happened. Dystonia is forceful. But I've tried. So that's the story behind me all of a sudden being itty bitty.

I have tried not to be bitter towards all the people starting rumors but it hurts. I wish people had just asked me what was up. So I have pushed a lot of my old friends away. I keep the ones that are there for me close. Quality, not quantity.

It's hard letting new people in. It has caused me nothing but hurt so far. Trying to explain all this and how complicated it is gives me a headache, it's so hard for people to understand. Dating is the worst. How do you go on a date with someone and be like 'oh, by the way, I have this really scary thing with no cure and I'm exhausted 80% of the time and would rather relax at home with a glass of wine and a movie instead of going out...oh and I might not be able to have babies." I will get to that later. It's just hard getting people to understand how it makes me feel physically. My biggest fear is that I will never find a guy that accepts me for all the baggage that I come with. It's frightening. It makes me feel like I shouldn't even try. For now, I guess the point I'm trying to get across is that everyone is fighting a battle we know NOTHING about. I put on a happy face and go about my day but the physical pain and emotional anxiety of this is always weighing heavy on my heart and mind. I try to be nice to everyone and not make quick assumptions because that is exactly what people did to me and it hurt me so bad.

I feel like an old woman sometimes. There is nothing normal about the way I live. It's still an adjustment and I have my really bad days, unfortunately today is one of them but I wanted to write anyways. Good and bad, it will be on here. And there is a lesson to be learned in each of these experiences. I feel like the good in this part of my story is that Dystonia has made me SO much more compassionate towards people. It makes me want to be nice and make people feel like they matter.

Looking at these are extremely upsetting to me: however, I promised myself I would be completely vulnerable, so here's a little before and after of me.

Before: