Sunday, April 29, 2012

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 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.



The skinny truth about Dystonia...I miss my boobs. 
Thanks, Dystonia. 

if only
our tongues
were made
of glass

how much
more careful
we would be
when we
Shaun Shane

Wednesday, April 25, 2012

How It Started/In Sickness and in Health

How it all started...what a headache! I don't even know where to begin. It was September of 08', senior year of high school, easy classes, exciting things to look forward to, madly in love with mr. Taylor should have been a great year, I had SO much to look forward to. That's not exactly how things turned out...Weird how fast life can change.

Like I said in my first post, I was driving to school and my head felt weird. I literally woke up with Dystonia. From what we know, some forms of Dystonia are genetic, some people get it from head injuries, brain tumors...and then there's those who wake up and BAM. Just have it. Life changed forever. No cause. No answers. In less than a week I could barely function in school and work and I had no idea what was happening to me. I saw every single one of my doctors and not one of them could tell me what was wrong. I'll never forget the day I completely felt myself losing control over my body...
It was the day of the rally that our senior class got kicked out of (I'm sure a lot of people remember this.) Instead of going back to class, the whole senior class ended up in the quad screaming THIS IS OUR HOUSE!! It was EPIC. Where was I? Hiding inside the IB building packing up my things, desperate to go home . It was happening again, I was losing control. My neck was slowly turning and contorting my head to the left. It's painful beyond words. I felt like I was on the outside looking in, and no one knew what I was going through. How do you explain the unexplainable? I should have been there with the class of 09' screaming my lungs out with no care in the world. Instead I was living a nightmare, and I was giving up hope fast. Talk about suffering in silence...

It is so hard to find the words to describe exactly what Dystonia feels like. There are only 2 people in the world who truly know the depth of the pain that I experience, my mom, and Taylor. They were the only 2 people that I let in on this entire journey and were there from the very beginning. I was terrified. No one could tell me what was wrong with me. I was on about 5 different pain medications and muscle relaxers and nothing worked. 

The first trip to the ER happened in about October (still no diagnosis). It wasn't just the contorting and intense spasms happening; every time I laid my head down, it was bopping up and down, side to side, so intensely that I knew if it did not stop I was going to break my neck. No doubt in my mind. I was in the ER from 11pm to 5am. I got a CAT scan, the doctors told me everything looked normal, gave me a bottle of Valium, and told me to go home. Are you freaking kidding me? This is not happening..this is not happening...this is not my life.

It got to the point where I couldn't go to school anymore. I had no control over my head or neck, I was in SO much pain. Dystonia is all-consuming. It completely took over. Someone recommended I go see a neurologist, and by this time it was November. I had been going through hell for 2 months now and literally wanted to die. It's a horrible thing to say, I don't believe suicide is the way to go, but that's how much pain I was in. I wanted to die. I saw a neurologist, Dr. Mahaldo-Chang, who is absolutely AMAZING, and finally had a name for this horrible awful thing that was killing me: Cervical Dystonia. And so the journey and treatment began...

There were so many nights when all I could do was cry and pray, and cry some more. 

I have to mention someone here, and this is not easy for me by any means, and I'm asking for no judgment or assumptions. This is tough. I can't even write this part without bawling my eyes out, but people need to know what an INCREDIBLE thing this person did for me.


Oh Taylor. Where do I start? I have never had a person love me so whole-heartedly that they would sacrifice what he sacrificed for me (except my mom, but she will be next, and you're getting a whole post, mama). 
I can only imagine what he went through. There were so many nights before I was diagnosed that I would just lay in his lap and cry and cry and cry and he did nothing but stick by my side and tell me everything would be okay, even though he didn't know if everything would be. There were 3 weeks when things were so bad I couldn't walk, and Taylor was there 24/7, making sure I ate, making sure I slept, bringing over movies I had never seen before, making sure I remembered how to laugh, and giving me so much love and strength I can't even find words to explain it. He could have so easily walked away. It was his first year of college, he was 18 years old, and he chose to stay with me instead of doing whatever normal 18 year olds do.

I always tell him he saved my life. He kept me sane, he made me want to keep going and he gave me a reason to live. He let me cry and he let me vent and he never complained.

This is why I say that God works remarkable good out of unspeakable tragedies. If I had never gotten Dystonia, Taylor and I never would have formed the bond that we have. He was such a big part of this for me, and even though we have parted ways I will never forget what he did for me.

So now I continue along my journey standing on my own two feet without Taylor to rely on. How scary it's been! I am still completely open to love, but I come along with Dystonia. 
If someone wants to tackle this head-on with me, then glory be to God! I will wait for God to give me that person, if I have not already met him. Love is SO fragile, handle with care!

Taylor taught me what "in sickness and in health means" and I cannot even explain how much I love him for that. If that is not a blessing from God, I don't know what is.

I know this is personal but people should know what Taylor did for me and give him credit. He is part of why I am so strong and he encouraged me to do this blog for years. Not every relationship works out but I'll never let myself forget how much he helped me through this all.

This was a tough one...

I will leave it at that for now.

"If you press me to say why I loved him, I can say no more than it was because he was he and I was I."-Michel Montaigne

Here I Go

I'm not even quite sure where to start with this. There are so many thoughts that run through my head when I hear the word Dystonia...fear...loneliness...confusion...anger...hope. I am coming up on my 4th year suffering from Cervical Dystonia and sharing my experiences is something I have thought about doing for years but never seem to have had the courage to do so. I do not know if anyone is going to read this; but even if just 1 person does, doesn't that count for something? 
I heard yesterday that more people have Dystonia than people with Huntington's Disease and MS, combined. Yet why is it that Dystonia is a word most people have not even heard of? I felt sick to my stomach after hearing this. 
According to my neurologist, I have about 10 more years left before I am immune to the treatment I am currently receiving (I'll get to that later). And then what? The answer is, I honestly don't know. I can't accept that. I refuse to let this disorder take over my life more than it has, and if it is going to take over my life, I will decide how, and I have decided to start by writing-educating those who want to be educated, share my stories and fears and struggles and the ignorance of so many people towards my condition. I am hoping this will lead to advocacy, not just local advocacy but advocacy in the entire Dystonia community. I am hoping advocacy will lead to awareness, awareness to funding for research, research to answers, and ultimately-answers that will give us a cure. 

What is Dystonia?
Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are 'competing' for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are approximately 13 forms of dystonia, and dozens of diseases and conditions include dystonia as a major symptom.

When I was 17, I was diagnosed with Cervical Dystonia, affecting the regions in my neck, shoulders, and head. I was driving to school one morning and my head felt...weird. Something felt off. And from there it took off. By the end of the week the spasms and contorting of my head were so bad I told my parents straight up-something is not right. I could feel it in my brain. I knew it was bad-I just didn't know how bad and I had no idea I was about to fight the biggest battle of my life, but I will get to that later. For now, my goal is to try to start talking about and not hiding it like something to be ashamed of. I am one of the youngsters out there with Dystonia and I feel obligated to do something, even if the first step is blogging about it. Maybe someone will read it, maybe no one will. The point is, if I don't do something, if I don't say something, then I am accepting my diagnosis and assuming someone else will advocate and speak for me, and like my dad says, when you assume, you make an ass out of you and me. No more assuming, no more pretending I live a normal 21 year-old's life. This is real. This is hard. But I have hope. 

William E. Young wrote, "Just because God works remarkable good out of unspeakable tragedies doesn't mean He orchestrated the tragedy."

I started this journey four years ago and I am curious to find out where it will take me. I have lost a lot but I have also gained a lot along the way. I have met some remarkable people and have received nothing but love and support from so many people.

My first attempt at being a voice for those who are unable to speak for themselves due to the crippling nature of this disorder. How scary. And exciting. It is going to be the biggest uphill battle of my life-and I can't wait.

Here I go.

"Your journey has molded you for the greater good. It was exactly what it needed to be. Don't think you've lost time. It took each and every situation you have encountered to bring you to the now, and now is right on time." -Asha Tyson