Sunday, July 22, 2012

From The Inside Out

Sometimes, someone can tell you something a million times and although you agree, you don't fully get it until you realize you never fully got it. 
Got it?
That was probably very confusing, I know. I have been saying for years now, Dystonia does not define who I am. And I am slowly starting to see what that REALLY means. 
It means that God has plans for me, good plans, and wants only my love and devotion to him.
The things He gives to me are things I do not deserve but are beyond my wildest dreams. I am incredibly blessed to love a God that loves me first, despite my shortcomings.
It means that I can meet someone and somehow, through the grace of God, they can see my heart, not the things that complicate my life. Just me. And what I am about. And I suddenly don't feel the need to talk about my Dystonia, there is just an unspoken peace that truly, it's okay. And it's going to be okay. And I'm so glad I did not give up.







I have never directly addressed my faith in this blog, mainly because I understand that everyone has different beliefs, and I want this to be a safe place for Dystonia sufferers' to come and be reassured, you are not alone in your pain. But God is my safe place. People often comment that I have handled this reality very well, and I can honestly say it's the peace I get from knowing that God has my life and loves me, He will not let me fall without helping me back up. 
So when I say Dystonia does not define my life, I finally understand that God does. All it takes is letting go of the fear and the selfishness and the anxieties that this disease causes-will I be crippled? Will I get better? Will I get worse? Will a man ever love me beyond the complications of this disorder? 
No matter what the answers to any of these questions are, the minute I let go and stop all this needless WORRYING, I suddenly realize that I have no control over these things, and that is okay with me! My body will surely fail, just as everyone else's eventually does. But to walk through my life, in this body, with grace and a peace about it all is something I encourage not just Dystonia sufferers' to do, but everyone. I hope I do not offend anybody out there, I respect that we all have different beliefs, this just happens to be mine.
This is where I get the strength to keep going, to keep living my life with the child-like hope that God has some amazing plans in store for me. They are unfolding in a way that I can hardly fathom-and suddenly I realize how much God loves me. He WANTS me to have all the things my heart desires-to be a wife, a mom, have a family, help people, write with an unfailing passion, and most important, live my life through Him. Be an example to people out there who are lost. I've been in some dark places in my life, especially with this disorder. But guess what-there is always a light at the end of every dark place, if only you allow your heart and mind to go to that light-turn away from your worries and your feelings of despair. Find a purpose to the pain. Find that purpose and turn it into something wonderful.






I know us Dystonia-sufferers' out there have good and bad days-some REALLY bad. Like curl up in a ball and cry bad. I know there are people with physical and mental symptoms that have no cure. 
Don't be mistaken-I don't have it all figured out, but I do know this-God is looking out for every single person out there suffering, He loves you and He will always love you. Suffering or no suffering, find a reason to go on and not let this break your spirit. I know it can. But don't believe the lies. You are good enough, you are beautiful, find that beauty in the parts of you that feel broken.
This is my advice, this is the foundation of my life and I am so inspired by some of the things I have felt and experienced this past week. I finally understand-everybody is God's somebody, including me. I am undeserving and I make mistakes but God loves me enough to help me find a purpose to this pain I live with and then bless me with more than I ever prayed for. God is just THAT good. 


For the 20/30 Dystonia Facebook Group members-I read every single person's post and I can almost hear the desperation and pain through the words. I understand all of it. So I encourage all of you to not be discouraged! YOU ARE NOT ALONE. You have something so beautiful looking out for your life, broken or not broken, Dystonia or no Dystonia. You all are so wonderful, you all inspire me to keep writing, to keep being an outlet to this community of wonderful people who just happen to suffer from this strange disorder. 
But I promise you-you are more than the pain. It's the heart that matters. 


As always, if anyone out there needs a friend to talk you, especially my Dystonia friends, I am here! I'll be here; I'm not going anywhere.




"Write as if you were dying. At the same time, assume you write for an audience consisting solely of terminal patients. That is, after all, the case." -Annie Dillard


"I love you without knowing how, or when, or from where. I love you straightforwardly, without complexities or pride; so I love you because I know no other way than this: where I does not exist, nor you, so close that your hand on my chest is my hand, so close that your eyes close as I fall asleep."
SONNET XVII
Pablo Neruda


Thursday, July 12, 2012

Sticks and Stones

Another horror dating story and a complete lack of respect for what I go through.
A guy I had been sort of seeing has accused me of "using my Dystonia to get attention" and he also said that he "sees what type of person I am now" and that the pills I have to take for this disorder have "permanently affected my brain so I am now unable to comprehend things."
I talk about Dystonia because first of all, I'm advocating for it. OF COURSE I'M GOING TO BE TALKING ABOUT IT. Second of all, if I'm seeing someone, it's going to come up every once in a while. You know? Like hey, I just got Botox a week ago and can't hold my head up, can you please lift the ice cooler for me, honey?
I talk about Dystonia because I am trying to reach out to those who need to know they are not alone.
I go through what I go through because God decided I was strong enough to do this. To live with this. To suffer every day with this. And I feel like I've been doing an OK job so far at wrapping my head around this reality and living as normal a life as possible.


You know when you're kid and you're programmed to say 'sticks and stones may break my bones but words will never hurt me?' 
How wrong those words are.
It's amazing how significant one insult, one accusation, one ignorant comment, can leave such a scar on the heart. 
Why would I ever use something that tortures me for attention? When people ask about my Dystonia and I tell them, whenever people reply with puppy dog eyes and a "Oh gosh I'm sooo sorry," the first thing I say is PLEASE DON'T BE.


I don't want anyone EVER to feel bad for me. Or to pity me. There is a difference between having compassion and respect for someone else's pain and pitying someone, and I never want anyone to feel bad for me. This has shaped my life in such a powerful way. I will repeat this until I die, God works remarkable good out of unspeakable tragedies. Honestly, I get a little freaked out thinking about who I would be or what I would be like if this hadn't happened to me. I could have turned out to be a raging alcoholic or a complete party animal who gets knocked up too young. I don't care to know that person, and I'm grateful I would never have to.
I know who I am. I know my heart. And being accused of USING this offended me SO much, my jaw dropped. My heart started racing. I yelled at someone for the first time in a while. Like, really yelled. 
I'm trying to take something bad and scary and show people that you CAN overcome your circumstances and see the good in life through the storm. I would never use this to get a leg up or to my advantage somehow. What a horrible accusation. How offensive. My response to him was..
"I wish we could switch bodies for a day and you could physically feel what I go through, and then see how you would feel if someone said they think you use your suffering for attention."
Had no effect on him whatsoever.










What is wrong with people? Our world is so fallen. Obviously, this guy is NOT my prince charming. It did make me question myself though. I really hope that I do not come across in a way that is not reflective of what is in my heart.
I'm here to reach out to people. To inspire. To let other Dystonia sufferers out there know that they are NOT alone. I'm here, I'm young, I'm motivated, and I am not going ANYWHERE anytime soon. As long as I'm breathing I will be fighting against letting this ruin my spirit and my heart. God never gives you more than you can handle. I have been so discouraged lately, I won't lie. But ironically, this guys ignorant and inaccurate perception of me snapped me out of the funk and the writer's block and just affirmed who I really am. 
Come on, Nicole, you're better than that! Surely God wants more for me than that. 


What a crazy journey. When the first guy I mentioned in this blog said that if I was healthy, things would be different, it affected me so much, and I'm ashamed to say I let it. Every person, young or old, sick or healthy, rich or poor, deserves so much more than these comments. Gaining a selfish advantage by using my disorder in some way is not in my heart. It is not in any fiber of my being. I wouldn't trade anything in this world to make things different. This has made me who I am. I have not been feeling good physically lately but the fact that I am able to say I would rather suffer and know my heart than be healthy and not have a damn clue, how is that anything short of God working in me? I just want to be an outlet for people, a safe place to go to, a light in a really dark place.
I have said this in previous blogs, I am not just fighting for myself. I am fighting for thousands of people out there who are hurting. People are suffering, people are scared, people's lives and the quality of those lives are at stake! So shame on the guy that accused me of USING this to get attention. Shame on him. 






Another failed prince charming. He ended up being another frog. A frog I am grateful for though. He thought his words would affect me; sorry bro, you just strengthened my heart and the confidence I have in what I'm doing here. So thanks!


I'll know when my prince charming arrives, but I'm done searching. Dystonia does not define who I am, but it is a PART of who I am. If someone is going to love me, they have to love the Dystonia. I know I do. Otherwise, who knows? I might have married that ignorant frog if I did not have this disorder to show me who he really was. 
Dystonia: 1
Ignorant Frog: 0


You lose. I'm still here. And I'm not stopping. 







"If a train doesn't stop at your station, then it's not your train." -Unknown





Friday, June 29, 2012

Dating

Talk about writer's block-I've been finding myself a little unsure of what I want to write about. I am excited and blessed to say that I have been asked by the Dystonia Medical Research Foundation to write an article for the Dystonia Dialogue on what it is like living with this disorder in my early 20's. They want me to write about dating, college life, establishing my independence, ect. Basically everything in my life that is difficult or altered by the nature of this disorder.
I'm not quite sure why I have felt so unsure about my writing and my thoughts and believing that what I am trying to do with this blog will make a difference. I try not to let the ignorance of people get to me but someone close to me..of course, a guy I care about very much... said someting to me a couple weeks ago that shook me more than I thought it would.
One of the things that I want to talk about in my article is dating. Proving to be a very difficult thing to do. It was easy dating someone who was there from the beginning, but starting over with someone new and explaining exactly what I go through...what a headache. The level of ignorance and a lack of understanding is something that I do not know how to deal with...
"If you were healthy, things would be different." Ahh. Such harsh words. Hard to shake off. Validating all my fears and insecurities about being alone...I don't even really know how to feel about it. I know not all guys are like that but still, who says that? Who has thoughts like that? It's not MY fault that I'm not as healthy as everybody else. Insane...






Dating, not so fond of it right now. It's not like I'm contagious. I just require a little more maintenence than most. Like a really expensive car. Kidding... Honestly, how hard is it to simply be there for someone? To hold someone's hand through a 20 minute treatment appointment? I don't know what else to say about that. Dating is hard. Period. Patience is key here I suppose. Blah. Very frustrating. I feel like a .
I wonder if anyone else my age has encountered this problem.
It's one thing to think bad thoughts like that but actually looking at someone and saying "If you were healthy things would be different, maybe then we would be together." What the F*?#??????????

This isn't a very positive post. I apologize. Maybe I will gain some insight to this in the future and come back and revise. For now, that's it. Sitting with those words in my head and in my heart and trying to work through them. Trying to not let it affect me. I can't lie though, it does. It did. It hurt me.

I guess the point is that it is VITAL so surround yourself with people who understand and love you despite your circumstances. Circumstances should never overpower love and control a situation to an extreme extent. Such a shame.

Tuesday, May 22, 2012

The Day My Neurologist Punctured My Lung

I't's been a while since I posted. I've been having some issues with the muscles in my shoulders. I have no idea why this happens, even my neurologist comments on it from time to time. The muscles in my shoulders and up my neck bulk up so much, I literally look like a tame version of the hulk. They feel like boulders. It makes it very difficult to turn my head.
The pressure in my head is building. It's close to treatment time, which means the Botox from last time is starting to wear off and I'm slowly losing control over my neck and head. The pressure is so weird. It's not a headache-type pressure. This sounds crazy, but it feels like my brain is pulsing and the pulsing is shortly followed by mild contorting of my neck. Definitely time for treatment.


The most common form of treatment for Dystonia is Botox injections, which is what I have been doing for almost four years. Anywhere between 10-20 shots of Botox are injected directly into the muscles in my neck every 3 months. Yes, it hurts. I used to pass out when I first started the treatment. It's extremely unsettling to feel a needle digging into your muscles and feeling the Botox spread like a cancer through your neck. It is emotionally draining for me. I usually leave the hospital in tears and stay in bed for a few days after. The reality of Dystonia seems to always hit me after these treatments.
Sometimes the treatment works pretty good and sometimes it doesn't. That is what is so complicated about Dystonia. Everyone is different. 


My neurologist is amazing. She diagnosed me, she knows how much I have improved, and she knows my needs for treatment better than anyone. I have so much faith in her. I have to. She is the only one who can help me. I depend on her to get the injections right so I can function as best as possible for the next 3 months of my life.


I need to bring something up. And this is tough for me because I adore my neurologist.
Even she is human. And something that happened last year during one of my treatments really showed me how powerless we all are in this. All we can control are our attitudes.








May 19th 2011. 
I went to the hospital, UC Davis, in Sacramento for my routine 3 month Botox treatment. I was with my mom and my now ex boyfriend that day, who usually accompany me for these treatments. My ex would sit in front of me during the procedure to distract me from the pain and my mom always stands behind me to watch exactly what my neurologist is doing. This particular treatment went so incredibly wrong...
She was injecting the last needle, right above my left shoulder. Right after she took the needle out I felt a shooting pain all the way down my spine. I immediately told her something was wrong. She told me it might be a nerve that was pinched and advised that I lay down. Not even 2 minutes later, I was gasping for air. I felt like I was drowning on nothingness. The nurses immediately called for an ambulance and I was transported to the ER down the street to a different building. I think my neurologist was completely dumbfounded. She had no idea what was wrong. I was whisked away so fast by the EMT's I left my mom and my ex standing in the dust. I was taken to the emergency ICU room, which was absolute HELL.
There was only a curtain in the room separating me and another patient, a woman who had overdosed on drugs and was cussing and screaming at all the doctors. I didn't know where my mom was, and my breathing was not getting any better. The doctors took x-rays and I was given an IV, all that good stuff. Unfortunately for me, the nurse helping me was a fourth year med student and had rolled my vain when trying to get the IV in, splattering blood everywhere. Shortly after, the doctors came in and told me that my left lung had been punctured by the needle my neurologist injected and my lung was deflated 15%. They were going to keep me overnight and see if it would re-inflate on it's own, and if not, a chest tube would be inserted directly into my chest to re-inflate it. As if being in the hospital receiving treatment for an incurable disorder isn't bad enough, now I was injured because of malpractice. Apparently my lungs sit a little higher than usual because I'm so tiny, so I don't hold too much fault over my neurologist's head. How was she supposed to know? People think I'm crazy for continuing to see her for treatment but I just don't trust anyone else.


I needed the chest tube. I woke up the next morning and was almost gasping for air. The doctor came in and told me what was going to happen, but all I could focus on was the fact that I was going to be awake for the whole thing, he was going to stab with me a huge needle right in the chest to numb me, and then stick a tube with a pointy end directly into my chest, and my mom had not made it to the hospital yet. I called her in a complete panic. I needed her there. I was frantic. She flew down the highway and literally made it just in time.


To make matters worse, I was completely exposed. Breasts out, no cover-up or anything. I looked away and went to my happy place.
Heaven. No Dystonia. No more pain. No giant tube being inserted into my body. Nothing but God's grace and the knowledge that I would never have to go through this again. Unfortunately, this is the real world, and I was not in Heaven. I can't even explain the pain and I don't really want to. Bottom line, I should not have had to go through this.
I was a wreck.
To make matters worse, I really needed my now ex-boyfriend to be there for me and he chose to hang out with his buddies and drink instead. If the person I loved was in the hospital recovering from Botox treatment and had a punctured lung with a chest tube keeping me breathing, I would have freaking BEEN there.
He's an EX for a reason.
My mom was there. And that was enough. My mother's love for me is the biggest blessing God has given me so far. I could not do this without her. I know how lucky I am and I do not take that for granted.


I was in the hospital for 3 days. 3 days of no sleep. I was interrupted every two hours for 24 hours straight by x-ray technicians coming in to take x-rays and see the progress and make sure everything was okay. I was sharing a room with an elderly woman dying of Cancer. I couldn't walk by myself and had to have the support of a nurse to support my weight to help me take those first couple steps. The nurses were amazing. Bedside manner is everything. By the third day, the tube was ready to be taken out, and it was even more painful coming out then coming in. I don't even like thinking about it. 


I was in such a funk for weeks after that. Life made no sense. I prayed endlessly but the tears wouldn't stop. Why did I have Dystonia? Why wasn't my boyfriend there for me? That hurt worse than the tube. A true testament to what love should or shouldn't look like. The company you keep is so vital in living with this disorder. It's not easy and I respect everyone in my life who has the heart and love to love ME through all of this. It's a lot of drama but I am so thankful and so blessed. 


Here's a couple pictures from this fun experience. Sorry for those of you who don't like blood!


This was in the emergency ICU room with the crazy screaming lady right after they told me my lung was punctured. I was not a happy camper..
 Fourth year med student ...way to splatter blood buddy. Thanks for that one.
 This was after they took the tube out. I had this bandage on for a few days.


 Cheesin :D or not?


Dystonia is such a complicated disorder. As this experience taught me. It's not just a pain in my neck, no pun intended. The human body and brain is not supposed to be put through this kind of stress. Especially long-term stress. It's scary. It taught me that doctors are not God. They are human. And they can and DO make mistakes. And not one day should be taken for granted because this situation could have turned out really bad for me. It was a learning experience. 
We all make mistakes. Some people should not be welcomed into my life if they cannot even take a night off from drinking with the buds to be there by my side when I was terrified. And I am stronger than I give myself credit for. I survived that and I will survive this. And I will keep talking about this until my voice is heard. Something needs to be done! More mistakes will be made! It's a guarantee! So let's do something about that!
I am in the process of setting up a donation website for people to donate money for research to the Dystonia Medical Research Foundation with my personalized story on it. I'm praying to God that people respond and help me fight this awful disorder.

Unfortunately, my treatment appointment was pushed back a month, so I am in for a rough few weeks. More opportunities to learn tough lessons and find the blessings God graces me with throughout these difficult weeks. It makes me appreciate the healthy times all the better. It's all about attitude, right? Happy to be on this journey despite the pain and fear, and as always, thank you to those who take the time to read this. You guys are amazing!




"Our deepest fear is not that we are inadequate.
Our deepest fear is that we are powerful beyond measure.
 It is our Light, not our Darkness, that most frightens us."
-Marianne Williamson



Love is all about someone saying, 'I see you. I see who you are. I love who you are. I appreciate who you are.'

Wednesday, May 16, 2012

Lonely/What is Normal?

Today was the last day of another semester of college for me. Hoorah! One more year and I will have my AA in Psychology and then I will be on my way for a BA. School is such a struggle for me and one of the many frustrations of my daily life. It's amazing how much discomfort sitting down for a couple hours can cause me. I have had days where I have literally been in so much pain I have had to get up and walk out of class. It's so hard getting through each semester and I have to limit myself to taking only 3 classes a semester or I get so overwhelmed my body cannot take it.
It's very frustrating. School always came easy for me. I got things done before they were due. I got them done fast. And I got them done right. That is not the case anymore, obviously.


My first semester of college was the worst. I take Klonopin and Artane every morning and every night as part of my treatment, and let me tell you, I have such a love-hate relationship with these medications. They help my disorder tremendously but that doesn't make up for feeling so drugged out I can barely remember my own name. The Klonopin makes me sleepy but the Artane...I can't even put into words how it makes me feel. It's the most uncomfortable feeling. It's like a big cloud being put over my brain. My short-term memory is limited to about 5 seconds before I completely forget what I was gabbing about. I'm sluggish. I'm slow. My eyes are blurry. And I'm supposed to go to class like this??? I tried. I failed.
In High School it worked because I was on a stimulant for my ADD, so I think the two balanced each other out. But I am off all stimulants as I have a suspicion that was what caused my Dystonia in the first place (a different story). I was still down to a dangerously low body weight at this point as well and was extremely weak. I hadn't learned how to manage my Dystonia and my every day life, something I still haven't mastered but have come a long way to be where I am today. It's all about balance. 


Anyways, I had to think of a way for me to be a normal, functioning citizen of society and not this zombie, glossy-eyed, stoned version of Nicole. 
And I figured it out. Pretty simply solution. I wake up an hour earlier than I actually have to be up, take my medication, and go back to sleep for an hour. When I wake up an hour later I am still groggy, but not stoned out of my mind. At night, I welcome the cloudy feeling as I am so exhausted by the end of the day I don't mind being a little brain-dead.


My neurologist is hoping that we can eventually stop the medication and just stick to Botox injections every 3 months. Time will tell where that goes.


I guess the biggest lesson I have learned here is to accept. Accept that it is going to take me longer to do things now. Accept that it's not a bad things. And accept that I am going to have moments of frustration as I watch people my age live "normal" lives.


It's so hard connecting with people my age. I feel like everybody goes out and has a big drunken or non-drunken blur of fun. Staying up late and not worrying about the horrible effect it might have on the body. Not a care in the world. Random trip to the beach? No problem! Girl's night at the bar? Sure! Crazy adventures into the wee hours of the night? Let's do it!


That's all I want. To be normal. To feel 21. To know how to be around people my age and connect with them on a real level.
But I don't; they are healthy and I am not. I'm tired by 4 in the afternoon. I have nights where I do stay out all night, and the repercussions are SOOO not worth it. One night of being young and wild and free (Thanks Snoop) is not worth a week or two of pain. 


So I live slower. I try not to be bitter about my situation or the fact that I feel so out of the loop sometimes I could die of loneliness.
It's like watching the "cool kids" in high school and being the geek on the sideline. It's a very hopeless feeling. Almost like, "what about me?" Where do I belong? Who do I belong with? Where the hell am I going to find a group of friends that understand my lifestyle and what I need?


I don't know yet.
But I have faith. God won't leave me standing alone. If anything, being alone is making me realize my potential and I am actually doing things for ME. For once. I think this is the first time I am not relying on a boyfriend, or a "best friend" to take care of me. I have my family, always, but for once I am standing on my own two feet and it's scary but I think it's a necessary part of this journey. Finding my worth. Figuring this disorder out. DOING something useful and helping people out there. 


Lose everything to gain everything right?
So really, I'm not losing.
God has that right guy picked out for me already, and those people who won't abandon me due to the nature of my condition are out there somewhere. One word came to me today when I was praying about it today: Patience.
I can do that. If I can fight this disorder, surely I can wait for the rest of my life to start.




So, to all the "normal" 20-something year olds out there, party hard for me this summer. And never take your good health for granted! It is a gift, not a right! Cheers!


The newest Face of Dystonia: and so the advocacy continues.











"A man's illness is his private territory and, no matter how much he loves you and how close you are, you stay an outsider. You are healthy." -Lauren Bacall


Life should NOT be a journey to the grave with the intention of arriving in an attractive and well preserved body, but rather to skid in sideways, body thoroughly used up and totally worn out, screaming "WOOHOO what a ride!"



















Wednesday, May 9, 2012

My Inspiration/Blessed

The amount of support I have received this week has been amazing. Another example of God's grace and faithfulness.
I think it's time to tell the story of my first Cervical Dystonia support group meeting. 
But let me back up.

As I wrote in a previous blog, I was unable to walk or move around for a good 3 weeks. When I was finally able to, I don't know what changed in me but I was unable to bring myself to watch tv, listen to music, go on the computer, etc.  I read and did homework. Everything else upset me. I think it was because I knew my life would never be the same and I would never be "normal" like the people on tv, like my peers on myspace (ha!) which was big at the time. One of my first mornings back to school my mom started hooting and hollering at me to come into her room as I was getting ready. I walked in there, looked up at the tv, and there sat Rogers Hartmann on the Today Show, talking about her battle with Cervical Dystonia. I was shocked. I did not know who this woman was, I had never heard of her, but here she was, with the Dystonia "tilt" of the head and torso, talking about the exact same thing that I was diagnosed with not even a month before. I was almost in tears. There's such a comfort in knowing that you are not alone in your pain. Sure I had support from family, friends, Taylor at the time-but no one understood, and out of respect for me, they did not pretend to understand what I was going through. 
Rogers Hartmann also appeared on Oprah. Her Cervical Dystonia is much more severe than mine and she is about 20 years older than me but our stories are more or less the same-woke up one day and had it. However, her brother did have Dystonia as well, and from what little we understood, it can be genetic. Luckily, mine is not, so if God ever graces with me children (I'll get to that painful story later) they won't be at risk from getting Dystonia through me. 
Rogers story on Oprah was amazing. They had attached a camera to this headband that she wore across her forehead so that we could see how she views the world with the degree of tilt her head is in. It's incredible that she has enough strength and courage to go out there and continue advocating despite her condition. She is what inspired me to start advocating and will always be someone I look up to.
I wrote her an email shortly after watching that show and was overwhelmed with emotion when she actually replied. It was a very short email but it made me feel powerful in my weakened state. It simply said, "You sound amazing! Where do you live?" Not much, but 4 years later I still remember it, so she had a profound impact on my life!

I encourage EVERYONE who takes the time to read this blog to click on this link or copy and paste it into the url bar and watch this video. This is Dystonia. This is the type that I have. It doesn't discriminate. It's a little disturbing for me to watch it, but this is Roger's reality and she has consciously made the decision to go out there and do something about.

http://www.oprah.com/health/Living-with-Dystonia-Video

And here is another one I found on YouTube. There is a reason this woman is one of my sources of strength and my dream is to meet her someday. Some of the things she says hits home for me more than I can explain.


http://www.youtube.com/watch?v=OYZCbcsT9fs


"A wave of euphoria came over me once the diagnosis was official. And it was not from the relief of starting medical treatment. My first thought was, 'Why not me?' I'm the perfect person to get an orphan disorder because I will not shut up until the millions who have it are diagnosed, and receive proper treatment. All of my life's fears fell away without effort...Overall, my life's worries went somewhere else, and I have no interest in where they landed. I just know they do not reside within me any longer." -Rogers Hartmann


This is Rogers.







I lived about another year in what I can only describe as solitude. No one knew or understood my pain, despite the support. My mom finally found this AMAZING woman in Vacaville named Carol, who had started a Cervical Dystonia support group meeting inside her home, open to all who suffer from Dystonia.

I was so nervous the first time I went. I didn't know what to expect. I went with my mom, and when we reached the house and Carol opened the door, I saw behind her a small group of people-all of them much, much older than me. I think the youngest woman was in her late 30's. I walked in and they all looked from me to my mom, confused. Who has Dystonia? Me or my mom? When they found out I was the one, I think all of them but Carol (who already knew of my condition and my story) were shocked. They couldn't believe that I was so young and had this horrible disease. But they welcomed me and we all sat down and shared stories and pain and it felt like home. I was trying so hard not to break down but it was so overwhelming dealing with all the stupid ignorant people in high school, and then walking into a house full of people who understood the extent of the pain and agony without me really having to explain. They just knew. 
Of course it bothered me that they were all well over 50 years old-it makes me wonder how much time I have left. More incentive for me to start advocating now while I actually can. 

Carol became aware of this blog and asked my permission to share my blog internet address, as she would like to help get the word out about my story and blog. She said she is hoping that the National Organizations such as DMRF, NSTA, StDystonia, etc, become aware of it so they can refer other young people with Dystonia to check it out. 

I also received a message from the wonderful Kyle Porter who wants to help me start advocating. He said he researched Dystonia and like I have been saying, there is not much information out there on it. He designs and develops websites and makes videos, and he had the idea to make a fund where people can donate, with me being able to choose where the donation money would go. He said he would do it all for free.
It is people like this that are going to make a difference and keep me motivated. I have had a pretty rough week, but God is good and blessed with so many quiet whispers of "keep going." And it has been worth it. I'm hoping to get to work ASAP on creating a place where people can donate and continue on from there. Kyle you're amazing!

If anyone out there has any ideas on other things I can do to help get the word out, please feel free to message me via facebook or email me at NicoleDean2@gmail.com

I'm not sure how far or wide this blog will go or who it will reach, but if it happens to reach someone suffering from Dystonia, hear this-you are not alone. You are not alone and I am putting my life, heart, and soul into advocating and raising funds for research. 

Thank you, again, to everyone and anyone who takes the time to read this. Thank you for the messages and encouraging words. I feel very blessed this week. 

1 more week of school and the advocating will take off to a new level-that is my goal. I feel like I finally know what I am meant to do. There is a purpose to my pain and that pain can be used for good. God is incredible if you allow him to be. He has shown me that I don't have to be a victim to my circumstances. I can beat this with faith. And no matter how small the victories, this week has shown me that I can make a difference. That, is absolutely amazing. Marching on...







Whatever you're doing inside of me
It feels like chaos
But somehow there's peace
It's hard to surrender to what I can't see
But I'm giving in to something heavenly




"The will of God will never take you where the grace of God will not protect you"






Sunday, May 6, 2012

My Heart Hurts

It seems that this blog has become my new lifeline. If I'm having a bad day, the thought of coming home and writing my thoughts down is such a comfort to me. Honestly, my heart has never hurt as much as it does right now. Another horrible thing about Dystonia is that if I'm feeling the least bit stressed out, it goes straight to my brain and the effects come out on my neck. I was at work today, in a lot of pain. I have been feeling okay lately, but last night my right shoulder bulked up and made it hard to turn my head. Very painful. One of the wonderful massage therapists I work with named Patrick asked me if I was feeling okay and I said no. He took the time to pull me into one of the massage rooms and tried to calm my aching neck by using trigger point and by telling me that the people that hurt me aren't worth my time.


My neck feels a little better. My heart, not so much.






I feel like a piece of me shattered when I got Dystonia. It's like a part of my brain snapped and I have these little episodes of complete and utter anger and grief. One time I threw shoes at my closet for an hour because it was the first thing I could get my hands on. One time I cried so hard I couldn't breathe and my mom had to yell at me to breathe. One time I thought about killing myself. One time I thought about losing faith in God. One time I told my mom to put me in a psych ward. Ya, embarrassing, but I promised to be honest. Sometimes I feel like I'm losing my sanity. 


I woke up today with a bible verse stuck in my head. 
Trust in the Lord and lean not on your own understanding.


And I really don't understand anymore. The hard part is that all I want to do is cry. I want to scream. I want to go on a really really long run. I want to yell. But I can't. If I do any of these things, I will be paying for it tomorrow in the form of Dystonia.
It's so weird. Crying is the worst. I think it's because it causes my shoulders to tense up and my brain is probably misfiring like crazy. But whenever I get upset, the effect it has on my body is SO intense. I will literally wake up with spasms and tilting and so much pressure in my head I can barely get through the day. Another harsh reality about Dystonia-I have to keep my emotions in check as much as possible for the sake of my body.


So all I can do is sit here and let the tears well up in my eyes and not let them spill over because if I start crying now, I won't stop. And I have a life waiting for me at 9am tomorrow. So I sit here. Hurt, confused, abandoned, rejected, angry, sad, you name it. And all I can do is sit here with a quiet dignity for the sake of not putting my body through hell tomorrow. It seems unfair. Shouldn't a girl be allowed to cry when people have hurt her without her body turning against her?
It's not fair. It's not fair. It's not fair.
I hate this disease so much. It is days like this where I'm so close to giving up. Bad things have happened to me throughout the course of this journey, but I think today tops them all. 


So what is the lesson?


Don't give up, Nicole. 
Why?
Because people need me. People with Dystonia worse than mine need me. 
People need me to be strong so someday I can stand in front of my local Legislature and tell my story and beg them for funding for research.
People need a young person to go out there and advocate. 






God has a plan for me and I intend to follow through for the greater good of those suffering out there.
Here are just a few of the faces of Dystonia. These are the people I am fighting for. They have names, they have families who love them, who want to take away their pain. They have hopes and dreams and lives just like everyone else. And that makes this journey worth it when I want to give up. I'm fighting for these people, because they are worth fighting for.









Thank you to everyone who continues to read and follow my story. You are helping more than I can explain. Now let's do something about the folks up there who are in pain^^. Aren't they worth fighting for?
Absolutely.




When people walk away from you let them go. Your destiny is never tied to anyone who leaves you, and it doesn't mean they are bad people. It just means that their part in your story is over.






I am strong because I am weak.
I am beautiful because I know my flaws.
I am a lover because I am a fighter.
I am fearless because I have been afraid.
I am wise because I have been foolish.
And I can laugh because I have known sadness.



Wednesday, May 2, 2012

Harsh Realities

Today I am reminded of the harsh realities of my Dystonia. It doesn't matter how good my grades are, how well a date went, how happy I'm feeling over all the feedback and responses I have been getting from this blog.
I still hurt.
I went to the dentist today and as I'm sitting in the chair waiting, I could feel the head rest pushing on the back of my head and immediately knew a spasm was coming. Of course no one could tell that I was in pain, that's the sneaky thing about Dystonia. I can hide the day to day pain I feel fairly well, I have had a lot of practice. It was miserable though. I feel like I am a puppet and someone is tugging on certain parts of my brain that causes my muscles to fight over control over my body. But it's all internal. The Botox treatment hides/eliminates the physical manifestations from the outside to a certain extent (for now), but inside I still feel like I'm dying. It's my BRAIN. And I can FEEL it.


It's so disorienting. It's worse when I have a week of feeling fantastic, and then one thing happens and I am reminded that I have this disease inside me and sometimes it completely breaks my spirit. I try not to let it but it's days like this where all I can do is cry and carry out my day as long as I can before I have to rest my head. 
I was in a very iffy place with God the first year I was diagnosed. I believe that I went through, and continue to go through, the 5 stages of grief. I feel like part of my spunk was rudely ripped away when I was diagnosed; like the youth part of my spirit died and I have aged well beyond my years before I was prepared for it.
Denial: "It will be a quick recovery"
Anger: "My plans are ruined"
Bargaining: "How the hell am I supposed to do more with less?"
Depression: "Keep calm and carry on"
Acceptance: Freedom. For me personally, this means finding freedom in God and putting my life in His hands. By no means is this easy. I have days where I ask God why? Why me? I'm asking the wrong question. Okay God, this horrible thing has happened, now what do you want me to do with it?


It is hard for me to pinpoint where I am at; I feel like I literally switch between the 5 stages depending on the day, because every day is a different day than the one before. Yesterday I felt great; got through a 12 hour school day without any issues; today sitting in class felt like hell. I fidget, fighting to get comfortable. If I relax my body or try to sit back in a chair, my neck starts tilting backwards or to one side and the amount of pressure in my head and neck is unbelievable. God, it hurts so bad. Sometimes I wonder why I am in school. It's so hard for me to just sit in a classroom. Maybe it's my stubbornness or the fight in me-my determination to live as normal of a life as I can. However, my quality of life is pretty poor. It could be worse, but who am I to put suffering on a scale? Suffering is suffering. 
Treat others how you want to be treated. Simple as that. No one's pain is greater or less meaningful than my own. I don't ask for special treatment. If anything I need to ask for help more...there is nothing wrong with asking for help. A very hard concept to wrap my head around; I have a very independent  spirit that feels locked up inside this disease sometimes. I'm fighting to be free, but the point is that I'm FIGHTING. Fighting for others out there. Fighting for a normal life. Fighting for myself. Fighting because God would not expect anything less of me. But He is here on this journey with me, always has been and always will be. I know we all have different beliefs; this is just my personal belief and source of strength. 




I found out the other day that my name means "Leader of the people." I feel like I have always been the shy one on the sidelines and I have willingly let other people outshine me; friends, boyfriends, family, whatever. Not something that I am bitter about because I am a relatively shy person and do not like being in the spotlight. But maybe being a leader is what I was MEANT to do. I think God has HUGE plans for me and I just wasn't prepared for it. 
So I am defeating stage 3 in the 5 stages of grief and I am consciously making the decision to do more with less. We have no control over the cards life hands us, we really don't. Our stay is so fleeting, so temporary, why wouldn't I try to make a difference while I'm here? I suffer daily and my heart hurts and sometimes I'm so absolutely terrified of what will become of me in a few years that I can't even breathe, but I don't want to be bitter about my situation. 
God didn't do this. He wants me to use this tragedy for the greater good; to help other people and be a voice of comfort and let people know that you CAN overcome your biggest battle. The pain might not go away, physical or otherwise, but never give up on yourself. You have the power to take the most painful thing that has ever happened to you-the thing that hurts your heart so bad you feel like suffocating-and turn it into something useful and good. 




So today was a hard day. Physically and emotionally. Maybe tomorrow I will feel better; maybe I won't. It's okay; it won't break me. Harsh realities about living with Cervical Dystonia; it doesn't take a day off.







During the lowest times of my 
life I could only see one set of footprints,
so I said, "Lord, you promised me,
that you would walk with me always.
Why, when I have 
needed you most, 
would you leave me?"

The Lord replied, "My precious child,
I love you and would never leave you.
The times when you
have seen only one set
of footprints, it was
then that I
carried you."




"The best day of your life is the one on which you decide your life is your own, no apologies or excuses, no one to lean on, rely on, or blame. The gift is yours-it is an amazing journey-and you alone are responsible for the quality of it. This is the day your life really begins." -Bob Moawad







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 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:





After:








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
speak 
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 Boyea...it 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.

Taylor.

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