Bloom Where Ever You Are Planted

Where do I start? 

I started this blog last year for a couple different reasons. I was mad that Dystonia was not listed as one of the MANY neurological movement disorders being taught in my biological psychology class. I had a guy compare my life, my problems, my Dystonia to the pile of papers on his desk that he just didn't want to deal with. And mostly I was sick of pretending that I am a normal girl, I live a normal 20-something life, and that I was just like everybody else. 
That couldn't be further from the truth though, and I think the greatest disservice anyone can do to themselves is pretend to be something they're not and be ashamed of something they have no control over. It was my "coming out" of the Dystonia closet.
A couple years ago I discovered something called Advocacy Day in Washington, D.C. It is the Dystonia communities' chance to talk to legislature and try to raise awareness and funding on the Federal and State level.
Kind of a big deal.
I didn't know where this blog would take me when I first started. I would have been happy if I reached just one person. As usual though, God has opened doors for me that I didn't even know I wanted open. I received an email from my mom in March, the subject line containing a very simple "DO IT DO IT DO IT!" She was urging me to apply for the Douglas Kramer Young Advocacy Award, which would allow me to attend Advocacy Day in D.C. 
I filled the application out which contained a series of questions; How does Dystonia affect my life, What I have done to continue advocacy, What is my experience with Dystonia, etc. I wrote from the heart and pressed send, not thinking I would actually get picked.
Surprise! God had other plans for me, clearly. I still can't believe it and this is beyond my wildest dreams; a chance to not only advocate but meet people who are fighting the same fight as I am. Such an opportunity! 
I've been going over in my head what I might say. Which has brought me back to what I fear most about my disorder.

This is what I know for sure, these are facts that have been given to me.
Fact: There is no cure for Dystonia.
Fact: It is progressive. Eventually, I will be immune to the Botox treatment I receive.
Fact: Deep Brain Stimulation would be the next step.
Fact: DBS is not a cure.
Fact: In order to get pregnant and carry a child, I have to stop ALL forms of treatment and will be limited to taking only Tylenol. 
Fact: Without treatment, my head contorts (painfully) to the left and I have tremors, leaving me in excruciating, terrifying pain.
Fact: I have talked to mothers who have Dystonia and carried a child and they all warn me it is NOT an easy thing to do.
Fact: My future is uncertain.
Fact: I'm scared.
Fact: WE NEED A CURE AND WE NEED FUNDING FOR RESEARCH AND WE NEED PEOPLE TO UNDERSTAND THIS.

I just want to have a chance at HOPE for a cure. I have faith in God and that has carried me this far, and will continue to carry me. I just want hope that I will have a better future than the factual one laid out for me. I want to represent the young friends I have made who are also suffering with Dystonia. I don't understand what the older Dystonia community goes through, but I know what it is like to be in your prime and have Dystonia; it wears you down, makes you feel SO much older than you actually are. I am representing these young friends and I hope I do it well. 

It started with this blog.
I started connecting with other Dystonia sufferers.
I reached out to the Dystonia Medical Research Foundation.
I got to write an article for the Dystonia Dialogue.
I applied for the Douglas Kramer Young Advocacy Award and got it.
I'm going to D.C. to lay my heart out on the table.
This is my dream.
I am blessed.
It started with a blog.

Don't give up. 
Sometimes the small decisions lead to bigger things.
God is funny that way, isn't he? 



As always, if anyone suffering needs a friend, or if a young Dystonia sufferer wants me to bring something up for Advocacy Day, I am here. I'm not going anywhere. I'm not giving up. You shouldn't either.

There are moments that mark your life,

moments when you realize nothing will ever be the same,

and time is divided into two parts:

before this and after this. 

The Great Unknown

Another annoying period of writer's block. My emotions and my body have been all over the place lately. I went in for Botox on December 20th and in an attempt to avoid as much head weakness as possible, she did not do injections in the back of my neck. She also said that if I was not doing better the next time I came in she would have to increase the amount the Botox she is using. My translation:
I'm getting worse.
My anxiety has been off the charts for these past few months. Especially with my wedding and future plans coming together so quickly, the reality of my situation has been hitting pretty hard. 
Can I have babies? Where will we live? Will I ever find a high-paying job or will we have to struggle?

My mind keeps going back to what my biopsych professor said last year. We were learning about movement disorders (Dystonia was not one of them, which is actually what inspired this blog.) This professor was not aware that I suffer from a movement disorder, had he known I doubt he would have said what he said one day in class. As we are learning about these disorders, some of which were very similar in symptoms to Dystonia, he made the comment that if he suffered from a movement disorder, the last thing he would be doing with his life would be wasting it inside of a classroom. 
.......uhhhh.

I work 5 days a week and I do pretty well physically; working in a spa has its advantages. I am only taking one class this semester and it is already almost unbearable for me to sit there for 3 hours once a week. I don't know what is going on with my body. It feels like all the tension builds from my lower back up and explodes into my head. The pressure is UNBELIEVABLE. I am so uncomfortable I can't even focus on what I'm supposed to be learning. Not only that, but I am SURE this makes my Dystonia worse. 
So what the hell am I doing?


It's so frustrating for me because I was always the girl in my family that exceeded in school. Dystonia changed all of that and I feel like all the potential I was gifted with has been robbed from me. I don't want to disappoint my family or feel bad about myself or feel like I'm giving up. But realistically, struggling and suffering my way through Lord knows how many more years of school and then not be able to do anything with that degree IS a waste of time.

I guess I'm just feeling a bit lost. I don't know what God wants me to do next. School is just not in my heart. It's not something I would have chosen to give up but if my body is telling me it's making things worse, I can't ignore that. 

What now? I do not know. I know what I have, I know what I am blessed with, I'm just scared at this point. I don't want to get worse. I have to wait until March to find out what my Nuero says. If anyone has any advice or input, I'm all years.

Oh, and Chelsi Christmas, God has created a wonderful human being in you, I love you for always being a text away from an encouraging word and a reminder that God has not forgotten me. You are pretty rad and I love you!

Until I get out of this funk, all I can do is wait for God and whatever He has planned for my life, no matter what that looks like. 

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

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

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.

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.'

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!"