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.


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.


"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. 
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?

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