Saturday, June 25, 2016


Anddddd...I'm back. For how long? I don't know. But I have so much bottled up my brain has reached it's maximum capacity so let's work through these things bouncing around in my crazy Dystonia head through my sanctuary-this blog. That I have severely neglected (again) on account of huge life changes.

I have received emails from a lot of woman my age who are...stuck? for lack of a better word. And I am the definition of feeling stuck and confused and overwhelmed so let's strap on our big girl boots and get right to the real-life stuff people with disorders don't want to talk about (me).

I am officially a single mom living on her own. How am I doing this with Dystonia? I HAVE NO IDEA. The grace of God is my only reasonable explanation. I never thought the day would come when I would be able to support (barely) myself and my daughter and take care of her on my own. But I did it. And it's been great! I take pride in my small apartment and I am SO BLESSED with the most incredible toddler out there but wow...what a lonely experience.

Dystonia, by nature, is an isolating disorder. It is so hard to build new relationships when you literally have a messed up brain and can't explain in words that exist in any human language that describe the invisible agony we experience on a day to day basis. How do you explain something you can't see? And if your Dystonia is bipolar like mine, I may feel great one week and the next week I'm forcing a smile at work and answering every "how are you?" with "I'm great!"
Such a lie. But I mean, what else do you say? "Well, I feel like my brain is being squeezed from the inside out and my neck hurts so bad I want to die, how are you?"
Noooooooooo. That doesn't work. So I lie. 

I'm not ok. And it's ok to not be ok. There is something so liberating about talking about ISSUES. Life issues. Single mom issues. Dating issues. Health Issues. Why? Everyone has SOMETHING so on some level we are all connected through out brokenness, yours just may look a little different than mine and I am willing to put mine out there for the world with the hope I may receive just one single email from someone else hurting who needs a friend.

People with Dystonia know how much stress can destroy you. I HAVE to take it easy. It doesn't mean I won't work hard, but I have to be careful. AND I DON'T WANT TO BE CAREFUL. I can't explain in words what it feels like to watch these incredible people do incredible things (real estate) and wish that was you. The grind, the crazy hours put in, the stress and fires to put out...I'm so jealous. I don't know how to get past wondering what and who I could have been and what I could have done with my life had I not gotten sick at the age of 17. It's so hard to deal. I'm pissed some days and other days I'm just grateful I can do what I can do. Feeling like you will never get to be the best version of yourself is a heartbreaking experience. I feel betrayed by my body and brain. My mind wants so badly to go out there and just absolutely destroy a career and be successful but if I go full steam ahead I get sick quicker.
So I'm balancing on a very thin line. My desires and my dream and my reality. "Stay healthy for your daughter. Stay healthy so you can pay the bills. Don't go out tonight and rest instead so you don't pay for it later."
How do you be 25 years old when you can't fully BE 25 years old?

How do you cope? 
Still working on that.

Personal life....has anyone ever accepted someone with a progressive, incurable neurological disorder? What if that sick person happens to be a single mom as well? Oh the negative feedback I get..knife right to the heart. I don't know what else to say about this one. 8 years later and I'm finally ready to meet someone and it's not happening, not for a lack of trying. If they don't accept the health situation, that's a dead end. If me being a single mom is undesirable, it's a dead end. I love me a good love story, so if you have Dystonia and have an amazing spouse who loves you, email me at Give me hope when I really need it. I like hearing people can be flawed but loved. Complicated but cherished. Feeling unlovable is excruciating, so please, share with me your joy and we can celebrate that together. 

So I find myself literally on the curb on the side of the road bawling my eyes out one day over something I have no control over, and I'm thinking, how did I get here? Why me? Why? 
And I sit on my couch and my sweet daughter is sleeping in her bed and I sit here alone in quiet agony sobbing for someone to be sitting by my side. Not talking. Not pretending to understand. Just being there. And letting it be down that it's ok to be weak sometimes. IT'S OK.  

I am a complicated person and I think a lot of people with Dystonia don't feel understood and probably feel complicated as well. So isolation is easier than the rejection and pain (physical pain or otherwise).

All I can think is, now what? Where do I go from here? What's next for me?

Only God knows, and I take great comfort in that. My pain is for a reason. I was put on this earth to share and be myself and contribute what I can-so here I am, contributing. Acknowledging that pain is a part of life and my mission is to find purpose behind that pain. 

Dystonia heart breaks for the hundreds of thousands of people out there hurting. Desperate. Lost. Over it. At your wits end. I feel you, I acknowledge you, and you are not alone. Ever.

We deserved to be loved in all our forms. So if you're reading this and you feel lost and undesirable and broken and so horribly human and flawed it hurts, you are loved by a God who is so much greater than our brokenness. Keep praying. Keep connecting. Keep the emails coming-we are in a very exclusive club and support and love is the only way to get through it. 

If you feel how I feel it...damaged goods...immediately get that out of your head when it happens to pop up. Like, ASAP. Just stop. Because you are worthy, always.

Email me if you need a friend. 
I'm here.
Keep fighting and don't let your broken brain destroy your mind. 
Find purpose behind your pain, let it make you a more compassionate person instead of an angry one. I'll work on that one too.
That's all for now.
I'm always here.

You are worthy, always. 


  1. Thanks for sharing... Before this, I'd never heard of dystopia.
    Brace yourself, and you're definitely not alone.

  2. Dear Nicole,
    You have a beautiful smiling baby and so are you. My name is Lina Schneider, I am 31 years old,
    And live with my boyfriend in Belgium, but I am Colombian. I was diagnosed in 2012 with cervical dystonia/spasmodic torticollis. Doctors told me this condition was forever. I know how you feel and what you are going through, I don't have a baby though. I just want to tell you that I am cured now, the last time I can remember having cervical dystonia was in the summer of 2014. It was a long and difficult process but I am so thankful I don't have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to be in contact and share experiences and thoughts feel free to e-mail me;

    1. My name is Cassie.I am 43 years old.I have been recently being diagnosed with PKD type of dystonia.It is based upon any physical activity either in motion or after motion.I have currently had it for a little over two years.My father started symptoms like mine when he was 33 years old.I told the doctor that my dad had similar but left without information as to what exactly we had.I told my dad about the neurologist.I went to my father's appointment with him and within 5 minutes they said PKD.When I would have very bad attacks I called myself a hot Twitchy mess.So hard to accept.The more knowledge the more you can understand.I have been with my husband for 25 years.I always tell my husband he needs to trade me in on a new model.I know that he loves me unconditionally but sometimes wonder why.There is that special someone for everyone.I have to try everyday to laugh about this because I think I would make myself crazy if I didn't.As soon as my symptoms started I thought to myself oh my goodness am I going to be like my dad 30-plus years and not have any idea of what this is.It is an absolutely hopeless feeling.This is the first time that I have sent any message to anyone outside of my father about this disease.At this point I am still trying to come to grips with the reality and magnitude of the situation. very well-known is because you become very isolatedd.As you well know that even though you may have the exact same diagnosis the symptoms vary in so many ways.In my father's case he can do lots of physical activities all day long and then when he rest after physical activity is when his symptoms decide it's going to act up.In my case the more physical activity I do the worse my symptoms get.Most of the time I am couch-bound.Very limited on the amount of activity I can do.This includes shopping vacuuming up and down stairs even walking for that matter.A lot of times when I know I am feeling pretty good I will push myself as hard as I possibly can to at least feel like I am getting something accomplished but at the time end up completely debilitated for days.I will get to a point where I have done so much that it is Non-Stop and pretty much look like I'm doing the hula dance.In my situation I would rather have my hula dance because at that point it no longer hurts and doesn't feel like being electrocuted.Everyone has tried to tell me to slow down and try to do one thing.Someone with ADHD telling them to slow down is like telling someone not to live.I'm so lucky that I'm not alone.It is absolutely mind-boggling to me.I know in time I will be less embarrassed about this.Maybe with a little help mind body and soul eventually will make me feel whole again. With the help of my primary care physician and also this neurologist we have been trying to work on many different medications to help at least treat the symptoms of dystonia. I know that I'm extremely happy with knowing that one of the medications I have been on almost since the beginning of this is helping my father.I'm hopeful that we can come to a combination of medications or combination of treatments that can not only help myself but also others.I want to thank both of you ladies for trying to get this message sent out to people that are like you and that understands you.The more we talk to each other and to others about this the more we will hopefully know and try to find a cure.As well as other movement disorders like ours.I want to thank you ladies again for sharing your stories and having others come to grips with the lifelong battle of this disease. Cassie

  3. As a sign of gratitude for how my husband was saved from ALS, i decided to reach out to those still suffering from this.
    My husband was diagnosed of ALS in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he always have trouble swallowing , and he always complain of Weakness of the body . we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and he left the contact of the doctor who had the cure to ALS. I never imagined ALS has a natural cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life. ALS has a cure and it is a herbal cure contact the doctor for more info on on how to get the medication. Thanks for reading my testimony.

  4. Thank you for sharing your experience. Dystonia symptoms like involuntary contraction of the neck muscles...Botulinum toxin
    is also a treatment for this..

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