My Top 20 Things I Want People to Know about my Crazy, Wonderful Dystonia Life

heartFebruary 29th, 2016 is Rare Disease Day.  I have cervical dystonia, which is considered a rare disease.

I was diagnosed with early onset cervical dystonia after my second daughter was born. CD is a neurological condition that causes the muscles in my neck and shoulders to spasm involuntarily. For some people, it gets progressively worse as the years go on. There is no cure for dystonia.

So, for Rare Disease Day here are my top 20 things I would like people to know about my crazy, wonderful dystonia life.

First, why CD sucks:

1. For me, dystonia results in constant pain, chronic dizziness, and occasional migraines.

2. The nearest cervical dystonia physical therapist is a 45-minute drive each way. She puts me through the worst pain imaginable. When I get done I feel like I have been hit by a truck.  Actually, hit and then backed over. But the pain makes me feel infinitely better.

3. Valium. Oh, valium. I have a love/hate relationship with valium. Unfortunately, it has to be my very best friend. I wish I could get a new best friend.

4. My neurologist says I have 12 good years left. (Seriously?!?) I told him he is dead wrong, and he is. Period.

5. I hate cold. Cold for me = pain and dizziness.  I am counting down the years until I can move someplace warm.

6. I say the wrong words ALL the time. Probably over 50 times in any given day. My 4th-grade students find it hilarious. The people closest to me are used to it and correct me. It is one of the most infuriating parts of this disease. Strangers probably think I am drunk. My neurologist is sending me to a speech therapist in March.  I am skeptical.

7. My head tilts but not a lot. Stress makes it worse.  It drives my husband crazy and he is constantly moving it back to “normal”.  He doesn’t understand that  “normal”  feels so unnatural for me, my head might as well be touching my shoulder.   

8. My body is covered in bruises from head to toe. I spend a lot of time running into things.

9. I desperately wish my dystonia didn’t affect my children or my husband. I feel like a burden.    

10. The only course of treatment left for me at this point is Botox injections in my neck. I am stubborn enough to never allow that in my body.

11. At my neurologist appointment this month, my neurologist informed me that one day my bladder will give out. I tried to tell him it wouldn’t, but he said it’s not a matter of if, it’s a matter of when. He says by the time I am 60. The cause: a combination of the physiology of my urethra, having CD, and being on high doses of valium for years. He told me to “give him a call” when I have a prolapsed bladder. What. Ever.

12. I am paranoid that anything new happening to my body means my dystonia is worsening.  When my right eye started twitching, Google told me I had blepharospasm dystonia.  Or I was dying of cancer.  Either way, Google is not my friend.  

13. For whatever reason noise angers my dystonia. It makes my shoulders tighten.  I couldn’t go to the movies for over 2 years.  Then I discovered these things called earplugs. Genius. I never leave home without them.

14. I had a pity party for myself when my symptoms were at their worst and my neurologist couldn’t figure out what was wrong with me.  It kind of lasted for years.

BUT…

There are also good things that have happened since onset.

15. Through years of closely tracking my episodes and learning my triggers, I have completely changed how I do all of my day-to-day activities. This has allowed for my episodes to decrease drastically. I am currently the best I have been since my original onset of symptoms.

16. I have been in partial remission since summer 2015. I don’t know that it will last forever but I will ride it for as long as I can!

17. I wouldn’t be here without my husband. He is my cheerleader and my punching bag. He never minimizes the pain I am in.

18. I really don’t want pity.  People think they shouldn’t complain around me because of “everything I go through.”  I don’t want people to think that way. Throughout this journey, I have realized that there are many people I know and love who live with some sort of pain or suffering each and every day. Most of them are not nearly as verbal about it as I have become. My heart goes out to each one of them. Even if it’s a sinus infection, don’t play it down.  Sinus infections suck.

19.  Every day I thank God for my life. It wasn’t the journey I had planned, but I am so very richly blessed in ways too numerous to count.

20. For whatever reason I am being called to write about my experiences.  I’m not sure why and I most certainly don’t feel comfortable doing so.  I’m a pretty private person. I flat out told my husband last night that I did not want to write this. But, my mind refuses to rest until I write.  I am sure that God has a reason for this. I just don’t know what it is yet.  

 

And a big thank you to Patient Worthy who published an edited version of this.

15 Things I Want You to Know About My Crazy, Wonderful Dystonia Life

 

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