Monday, November 5, 2012

I'm Still Here

I can't believe I have failed to write a blog since July! I could blame it on all the crazy and exciting and stressful things that have happened in my life since then, but at the end of the day I have no excuse. I've been getting subtle signs and nudges from people I care about to start writing again; I have received 2 emails this week alone from random strangers from different parts of the country letting me know how happy they were to have stumbled across my blog. I got a text from a much loved friend who shares this strange disorder saying she missed my blogs and how much they helped her. 
Not only that, but I have been extremely stressed out, and writing is a perfect cure for stress. 

The first thing I would like to mention is I have to laugh reading all my blogs about dating. I am marrying the most wonderful, patient, and kind-hearted man I have ever met; he is more than I could have asked for and has willingly dove headfirst without hesitation into my scary and unpredictable life in living with this disorder. I have learned so much about myself and how living with this affects my mood, behavior, and how I treat people. Moving in with someone who is just getting acquainted with Dystonia is not an easy thing-there is a lot to explain and living in such close quarters with someone when I am in the middle of a dystonic storm can be quite the challenge. I'll admit it, there are days where the pain and agony is so severe and frustrating that it unfortunately comes out on my fiance, Jeremy. I would expect any guy to either lash right back at me, get mad, confront me, kick me in the face for being a butthead, etc etc. 
Never did I expect such patience and love. God knew exactly what I needed and was faithful to bless me with such a guy, and boy did God do a good job because this is a good one!

I have learned that I need to find a way to channel my frustration when I am in pain. I'm not quite sure how to do that. I just tell Jeremy I'm having one of those "Dystonia days" and I don't feel like talking at all. The last thing I feel like doing is talking. I try to focus on other things besides the pain. It's hard. When I lived at home I didn't have to explain much; my family was there from the beginning when this first hit and saw the transformation and learned that I have days I need to be left alone. I have never had to explain it before but I'm grateful I have a guy who understands and is more patient with me than I deserve. Can't wait to say I Do and marry him next September. I don't deserve someone as kind-hearted as him but that's the beauty of God. Just another blessing He has poured out into my life. What happens to me happens to Jeremy, and what happens to Jeremy happens to me. For any girls out there, young, old, somewhere in between, I know dating with Dystonia can be rough. It's confusing and frustrating. But there ARE good men out there, I promise! Wait for the one that will embrace every faucet of your life, good and bad, without hesitation. It's worth the wait, pain, and bumps along the road you may face.

On a different note, the stress that my job has put on me has resulted in me dropping the only class I was taking this semester. I live about an hour away from my job and not much closer to my college and I have learned after 4 years that pushing myself is not worth the toll it has on my body. Unfortunately, I still have no idea what I want to do with my life. I have to be realistic and factor this disorder into the equation when thinking of a career path. I love writing; I love advocating. It seems to be the one thing I am passionate about. School, not at all. Life is too short! I'm too unhealthy at my age to waste my time sitting in a class being uncomfortable as hell learning math equations I will never use outside the classroom. That's how I feel right now, at least.
I'm not discouraging anyone with Dystonia from going to school; it's just one of the things I haven't quite figured out how to handle yet. My heart is simply just not in it. So for now, it's work. I know that won't last forever though. Eventually I am going to have to figure out what it is I want to do. 
Having kids is next on the list of complications. Jeremy and I very much want our own children, but I don't know how someone with Dystonia can do that. It terrifies me to think it might not happen. Not something a 21 wife to-be should be stressing about. Praying it's all in the plan! If anyone out there has experience, knowledge, advice, anything about living with Dystonia and pregnancy, please please please reach out to me!

I guess the whole point of this particular blog is to let my regular readers know I'm still here! I'm still here, I'm still fighting, suffering, crying, enjoying the days that are pain-free, dealing with the ones that aren't, and trying to support anyone in pain in any way I can. There are a few people in particular I can think of that I know rely on this as a source of comfort and commonality, and I'm so sorry I've been MIA! I'm not going anywhere!! I'm here for support, comfort, venting sessions, dating advice, or even if you just need a friend. I'm not going anywhere! I'm going to keep myself in check and be more diligent about writing regularly.

On an exciting note, to those who get the Dystonia Dialogue, look for my face :) They published an article I wrote about living with Dystonia and being so young. If I accomplish nothing else but reach out or touch at least 1 person, I will be satisfied. Love all my fellow Dystonia friends out there, as well as the real life family and friends who have pushed me to get back out there and continue writing. I appreciate all of you :)

I'll be back, I promise.


  1. Hey Nicole!
    I recently found ur blogs on Dystonia & can't tell u how much I appreciate them.! I'm 21 with Dystonia, but I've had it all my life. I had an injury in my neck at birth.
    I've never had any medication or botox injections for it & it wasn't until 2 years ago that I was actually able to attach a name to my condition.
    I have Spasmodic Torticollis/Dystonia.
    Or a.k.a Cervical Dystonia.
    In part I didn't know what I had cuz the last time I went to the doctor for my condition I was 14. I distrusted doctors, nobody would help me,all they would explain was what was wrong with my neck, why I looked the way I did but would say there was nothing they could do, so it wasn't until recently that I researched it & found out there's definitely more knowledge on my condition. I know it was foolish to stop going to the doctor,I prolly would have gotten muscle relaxers to ease my pain a lil by now.
    Sadly my facial features have been slightly deformed because of this, not very noticeable, but you can definitely see it at times. As an infant I was never given PT or the lil helmet to correct my posture & now it's too late to correct the damage.
    I've had it hard growing up with Dystonia on an emotional level more than physical.
    I didn't have the kind of support u did when u were diagnosed with Dystonia, and I'm so glad u had the help!
    It's been very tough growing up with this condition. I've been in the dark for so long, but lately I've considered telling my story to ppl, & finding others with this condition. I would hate for anyone to go through something like this all alone, the way I did.
    My parents gave up after hearing a couple doctors tell them so lil about my condition, they made no effort to inform themselves about it further or seek more help for me, my mom seemed ashamed of it, & put many insecurities on me, & my dad would avoid it & would act like I was a normal girl growing up, but I wasn't. I needed help. I needed their emotional support, & they didn't provide it, I needed physical therapy, but I didn't get it. My mom would massage me sometimes, but it wouldn't do much good. Because of my insecurities & the way my parents taught me how to handle this, I wouldn't open up to ppl about it. I was very quiet about the whole thing, and was very ignorant about my condition.
    I know better now, I will definitely be reaching out to others so they are never left in the "dark" as I was for years.

  2. I'm mainly writing to u because u said u want to have children, but don't know how someone with Dystonia could do it. In my experience, I've had 1 child,
    & it was kinda hard with the extra pain you will be feeling, in the sense that pregnancy gives u lots of discomfort, pains & bodily changes besides the regular pains u feel from Dystonia, but I really didn't have much trouble besides that.
    My pregnancy went smoothly and had a very healthy child. I did end up having him in c section though,because he was breeched.
    But it did help with giving birth in a much painless way.
    The only problem I did have was afterwards, because the injection they give u in the back to prepare u for the c section wasn't done right, they punctured my spine & spinal fluid went to my head which gave me the worse migraines I've had up to date! It lasted about a week then I was fine. After I was just recovering from my c section & getting help the first couple months, until I was ready to do things on my own. But the spinal fluid thing happens rarely. I know that had nothing to do with my Dystonia, it can happen to anybody, but I understand how living with Dystonia, u really don't need any more pain.!
    I do believe u can have kids, I'm sure u will have support from friends & family, yes the pain will be there, but you & your baby will be fine. Dystonia is so unpredictable, but I was thrown head first into my pregnancy & God saw me through it & I'm just fine. Juggling kids with Dystonia is what I think u should really consider, but it can be done. You shouldn't miss out on this just because of Dystonia!
    I'm hoping that my comment is helpful to u & u read it. If u could continue to post more blogs I will definitely be reading them.& I hope u continue to stay strong and ur future marriage lasts!!

    -Nereyda <3