Monday, February 11, 2013

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. I would rather work and learn as I go. I love my job, I love the people at my job, I just want to be able to support my future hubby to be the way he supports me. I don't want to be rendered useless. I want to have a baby! My fiance is too amazing of a person to not pas on offspring into this world. We need more people like him in this world.
I have been so cranky and mean and bitchy and whiny and SO utterly exhausted and I can't even find the words or reasons to explain to him why and he STILL doesn't break. He holds true to his faith and love for me and takes it with a grain of salt. 
I had the chance to sit down with his mom and she brought up my situation. Her eyes got all watery and she told me that even if I end up in a wheelchair or completely handicapped in the future, Jeremy is perfect in the sense that it won't waver him or his love for me and he will stick by me no matter what. She told me this on Christmas. I am marrying into the most AMAZING family. 





Everyone with Dystonia deserves what I have been blessed with. It takes a special person to do what Jeremy does and to face what we are facing, I cannot wait to stand up there and say our vows and someday bring a child into this world. I know what I am getting myself into, getting off all treatment to carry a baby. But I guess we will cross that bridge when we get there. 

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. 

ps...I'm getting married in 215 days. EEEEEEEEEEEEEEEEEEEEE!!!!


3 comments:

  1. Hi Nicole my name is Michelle AKA "Battery Girl" I will explain more bout that in a bit. I have had Dystonia scince I was born SO believe me when I tell you that I DO KNOW EXACTLY what you are dealing with and facing. I have had 40 years of EXPERIENCE. I want you to know that you are NOT alone and there is HOPE!!!! I came down with Viral menegytis last January 19th 2012 although I went to the ER no testing had been done so to say for sure it was menegytis there is no real proof however, I went on for 75 days with a Migrain headache, I never have had troubs with headaches ever before So OMG this was a NIGHTMERE. I ended up going to a Nuerologyst who came into the room took one look at me and said I think I know whats been causing your head to ache and Oh by the way what are doing about your Dystonia? I was amazed he knew bout Dystonia and kind of excited he knew the real name lol I told him nothing just been dealing with it on my own for bout 14 years. He looked at me in total AMAZEMENT & asked well you use muscle relaxers right? I said NOPE I hate taking meds I go to a chiropractor 3 times a week damn near religiously, I sit in our hot tub, book an occassional massage, & if its super bad I take IB Proffin but other wise thats all I do. He offered me Botox & I told him Been there done that and not going back. He said have you heard of Deep Brain Stimulation? I think my FACE went WHITE as a ghost cause he recognized that it sounded scary to me So Rather then CRAM me FULL of facts he'd only give me a little bit of info throughout him examining me for the headaches. By the end of the visit he had to turn off the lights to look at my eyes and within that few minutes I thought to myself "Hell if Grey's Anatomy could do brain surgery, I could try it too LOL!!!!!!!!" throughout the visit I kept looking at my Hubby who was in tears (This man I have only seen him cry once & well thats another story & I knew "I HAD TO TRY" I asked questions like How long have they been doing DBS and what are the risks, he gave me the knowledge he had bout the surgery and when he flipped on the light I said "Dr. I would like the you to get me in touch with the Doctors who do this & then........... My Hubby and I both started bawling. That was in March by April I had a appointment over at Swedish Medical Center, Cherry Hill campus Seattle WA. I had to go through testing, lots of it before it was determined that DBS would be a viable option for me. Once it was decided taht indeed DBS would be a option for me to treat the Dystonia ( IT is NOT a CURE!!!) I had surgery August 8th 2012. Never once did I feel "PUSHED" into any decision. I was scared 3 times but I just asked the question it was explained to me and that fear NEVER returned to me. From the day of the surgery all my pain left me!!!!!!!!!! It has stayed away & Now for the first time in years I am able to work on getting my body to feel what "Being Straight" feels like its hard work I go to therapy every week & I work on my posture all day long every day !!!!! It doesn't hurt to cook anymore I used to only be able to be in the kitchen for like 10 min. Any way I dont want to overwhelm you I just want you to know that you can talk to me any time & ask me anything & I do mean that. I hope this finds you with HOPE!!!!!!! ~ Battery Girl =0)

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  2. Hi Nicole,
    I just came across your blog. I was diagnosed just over 3 years ago that I have cervical dystonia. I just wanted to let you know that 4 months ago I gave birth to my beautiful
    Little boy who was healthy as can be even though I continued getting my botox treatments through out my pregnancy. My dystonia seemed to dissapear while I was pregnant just the odd occasion my head was twisting. I'm living in Ireland where dystonia realy isn't common I don't know anyone with it I'm even my doctors first patient with it. I just wanted to tell you, you don't need to stop botox treatment when you decide to have your family :-) :-) :-)

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  3. Yes your thought process was the exact same as mine..Keep the faith and God Bless :3

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