Tuesday, July 22, 2014

Dear Cameron and Heather

Hi friends. Life is busy. And good. 

Althought this has been a Dystonia-related blog and my personal journey with all that comes along with that, you never know who you might reach. I have underestimated the power of social media and who this blog and my words might touch. 
I have heard from people from a total of 6 different countries now who have stumbled across my blog. I don't know how it happens but it does and it's mind blowing.

I am a big believer in paying it forward, having compassion, and being a kind person in general. Life is too short to be a selfish asshole.
Personally, I am doing great. Dystonia is there but I'm living. It is SO EASY to get caught up in my own stuff. When I'm doing bad, it's easy to get caught up in how shitty I feel. When I'm doing good, it's easy to get caught up in how awesome life is and how truly blessed I am.

BUT...
just because I am thriving, not everyone out there is. This blog is not for me. The fact of the matter is, we are ALL terminal. None of us will make it out alive. My personal belief is that when that day comes, my bags are packed for paradise. I know not everyone holds this belief and that's okay-all I can do is speak my truth and that is what keeps me going. People ask how I deal, and there it is. Absolute faith.

But let's be honest. Life is hard enough for everyone..throw an incurable disorder in the mix, a painful disease, a deadly cancer, and life can just seem downright cruel.
Don't believe that lie. There is SO MUCH GOOD. In the midst of all the SHIT there is SO MUCH GOOD. Repeat that with me. There.Is.Good. People can be good and if there is something I can do to help restore someone's faith in humanity or even just a single kind being, I'm game. So let me tell you about Cameron and Heather...

Cameron and Heather are married. Heather was diagnosed with Mesothelioma 3 months after giving birth to her daughter. She was given 15 months to live. That was 8 years ago.
Heather had a life-saving surgery and had her left lung removed. Heather was lucky to live but others are not so fortunate. Much like Dystonia, there is a lack of education and awareness and Cameron has asked for my help in putting some information in my blog in hopes it will spread outward and onward. It is a preventable cancer and they are hoping to save lives by spreading awareness. Heather lived and instead of counting her lucky stars and moving on with her life, she and her hubby are choosing to make resources available in hopes of saving a life, which in my opinion makes them pretty damn cool.Here is a bit of education and information for ya'll:

The Mesothelioma Cancer Alliance has dedicated a significant amount of time in making mesothelioma.com the best resource for patients, families, and individuals wanting to learn more about the disease. The hope is that with a successful campaign, we can educate more people about this devastating disease and raise more awareness than ever!
Let me repeat that: mesothelioma.com


I have been absolutely stunned by how many people my blog has reached, who have found refuge and solace in the fact that we are not alone in this crazy disorder. Again...we are all terminal. Dystonia or no Dystonia, mesothelioma or not. If there is something you can do to make someone's journey a little better, a little smoother, filled with just a little more joy,  just do it. It's really not that hard. Be a nice person. Get your head out of your ass and pay it forward. I love you all. Thank you thank you thank you for the support and emails and kind words. You are all angels. 

If you love hard, don't apologize for your superpower. 
"this is for you...
this is for the no becoming yes
for scars becoming breath
for saying i love you to people who will never say it to us
for scraping away the rust and remembering how to shine
for the dime you gave away when you didn't have a penny
for the many beautiful things we do
for every song we've ever sung
for refusing to believe in miracles
because miracles are the impossible coming true
and everything is possible"
       -Andrea Gibson, "Say Yes"



       You were singing in the dark
whispering your promise
   even when I could not hear
I was held in your arms
   carried for a thousand miles to show
not for a moment did you forsake me 
Meredith Andrews

Wednesday, May 28, 2014

Hold Nothing Back

First and foremost, I have to acknowledge how inconsistent I can be with these posts. I have been absolutely horrible at answering the numerous emails I have received and I SUCK at texting back. So to all the kind souls out there who have reached out to me and haven't heard back-I'm getting there. I have a very demanding and happy 5 month old and she has to be first, but I'm still here and I'm still all ears and eyes and a whole lotta' love...just distracted.




So it's time to get focused. First of all, here is the update on my own personal health & journey. As I said before, I went into a pregnancy-induced remission and unfortunately symptoms started up again when I was 6 weeks post-partum. I have had one round of Botox treatment since; that was in February and it was a very small amount injected. I still have good days and bad days but I am training my brain to find different ways of coping. I had an appointment for injections last week but I cancelled the appointment because I feel ok. Not perfect. But why inject myself with something if I'm not truly truly suffering? The suffering is there but I am managing. It is a day by day process for me and focusing on the here and now has worked wonders. It sounds cliche and I'm annoyed of myself for saying it but never underestimate the power of right here and right now. Right now I am in bed with my pup and I can feel the Dystonia but I'm alright. I'm breathing. I'm moving. I'm feeling. 

I have received so many emails and I'm still delighted every time it turns out to be someone from a different country, or state, or continent. I post the link to my blog on my facebook and people have found me on google and I couldn't be more grateful for how far this blog has come and how many people it has reached. 

I've noticed that unless someone or something has truly, truly, inspired me, I don't have the best advice and I think that is a part of why I don't feel inclined to answer some emails until I'm ready to answer with an open heart and with honest advice and wisdom. 

A floodgate of openness and love and hope has opened up in my life and I'm not sure where it will take me, but I am grateful regardless because I feel that burning passion and purpose and determination to make my words be heard and seen and I just want to HELP those suffering souls out there. Based off all the emails and messages I've received, there seems to be a theme and one singular question I am getting asked; 
How do you HANDLE it? How do you ACCEPT it?




Such a simple question and such a complex answer. There is no simple answer, no trick or magic cure to living a "normal life." To put it simply, I just DO. Quitting is not an option. Laying down and letting it run over me like a truck is not an option. Throwing a pity party is not an option (okay maybe the occasional pity party is necessary but DO NOT MAKE IT A HABIT.) I'm picking up on a theme...and it scares the living daylights out of me but inspires me to the core-in all the emails I receive, every single person sounds so incredibly lost. So lost. So confused. Wandering around aimlessly with no direction; just angry and confused and hurting and afraid.

The good news is this: being lost gives you room to adapt, to change, to grab hold of an opportunity and live a life no one else has lived. It gives you a chance to think differently about your life and the people in it and for me personally, appreciate those who love me and stand by me. And I think that is the point...

This blog has unintentionally become a log of my (sometimes disastrous) love life. I can't help it. I started this with the intentions of being an open book-totally candid, completely transparent, and brutally honest even if it's embarrassing or unpleasant...what is the point of speaking my truth if I'm not going to share all? That is what connects me to this community I have grown to love and know. Speaking the truth is what has kept me going and honest about my truth and my relationship with myself.
So how do I deal? How do I accept this fate?




I believe in these simple truths:

1.) Going through something like this changes you. I don't see how it can't. It can be a bad thing. But it can also be a good thing. If it makes you a better person, a more compassionate, loving, and honest individual, find a way to have a relationship with your disorder. Embrace it. Nurture it. Adapt with it. But don't let it defeat your mind. Sometimes I feel myself slipping and spiraling down the rabbit hole into a pit of despair and feelings of inadequacy...STOP DOING THIS TO YOURSELF. There is absolutely NO point and it will stop your life right where you're standing. Keep moving. And if you can't move physically because of your disorder, never forget that you still have your mind. You can still be you and speak your mind and have opinions about things and desire things and you absolutely 100% deserve nothing but love and acceptance. Which leads me to truth #2...

It is no secret that I have a very deep and personal relationship with God. I have pushed and resisted that relationship this past year through all the bullshit I have had to go through but once again, God is bigger than my stubbornness and broke through that icy cold bitch wall I had built around my heart. For me personally, hearing over and over how I am not good enough has really invaded my mind in the worst way possible. I completely shut down and I am just now waking up from this temporary tantrum of "fuck everybody" but let's be honest here...
It is a cowardly way to live. It is fear based. And it is dishonest to what my heart wants. Don't build a wall around yourself because you are afraid of rejection and getting hurt. So many young women tell me over and over that they feel like no one will ever love them and accept them. My advice to them is simple...Always be an open book. Be gut wrenchingly honest about yourself, your situation, and what you are all about. Don't hold anything back. Holding back will get you nowhere...maybe a one way ticket to lonelyville and that is NOT somewhere you want to be. So my final truth...and I'm just starting to grasp this one...

Love doesn't discriminate. What is meant for you will find you and love you and pursue you and not let you get away. I think it really is THAT simple. Or at least it should be. 
I hope we all find someone who sees our scars and wounds and imperfections and disabilities and embraces them. This life is short and crazy and messy and scary but damn, there is so much to be grateful for. So much to look forward to. So much love to be had.

SO...this is how I cope. With pure and childish hope and by moving forward with the belief that everything will into place like a puzzle and someone will find me and see me and love the imperfections and never let me go. I am an incurable optimist.  This is SO much bigger than me and I know it gets easy to focus on how awful things are now...how lonely you are now...how bad things are now...but that's just now.

Please, friends, keep your heart open. I know so many of your are suffering but don't let it destroy your kindness. Don't let it close you off to love. Don't let it destroy YOU. 

So there it is. I have no medical secrets, no magic pill or tricks that enable me to cope. I cope by loving. And by hoping. I know things don't always work out the way we hope but my God, what if it does? If something as devastating as Dystonia can touch my life then why can't something absolutely amazing and unexpected touch it as well? That's all for now.

As always, I'm here. Please don't be shy or afraid to reach out. 







Friday, February 21, 2014

Dating: The Sequel

I want to...no, NEED to...address this topic as I received a very interesting email from a very kind woman seeking my advice. I know that I have talked about dating in some of my previous posts and even have a post called Dating. I just went back and re-read my "Dating" post from almost 2 years ago and it made me cringe a little bit...I said in that post that hopefully in the future I would gain more insight into the dating with Dystonia world and revise, so here is my revision. But first, what brought this on? A very nice and confused woman from Malaysia of all places!

I received an email this week from a woman who just started dating a guy with Cervical Dystonia. She asked me two questions that I found to be very interesting. The first: How will Cervical Dystonia affect our relationship in the long run?" The second: "Am I making a huge mistake by committing myself to him?" 

I found these questions fascinating because it gave me insight into what men might potentially question about me before considering dating me or committing themselves to me. It stung a little but they are legitimate questions and concerns and I wanted to address them and give my perspective in case another confused man or woman questioning their relationship stumbles across my blog.




To answer this question I had to put myself in her shoes and think hard about whether or not I would be able to date someone with Dystonia or any other illness. If I was the healthy one and I met someone with Dystonia, would I be wasting my time by dating or committing myself to them? Could I be strong enough to accept someone for who they are, Dystonia included if I loved them? Why would the illness even be a factor? My thoughts: If you love someone, you love every piece of them. Wedding vows are "in sickness and in health" for a reason and should not be taken lightly. (And yes I'm aware of the irony of this considering I almost walked down the aisle.)

Because the truth is, if I met a good, kind man and I legitimately liked him and saw a future, what in the world would keep me away?? I can't imagine looking someone in the face and saying, "I'm sorry, you're a wonderful person and I could really see a future, but because you have Dystonia, I'm going to have to pass." It's just like the last idiot I tried to date more or less telling me that because I had a child I wasn't worth his time. If you really want to make it work with someone, nothing, and I mean NOTHING should keep you away. 


I understand that the fact is, not everyone has the strength to date someone with a little bit of adversity in their lives. It's just how it is. Not everyone is a good match even if the chemistry is there. My life is filled with good days and bad days, Botox appointments every 3 months and days filled with pain afterwards. Does it make me any less worthy of love? Does it define who I am and what I have to offer? It has made my life more difficult but it has also made me more compassionate. It has made me accept that health doesn't last forever and it is something to truly cherish. I have met some amazing people and have been inspired to tears. It has forced me to be strong when I want to give up. It has made me appreciate the good days and find a way to laugh through the bad ones. I have found a powerful desire to keep on keepin' on when things seem impossible, and if that is something to be found undesirable, then there's not much I can do about that. You just have to hope someday someone will appreciate everything you have to offer. 




I have experienced someone I was dating tell me that if I was perfectly healthy things would be different right before we broke up. And it BROKE me. Validated every insecurity I had about my situation and rubbed it in my face. But you know what I took away from that ignorant and pig-headed statement? IT'S NOT ME THAT IS THE PROBLEM IN THIS SITUATION. It is absolutely, 100% his problem and should not be a reflection of my worth. I hope everyone with Dystonia or any other unfavorable circumstance realizes this. 
Because don't we all have something in our lives that is less than perfect, less than favorable?  



This was part of my response to my new friend in Malaysia.

This guy might try to push you away or continue to question why you would commit yourself to him. But I believe what he needs more than anything, if your heart is willing, is reassurance. It takes a strong person to accept someone despite the hard circumstances. I have come to learn that what I personally need more than anything in a partner is someone who loves me so much they are willing to go through all the ups and downs with me. I would hope someone wouldn't give up on me because I have Dystonia.

I think in a way, everyone has a Dystonia. That ONE thing in their life that makes them question why ANYONE would choose them, pick them, love them. 

Let's be honest, we all want that love and I believe we all deserve that love. I appreciate this woman taking the time to evaluate her relationship. I hope she gives this man a chance and doesn't go running and screaming in the opposite direction. 

Dating for me is a whole new game now; I not only have Dystonia but I now have a beautiful baby girl. I have already experienced someone making me feel...bad? unworthy? about having a child. Like she's baggage or something undesirable. It stung. and honestly made me feel like shit. And I cried. A lot. And those old questions of who the hell would want to date me? came crawling back like a bad infection. It took me a couple weeks to snap out of it and realize that his inability to accept every faucet of my life is his problem and not mine. And that's okay. A portion of that quote from He's Just Not That Into You came flooding into my head..


"...looked into your beautiful face, took full stock of you and all your qualities, and told you he was no longer in need of your company."

No one should take stock of all your amazing and flawed qualities and make you feel like you're not good enough. 

So my take on dating with Dystonia, whether you suffer from it or are dating someone with it, it doesn't define who you are. It hasn't defined how nice of a person I am, it hasn't affected my ability to love and laugh and travel and enjoy life and desire and crave love and make something of myself. It is part of my journey and I fully believe that someday, someone WILL take full stock of me and all my qualities and be like yes, you are enough. I hope everyone experiences this someday. I came so close to settling for less than what I now know I deserve. We all deserve magic. Life is too short for vanilla love.




Wait for it...


Tuesday, February 11, 2014

We Can't Stop

Ahhh, we meet again. I can honestly say I have been at a complete loss for words for almost a year now. I recently checked back into this blog for the first time in months and was shocked to find that it is still getting thousands of views. I have also continued receiving an influx of emails from people all across the country, some even from different countries, sharing their stories and encouraging me to keep blogging.

Welp, definitely failed in that "keep at it" aspect. I have also received many congratulations on meeting a wonderful man who supports me and all the complicated faucets of living with this disorder...well you all can please stop because I snapped out of my temporary state of insanity and broke up with him. I don't need to go into details because I don't want to bash the father of my child (yes, I have a CHILD...I still don't believe it).
Anyways, to sum up a very long, painful story, my wedding was paid for, dress fitted, found out we were pregnant in April, realized I was about to marry someone I was absolutely not in love with and who was a pretty awful person around June, broke off my engagement and made the decision to be a single mom, and went into a full-blown remission from Dystonia due to the pregnancy. Doctors don't know why this happens but it's almost like the body and the brain recognize that the body has a precious life to protect and nurture and gives the brain a break from the horrors of Dystonia.

It was an amazing 9 months of being Dystonia free but also a very lonely, confusing, and long pregnancy due to the OH MY GOD IM GOING TO BE A SINGLE MOM factor.
I can't even put into words what it's like living with Dystonia for 5 years, fighting every single day for my life and then all of a sudden...POOF. Gone. Symptoms gone. Contorting gone. Pain gone. I haven't received Botox treatment since last March. Absolutely incredible feeling. I was warned by my neurologist though, eventually the Dystonia WILL come back. We won't know when, we won't know how it will manifest itself, but it WILL come back BECAUSE THERE IS NO CURE.

I gave birth to a beautiful, healthy, happy baby girl I named Everleigh New Year's Eve and have enjoyed every exhausting, wonderful, precious moment with her these past 6 weeks Dystonia free...but as predicted, symptoms are starting to come back and I'm going in for treatment next week for the first time in almost a year.





I feel like I'm 17 and I'm being diagnosed for the first time all over again...going through all the emotions, depression, terror, frustration, succumbed to absolute and total despair last night and cried until it hurt, bitch slapped myself back to reality and got over it, and now I'm here, feeling awful that I abandoned this blog and my fellow Dystonia community just because I was in a temporary remission. My main concern is being able to take care of my baby girl, as I am essentially raising her alone and I am not allowed to have bad days where I feel like shit and just want to lay in bed and not feel the tremors rocking through my body. My life is not about me anymore-it is about Everleigh and making sure she is happy.



I don't even remember what it's like living with Dystonia because it has been so long since I've felt the symptoms. I have to re-learn how to live and adjust accordingly to make my life manageable and be the best mom (and dad) I can be. Plot twist...dun dun dun...

Last May I had the honor of winning the Douglas Kramer Young Advocacy Award and was flown to D.C. to advocate in front of Congress. It was an awesome experience but it is also left me feeling...confused...for lack of a better word. Some Congress members were awesome and listened to our stories and our pain and were genuinely interested, others not so gracious and empathetic. That's ok. I've experienced both types of people in my every day life. But making it to D.C. was THE dream. You can't go any further in advocating than directly to our government and I left feeling like nothing would be done. Hopeless, I guess you could say. Shortly after my trip is when I went into remission and I haven't had to worry about the ugliness of Dystonia until now.



I'm not quite sure what direction I want to steer this blog in...I got a message from an old friend with a completely unrelated health issue who read my blog and told me how much it helped her and how my words matter. I remember when I started this blog I was so nervous to be so vulnerable and open about the most difficult part of my life, but a friend told me that if I help just ONE person and make them feel comforted and not alone in some way, I've won. I'm hoping this is still true.

So now, what do I do with my life? Nothing went as planned, largely due to my own mistakes and shortcomings and I've chalked a lot of that up to a simple fact: I haven't fallen in love with myself. I have relied on a man throughout this whole journey to sustain me and make me feel not so...alone, as Dystonia can do. It WANTS to make you feel isolated, broken, unworthy, like it is something to be ashamed of and that you are nothing but a person with a lot of baggage no one will want to carry. That CANNOT be true though. I feel that way about myself so often...the question of 'who would want to love ME through all this craziness?' crosses my mind more often than it should, and what I'm realizing is I have been asking myself the wrong question. What really matters is do I love MYSELF despite my circumstances? Do I BELIEVE that I am worthy of love? Hmm...so now I'm single for the first time in my life, I'm a mother, I'm living with Dystonia, and I'm trying to figure out what that all means.

 
 

When I started this blog, it was a journey of advocacy, awareness, and it unintentionally became a log of my love life. So I guess the journey now is loving myself, broken and humbled and living with my eyes wide open for the first time in a long time. I want to be able to say that I got through this without relying on another person. I want to make my daughter proud to be my daughter and I want to teach her what real strength is. I also want to teach her it's never okay to allow people to treat her the way I have been treated. We teach people how to treat us and I'm finally starting to understand that...



I'm writing again with the hope that someone reads these words and is comforted by the fact that we are all suffering in some way but that we don't have to suffer alone. It is possible to find the purpose for our suffering. I don't know why I had to get pregnant for me to realize I was making a huge mistake, but I'm glad I did because now I have my daughter. I'm not sure why my heart has to keep breaking in a million different ways for me to see the light of day. I'm not sure why I keep LETTING people point out my shortcomings; being ill, having Dystonia, having a baby...I understand it doesn't make me the most eligible bachelorette in the city but I want to get to a place where I can accept these things about myself and BELIEVE that they're not baggage-they're a part of who I am and these things are beautiful and terrifying and they make me who I am. I want to get to a place where I can say I am fucking awesome and anyone who tries to tell me differently can eat it. I'm 23, I'm still coming to terms with my disorder, and I don't have all my shit together. And I'm ok with that.



It's hard being this vulnerable after all I have been through this last year but I started this blog swearing I would be nothing but an open book. My book has been shut and closed off for so long, I'm ready to start writing new chapters and being honest and open and passionate like I was when I started this journey. I hope it helps people. I'm sad Dystonia is invading my life again but excited for where it will take me this time. 

As Miley says...we can't stop....
Yes, I just did that. Slightly disgusted with myself for naming Miley, but whatever, it works.

As usual, I'm all ears and eyes and willing to listen, don't be afraid to send me an email or message me. And for all you fellow Dystonia survivors out there, keep twitching and spazzing and contorting on and look fabulous doing it. You're not alone.


                               "My primary relationship is with myself-all others are mirrors of it. As I learn to love myself, I automatically receive the love and appreciation that I desire from others. If I am committed to myself and to living my truth, I will attract others with equal commitment. My willingness to be intimate with my own deep feelings creates the space for intimacy with another. As I learn to love myself, I receive the love I desire from others." ---Shakti Gawain 

Monday, April 15, 2013

Bloom Where Ever You Are Planted

Where do I start? 

I started this blog last year for a couple different reasons. I was mad that Dystonia was not listed as one of the MANY neurological movement disorders being taught in my biological psychology class. I had a guy compare my life, my problems, my Dystonia to the pile of papers on his desk that he just didn't want to deal with. And mostly I was sick of pretending that I am a normal girl, I live a normal 20-something life, and that I was just like everybody else. 
That couldn't be further from the truth though, and I think the greatest disservice anyone can do to themselves is pretend to be something they're not and be ashamed of something they have no control over. It was my "coming out" of the Dystonia closet.
A couple years ago I discovered something called Advocacy Day in Washington, D.C. It is the Dystonia communities' chance to talk to legislature and try to raise awareness and funding on the Federal and State level.
Kind of a big deal.
I didn't know where this blog would take me when I first started. I would have been happy if I reached just one person. As usual though, God has opened doors for me that I didn't even know I wanted open. I received an email from my mom in March, the subject line containing a very simple "DO IT DO IT DO IT!" She was urging me to apply for the Douglas Kramer Young Advocacy Award, which would allow me to attend Advocacy Day in D.C. 
I filled the application out which contained a series of questions; How does Dystonia affect my life, What I have done to continue advocacy, What is my experience with Dystonia, etc. I wrote from the heart and pressed send, not thinking I would actually get picked.
Surprise! God had other plans for me, clearly. I still can't believe it and this is beyond my wildest dreams; a chance to not only advocate but meet people who are fighting the same fight as I am. Such an opportunity! 
I've been going over in my head what I might say. Which has brought me back to what I fear most about my disorder.





This is what I know for sure, these are facts that have been given to me.
Fact: There is no cure for Dystonia.
Fact: It is progressive. Eventually, I will be immune to the Botox treatment I receive.
Fact: Deep Brain Stimulation would be the next step.
Fact: DBS is not a cure.
Fact: In order to get pregnant and carry a child, I have to stop ALL forms of treatment and will be limited to taking only Tylenol. (My fiance and I REALLY want kids.)
Fact: Without treatment, my head contorts (painfully) to the left and I have tremors, leaving me in excruciating, terrifying pain.
Fact: I have talked to mothers who have Dystonia and carried a child and they all warn me it is NOT an easy thing to do.
Fact: My future is uncertain.
Fact: I'm scared.
Fact: I am tying my life to an amazing man, and if my future is uncertain, so is his.
Fact: WE NEED A CURE AND WE NEED FUNDING FOR RESEARCH AND WE NEED PEOPLE TO UNDERSTAND THIS.




I just want to have a chance at HOPE for a cure. I have faith in God and that has carried me this far, and will continue to carry me. I just want hope that I will have a better future than the factual one laid out for me. I want to represent the young friends I have made who are also suffering with Dystonia. I don't understand what the older Dystonia community goes through, but I know what it is like to be in your prime and have Dystonia; it wears you down, makes you feel SO much older than you actually are. I am representing these young friends and I hope I do it well. 

It started with this blog.
I started connecting with other Dystonia sufferers.
I reached out to the Dystonia Medical Research Foundation.
I got to write an article for the Dystonia Dialogue.
I applied for the Douglas Kramer Young Advocacy Award and got it.
I'm going to D.C. to lay my heart out on the table.
This is my dream.
I am blessed.
It started with a blog.



Don't give up. 
Sometimes the small decisions lead to bigger things.
God is funny that way, isn't he? 



As always, if anyone suffering needs a friend, or if a young Dystonia sufferer wants me to bring something up for Advocacy Day, I am here. I'm not going anywhere. I'm not giving up. You shouldn't either.


There are moments that mark your life,
moments when you realize nothing will ever be the same,
and time is divided into two parts:
before this and after this. 


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!!!!


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.