Sign the #Dystoniapetition so my Pain Can Suck Less

If you care at all about me and you have never known what you can do to help me with having Dystonia, here is your chance!
Please sign the#dystoniapetition to make September Dystonia Awareness Month. Go to: Petition.dystoniaaware.org Fill in the boxes and go to your email to confirm.Comment on this post so I know you signed! 

Then, ask 10 people to sign and share! We need close to 900,000 more signatures with only a week left. Sign for me because I’m in constant pain from this horrible condition. Sign so all this pain might suck less. 
  
Here is more information about the petition and about Dystonia! 
Make September Dystonia Awareness Month

Despite being the third most common movement disorder, most have never heard of dystonia. Affecting an estimated 500,000 people in North America, dystonia causes the brain to send improper signals to muscles, resulting in awkward, often painful, movements and postures. Dystonia affects people of all ages and can make it difficult to perform even simple tasks like walking, talking, eating, drinking, and even breathing. There is currently no cure for dystonia and it is not unusual for people to wait years to decades for a diagnosis. Having an officially recognized awareness month will bring much needed attention to this disorder and hopefully lead to prompter diagnoses, better treatments, and some day a cure.
Please take a minute to add your signature. You could be changing someone’s life.

The Challenges I Face With Relationships and Sex as a Woman With Dystonia

This article was published by The Mighty. It’s about Sex and Dystonia. You’re welcome. 

Here is the link:

http://themighty.com/2015/09/the-challenges-i-face-with-relationships-and-sex-as-a-woman-with-dystonia/
I have cervical dystonia, which is a debilitating movement disorder that causes my shoulders, neck and other areas to spasm constantly. I also experience severe chronic pain and nine other disabilities. I’m 26 years old and currently dating my boyfriend of five-plus years, John. To make matters more difficult, John lives in Austin, Texas, and I live in Northern California.

Before meeting John, I was diagnosed with cervical dystonia and a whole host of other health issues. I never thought I’d find someone who would want to date me, let alone want to spend the rest of his life with me. I thought I would be single for the rest of my life. I thought I would be a cat lady and resolve to stop looking for love. I thought I was damaged goods. I thought no one would want me. Heck, I didn’t even like myself in the early days of my diagnosis. I was at war with my body; I didn’t have time for boys.
Fast forward to today. John and I are a happy couple. Although we have a long-distance relationship along with my disabilities, we manage to work through our challenges. A constant challenge is managing my disabilities and making sure I’m in a positive headspace. If I’m not, John gets me dressed and we go out. Then I feel better. It’s as if he intuitively knows what to do. We’ve also learned to be flexible when my symptoms arise.
  
By now, you might be thinking this guy John is extremely understanding and compassionate. I can verify that he indeed is. I can’t count how many times he’s carried me to the bath when I’m too weak, brought me food and done my laundry (even my delicates). I’m pretty spoiled. I quite enjoy it.
Now that you know more about my boyfriend and me, I think we can start to get more personal. Now I can talk to you about a biggie: sex. Yes, I can confirm we have sex. And I can confirm we both enjoy it very much, but there’s a big secret we carry around about our sex life. You see, my disabilities affect every aspect of my life — even my sex life. Now, how can I put this without sounding inappropriate? Well, we’ll be enjoying ourselves and then my spasms and pain kick into overdrive, and we have to stop. You see, that’s why John is literally the best boyfriend a girl could ask for. He never blames me when we have to stop. He always comforts me because I get frustrated and usually start to cry. I mean, can’t a girl just get laid? Some days, I get my medication timing just right and, well, you know the rest. 
  
I don’t think there’s enough of a conversation about people with disabilities and sex. My health insurance only referred me to a specialist who treats cancer patients to have a better sex life, so I didn’t qualify. I believe it’s something our healthcare system is not properly addressing. Since some experts say sex is an important part of happiness, I think we should start a conversation.
If you are a person with disabilities, how are you able to achieve a fulfilling sex life? If you are a partner without disabilities, what things can you do to help your disabled partner? Where are the experts who can help people like me have more sex, and why aren’t they available to me through my healthcare company?

Things People Who live with Dystonia Wish Others Understood (repost by The Mighty by Melissa Mcglensey)

http://themighty.com/2015/09/17-things-people-who-live-with-dystonia-wish-others-understood/
I wrote 2 of these posts in this article. 

Dystonia is a condition characterized by persistent or intermittent muscle contractions causing abnormal movements or postures. Multiple forms of dystonia exist, and dozens of diseases and conditions may include dystonia as a symptom. It’s a complex condition with no cure or known cause, but it affects around 300,000 people in the United States and Canada.

The Mighty recently teamed up with the Dystonia Medical Research Foundation and a blog called “Raising Dystonia” to ask people who live with this condition, or have loved ones who do, what they wish the world could understand about it.

This is what they had to say:

1. “I wish people wouldn’t mistake my dystonia for me.” — Whitney Jory

2. OK if you don’t understand. Just please be understanding that I have challenges that may require your patience and empathy.” — Tom Seaman

3. “Living with dystonia is so much more than the physical pain — which is constant and excruciating. It’s knowing that an attack is on its way but you don’t know its arrival time, only that it will arrive pretty soon. It’s forgetting the names of inanimate objects, your favorite TV show and your friends’ names. It’s being unable to communicate because of word confusion, [and] the inability to articulate, which makes you feel stupid and [feel] that everyone is tired of listening to you struggle to elucidate your thoughts and opinions.” — Bob Cook

4. “No one knows what causes it, and there is no cure for it.” — Rita Barberousse

5. “Having dystonia, especially on a bad day, can make everything, every action, into something to overcome.” — Amy Patricia Smith

6. “I wish people would understand that it doesn’t get better. I get tired of hearing, ‘Oh, you’ll feel better soon.’” — Colleen Thomas

7. “I wish people knew how hard I have to work at being nice. I’m in so much pain and it’s so easy to be b*tchy. I don’t want to be that person, so I work hard at staying in a good head space. I try to be friendly. Some days I stay at home because I know I can’t take interacting with others.” — Whitney Jory

8. “Because I can do something one day and not the next doesn’t mean I am not in daily pain. Many times I do things that are extremely painful but I smile while doing them because I have four young kids who are watching my every move and I don’t want them to remember me being in constant pain.” — Cindy Harris Bratkowski

9. “The memory loss and confusion are very real.” — Koko Hisamoto

10. “Being able to walk pain-free is a blessing. Being able to walk without showing the pain is a skill.” — Kylie McPherson

11. “Every day is a challenge. We may look good on the outside but we endure a lot of pain and suffering to do any and all things people take for granted.” — Anastasia Hojo

12. “It isn’t that we don’t want to participate or commit, but we have to see how we feel that day. It takes a tremendous amount of effort, hard work and a great support system to live as close to normal life as possible.” — Adrianna Euliss Barlow

13. “Just because you can’t always see it, doesn’t mean it isn’t there.” – Amber Fisher

14. “Just because I have to do things differently doesn’t mean I can’t do them. Having dystonia doesn’t rid you of the need for independence. It may be painful and frustrating, but I can run with a limp and pick up boxes with my fist with the best of them!” — Meghan Lynn B

15. “I wish people would ask me about my dystonia.” — Mary Sue Dobbins

16. “I suffer on a daily basis. Just trying to hide it from people is exhausting… I do my best to live with this disease because I have no choice — it’s the cards I was dealt.” — Karan Thomas

17. “Although it is a daily challenge to live with a rare form (respiratory) of a rare disorder (adult onset generalized dystonia), it’s still possible to be a blessing and an encouragement to others. There is beauty everywhere around us, if we will take the time to look for it.” — Ramona Edwards

What I Wished My Loved Ones Knew

Here is the link to to an article that got published today by The Mighty, which is a company that works with social media to talk about disablilities in a new light. I’m will include the actual unedited version below. Of course, check out the link if you can because you get to see a photo of my sister, which for some reason I can’t find to publish here) along with my scribbles. 

http://themighty.com/2015/09/what-i-wish-my-loved-ones-knew-about-my-disabilities/

An open letter from a Young Women with 11 disabilities: What I wished you knew  

  
My name is Whitney Jory. I’m 26. I happen to have a total of 11 disabilities; all of them chronic. Wait. That word ‘chronic’. What does that even mean you might be thinking. ‘Chronic’ means that I will likely always have them. When I hear someone say to “feel better” I just want to shake them and remind them that this is how it is. Yes, I agree my Cervical Dystonia, a neurological movement disorder that causes constant spasms in my neck, shoulders, back, throat, face, chest, and a tremor throughout my body, and my severe Chronic, oops, there is that word again, Pain Syndrome could, and will, get better if I’m lucky. You see, I was born with Cervical Dystonia. You’d damn well better believe that I have been doing everything in my power to get better since I was first diagnosed at the age of 18. 
There are so many things even my closest loved ones don’t know about what it’s like for me to have Cervical Dystonia, Chronic Pain and all my other disabilities. I wish they knew how hard I have to fight every single day for my life. My Chronic Pain went severely under treated for 6 years. Because of those experiences and the culmination of both physical and emotional pain, there have been so many instances where I just wanted to disappear. I wanted to go away and end my life. I’m extremely thankful that I’m an optimist and have so much strength because it helped me get through the darkest moments. When I start to think like this, I’m blessed enough to be able to call my extremely supportive boyfriend, John, at all hours of the night and talk it through. I’m not ashamed to admit that I’ve called my fair share of suicide hotlines. I’ve also make myself list 10 reasons why I love life in my journal. It makes me remember that my life is worth fighting for, even though I have to push against all odds. 
I’m in severe and constant pain if I’m awake, even with medications. I’m usually not in pain while I’m asleep (why am I not asleep now?), although I’ve been through many sleepless nights where my pain prevented me from falling asleep or woke me up at all hours. 

Social functions have become rather difficult. I’ve cried my way through many dinners in public simply because I don’t feel good. No place is off-limits when it comes to crying. I’m at the point where I don’t even need tissue. I’ve had a waiter actually call me a “cry baby” (what a jerk, I know). I turned this negative comment into a positive educational moment by telling him about my disabilities. He quickly apologized. I’ve been told by a friend that others get uncomfortable when I discuss my medical conditions. So, I go to social functions and feel invisible because no one can relate. I wish I could talk about by health without making others feel uncomfortable. I’ve had someone compare her thyroid condition to my 11 disabilities. 11! I’m not saying a thyroid condition isn’t serious, but come on?

I wish that I had more support from my family, friends, my community, the public, and the world. Most don’t even know what Cervical Dystonia is. My ultimate goal in life is to leave a world where the word “Dystonia” is a commonly understood one, not one mistaken for a country. I would love to see a cure for both Dystonia and Chronic Pain. My dream would be to be on The Ellen DeGeneres Show in order to tell her viewers about Dystonia. I don’t understand why some friends still don’t know what ‘Cervical Dystonia’ is. You know me, I gave you a card explaining it (with a link!!), I explained it during our conversation, and don’t you know what Google is? 

Some things I wished my loved ones would do are surprise me with flowers (something pink and pretty like peonies) or a card when I’m having a pain spike or recovering from a procedure. Things my friends could do to show their support is to come over when I’m recovering, bring Thai (pumpkin curry and brown rice, please), and binge watch tv shows. Some great little things loved ones could do include sending texts of support, sharing my posts about Dystonia on Facebook, or even give me a big hug (nope, I’m not breakable) when they see me. One huge thing loved ones could do is to help me organize a fundraiser to benefit the Dystonia Medical Research Foundation. 
Chocolate is also a big comfort food; I’ve been known to polish off a bar or two on epic pain days. I found this chocolate with brown butter recently…I’ll just take a case of those bars. That should last me. In all seriousness, I wish that my friends would make more time to understand what I’m going through. I wish my loved ones would learn about Cervical Dystonia and other conditions and ask me questions to try to understand how my conditions affect me. I wish they would accommodate me into their busy schedules. So many of my loved ones make insensitive comments or are too busy to stop and listen. Flowers, curry, cards, chocolate, and texts are all nice, but having a person in my life to listen to me and understand even 1% what I go through is invaluable. Scratch that, I’ll take the peonies, chocolate and your undivided attention. A girl can dream, right?
Michael J. Fox has Dystonia and Parkinson’s. No, I’m not making this up. They are both movement disorders. If you don’t want to Google ‘Cervical Dystonia’, I’ll save you the trouble and put this link to the Dystonia Medical Research Foundation (DMRF) website: https://www.dystonia-foundation.org/what-is-dystonia. 
You know what, why don’t you Google “invisible disabilities” while your at it. 
  
Bio:

Whitney Jory lives in Northern California. She is an advocate for all patients, mainly for those afflicted with Dystonia. She founded and co-leads the San Francisco Bay Area Dystonia Support group with Amy Herrington with support from the Dystonia Medical Research Foundation (DMRF). Whitney’s favorite day consists of wonderful design, fancy coffee, even fancier chocolate, a binge worthy show, and well-managed pain spent with her lovely boyfriend of 5 years John Berry, who lives in Austin, Texas. Whitney also enjoys reading about interior design and public health. Her favorite show is a tie between Nurse Jackie and Cold Justice.
Donations can be made in Whitney’s honor to the Dystonia Medical Research Foundation (DMRF) to help fund research to discover new treatments and eventually find a cure by going to: https://www.dystonia-foundation.org/donate

Anxiety & Hope

I’m generally not a worrier, but there is one area of my life that I have constant anxiety over. It’s whether or not I will be able to hold down a traditional part-time job in my field of choice: interior design. My health is so unpredictable. My condition changes from second to second. How will I ever be able to have a job and not have a nervous break-down every single day? I have day dreams of this very thing happening. The reason why I have so much anxiety and fear about the future is because I have many chronic health conditions, one of which being Chronic Pain Syndrome. I really try not to worry about the future, but there is that thought in the back of my head that is concerned. I’m concerned. I’m scared. I’ve lived in excruciating pain for 8 years now. I feel tortured and like I’ll never get a chance to fully heal from this pain that I have experienced. For about 7 years, my pain was severely under treated. I still think my pain is really under treated. I’m always in pain. Every waking second, I feel the pain. It feels like multiple cars have run over me and like someone has stabbed me in my shoulders and neck. Before you start suggesting treatment options, let me tell you this: please take care if you are going to suggest a treatment option. Remember that you do not have my full medical history and I’m going to guess that you don’t have the letters M.D. behind them. I can’t tell you how many times I’ve heard “well, have you tried acupuncture, or this vitamin, or this yoga teacher”…the list goes on and on.

I live in a constant state of battle with my body. I’ve accepted my conditions, but refuse to accept that I have to live such a poor quality of life. My hopes and dreams for the future is to find a treatment that works and eliminates the pain completely. I want my life back. I want to be able to dream big and accomplish those dreams.

Somehow, I know that I will be healed from my pain. I focus on picturing my life in a positive light: I’m living with my boyfriend (by this time, husband), I’m happy, I’m filled with so much joy that it beams from my face. I have no more pain and barely have to go to doctor’s visits. I land and stay in a part-time job at an interior design firm or related career. This company seeks me out to work for them. I picture then being able to start my own business and be wildly successful. I design my own line of stationary, bedding, and interiors goods. I live a busy, yet low-stress lifestyle. I’m able to workout 4 times a week if I so choose. I’m also able to stay in bed for no particular reason other than I feel like it and not because I have to rest. I travel to all the countries I want: Greece, Turkey, Italy, and France to name a few. I take time for ‘me’ and go on plenty of vacations. I take a fixer upper in a great neighborhood, we buy it, and I redesign the whole home. We have a rad house. I love life and live it to the fullest. I eat fancy chocolate (I’ve got that part covered now) and drink fancy coffee in my well-design home. I’m the happiest girl on the planet. I’m on cloud 9. Since I have no pain, I feel unstoppable and like I can achieve anything.

These are my hopes for the future. I’m writing them down because, every time I write down a goal or aspiration in life, it has come true. I’m waiting for these hopes to come true soon.

Take a moment and think of your dreams. Then, write them down and save them to look back at them later.

Love,

Chronically Whitney

Welcome to my scribbles, readers!

After much thought, I’ve decided to take the plunge and start a blog. My loved ones have been telling me to start one for years. So, about my and my domain name. My name is Whitney. I have 11 chronic conditions. Hence the name. One of which is Cervical Dystonia. Dystonia is a movement disorder where my brain can’t tell my body to stop spamming. My neck and shoulders spasm constantly when I’m awake and stop when I’m asleep. Scientists and Doctors do not know the reason. There is currently no cure and limited treatments. I’m not a candidate for DBS (more on that later). Dystonia is a close relative to Parkinson’s, yet it seems no one has heard of this rare condition. I’m here to change that. My main goal is to help others and their loved ones through the challanging journey of having chronic conditions.

I’m really exited to announce that three of my articles will be published in the next month or so! The article topics differ, but all relate to my goal. As they are posted, I will post them here. Two of them will be posted by The Mighty. One will be published by the Dystonia Medical Research Foundation in the Dystonia Dialogue.

So, please post any questions you might have about Dystonia or suggestions of topics you’d like me to explore.

P.S.-Look forward to me going into depth about my conditions. I’m just wanting to write my first post!

Signing off,

Chronically Whitney