Disabling Life Autopilot

I have found this post difficult to write. Not because I don’t have incredible things to say about 2012, quite the contrary. It’s that I don’t believe I have fully digested the lessons of 2012.

I didn’t realize I had been gathering fuel for this project for 6 year, and all I needed was ignition. That spark came Dec 13, 2011. I received an email from Susan Mees from WEGO health.

Dear Marissa,

I’m writing to let you know that you have been nominated for one of our 2011Health Activist Awards by someone in your community. The first-ever Health Activist Awards will recognize Health Activists for the great things they’ve accomplished this year. Your nomination has put you in the running to win an Award. Congratulations!

An award? Wow. At that point,  I had seen the blog as a personal diary. No one in my life had willingly sat me down and wanted to hear my version of how my health derailed my life. Sure, I saw a few therapist, but that was me reaching out for help. No one had reached out in the way I had needed them too. I was on autopilot, driving on the wrong side of the highway, praying for a head-on collision and no one knew it!

wet road

photo: freedigitalphotos.net

The blog became my mentor. I wrote, it didn’t judge, and I wrote some more. I didn’t have a direction for the blog, or want to turn the blog into an affiliate money making machine! LOL. I needed this blog. I envisioned one spectator out there that was interested in hearing about my story. I wrote to that one witness.

I was fully engrossed with MYSELF!

I only saw MY story, MY journey, MY tragedy, MY hurt, MY pain, MY grief, MY loss!

I was growing and purging emotionally in 2011, but something was missing! I had no clue how to turn off the cruise control of fear. I had worked myself through the stages of grief with assistance of a therapist, but I was AFRIAD! NOW WHAT? How do I live a life with a hidden disability?

The email from WEGO health contained a link to additional awards and nominees. I began following the nomination and award process and found myself devouring each nominee and their story. I became obsessed with their journey’s and how they were living despite chronic illness.

Dec 15, 2011 blog post: Reflection, monition, idea, execution…

For a moment, I found myself lost in another person’s story and passion. After reading several nominees blogs, I had a thought. Could a shift in focus away from vestibular struggles help me through my vestibular struggles? Educating myself on other medical conditions and focusing on another person’s journey may be the best way for me to pull through my own condition.

Dec 18, 2011, I put together a video blog.

The 12-12-12 project was birthed and I got to work.

It wasn’t about MY story, MY journey, MY tragedy, MY hurt, MY pain, MY grief, MY loss!

It was about Their story, Their journey, Their tragedy, Their hurt, Their pain, Their grief, Their loss!

I became the person I needed that never came. I wanted to hear their stories, learn about their conditions and spread awareness! I became so invested in this project that I was often distracted by my own personal struggles living a vestibular disorder.

If I felt fatigued, I would think of Kim and her struggles living with a Budd- Chiari Syndrome, and the fatigue that engulfs her.

If I didn’t want to walk for exercise, I would think of Peachy living with a form of arthritis called Ankylosing spondylitis that requires her to exercise to maintain flexibility in her joints.

If I didn’t want to take a shower because I was down and depressed, I would think of my dear friend Blake. He would love to hop out of his wheelchair and jump into the shower, but Spinal Muscular Atrophy has taken that from him.

If I could choose a single lesson from this project to share with you, it would be this….

Actively search for and wholeheartedly listen to another persons story. You will create a synergy of emotional healing for the both of you! There is power in numbers.

Thank you to EACH project member for opening yourselves up to share your story.

January: Blake Watson
Condition: Spinal Muscular Atrophy

February: Kim M.
Condition: Budd-Chiari Syndrome

March: Amy Gurowitz
Condition: MS

April: Rhiann Johns ( Thank you to Mrs. Johns!:)
Condition: Long-standing brain stem lesion and spastic paraparesis

May: Sara Gorman
Condition: Lupus

June: Dale Lehn
Condition: Chronic Pain

July: Peachy
Condition: Ankylosing spondylitis

August: Sarah Levis
Condition: Arteriovenous malformations (AVM)

September: Sarah Mills
Condition: Severe multiple allergies, covering asthma, hay fever, eczema, food allergies and Multiple Chemical Sensitivity (MCS)

October and November: Andi and Jett Durkin
Condition: Down Syndrome

December: Pam Sloate
Condition: Dystonia

From the bottom of my heart, I love you all and  THANK YOU for disabling my life autopilot, putting me back on the right side of the road, and keeping me from a head on collision.

Much love,
Marissa

The Lessons: Control And Beyond

Here are just SOME of the lessons that 12-12-12 project member Pam shared with us during her INSPIRATIONAL podcast interview.

Lesson #1
“We are not in control. Living with a movement issue, I spent the majority of my life trying to control anything because I couldn’t control the main things, and it’s a waste of time”

Lesson #2
“We have to accept ourselves with all of our imperfections.”

Lesson #3
“You have to not assume that other people are thinking anything about you. I used to walk down the street and not want to look at anyone else because I was convinced they were looking at me and how I walked.”

I HIGHLY suggest you listen to Pam break down these lessons in our recent podcast. If you want to jump directly into the lessons they start at 50:16.

PODCAST HERE

Much love,
Marissa

Podcast With 12-12-12 Project Member Pam Sloate-Dystonia

Play

Pam opens up about her experience living with Dystonia since age 8 1/2. She talks openly about Dystonia, grief & loss, and maintaing a positive attitude. She shares SOME VERY important life lessons! It’s a MUST LISTEN.

Audio clip: Adobe Flash Player (version 9 or above) is required to play this audio clip. Download the latest version here. You also need to have JavaScript enabled in your browser.

Download the audio

Much love,
Marissa

P.S. Pam, thank you for stepping outside of yourself to do this interview. I love you girl!

Trying To Understand Dystonia- Whiteboard Edition Plus Video

Marissa spending time on her whiteboard trying to understand Dystonia

I came across this video on YouTube and it struck a cord. This gal, Lynn,  is SO BRAVE for sharing her Dystonia experience. I appreciate her giving us visual insight into her experience living with Dystonia.

HEADS UP Vestibular folks: There is a ton of visual movement from the camera and from watching her movement.

Much love,
Marissa

P.S. Looking forward to interviewing Pam from Dystoniamuse.com this weekend!

 

1000mg Of Hope

Me and 2.8 MILLION PEOPLE this month have been infiltrated by the nasty cold and flu invaders. This cold has wrecked havoc on my immunity for the last few days. The symptoms have been heavy head, congestion, sneezing, mild lingering headache, watery eyes, and fatigue. I am tired and irritable!

In hopes of gaining some symptom relief, I begin popping 12- Hour Sudafed sinus congestion and pressure pills. Within a few hours of taking the pills, my eyes stop watering, and the vice around my head seems to lessen, HOWEVER, the relief is brief and minimal! Regardless of relief, I still feel terribly sick, forcing me to dismiss the moments of interim relief. Yet, every 12 hours I find myself popping these pills!

sudafed

MOST of us have sampled majority of the cold medicines starring back at us on those cluttered store shelves. Temporary and minimal relief are your best hope. The medications won’t cure, they are meant to push us through the worst. We get desperate for any relief. Our medicine cabinets reflect that desperation! We pop a pill because desperate times calls for desperate measures!

THANK GOD, eventually in time, my immune system will dry up this cold, and it will be ridded from my body.

Wouldn’t it be comforting to know that a positive outcome awaits after illness ran it’s course?

Living with a vestibular(balance disorder) condition that is chronic, I have taken my fair share of vestibular suppressant medications. Lying there doped up on meclizine or valium in hopes of temporary relief that never came. The medications I have tried so far have been unsuccessful and have been counterproductive due to unpleasant side effects.

Which brings me to December’s 12-12-12 project member Pam. Pam is living with Generalized Dystonia. Dystonia being a disorder of movement.

According to Pam’s fantastic blog, Dystonia Muse: Chronicles Of A Dystonia Muse

Our muscles themselves are fine. They’re just receiving confusing instructions (“mis-transmissions”), like a mis-coached football team running around in senseless patterns, no offense or defense, as they fail to accomplish coordinated plays let alone score a touchdown!

In a blog post titled, “Introducing My Meds” , Pam describes medications that treat Dystonia…

Medications “treating” Dystonia are like mediocre relationships – we make do notwithstanding their pitfalls because there’s nothing better waiting on the horizon. Admittedly, we tend to engage in a bit of a juggling act, no one pill supplying everything we need.

Pam finds herself consuming a triad of medications. Her choice of cocktail:

1.) Trihexyphenidyl (Artane)- A member of the Anticholinergic family. One of the more common prescribed medications for Dystonia patients. This drug is responsible for blocking a neurotransmitter (chemicals in the body that transmits signals between nerves) called acetylcholine(signal transmitter from the nerve endings to the muscles)!

Pam says: “Artane appears to be the muscle in my regimen. Artane is an anticholinergic that blocks the action of acetylcholine.”

2.)  Sinemet( Carbidopa/Levodopa)- This drug is referred to as a Dopaminergic agent. It’s known to increase brain dopamine (Dopamine is the neurotransmitter that initiates and controls movement as well as balance).

Pam says: “Sinemet (Carbidopa/Levodopa) is used to synthesize dopamine. Both Artane and Sinemet are indicated for Parkinson’s. They are also used with Dystonia (off-label) to varying effect. Dopamine deficiency is the primary culprit in Parkinson’s, causing an imbalance between acetylcholine and dopamine in the movement centers of the brain.”

3.) Zonegran- Is known as an anti seizure medication. Anti-seizure medications can also help inhibit neurotransmitters.

Pam says: “I’ve never met anyone who takes Zonegran for Dystonia and occasionally come across someone on Tegretol. My assumption with the anti-seizure meds is that the involuntary muscle contractions can perhaps be approached as mini-seizures, but that’s purely my own logic.”

SIDE NOTE:  Thanks Pam for the crash course on Dystonia medications!

Remember, all Dystonia meds are prescribed off-label, meaning they aren’t indicated to treat Dystonia. Bottom line, the doctors can’t know why these drugs work until they understand Dystonia’s underlying mechanisms. And remember, response to medication is variable. What helps one patient may not help another.

My dream would be a cure for vestibular and movement disorders! However, if hope comes in 1000 mg tablets, that is a prescription I will happily fill!

I realize I am asking for hope in pill form, but It’s my hope that in Pam’s lifetime and in my lifetime, medications become available that kick these terrible illnesses into complete remission! We need MUCH MORE than temporary and minimal relief.

Much love,
Marissa

P.S. Be kind to EVERYONE this Holiday Season. Some of your family and friends are taking a cocktail of medications, pushing themselves to participate in holiday gatherings.

References:
U.S. Has Typical Flu and Cold Season, Despite Warmer Winter
NetDoctor- Dystonia 
Dystonia Medical Research Foundation- Glossary 
Mayo Clinic- Dystonia: Treatment and drugs 
RXList- Zonegran
Holistic Online- Parkinson’s Disease
Dystonia-Spasmodic Torticollis: Oral medications and Dystonia 
Dystonia-Spasmodic Torticollis: Dystonia and various medications 
WiseGeek- What is Dystonia 

Christmas Marathon Phone Meetings for Chronic Illness and Pain Sufferers

You may recall my time spent with June’s 12-12-12 project member Dale Lehn

Project member Dale

“I am a T-5 paraplegic and have been in a wheelchair since 2005. My paralysis is not due to an accident but from having a tumor growing inside my spinal cord.

“I soon found myself withdrawing from my family and friends.

The doctors said the only medication they could prescribe to “get rid of the pain” were narcotics based drugs. I wasn’t willing to go down this path. Over the course of several years, along with another man who had a similar issue with chronic pain we developed a way of living that gave us the tools to live a full and productive life even with chronic pain.”

Helping people learn to overcome the emotional debilitation and isolation of chronic pain and chronic illness is the fundamental work Chronic Pain Anonymous is doing.

Chronic Pain Anonymous logo

I have personally attended a few phone meetings through Chronic Pain Anonymous and found it extremely comforting. You become part of a fellowship that is supportive and most importantly understanding.

As I was going through my emails today, I came across the title… “Special Announcement – 4th Holiday Meeting

I opened the email to find a list of phone meetings that are going to be held on Christmas Day! A Christmas Marathon of Phone Meetings. A brilliant idea!

“Many people with chronic pain and chronic illness are home bound, either by choice or by medical need. During the holidays it is valuable for us to have an outlet to speak with others, especially those who understand what it is like to live with chronic illness or chronic pain.”

Isn’t that the truth! I spend the majority of my time at home. This is not by choice, but based on the limitations placed on me due to my medical condition. Lord willing, I am going to have the luxury of attending two holiday gatherings on Christmas Day. However, what if lived alone, a few hours away from my family? What if I lived by myself in another state? Most likely I would be spending the holidays alone!

I know first hand what living with a chronic illness can do to your mental health. I sympathize with how isolating a life of chronic illness creates. That is why I believe what Dale and Chronic Pain Anonymous are doing with the Christmas Marathon Phone Meetings is a blessing.

So here are the details of the email I received…

Holiday Phone Marathon

 Lutherville, MD… Chronic Pain Anonymous has announced a special phone marathon to take place on Christmas Day, December 25, 2012.

Here is the schedule for the day:

• The first meeting will begin at 1 PM EST to 2 PM EST. Fellowship to follow.

• Our regular Meeting is from 3 PM to 4 PM EST. Fellowship to follow

• Next meeting time will begin 5 PM to 6 PM EST. Fellowship to follow

• Last meeting time will begin 7 PM to 8 PM EST. Fellowship to follow

As we will know, many people with chronic pain and chronic illness are homebound. Either we are isolated by choice or by medical needs. During holidays it is valuable for us to have an outlet to speak with others, especially ones who understand what it is like to have our illness of chronic pain. The number to call is (213) 342-3090 and the access code is 1952435.

CPA has five regularly scheduled phone meetings, two Google Group internet meetings and 13 face-to-face meetings taking place in Canada and the United States. All current meetings can be found on our website.

Chronic Pain Anonymous is a Twelve Step fellowship of men and women who share their experience, strength and hope with each other so that they may solve their common problem and to help others recover from the disabling effects of chronic pain and chronic illness. The only requirement for membership in CPA is a desire to recover from the emotional, physical, and spiritual debilitation of chronic pain and chronic illness and a willingness to help others to do the same.

For more information, you are invited to learn about the program on the website: http://www.chronicpainanonymous.org. If you have any questions, contact Dale L. at dale@chronicpainanonymous.org or info@chronicpainanonymous.org

Much love,
Marissa

PS: Please promise me you will find fellowship on Christmas Day!  You don’t even have to speak if you don’t want to! Just listening in on the call will do you some good. Don’t hesitate to pick up the phone. The number to call is (213) 342-3090 and the access code is 1952435. If I could hug you, I WOULD!

Dystonia Awareness Gear

Pumped! I received my Dystonia awareness gear in the mail.

You gotta check out the Dystonia Medical Research Foundation Shop. You will find some great items for purchase!

Dystonia awareness gear

What is Dystonia: “Dystonia is a neurological moment disorder.”

A few Dystonia facts pulled from the informative brochures that arrived….

1. “When Dystonia affects a single body area, it’s called focal dystonia”

2.”Dystonia that only occurs when a person does a specific activity- for example, a musician who develops symptoms only when playing an instrument  is called task-specific dystonia.”

3.“Some forms of Dystonia are attributed to a specific cause or trigger, and for other forms the cause is not yet identified.”

Much love,
Marissa

Time For A Little Spoken Word- Dystonia

I have ALWAYS wanted to participate in a spoken word performance. If I were to have the opportunity, I would LOVE to perform this piece and spread Dystonia awareness!

“Dystonia”

Disorder causes muscles to contract

Involuntary spasms leaving no time to react

Living with a disorder that is so unpredictable

Everyone please appreciate the parts of your life that are predictable

Cervical Dystonia turning your head to the side,

Creating back and forth motions, a symptom you can’t hide

Oromadiubular Dystonia, causing facial, jaw, and tongue pandamonia

Fingers and toes curling up, silencing a pianist from the crescendo building up

Blinking uncontrollably, eyelids getting no rest,

You can blame that on the Blepharospasm expressed

Generalized Dystonia is my friend Pam’s fate,

Cramping and twisting of her body causing unsteady gait

Affecting 500,000 people living in the United States,

A disorder that doesn’t discriminate it dictates

Awareness is an important mission, it offers the possibility of complete remission

Much love,
Marissa

References: Dystonia Medical Research Foundation

Understanding Dystonia

Musicians with Dystonia

What is Dystonia?

 

Self Control Over The Control Freak

I won’t do myself or you a disservice by not keeping it real! Things are about to get personal.

As soon as the cloud began to dissipate over my vestibular heavy head, I started working toward earning my latest badge-CONTROL FREAK.

I have done my best to control EVERY ASPECT of my life pre AND post-vestibular.

Post-Vestibular, (balance disorder) if I couldn’t drive to the grocery store on my own, I would control the foods babe, and I consume.

If I couldn’t return to the job I loved, I was going to insert my opinion every chance I could get regarding the career path I felt babe should be heading down.

If I couldn’t see rapid progress in vestibular rehab therapy, I would focus on weight loss. At least I could visually see the progress.

Not to let myself off the hook, but I didn’t realize how much of a control freak I was becoming until my conversation with 12-12-12 project member Pamela.

After I got off the Skype call with Pamela something clicked. I realized I had morphed into a control freak. I am trying to control EVERY aspect of my life because I have no control over the vestibular symptoms.

Poor Babe! Because I believe I can control everything in my world, I am unleashing kryptonite on this man.

What happens if babe decides he doesn’t want to eat gluten free bread?

What happens if babe decides he wants to drop out of his Master’s program?

What happens if I gain 40 lbs?

Before this life lesson was revealed, I will tell you exactly what would have happened. I would have been disappointed in myself for what I would have seen as tragedies, and would have believed I didn’t try hard enough to prevent these tragedies.

Side Note: WOW! Tragedies? M-A-R-I-S-S-A…really?

Are you creating a world where you believe everything outside of yourself can be controlled?

While we may not be able to control all that happens to us, we can control what happens inside us. – Benjamin Franklin

Let’s talk about situations where being in complete control would be beneficial.

12-12-12 project member Pamela is living with a movement disorder called Dystonia. Her muscles are fine, BUT they are receiving confusing messages. Imagine how unpredictable her life is!

Walking confronts me with a never-ending surprise party. One minute I’m strolling prettily, nary a care. Then I remember my legs – shazam, we have movement. – Pamela via blog post: Walking

She would love to wear my control freak badge for a day and have complete dominion over her muscle response, yet that’s not possible. Just as it’s not possible for me to have complete control over every aspect of my life and those in it!

What valuable lessons are you missing because your focused on controlling vs. having self control?

Pamela doesn’t have control over her muscle response!

I don’t have control over my vestibular response!

YET, we have the ability to control our emotional responses and reactions to what is happening in our lives. That doesn’t mean attempting to control everything not associated with our medical conditions, so we create a false sense of control!

Being able to shift from controlling to self-control is going to be a learned skill. Being in a heightened state of awareness will be required to shatter this unstable foundation I have created.

I now realize that Pamela and I were destined to meet. In ONE COVERSATION, she has allowed me to realize I was rebuilding my house on a foundation made of glass.

Much love,
Marissa

The Lesson: Options

October and November have merged leading to a singular, yet powerful lesson. Andi Durkin, mother raising a toddler with Down syndrome was not comfortable with a dominant perspective on how to raise her son.

She opened herself up to different suggestions and approaches and is sharing what is working for her son on her blog: Down Syndrome: A day to day guide.

During the interview Andi stressed the importance of getting your doctors opinion, however, she also reminded us…

“Explore all your options.”

It is a powerful lesson that often get’s overlooked. There is NOTHING WRONG with seeking additional opinions. One man or one woman, regardless of certification, does not have all of the answers.

EXPLORE
QUESTION
EVALUATE
APPLY

Much love,
Marissa