Balance Awareness Week and t-shirts

balance-awarness-week-t-shirts

I can’t believe Balance Awareness Week is almost here!

September 14th-20th kicks of BAW. It’s a week that highlights and educates folks about the evil twins known as vertigo and dizziness.

Over the last few years, the symptoms of vertigo and dizziness have drawn attention from Apple devices making people motion sick to Jason Day tumbling over during a vertigo attack at the US open.

It might be difficult for one to wrap their head around how debilitating these symptoms can be. Many throughout their lifetime will experience a bout of vertigo or dizziness, but because their “cured” they can forget how cruel these symptoms may be for someone living with their havoc 24 hours a day!

I’ve gone from having a full-time job, running, dancing, playing basketball, driving, etc. to losing my job, unable to run, dance, play basketball, etc. The last time I drove was almost a year ago (my husband wanted me to try and drive a few blocks, so I don’t forget how to drive! It was scary.)

So… it’s safe to say living with chronic vertigo and or dizziness is hell!

Well.. what can you do about it? Be aware. Be sensitive. Be supportive.

Also.. I hope you would consider purchasing a Balance Awareness t-shirt this year to help spread awareness.

Trust me. You are going to want to support an organization that may one day be your saving grace.

The Vestibular Disorders Association has been a bedrock of information that has allowed me to understand my symptoms and navigate medical minefields.

Thanks again for taking the time to learn about the tragedy known as chronic vertigo and dizziness and for spreading balance awareness.

For those living this nightmare… I LOVE YOU! I love you for your strength and resilience.

We’re all in this together!
#DefeatDizziness

Much love,
Marissa

Does Stress Cause Vertigo?

Folks often ask… “Does stress cause vertigo?”

The short answer to your question is NO!

BUT…stress can make vertigo worse, and let’s dive into why.

First things first.

Stressed out gal on her bed dealing with chronic vertigo

Photo Credit: Nathan Congleton via flickr

 What Is Vertigo?

According to Merriam-Webster medical dictionary: vertigo is a sensation of motion that is associated with various disorders (as of the inner ear) and in which the individual or the individual’s surroundings seem to whirl dizzily.

Real life definition from an actual sufferer: You feel like you’re a single piece of snow being violently shaken alongside other snowflakes in a snow globe!

Vertigo Causes:

It’s important to understand that vertigo is a symptom, and it has a source. Here are a few possible sources:

  • Disease of the middle and inner ear
  • Central nervous system disorders
  • Migraine
  • Stroke
  • Depression and anxiety
  • Blood Pressure disorders
  • Medications

Medicinenet.com suggests stress is a physical, mental or emotional factor that causes bodily or mental tension.

Hence, stress can intensify the medical disorders listed above.

OK! Stress Isn’t The Direct Cause…Now What?

Know your medical terminology.

Are you experiencing vertigo or dizziness?

Vertigo: you or your surroundings appear to be spinning or moving.

Dizziness: feeling faint, lightheaded or unsteady.

Correct terminology will help your MD narrow down the cause.

If you’re experiencing persistent vertigo that’s affecting your quality of life, it’s time to seek medical care.

Don’t suffer unnecessarily. Vertigo can be debilitating, and there are some effective treatments. Also, medication can be given for the nausea that accompanies the vertigo.

Heads up: Vertigo and dizziness are common symptoms often misunderstood. They are subjective symptoms not seen and difficult for many to fully understand or believe.

If you find your primary MD not being receptive or brushing you off PLEASE get a second opinion. A solid primary care doctor will evaluate and if necessary point you in the direction of a vestibular (balance) specialists.

If you need additional support check out the VEDA (Vestibular Disorders Association).

VEDA has a great Vestibular (balance) specialists directory.

You are not alone! You can find others going through your similar experience on the Facebook page: The Spin Sisters Podcast.

Much love,
Marissa

PS: Don’t hesitate to ask any questions in the comments below. I will do my best to help!

Traveling to Washington, D.C. | Traveling with vertigo

What an experience! I was lucky enough to have VEDA (Vestibular Disorders Association) nominate me to represent the vestibular community at the NORD (National Organization of Rare Disorders) gala in Washington, D.C. It’s been a little over a month since my return from DC.

US Capital

View of the US Capital from the US Botanic Gardens.

Here’s a few highlights:

  1. Stumbled upon two women living with vestibular dysfunctions. One gal has battled motion sickness since childhood, and the other suffers from Meniere’s disease. Both gals work for the airline I was traveling with. Small world!
  2. I met Tom, a fellow dizzy friend I connected with via the blog! He took a train bus from Ohio to DC just so we could hang out. It was comforting to spend time with someone that “gets it”!
  3. I survived a 5 hour flight… both ways!
  4. I attended my first gala, where 250+ supporters of the rare disease community heard the word “vestibular” for the first time!
  5. My husband and I were invited by a member of Congressman Fred Uptons staff to have a private tour of The Capital.
  6. I dined at more than one busy restaurant in a single week…and survived.
  7. I made it up the Lincoln memorial steps! (Tip: Use the side rails and your walking stick.)
  8. I walked a mile, to and from the local grocery store, on congested streets by myself!

 

Two pals living with chronic vertigo

Two dizzy pals meet: Tom & Marissa swapping dizzy stories over lunch!

Exciting experiences still possible

I NEVER imagined experiencing any of the aforementioned highlights post vestibular dysfunction.

Traveling to Washington DC was my first major trip away from home since that initial life robbing vertigo symptom presented itself.

It’s been a harsh 9 years living with a vestibular dysfunction. Majority of my time has been spent behind the four walls of my room. I’ve dreamed of once again having life altering experiences, but assumed exciting travel was no longer part of my story.

I now believe in possibility. Courage now has tangible meaning. I can say with confidence that life can still paint meaningful highlights, in spite of chronic illness.

 

Lincoln Selfie

Had to get in a Lincoln selfie!

Always prepare for a little gloom

I have to acknowledge there was gloomy side to this trip. I quickly realized how isolated the vestibular community is from the remainder of the chronic illness population. We technically don’t qualify as a rare disorder. According to the NORD website “In the U.S., a disease is considered rare if it is believed to affect fewer than 200,000 Americans.” I’ve read estimates as high as 69 million people in the US have experienced a vestibular dysfunction. Also, majority of the rare disorders acknowledged at the NORD gala were traced back to a genetic abnormality. Once a genetic abnormality is identified, a drug protocol treatment plan becomes a possibility. Vestibular dysfunction, on the other hand, covers an array of disorders. Folks are left with disabling symptoms that may or may not stem from a genetic abnormality. We’re often living with subjective symptoms that don’t have an identified source. Hence, this may be a reason why updated testing and treatment options are minimal.

I can’t thank NORD enough for taking us in and welcoming vestibular disorders to the table!

This trip made it clear that WE MUST support VEDA. Effective treatment options will present once we have access to updated diagnostic testing. We will have access to technologies when awareness becomes so overwhelming we can’t be ignored.

Portraits of courage posters at gala- highlighting chronic vertigo

At the gala, posters were displayed highlighting stories of patients and families living with rare diseases.

Never ease up on your grip of hope

I left DC in hopeful spirits. I believe technology and time will collide producing effective treatment options and cures for folks battling chronic dizziness and vertigo.

I leave you with this. Don’t lose hope. Year one I was so disoriented I could hardly circle my neighborhood block! Yes, technically I’m now back behind the four walls of my room, but at least I can hold onto the hope that future positive life experiences are possible. I can’t say it gets better, but I can say you will learn to adapt and survive.

Much love,
Marissa

PS: Thanks to NORD and VEDA for this life changing experience!

Relax, Doctors Are Human. Kinda.

I can’t speak for you, but doctors stress me out!

I prepare for medical appointments the same way I prepare for final exams.

I spend weeks researching terms and piecing together what I believe is relevant data.

Carrie and Saul standing in front of Carries color coded wall.

Photo: Kent Smith/SHOWTIME- Homeland

I print out pages of medical journals pouring over complex medical terminology I’m not qualified to comprehend. That doesn’t stop me from trying.

Armed with groundbreaking information…recent symptom checklist…list of questions… I’m prepared for battle.

It NEVER seems to go as well as planned out in my head!

Doc: ” Hello. I’m Dr. SharpAsATack. What brings you here today?

Me: “Well, this is happening. Ok, let me tell you. Did you read the latest breakthrough? Is this 5th symptom on my checklist normal? The last doctor I saw said I have Xyz. Do you believe me? ”

Total spew!

You know what I’m talking about?

It’s kinda sad. Fighting to get your life back, while given 15 minutes to plead your case in front of Dr. SharpAsATack, and the opportunity gets away because of intimidation. Craziness.

Scrubs and a lab coat get me every time.

I’ve been unable to view Dr. SharpAsATack as human, which rocks my confidence, hence spew.

There has to be a better way. Let’s get some things straight.

#1. Doctors are human!

Kinda. They are “special” humans that have a fascinating ability to understand complex data. Don’t allow that specialized knowledge to intimidate you.

#2. Less is more.

What expletive runs through my doctors mind when he/she glances at my manila folder filled with papers! Lol. I’m guessing… $HIT!

There’s nothing wrong keeping up on the latest medical findings, but be mindful not to inundate your doctor on the initial visit. Allow the relationship to cultivate. After a relationship is established, don’t be afraid to suggest an article you two can review.

Tip: While at initial visit, stay focused on presenting your medical history. If you suffer from dizziness, check out VEDAs suggested worksheets.

#3. Trust yourself.

I start to get a hot flash the second after the nurse says…” The doctor will be right with you.”

After nine years of living with these wretched symptoms, one might assume I would be confident rattling off my symptoms. That’s the problem with hidden disabilities. You learn to become a defense attorney that represents your symptoms from the first offense. Folks poke holes at your defense and you start questioning yourself! You live in your body and you know when something is off! Trust that.

I’m hoping these few simple points will help us both stay focused and remove some stress when tackling the next medical appointment.

Hugs and know that someone has your back.

Much love,
Marissa

The Spin Sisters Podcast: Episode #2- Chronic Illness and the Holidays

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( *To download episode to desktop: Right click  “Download”>Save as or Save link as.)

Santa feeling stressed- chronic illness and the holidays

December 18, 2013

Ready or not, the holidays are upon us!
Are you getting buried in tinsel?

We completely get it!
It’s gotta be better missing two front teeth than dealing with chronic illness and the holidays!

In this podcast, we talk how to tackle the holidays and discuss New Year’s resolutions.
Let’s confront these holdiays together…

Show notes:

Living with chronic illness during the holidays
10 tips to beat the holiday blues 
New Year’s resolutions and chronic illness 

Gift ideas for the holidays:
63 gifts under $10.00
White chocolate holiday bark

Connect with us! We would love to hear from you over on our Facebook page…. The Spin Sisters Podcast

With Love,
Marissa & Jane

PS: Happy Holidays to you and yours!

*Image: stockimages

 

iOS 7 Debacle Regarding Vestibular Disorders | iPhone and motion sickness

iOS7- iPhone hero shot by Apple

September 18, Apple released iOS 7. Adoption rates were being touted as high as 35% on day one.

I admit, I was salivating over the new iOS, overly eager to pounce on the anticipated update.

UNTIL… I got the text message alert from my fiancé!

“Bug, not sure if you have updated your phone, but don’t do it just yet… I had to update mine and the movement might bother you…”

Movement?

I said to myself…”What the heck is this guy talking about?”

Then it hit me! I found myself transported back to the iOS 7 Apple 2013 Keynote.

Craig Federighi, with his lovely locks of hair, passionately announced…

“As you move the device in your hand, it actually tracks your motion. It has Parallax, you can see behind the icons. It’s really incredible, and it carries across the system, this liveliness…”

I recall sitting through that streaming keynote thinking… “Oh S**T … ParaWHO?”

Like an awful blind date, I guess I blocked it out… DENIAL.

What the heck is a Vestibular Disorder?

You see, I have a Vestibular (balance) disorder.

A catastrophic disconnect between the vestibular system (includes the inner ear balance organs) and the parts of my brain that coordinate and process balance information.

Your brain is miraculous and often has the ability to compensate for damage, but I happen to be one of the unlucky ones that failed to compensate.

It appears, the balance areas of my brain are incapable of change.

My most unsettling symptoms are:  Chronic disequilibrium, bouts of vertigo, nausea, fatigue, vision sensitivity, anxiety, insomnia, and cognitive disturbances – I’ll let you visualize how these nasty symptoms interfere with a “normal” life workflow.

Folks living with vestibular disorders suffer a battery of debilitating symptoms from vertigo and dizziness to hearing changes. You can find a full list of symptoms here.

Can I catch a Vestibular Disorder?

Fair question!

“The vestibular system can be compromised in many ways. Viral infections (labrynthitis and vestibular neuritis), disorders that affect the inner ear fluid levels (Ménière’s disease and secondary endolymphatic hydrops), trauma from head injury, benign tumors (acoustic neuromas), and age related degeneration can all cause permanent damage to it. “

I don’t want to leave out my dear friends that suffer from debilitating symptoms like vertigo, nausea, and dizziness stemming from neurological conditions like…MS and long-standing brain stem lesion.

What’s the big deal, can’t you just get a Droid?

Let me stop you right there!

This isn’t about affordability of phones…. simply not updating your phone… or switching cell phone devices!

This is an issue of access.

If a group of individuals are vocalizing that a feature of technology is making them physically sick or exacerbating symptoms, and they can’t access technology, this should be taken seriously.

The future of the web and technologies that access the web are rapidly changing,  but access by EVERYONE regardless of disability is a founding principle.

The power of the Web is in its universality. Access by everyone regardless of disability is an essential aspect. — Tim Berners-Lee, W3C Director and inventor of the World Wide Web

I’m afraid to update my phone, because what if I get sick?

Not every person living with a vestibular disorder will be affected. It’s been noted, various folks living with a variety of vestibular disorders HAVE NOT been afflicted.

Don’t be afraid!

Someone within your 15 mile radius has an iPhone, ask to use it!  To be on the safe side, head to the Apple store (It’s been suggested to get there early AM…You know how we are in crowded malls!).

Have one of the Apple associates disable Parallax, and if the aggressive zooming in-and-out of icons and folders don’t appear to bother you… BAM… your one of the lucky ones. Update that baby!

Where can I learn more about iOS 7 and how it’s affecting people?

Here are a few fantastic articles that have surfaced:

 iOS 7 Animations Cause Nausea for Some.

Why iOS 7 is making some users sick

iOS 7 and motion sickness: What you can do, and where you can learn more

The rise of digital motion sickness: Video games, 3D films and iOS7 set to make condition the 21st century’s biggest occupational disease 

Where can I voice my opinion and concern:

I like your awareness spirit!

1.) Join the active discussion on the Apple support forum:

Any way to turn off iOS 7 navigation animations 

2.) Email Apple’s accessibility team, and express your concerns:

Apple’s an awesome company that’s shown a willingness to address accessibility issues. Their accessibility email address… accessibility@apple.com

 3.) File a report with Apple:

Jenni Leder, mobile app developer,  is suggesting… “file a report here: bugreport.apple.com and use this number so it duplicated: 15074144″

If you’ve never filed a bug report, see what Jenni’s bug report looks like.

4.) Join in solidarity:

*Head over to imore’s blog and complete the iOS 7 motion sickness poll.

Final Thoughts:

I’ve said enough!  Let the words of independent iOS developer, Matt Gemmell,  reverberate throughout your body…

“Accessibility affects everyone, and devices should be usable in all situations, by as many people as possible. Designing for accessibility levels the playing field, and increases the utility of devices for everybody.”

References:

Vestibular Disorders Association.” Home. Web. 29 Sept. 2013.
“Designing for Inclusion.” Designing for Inclusion. Web. 28 Sept. 2013
Boismier, Thomas E. “Vestibular Injury.” Compensation, De-compensation, and Failure to Compensate (n.d.): n. pag.Http://vestibular.org/sites/default/files/page_files/Vestibular%20Injury.pdf. VEDA. Web. vestibular.org.

Much love,
Marissa

PS: Change is slow, but possible!

PPS: To those that have found themselves subjected to hundreds of demoralizing, hateful, insensitive comments on various blogs… HUGS. You have a community that supports you and understands you. My girl Jane and I got your back! Connect with us over on Facebook via The Spin Sisters Podcast!

*Motion sickness appears to be the umbrella term used, but for those of us experiencing heightened vestibular symptoms triggered by the device, I believe we qualify to fill out the poll.

** Shout- out to Craig Grannell for taking on this issue and being one of the first to report it!

iOS7 Update Setting off Vertigo, Dizziness, Nausea and more | iPhone and motion sickness

We’re all for advancement, but this is getting personal. Who wants to use a mobile device that triggers vertigo, dizziness, nausea…

 

Much love,
Marissa

PS: PLEASE SHARE and help us bring this important matter to Apples attention.

The Spin Sisters Podcast: Episode #1- Grief & Loss

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Woman clenching face with hands on head

July 2, 2013

Kicking off the first episode of The Spin Sisters Podcast! We don’t jump into the trenches, we dive head first! We attempt to tackle the heavy topic of chronic illness and the stages of grief and loss that often suffocates a chronically ill person like a wool winter blanket.

Show notes:

VEDA
Yahoo Sport Article- Dana White Says PRP Therapy Helps Inner Ear Disorder
Orthokine- Wikipedia

Orthogen clinic: 
http://www.wehling-hartmann.de/wir-ueber-uns/
http://www.orthogen.ch/en/index.htm

Facebook pages/forums:
VEDA
Dizziness Blues
Dizzy World Cafe
Migraine-associated vertigo forums
Labyrinthitis.org.uk

Grief & Loss:
Elisabeth Kubler-Ross foundation
List of books by Elisabeth Kubler-Ross
Seven Choices: Finding daylight after loss shatters your world 
5 Stages of grief shared from the perspective of a physician living with Meniere’s Disease

Connect with us! We would love to hear from you over on our Facebook page…. The Spin Sisters Podcast

With Love,
Marissa & Jane

PS: Please list the resources you have found helpful!

 

Chronic Dizziness Podcast …Coming Soon

The Spin Sisters Podcast Logo

 

EXCITED to be joining forces with my friend Jane to bring to you a podcast about living with chronic dizziness.

We are going to get down and dirty in the trenches navigating through this murky world we call chronic dizziness.

If you have ANY topics you would like covered, don’t hesitate to shout them out over on our Facebook page.

NOTHING is off limits!

We appreciate and welcome your well wishes and support!

Much love,
The Spin Sisters!
(Marissa and Jane)

Connect with us:
The Spin Sisters Facebook Page
The Spin Sisters Twitter Page

 

Happy Balance Awareness Week And Two Victories

Whoop! Sept 16-22nd is Balance Awareness Week.

Balance Awareness Week Banner

According to the Vestibular Disorder Association

The goal of Balance Awareness Week is to “defeat dizziness” by helping people recognize the symptoms of a vestibular disorder, and urging them to seek help from a professional vestibular specialist.

Possible Vestibular Symptoms are…

  • Vertigo
  • Dizziness
  • Imbalance
  • Spatial disorientation
  • Hearing changes
  • Cognitive and/or psychological changes
  • Lightheaded
  • Rocking sensation
  • Spinning sensation
  • Feeling false sensations of movement
  • You notice you are titling your head to one position
  • It’s hard to maintain a straight posture.
  • Tendency to look down
  • Difficulty tracking objects with your eyes
  • Sensitivity to light

AND the list goes on…

In addition, VEDA encourages the friends, family and coworkers of those suffering from a vestibular disorder to learn more about how balance dysfunction can impact their loved one’s ability to perform common day-today activities.

Family, friends, and co-workers IT’S CRUCIAL for me to alert you that a vestibular condition MAY NOT be something you can visual see, but those of us living with vestibular dysfunction are living with UNPREDICTABLE and LIFE-ALTERING symptoms.

WE ARE NOT dodging you when we have to cancel plans at the last minute.

WE ARE NOT trying to avoid work by having to call in sick.

WE ARE NOT unwilling to be intimate, it’s just one of the last things on your mind when you are chronically dizzy. (Yeah, I said it!)

It’s symptoms and the condition…NOT US and NOT YOU!

On to the victories…

#1. Was able to walk far enough to purchase lunch for Gram and I at El Pollo Loco! Whoop.

el pollo receipt

Side note: I walked into El Pollo and stood in line. As soon as I stood still it felt like I had just gotten off a treadmill. I felt as though I was still walking. Such a yucky feeling! I am hoping that continued practice will lead to habituation and that treadmill feeling will lessen.

#2 Pool victory.

Side note: I said that my first attempt running in the pool was less than a minute, but I had actually made it 2 minutes running in place in the pool! ALSO I realize I have NO CONCEPT OF TIME. The post I was referring too in the video was from May 20th 2012. So it has taken me 4 months to get to 19 minutes in the pool. I will take it!:)

Much love,
Marissa