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!

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

Who Cares About Improvement When You Still Feel Like S#*%

Feeling better is the reason you would go through therapy or any health treatment, RIGHT?

Who doesn’t want to show improvement?

Maybe you can relate…

You are deep into therapy or treatment, and each visit comes with its own set of questions.

  • How are your symptoms?
  • Are you feeling better?
  • Where are you on a scale from 1-10?

I GET IT… successes AND failures must be measured.

  • Where are you at now?
  • Are you at a 6?
  • Are you able to recognize what helps reduce your symptoms?

MOST PEOPLE might think twice about spending a decent chunk of their day performing exercises that would cause them to feel worse in hopes they get somewhat better.

It’s crazy. Right? WRONG!

A lesson smacked me upside the head today!

7 years ago when the vertigo and disequilibrium set in, I could not even walk around the block. I felt so nasty I hardly ventured out of the house.

Check out this photo! I am not sure what inspired babe to take this photo of me (SO glad he did. I have something to show ya!)

Marissa in the early days of the vestibular madness  laying on couch rockin sea bands

I am rocking two sea bands and riding out the nausea and room spin.

*Sea-Bands are a bracelet that is supposed to help with nausea and motion sickness.

(I was desperate! I would have tried ANYTHING at that moment in time. I am still open to trying MOST things.)

After the walk today, I glanced down at the pedometer, and it read… 2.147 miles!

Pedometer reading 2 miles

WHAT THE HECK!

It took me 7 YEARS to go from barely making it around the block to being able to walk 2 miles!

I can confidently say I am walking 2 more miles than many able bodied persons.

Do I feel like hell after my walk? YES

Do I struggle throughout the walk? ABSOLUTELY

Has the dizziness, disequilibrium and vertigo changed much in the last 7 years? NO

So why even try? BECAUSE… Small improvements + action= PURPOSE

I will no longer poo-poo or shy away from recognizing and acknowledging small victories (YES… improvement)!

Much love,
Marissa

Help Me Find a Pair of Water Shoes!

Babe and I were in the backyard taking in the sun. The pool looked exceptionally beautiful. It was hot outside, and the pool was glistening. I should be able to, dive in, and swim, right? Not so fast. I always seem to find myself perched at the edge of the shallow end of the pool feet submerged in the water. I swear there is a magnetic force in that pool water always tugging at me. Why do we want for things we can’t have?

I have been in the pool post vestibular disorder, but there is always a fear. The doctors warned me, never put my head underwater because I could drown. I understand that once I submerge my head underwater visual cues would be removed, and my visual orientation would be impaired. Also, the motion of the water brings unpleasant nausea and has triggered a vertigo spell or two.

Stairway To Swimming Pool

Image: FreeDigitalPhotos.net

Heck. Today I wanted to get into the pool. I even checked in with Siri to confirm the temperature outside. I was stalling. Gotta love smart phones! I finally stumbled across a post that stated 80 degrees outside is considered prime swim weather. As fate would have it, Siri had already alerted it was 81 degrees. I proclaimed my desire to get into the water, and Babe didn’t discourage me.

Next thing you know I was in the water. Pants, shirt, bra and undies. I didn’t care; I was in! It was freezing and I considered jumping out. Glad I didn’t give up. I was forced to stay in the shallow end! My movement began to stir the water into a forceful motion, and I started to feel yucky. I wasn’t ready to throw in the towel just yet. I elected to hold onto the edge of the pool and look away from the water. Did I tell you, I have not physically ran in 7 years? Running can be a trigger that  provokes dizziness and vertigo. I then started running in place. Before I could wrap my head around what was happening, I yelled out, ” I am running!”. I turned to look at babe, and I was greeted with a huge smile. I then asked babe to set the stopwatch and time me. “Set it for 10 minutes!” Once again he didn’t discourage me. He set the timer and I started running in place holding onto that edge. I pulled my hands away from the edge, and the buoyancy of the water held me in place. I screamed again, “I am running”! It was quickly realized I wasn’t going to make the 10 desired minutes. Babe yelled out, “How about we shoot for 2 minutes?” My reply, “What about 3?”. I made it to 2 minutes, and I fizzled out. But who the heck cares. I ran! I ran for the first time in 7 years. It may not have been in the traditional form, but it was my way, on my own terms!

Babe asked me to hold onto the shallow edge while he went to retrieve a towel. I had an opportunity to be alone to think about what I had just accomplished. I began to feel motion sickness as the water shifted me about. Babe hustled back and helped me out of the pool. The weight of the wet clothes felt tremendous. That weight represented the heavy burden this disorder has placed on my life. Babe started to wrap the towel around me, and I hugged him close and began to cry. He held me tight and said, “I am so proud of you.” I am proud of us. We have been in this battle together for 7 years, and we may not win every battle, but we will win the war!

Much love,
Marissa