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!

Balance Awareness Week: Vertigo SUCKS

Vertigo SUCKS!

Living this nightmare for the last nine years has changed me. EVERY aspect of my life has been altered by disruptive daily symptoms.

A vestibular disorder (includes the parts of the inner ear and brain that help control balance and eye movements) is the term that encompasses the following horrific symptoms.

Here are just a few…

  • Visual-spatial problems
  • Excessive clumsiness
  • Poor hand-eye and eye-foot coordination
  • Trouble moving in the dark
  • Difficulty reading or concentrating
  • Fatigue
  • Vertigo
  • Dizziness
  • Head may be held in a titled position
  • Tendency to touch or hold onto something when standing, or to touch or hold the head while seated

The first few years

The first few years of silently battling these symptoms left me feeling depressed and isolated.

The symptoms are often subjective, and medical practitioners have a difficult time believing in symptoms that can’t be tracked with lab tests or imaging. I thought I was going crazy!

VEDA to the rescue:

VEDA (Vestibular Disorders Association) entered my life at a low point. It provided me with information that enabled me to rebuild a solid informational foundation. I felt more confident communicating with doctors and specialists. This newfound confidence allowed me to determine which medical professionals were qualified to look after my well being and would help elevate my quality of life.

I’m forever grateful to VEDA for catching my back, and I want to make sure they’re around to support the next sufferer.

What can you do?

  1. Acknowledgment: I can’t tell you how many people I’ve encountered that have dismissed my symptoms because I “don’t look sick”! It’s disheartening and disrespectful.
  2. Spread awareness. They say awareness is the catalyst for change, and I’m hoping you’re willing to be a change agent! Balance Awareness Week is Sept 15 – 21, 2014.

I would appreciate you spreading this “Feeling Dizzy” Info-graphic (PDF) (JPG)

Feeling dizzy? You may have a vestibular disorder!

Infographic by: VEDA @ vestibular.org

Also, if you have the financial means to do so, I would appreciate your donation. Your funds will be going to help VEDA!

Balance disorders MUST BE eradicated, and it’s starts with awareness.

Much love,
Marissa

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!

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