Balance Awareness Week and 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!

Much love,

Can I never use a coupon?

we're open for business sign


It’s exciting when you get a new business in the neighborhood; especially when it involves food!

The coupons start pouring in and eventually your curiosity gets the best of you.

Let’s get down to it…

A new fast food chain opened up in the neighborhood. I was pumped; anything new within walking distance brings me joy. This life-crushing disability has kept me from getting behind the wheel. New food joint within walking distance, SOLD!

It was a Monday around 4:30ish when I glanced at the clock and decided I wasn’t cooking dinner. Phoned the hubby and told him to expect a treat!

Cane guiding my way, coupons in hand, I happily made the journey to the new fast food joint (I’ll avoid using their name because I don’t like drama!)

I pulled out my coupons and decided to take advantage of the store special: 2 sandwiches, 2 chips, and 2 drinks (No… it’s not Subway!) Perfect. Everything should fit into one bag and I can get this order home! I quickly realized I wouldn’t be able to make the journey back home with a bag, 2 large drinks, and a cane. I glanced over at the beverage cooler filled with bottled drinks. Not a problem, I will exchange the fountain drinks for bottled drinks, and everything makes it into the bag! Simple enough. NOT!

woman looking confused and angry


I got the register, whipped out my coupon and explained my situation to this young kid at the register. He stared at the coupon, stared at the register, stared at the coupon. I jumped to the kids rescue.

Can you explain to the manager that I have a disability, and I won’t be able to carry the fountain drinks. Can you ask if I can swap the fountain drinks for bottled drinks so I can carry my order out?

His response. “I’ll go ask the manager.”

Within seconds, this kid was back to the register. “Sorry ma’am, she says it’s too expensive!” I was thrown off my game. Rattled. I didn’t mind paying extra for the bottled drinks, and I explained that to the kid behind the register. He didn’t budge. So, I used the coupon, paid for the food and walked out without my drinks.

I wanted to turn around about five times during the walk home. I started grumbling to myself! “How am I coming home without the drinks I paid for?” “Why isn’t this manager willing to work something out?” “Why can’t I take advantage of a coupon like everyone else?” With each step I took, I was getting more pissed.

So… I called back the store. Asked for the manager.

“You remember the gal that was disabled and couldn’t walk home with two drinks and asked to swap fountain drinks for bottled drinks and you said no? Can my husband stop by after work and redeem the drinks I paid for?”

She obliged. She was nice about it. I called my husband to complain, he calmed me down and said he would pick up the drinks. “You did good babe.” Did good? I was annoyed. Seems crazy I was getting SO UPSET over some damn drinks. What was bothering me? Then it hit me. Exclusion. I want to be treated equally like everyone else, and the situation reminded me that I’m not like everyone else.

I figured since I can’t change my situation maybe I can change this companies culture. So, I called the corporate office. I got a very corporate apology. The corporate gals response was very official. “It’s a store level issue that should be addressed at the store level.” Store level? How about a change in the companies culture? I didn’t ask for anything free; I would have frequented this food joint several times throughout the year without a coupon, heck I would have paid full price for those damn drinks.

I wasn’t able to get through to this company. Bummer. I wish this corporate gal could see that it’s more than not walking away with two drinks. It’s about culture. It’s about education. It’s about inclusion.

Chronic Illness and The Holidays: Phone Marathon

Homebound for the holidays? Special phone marathon to take place on Christmas Day, December 25, 2014. Details below…

chronic illness and pain holiday hotline

Message from Dale over at Chronic Pain Anonymous

Holiday Phone Marathon

Scottsdale, AZ… Chronic Pain Anonymous has announced a special phone marathon to take place on Christmas Day, December 25, 2014. Here is the schedule for the day:

  • The first meeting will begin at 1 PM EST to 2 PM EST. Online meeting on In The Rooms
  • 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
  • Next meeting time will begin 7 pm TO 8 PM EST.
  • Last meeting time will begin 8:30 pm TO 9:30 PM EST.

As we may 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 or chronic pain. The number to call is (213) 342-3090 and the access code is 1952435. The video chat meeting is at

CPA has regularly scheduled phone meetings, two video chat meetings on In The Rooms, our own online Forum and 15 face-to-face meetings taking place in Canada, Scottland 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: If you have any questions, contact Dale L. at or

Much love,

PS: Merry Christmas and Happy New Year!

The Spin Sisters 1st annual Thanksgiving Turkey Dinner Giveaway-2014

turkey giveaway for folks living with chronic vertigo/dizziness

Chronic illness and the holidays don’t mix!

Heads up: The Spin Sisters are kicking off our 1st annual Thanksgiving Turkey Dinner Giveaway.

We realize some members within our community may not be able to participate in the busy Thanksgiving festivities due to the evil symptoms known as vertigo and dizziness! We also realize funds can be tight for those on a fixed income

If you live in the US and could use a delicious Thanksgiving dinner for two shipped to your home,  here is the entry form:

PS: If you find yourself in a position where you want to help ship more Thanksgiving dinners to members of our ommunity, awesome, you will find the donate link here:

PPS: The winner will be randomly chosen on Monday, November 17, 2014 @ noon (PST)

Much love,
Marissa & Jane
The Spin Sisters

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 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,

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 @

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,

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,

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

Vestibular Community Members Facing Homelessness?

Nobody likes moving back home with their folks. At least, not this gal. I NEVER thought I would be in my 30’s living with my in-laws (I’m blessed I have awesome in-laws). I’m learning my situation is not uncommon for a person living with chronic illness. Several folks I’ve met living with chronic vertigo or dizziness, find vertigo and work restrictions are career shattering.

adult living with chronic illness dealing with family

Photo credit: Northern Star

Homelessness is essentially caused by the inability of households to pay for housing.

The average monthly disability SSDI benefit in 2013 was $1,146.  That leaves a gross annual income of $13,752. It’s suggested that 30%* of your income goes toward housing and utilities, which allots $343.00 a month toward housing. I’m concerned many members of the vestibular community are being forced to live with family, friends, or may even become homeless! As I continue digging through rental housing data, my worst fears are being realized.

Fair market rental averages throughout US counties:

Oregon- Salem
Studio- $547
1 Bedroom- $578

Washington- Seattle-Bellevue
Studio- $771
1 Bedroom- $913

California- Los Angeles
Studio- $896
1 Bedroom- $1,083

Studio – $727
1 Bedroom- $826

New York, NY
Studio- $1,163
1 Bedroom- $1,215

Affordable housing for members of our community should be a top priority.

The Center for Housing Policy and Enterprise Community Partners compiled a list of the positive impacts of affordable housing on health. Here are the top three I think are critical:

  1.  Homeownership may contribute to health improvements by fostering greater self-esteem, increased residential stability and an increased sense of security and control over one’s physical environment.
  2. Affordable housing may improve health outcomes by freeing up family resources for nutritious food and health care expenditures.
  3.  Stable, affordable housing may improve health outcomes for individuals with chronic illness and disabilities and seniors by providing a stable and efficient platform for the ongoing delivery of health care and other necessary services.


Is affordable housing even accessible? 

I currently live in Los Angeles County. The wait list for Section 8 housing has been closed since 2004 ( I could not confirm nor deny this. I was unable to reach anyone from the housing authority)! I was able to confirm that the city of Norwalk’s (suburban city in Los Angles County) Section 8 wait list has been closed since 2007.  If Norwalk Section 8 wait list miraculously opened up, and the average SSDI disability benefit recipient was granted a housing voucher, they still wouldn’t be able to afford a studio or 1 bedroom apartment! Proof of search results from LACounty website:

Your Search Found 0 Properties: (In Norwalk, Rent range $0 to $343 a month, Accepting Section 8 Vouchers)We’re sorry. No housing was found that matched your request. You may want to try a search with a different price range or a different locality.

SO…is affordable housing affordable? Obviously not. The next few months I will be exploring alternative ways to provide realistic affordable housing to vestibular members within our community. It’s my belief that living in a safe environment and having access to nutritious foods are the building blocks to developing a better quality of life.

Has chronic illness forced you into an uncertain housing situation? Share in the comments below.

Much love,

“*Typically, not more than 30% of your gross income should be spent on rent including utilities [electric, gas, etc.]. This is the high-end of what you may be able to spend per month. Your personal financial status will determine the actual amount you may want to spend per month on rent. “


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,

Life Lessons From The Cemetery

Hanging out in the cemetery does something to you. More specifically, it does something to your inner-spirit.

The cemetery is walking distance from where I’m staying. It’s a place I frequent often, and it’s become part of my walking ritual.

I could take a different route, but I choose to walk through the cemetery as often as possible. Something draws me there.

At first, I thought it was the beautiful landscape. I became convinced it was the solitude I craved. Now, I realize I’m drawn to the cemetery for a different reason.

Today, I found myself being pulled toward a particular tree on the cemetery grounds.

I sat down and was surrounded by hundreds of burial plots. It wasn’t eerie. It was comforting.

Have you been to a cemetery lately?

You’d be amazed how beautiful a cemetery looks during the holiday season.

The living have decorated with Poinsettias, Christmas trees, and an array of festive holiday decorations. It’s breathtaking.

As I sat there, I found myself fixating on one particular burial plot. It was amazing. Christmas tree, ornaments, lights and festive trinkets. It was a Christmas celebration.

Then it hit me, only the living can experience the holiday festivities with their family and friends!

Would this individual trade places with me knowing that I’m living with a chronic illness?

I’m certain he would!

I’m certain he would take on my current health burdens in exchange for being in the presence of the awesome people who honor him in such a publically visual way.

I’ll leave you with this.

On the Christmas tree was a large sign decoration with the word “Hope”.

beautiful visual display of love

I’m convinced the decoration is a positive reminder for all those that stumble upon this post.

Hope you find a cure.
Hope you find peace.
Hope you find love.
Hope you find acceptance.
Hope you find…..(whatever makes you appreciate that your still among the living.)

Much love,

PS: Walking through this cemetery has changed me. It’s going to be a constant reminder of how blessed I am to be among the living despite chronic illness!