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

Can I never use a coupon?

we're open for business sign

image: freedigitalphotos.net

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

image: freedigitalphotos.net

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.

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: http://unbouncepages.com/turkey-dinner-giveaway/

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: http://funds.gofundme.com/dashboard/turkeygiveawayyeah

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

Much love,
Marissa & Jane
The Spin Sisters

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

Start Writing Your Own Prescriptions (RX)

Daily RX pad

Photo by: voraorn

Just admit it…

Your sick and tired of feeling “sick and tired”.

One cry away from being “all cried out”.

Taking pills for “this” or “that”…Distressed by the number of pills you’re forced to take, or resentful because there’s not a pill to treat your condition.

What if you possessed control over the prescriptions you’re being administered?

I get it… the physicians in control… in possession of a magical prescription (RX) notepad that grants access to a rainbow of drugs that can treat MANY symptoms you’re battling.

While this is true… maybe it’s best we’re not granted full access to this magical prescription pad. We might soon find ourselves with another problem – ADDICTION!

Alright, let’s agree to leave legal-drug-pushing to the professionals, but…

Have you considered writing out your own “Daily RX”?

Call me crazy, but I’m going to bet on someone… YOU!

I’m going to bet that YOU can safely write yourself out a daily RX that strengthens your inner-spirit.

Inner-spirit?

I’m not going to get woo-woo or preachy on you, however, I’m going to challenge you to develop a plan to combat the dark emotions that accompany chronic illness…

A plan that helps you withstand: Anger… fear… stress… worry…

A daily RX, you prescribe, focused on enhancing your quality of life.

Unless your physician is Patch Adams, you won’t be prescribed the following RX list:

  •  Watch a funny YouTube clip.
  • Make your bed.
  • Take a shower and brush your teeth .
  • Open your windows to let in some fresh air
  • Pray
  • Meditate
  • Write for 15 minutes on any topic of your choosing
  • Send an email off to someone you admire
  • Read something uplifting for 15 minutes

 

Seems silly, right?

Who’s sillier?:

Person A: Chooses not to wear a life jacket while kayaking.

Person B: Chooses to be properly fitted for a life jacket that may save his/her life in case the kayak capsizes.

Uplifting, daily RX lists, are your properly fitted life jacket! An important part of your safety equipment that keeps you from drowning into the emotional, dark, murky waters of chronic illness.

I’m hopeful with regular use, you may start to see the positive side effects!

Dont sabotage, just start!

My list often contains 3-4 daily prescriptions. (If you’re hesitant, start experimenting with just one daily RX!) There’s no “right” or “wrong” way to do this.

Daily RX list written of whiteboard

I use a whiteboard, but i’m considering purchasing my own RX pad!

Are you open to sharing what you’ll consider adding to your daily RX? If so, comment below.

Much love,
Marissa

PS: If you suffer from anger… fear… stress… worry… etc. on a daily basis, please consult with your physician! Hugs, and know your’re not alone! There’s help out there.

 

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.

Stop Doing This Alone |Life and chronic illness

The science is there…

As humans we yearn for it…

Unhappy woman holding up hand to block face

Image source: David Castillo Dominici

“We are wired to connect”

So, what’s the initial response when you get sick and branded by chronic illness… you disconnect.

Epic social shutdown…

The first few years you’re trying to figure out how to manipulate your “new” body, forcing yourself daily to be “somewhat” present. You could care less about connecting with people.

A few years of being smothered by anger and depression, you’ve likely shut yourself off from social interaction.

If your illness has left you homebound, your exposure to social interaction is slim to non existent.

It’s not your fault! You’re confronting limitations and addressing health concerns.

But,  it’s important you understand that lack of social interaction is harmful to your health

Yes, isolation is harmful to your health!

While you’re in isolation mode, your social skills are not being challenged.

Remember what happened to Tom Hanks (Chuck Noland) in the movie Cast Away? His need to connect, and forced isolation, drove him to turn a volleyball into his best friend… AKA Wilson. (Heads up… I tried to watch the scene on YouTube, and I couldn’t get through it! Yikes… talk about movement. )

Instead, here’s the audio of Chuck Noland losing ” Wilson”…:

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

For those that can handle movement in video:

Can you relate? Replace the word “Wilson” with (insert your name) “__________” . Talk about a lesson in letting go!

I lost it when “Wilson” get’s lost at sea! Terrible.

Eventually, like Noland, you’ll move through the grieving process and then what?

Rebuilding and reconnecting!

I hope you’re convinced or at least questioning the importance of connecting again.

No need to rush. Start out slow…

1. Consider joining a Facebook group and answering  a few Facebook posts . ( I’ve met AWESOME people through various Facebook groups, and even connected with a few people via Skype.)

2. How about listening in on a chronic illness support group call? Chronic Pain Anonymous is awesome. Here’s the link: http://www.chronicpainanonymous.org/services/phone-meetings/

Don’t be afraid to fail.

It’s been awkward trying to reconnect with people, especially from my past, but that won’t deter me, and it shouldn’t deter you!

Reconnect and rebuild… you’re worth it… your overall health depends on it!

Much love,
Marissa

PS: You need someone to connect with… I got your back. Shoot me a message via my contact form, or comment below. We got this!

Could you be making the mistake of trying to rebuild your life with broken pieces from the past?

Source: David Ritter

Source: David Ritter

Let’s get real…

Someone just threw a rock through your living room window.

Their not done! They run around to the back of the house and smash your bedroom windows, and they bash in that beautiful bay window you’ve just had installed.

How do you feel? Shocked? Scared? Pissed?

You call the police. Your statement is taken, and a report will be written up.

Now what? You have broken windows throughout your home, and your dwelling is vulnerable.

Since we’re talking in hypotheticals, you CAN’T have a repair man come out and fix these windows. You CAN’T call on your spouse, neighbor, or best friend. It’s YOU fixing the problem.

It’s 2:30pm on Sunday. Time is tickin’

What are you going to do?

You pause for a few minutes and decide to take a taxi to Home Depot. (“A taxi?” Sorry, your medical condition doesn’t allow you to drive.)

You get to Home Depot and start wandering about the store.

The intimidating vastness of Home Depot is upon you. You run into a customer service rep, and they direct you to the hardware aisle.

Staring back at you are foreign objects known as charcoal fiberglass screens, steel patio foot rollers, splash guards. What the heck? Where are the windows?

Unfortunately, you’re not going to walk down a prefabricated aisle called __________ (insert your name here) window repair aisle.

You will need tools and materials such as putty knife, paint brush, glazing compound, etc.

You simply wanted shiny new panes of glass and easy assembly instructions.

I know what your thinking.  “Get to the point! What does this have to do with the broken pieces of my life?” Hang with me, this is a journey we’re taking, not the destination.

Did it EVER ONCE cross your mind, that in order to repair your broken windows, you would have to pick up EACH PIECE of glass and reassemble it?

“Did she just say to pick up EACH PIECE of BROKEN glass and reassemble the windows with super glue glass adhesive?”

That would be crazy, wouldn’t it?

You understood there was a place that housed tools and materials that would aid you in repairing your broken windows.

It may have occurred to you, like those windows, you feel broken. Something outside of your control has left you shattered and vulnerable.

You’re ready to move forward and repair, but your trying to REASSEMBLE a life with the broken pieces from your past.

It’s going to take NEW tools and NEW materials to REBUILD the broken pieces of your life.

Much love,
Marissa

PS: “What are these new life tools and materials you speak of that will repair my life?” I’m not ashamed to say… I have NO CLUE.  I JUST realized I was trying to rebuild my life with broken pieces from the past. To be continued…

No Room For Two Sick People In This Inn |patient caregiver relationship

woman looking away  with hand up

by: David Castillo Dominici

If you’ve ever been to a church service, especially around the holidays, guaranteed you’ve heard about the dismissive inn keeper that turned a pregnant Mary and Joseph away as they searched for shelter in the middle of the night.

Stay with me….

Two weeks ago my fiancé, AKA Babe, came down with an illness. Nothing serious, just one of those yucky-sorta-illnesses that turn your lips pale. He started his descent Thursday and by Saturday he was a mess. We were invited to a family function, which we had to miss; therefore, no one was around.

I found myself alone with this helpless, sickly soul. You would think my loving instincts would have kicked into gear, and I would have rushed to his aid.

I hate to disappoint, but I morphed into Drizella Tremanine (One of the stepsisters from Cinderella)

I got silent, lips pursed and pouty. I was PISSED! Every response he made was disregarded by my sharp, rattlesnake responses.

What the heck was happening to me?

Why was I acting this way?

In the moment, I knew I was wrong, but I couldn’t shake off the piss-poor attitude!

Has something similar happened to you?

If wedding vows were run on a trial basis, I failed… “in sickness and in health”!

How could I be SUCH a JERK, to a man that has stood by me through my worst, and is still standing by me through a medical condition that appears to be incurable.

SO CRAZY. I got the chance to redeem myself when this illness reared it’s head this past weekend. I was better, but my performance was still disappointing.

We can’t grow unless we reexamine the demise…

  1. Babe got sick.
  2. I turned into a beast.
  3. I had a moment of clarity and walked to the local store to retrieve chicken soup, sprite, and ginger ale.
  4. Babe was thankful.
  5. I was pumped I was able to walk to the store to retrieve the items he needed.
  6. Babe wasn’t getting any better.
  7. I morphed back into Drizella.

If we were preparing to cross-examine the accused, we would find testimony 5-7 interesting.

I got pumped because I was able to walk to the store, (I don’t drive because of my condition) and retrieve the items babe needed. When babe didn’t get better, I got pissed.

Yoda to my defense…

Fear is the path to the dark side. Fear leads to anger. Anger leads to hate. Hate leads to suffering.

I got scared! I often feel defenseless because of this chronic illness, and babe is ALWAYS there to guard and protect. His illness left me venerable, and that venerability turned into fear which morphed into anger.

His illness shed light on my own insecurities and inabilities to be a proper caregiver. I wouldn’t have been able to rush him to urgent care. I was only able to walk to the local mini-mart to retrieve comforting items, which did not include a pharmacy.

What if my condition prevented me from walking that day? FEAR turned into ANGER, which was misguided and placed onto him!

I’m not sure why that inn keeper turned Mary and Joseph away, but I have to make sure I don’t follow suit and slam doors on my blessings because I’m vulnerable and scared.

Maybe it’s time to put some energies into planning for emergency preparedness in our home?

Much love,
Marissa

PS:  Raise your hand if you are a work in progress!