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

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

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

Chicago-Joliet-Naperville
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,
Marissa

“*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. “

Sources:
http://www.huduser.org/
http://housing.lacounty.gov/index.html
http://www.ssa.gov/pressoffice/basicfact.htm
http://www.endhomelessness.org/library/entry/the-state-of-homelessness-2013
http://chispahousing.org/docs/The%20Positive%20Impacts%20of%20Affordable%20Housing%20on%20Health.pdf

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!

Zimmerman- What Have You Done?

I think of Tracy Martin and Sybrina Fulton (Trayvon Martin’s parents)… DAILY!

Tracy Martin and Sybrina Fulton

Source: Change.org

My heart is SO FULL for them.

I had to get some emotion out…

Zimmerman
Boiled over rage,
Geared up to engage.
Pent up frustration,
Misguided antagonization.
Vulture seeking prey,
Unwilling to obey.
They commanded you to stop,
Pissed you didn’t make it as a cop.
You already made a decision,
You would hunt with precision.
The devil took over,
Couldn’t shake him off your shoulder.
Concealed semi-automatic gun,
You took away a families loved one.
Could it have been a clouded decision?
Your lack of vision caused a collision.
I pray for your soul.
Your spirit will take a toll.
Reminded us that racism is silent.
Hoping the streets don’t get violent.
Could there be you in all of us?
Silently waiting to make a ruckus?
I pray this can’t be true,
But hate is an easy emotion to ensue.
There may be a silver lining,
God will reveal in his own timing.
Until then I pray for the family,
Trying to make sense of this senseless tragedy.

Tracy and Sybrina have asked us to sign a petition over at Change.org

We’re calling on 21 governors whose states have some form of ’Stand Your Ground’ laws to review those laws and amend them so that people who instigate conflicts…

You can sign the petition here: http://www.change.org/petitions/change-for-trayvon-stand-your-ground-laws-must-be-reviewed

Much love,
Marissa

PS: Thank you for being open to this blog post. I realize the blog is chronic illness and vestibular disorder focused…

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

 

Sick And Tired Of Consuming Your Way Through Life? I Understand

Take Action Switch

By: Stuart Miles

Received an email that got me thinking!

The people that are successful in any aspect of their life (financially secure, weight loss, gaining new skills, breaking addictions, etc.) … DO.

The people that dream of being successful …CONSUME.

I have been consuming for years!

* Let me read ONE MORE self-help book.

* If I follow THIS PARTICULAR BLOG, I’m sure to uncover the secret of success.

* She’s healthy, I’m not, SO I can’t learn a new skill.

* I wasn’t in those fancy AP classes in high school, SO I’m not smart.

* I wasn’t born with “talent”, SO that’s not possible.

* I’ve made mistakes in my past, SO I’m being punished with poor health.

The list goes on and on! Why put this out there? Because, I believe in accountability.

Throughout the years, successful individuals have waltzed in and out of my life. Success I don’t define as solely materialistic. Individuals completing marathons, running a successful business, finding a soul mate, losing 20 lbs.

Enter, Vanna.

(Awesome name change to protect her identity!)

I remember this gal playing 1/2 No Limit Holdem. She was good but wasn’t Jennifer Harman. She believed she could be a successful poker player. The belief wouldn’t have been enough. She worked daily to achieve that goal. Myself on the other had, could have been good, maybe great, but I had to read one more poker blog, one more book. I didn’t take action. I didn’t apply! I second guessed myself. I compared myself to others.

On the other hand….

VANNA may have had doubt, BUT that didn’t keep her from putting in daily work. Vanna consumed poker content, but she didn’t let that consumption of content keep her from application. She worked at it, and I NEVER want to play a hand of poker with that gal! She is now a professional poker player.

SO! I publicly state that mediocrity is a choice.

Living with a chronic illness I have EVERY RIGHT to continue to consume my way through life. I don’t have to take drastic and life changing action. Some of my doctors support mediocre and small actions. (“If you build up enough stamina you could work at a bookstore two hours a day.”) I can be praised for getting up daily and pressing on because that is the acceptable expectation based on my health circumstance.

Guess what?

That sucks! To be in the same place expecting different results in 30 days is ludicrous! I would be delusional if I didn’t believe life changing action would be difficult because of my medical situation. However, it’s not impossible to set and achieve meaningful goals while having limitations.

SUCK IT UP Marissa!

*It’s time to TAKE DAILY STEPS maintaining motivation so in 30, 60, 90 days dream’s, become effective goals!

PS: Accountability is essential to making lasting change so I will keep you posted!

Let Me Tell You About The Man I Love

Heart made from sunflower seeds

Photo by: justingun

The blessing bestowed upon me from above

A friendship that blossomed into affection
A relationship built from a strong connection

A turbulent roller coaster moving at high speed
Life altering circumstances that planted a seed

It would have been acceptable to walk away
You gave me a ring and promised you would stay

Through your eyes I see that I have changed
Yet, you never alienated me leaving me estranged

It’s here I make this public decree
We are not always going to agree

BUT I am going to love you and continue to grow
I will fight for us and not let go

So on this Valentine’s day, please allow me to say,
I will greet you with love at the end of each work day

I will always have your back
When the evil of this world want’s to attack

I will work harder to fight a harsh tone
Remembering not to cast the first stone

I won’t be perfect, and I will stumble
Hey, even Dan Marino was allowed to fumble!

All jokes aside, I will remain by your side
Looking forward to one day being your bride

I LOVE you babe. Happy Valentine’s Day!

MUCH love,
Marissa AKA Babe

PS: Hugs to those that have stuck by and uplifted their “Babe’s” regardless of chronic illness.

Video doesn’t start until 15 seconds in…