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

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!

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

How Many Years Can Chronic Illness Keep You From Marriage? | Life With Chronic Illness

Engagement- hands behind back holding ring box

Image by: scottchan

I need you to listen up now! I don’t want you to make the same mistake I did… SO PLEASE… pay attention.

Maybe you’ve come across the discouraging stat: 75% of marriages end in divorce when a spouse is stricken with chronic illness.

This distressing statistic didn’t even phase me. Getting through a wedding day terrified me!

I’d been engaged for years before I even considered getting married. (Didn’t Babe know about the stat?)

When Babe proposed I didn’t hear “Will you marry me?” I heard… ” I ACCEPT YOU”!

Chronic illness really messes with your head! A specific piece of information comes into the brain for processing, but your so battered from feeling like s@%t you don’t properly process the intended message.

See, the acceptance message I pulled from Babe’s proposal was all I needed. I wanted to stay exactly in that moment. Acceptance was my happily ever after!

After the unforeseen engagement, I didn’t run out and purchase bridal magazines, start a “wedding of my dreams” Pinterest board, and I sure wasn’t in the headspace to set a date.

Don’t get me wrong. I was on cloud nine knowing I would be spending the rest of my life with an AWESOME man that made my heart flutter!

So, what was the problem? I was uncertain.

Questions started to collect:

Can I make it through my wedding day? How long can I stand still during the ceremony? Should I hire a DJ even if I can’t dance at my own wedding?

The questions kept coming!

The burden of questions became paralyzing. I didn’t have the “right” answers. I didn’t know who to turn to for support. When I did attempt to express my feelings, to a select few, I didn’t want to accept their solutions.

Weddings are supposed to generate one of the happiest days of your life, however, questions piled up so high I couldn’t see how I was going to experience a joyful day.

So, I did what most people do when their facing an uncomfortable situation, I avoided it. I steered clear of the idea of marriage. I was content with being engaged.

Funny thing happens when you attempt to avoid something specific, it ALWAYS seems to show up!

I couldn’t attend a major family function without someone hinting about wedding dates and plans.

Didn’t they get it?

You see, marriage was only possible after “the miracle”. I was waiting on a cure!

It’s evident that my hesitation to get married was kept alive by a belief that I was going to be miraculously cured.

Subconsciously, I REFUSED to entertain the idea of getting married. ONE DAY I was going to have a joyous wedding day, which was not possible if I remained chronically ill! ( What a horrible message to have continuously playing in the background!)

Listen up: DON’T make this mistake. Don’t distance yourself from experiencing joy because your waiting on a cure. Don’t bombard yourself with burdens that will bury you. Surround yourself with practical solutions that lead to positive outcomes.

If you find yourself asking questions that don’t have meaningful and productive answers… consider rephrasing your questions!

I’ll leave you with this.

Last month I got married. WHOOP…WHOOP… We ELOPED!

I couldn’t have been more proud of us as a couple. It wasn’t about dancing, being walked down the aisle, or making it through the day.

It was about our commitment to one another. It was about creating an environment that allowed us to celebrate one another. It was about putting ourselves in a situation where we had the opportunity to process and experience the beautiful union known as marriage.

I LOVE being married. I LOVE being a wife. I LOVE that I get to be happy despite chronic illness.

In sickness and in health!

Much love,
Marissa

PS: Babe and I were engaged for 7 years before we got married!

PPS: Crazy thing…in my mind we’d only been engaged for 3! Allow me to repeat: Don’t keep yourself from experiencing joy because your waiting for _________(insert whatever excuse you’re currently harboring.)

You Get News That An Old Friend From High School Just Had a Stroke

Emotions are racing and you move from shock, sadness, to concern.

Your NOT SURE EXACTLY what happens to the body when someone has a stroke, but you know enough to associate the word with a terrible medical event.

Majority of us would respond exactly the way I just detailed when hearing about MOST major medical events.

The word recovery ALMOST NEVER enters the mind. Fixation on the event itself set’s precedence, and we can’t fathom what a person going through a serious medical event endures after the onset.

A few major medical events and their possible recovery and treatment paths:

  • Cancer leading to chemotherapy treatment.
  • Stroke requiring open brain surgery leading to post-stroke rehabilitation.
  • Arthritis leading to infusion treatments.
  • Rare form of liver disease leading to transplant wait list. After transplant comes months of immunosuppressive medications to prevent the body from rejecting the new liver.
  • Vestibular(balance) disorder leading to balance retraining through vestibular rehabilitation.

These major medical events require treatment protocols in attempt to heal the body.

These recovery modalities are often times painful, emotionally devastating, scary, physically taxing, ongoing and are accompanied with a slew of other unpleasantries.

This months 12-12-12 project, learning about brain AVM, has had a lasting impact on me.

Project member Sarah had TWO STROKES before the age of 35, YET that’s not where her story ends. Sarah had to endure several months of rehabilitation to gain her independence.  She is left with daily physical reminders of the stroke.

SO when you hear that someone is going through a major medical event, find a way to support them beyond your initial shock. They are working to hold onto who they used to be while accepting the reality of a life that has been drastically altered.

Sarah shared with me an awesome blog called Hope Heals. The blog chronicles the life of a woman names Katherine Wolf and her message of hope after suffering from an arteriovenous malformation.

This video is the PERFECT example of how a major medical event can turn a person’s world upside down.

Much love,
Marissa

 

Hidden Disability Universal Symbol

To symbolize is to acknowledge representation! I found it comforting knowing a Hidden Disability Universal Symbol was even in existence.

Hidden Disability Symbol

Proposed international symbol for Hidden Disability, copyright Laura Brydges.

To see is to believe, and being forced to prove you have a medical condition that is not visible has been frustrating, disheartening, and demeaning.

Hidden disability is defined as…

” Those disabilities that cannot be directly identified through observation. They can include cognitive, chronic health, and psychological disabilities.”

FOR THE NUMBER CRUNCHERS….

Here, are some hidden disability stats published in the 2002 US census.

Approximately 7.9 million people 15 and older had difficulty seeing words and letters in ordinary newspaper print, including 1.8 million people who reported being unable to see.

An estimated 7.8 million people 15 and older had difficulty hearing a normal conversation, including approximately 1.0 million who reported being unable to hear.

People with limitation in cognitive functioning or a mental or emotional illness that interfered with their daily activities accounted for 6.4 percent of the population or 14.3 million people.

7.9 million people with one or more selected conditions. (leaning disability; mental retardation; Alzheimer’s disease, senility, or dementia; or other mental or emotional condition).

I support an international symbol for hidden disability for the following reasons…

1. The symbol is an acknowledgment that hidden disabilities do exist.

2. It will create conversation which will bring awareness.

3. It’s a symbol that can be used anywhere… “It can also be used by organizations, such as hospitals and schools, to identify those with hidden disabilities that may require special assistance.”

To learn more about the Hidden Disability Universal Symbol, please check out the Hidden Disability Facebook page.

References:
http://www.census.gov/prod/2006pubs/p70-107.pdf
http://www.disabled-world.com/disability/types/invisible/
https://www.facebook.com/HiddenDisability

Much love,
Marissa

Accessibility In Practice

How far would you be willing to go to make your content or service available to as many people as possible?

Would you be willing to record a video blog of yourself reading out-loud over 175 of your blog posts making sure you don’t leave out individuals with impairments who want access to your content?

Let me introduce you to Sarah Levis. Sarah is actively making her message available to ANYONE  that desires access.

I will be interviewing Sarah Levis AKA GirlWithTheCane at the end of this month.

Sarah has had not one but TWO STROKES before the age of 35. She developed what is called a Brain Arteriovenous Malformation(AVM).

When you move form, “pretty healthy” to dealing with a rare medical condition your perspective changes. You identify with and often take on the role of “disability advocate.” A light switch turns on, and you start envisioning a world that embraces ACCESSIBILITY FOR ALL.

How can I convince you that your service, device, website, SHOULD be accessible?

You don’t have to get sick or become disabled to “see the light.” Have a little faith in those that have gotten sick and or disabled and are making the daily scarifies.

Trust me when I say EVERYONE WANT’S ACCESSIBILITY!

You may think moving from “pretty healthy,” to ” chronic disability” is a far fetched idea and not scheduled into your life plans. I pray that is the case. BUT life happens and when it does you will appreciate those that are putting accessibility into practice.

Repeat after me….

“Completing this project will take a while! But I believe that it’s worth doing.”

Check out Sarah’s first video blog post:

Much love,
Marissa

Building An Inclusive Web For All…WHOOP WHOOP

I believe technology is a tool that can tip the balances in how people produce and participate in society. Especially the internet with its far reach. However, these tools are not often built in a way that allows all users to equally participate.

Can I get an AMEN? Someone that actually speaks my language!

How often do you get a chance to complain (to someone outside your community… who actually cares?) about annoying blinking lights, flashing animations, optical illusions, and all the crazy visual disturbances on the web?

Hmmmm… NEVER!

Maybe you don’t have a vestibular issue (Thank God!), BUT you want to talk about the kick a** web applications that are allowing you to connect and access the web.

Accessibility evangelist Gregory Tarnoff  cares about your experiences on the web…GOOD or  BAD! 

Take him up on his offer and fill out this form

Have further questions? Hit Greg up:

Greg’s Twitter: @tashitachog

Greg’s Blog: http://tarnoff.info

Much love,
Marissa

P.S. When someone hands you the mic… USE IT!

 

Finally Turning On Life’s Joyful Flashlight

These last 7 years of vestibular(balance) chaos has led me into deep, dark, corners. I don’t often get opportunities to relish in joy.

Differing disabilities, one community | Meet disabled people online

 

Yesterday seeing the article that Blake Watson and myself coauthored for Disability Horizons, left me cloaked in joy!  I was beaming yesterday.

 

Disability Horizons - A 21st century view of disability

I want to experience more days like this! I need to experience more days like this. This condition has no problem leading me down a dark path. I realize I will have no problem finding my way out of darkness with the help of life’s joyful flashlight.

Much love,
Marissa