Life Possible with Karen Roy Podcast

Sponsored by Numotion

My dear friend, Karen Roy, was gracious enough to host a beautiful podcast with Billy Warden and myself on our outing where I took Billy for a night on the town. I offered Billy a different perspective on being a wheelchair user by fitting him with a Permobil F3 power wheelchair and taping his hands up to make little “paws” as my hands are as a C6 quadriplegic.

Naturally, I cannot offer any able-bodied person a true experience of what it’s like to be a quadriplegic, but I did have the ability to offer him a perspective shift for a day a few of the challenges many of us wheelchair users and quadriplegics go through on a regular basis.

As Ms. Wheelchair America 2023 I am constantly looking to push boundaries with respect to inclusion, but also focus heavily on changing people’s perspectives in many arenas in life. Karen Roy, Ms. Wheelchair America 2019 was such an inspiration for me running as we shared similar platforms with respect to health insurance, adaptive exercise equipment, and medically necessary equipment.

Accessible Pool Lift for My Community – Pushing Beyond Minimum Accessibility Standards

DONATION LINK: https://helphopelive.org/campaign/20851/

Dearest Friends, Family, and Supporters!

For many of you that know me, as a C6 quadriplegic paralyzed from the chest down in a shallow water diving accident in 2010, swimming is the one activity in my life that reduces the chronic nerve pain throughout my entire body and allows me to get out of my wheelchair to swim independently.

Swimming not only helps with many of the physical secondary complications that arise from being paralyzed, but allows me the dignity, grace, independence to have one activity in my life that is the most freeing experience in my life.

After being humbly crowned Ms. Wheelchair America 2023 in August on the platform of health insurance advocacy I spend nearly 30% of my week giving back to the community to make our society more inclusive in addition to working a full-time job to cover a very expensive disability life for caregivers, health insurance costs, and much more as many of us with disabilities are unfortunately put in the challenging situation to navigate ourselves.

I love what I do and I live by two philosophies in life. Paying it forward and Human Kindness. I was extremely humbled to connect with 21 incredible wheelchair advocates around the country at the Ms. Wheelchair America competition. Each of these extraordinary women work each and every day, as many of us do, to push the limits of minimal accessibility standards within our country to create a more inclusive society for everyone.

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THANK YOU NEW MOBILITY & TO MY UNITED SPINAL FAMILY – WHY Ms. Wheelchair America IS SUCH AN IMPORTANT COMPETITION

Honored to have such a beautiful Article written about Ms. Wheelchair America and what this advocacy competition is all about!

MS. WHEELCHAIR AMERICA 2023 – HERE I COME!

It’s hard to believe that nearly 10 months have passed since being crowned Ms. Wheelchair North Carolina 2022.  I have been engaging in so many advocacy activities over the last year to further my advocacy mission. 

I am just a week away from heading out to Ms. Wheelchair America 2023 to compete with 22 other amazing wheelchair advocates in a competition that is going to create memories for a lifetime.

I looked up some of my amazing competitors, some of whom are actually friends of mine, and they all have fantastic platforms engaging in meaningful work to make our society more inclusive to folks with disabilities.  It certainly going to be stiff competition for sure.

I know people who lose competitions probably say this all the time, but honestly, WIN or LOSE I am certain of one thing.  All of the advocacy work I engage in around the country and globally involve collaborating with people.  I don’t just mean anyone, but rock-star disability advocates in their own respective fields regardless of what disability they may have.

So, I KNOW THIS FOR SURE — I will be collaborating and partnering with many of these rock-star women for years to come on so many different missions in the name of making the world we live in more inclusive for future generations.  I commend those that came before me and it is only fair that I do my part for those who will take over in the decades to come.

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The Pitfalls of being a “Super” Communicator

I never critically stopped to ponder why being a great communicator can also lead to a very lonely existence at times.  Since I was a child, I have always been “perky” as they say and never had a problem in social settings.  I love people, communicating with them, helping them, and always trying to find a middle ground between disagreeing viewpoints.

Since my accident so many people tell me that my patience levels, communication skills, and calm demeanor are extremely admirable.  This is what I’m told to my face anyway.  I believe it’s true though as I have this odd ability to stay unusually calm in stressful situations, and be patient for far longer than I probably should be at times.  

I attribute much of this to Blue Cross and Blue Shield with the hundreds of hours I’ve spent on the phone with folks that are not particularly bright trying to get medically necessary equipment approved.  I recall this one day I spent nearly 7 hours on the phone calling back Blue Cross and Blue Shield trying to find someone who could actually help me or transfer me to the right person.  On that particular day I do recount losing my patience as I started to raise my voice, which is very unlike me.

On a serious note, and I’ve written about this on my social media before, living with a disability where you are physically dependent on other human beings to help physically take care of you each day is a blessing, and a challenge wrapped up in an emotional bow.

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SPENDING A YEAR IN BED

SPENDING A YEAR IN BED:

New YouTube Video Out — Quirky Quad “Shower Talk with Ali” — UNCENSORED!

I bet you don’t know a lot of people that have spent a year in bed. Why would you? This is definitely not normal. I’ve written about it before, but I take you on my video journey with probably more information and photos then you care to look at, on what my life was like when suffering from a major pressure sore down to my tailbone in 2015.

This is a story of hardship, triumph, mental fortitude, sexy ICU Photoshoot’s, a ton of dark humor, and how I survived an extremely traumatic experience in my life.

Most people think the physical side of living in your bedroom for nearly a year looking at four walls was the most challenging part with all of the surgery, but it really was all mental!

Some of the strategies I employed in my own life have allowed me to get to where I am today and be who I am today! Leaving my professional skill sets aside, having a lived experience with disability makes so many of us profoundly capable of so much more than society and companies give us credit for.

We only need the chance to prove that we are incredibly resilient human beings, intelligent, resourceful, seriously organized, incredible at paying attention to detail, and determined to succeed more than most I would argue.

Enjoy, but I will warn you there are some graphics that might be a little bit disturbing, but are 110% real life.

Living with a spinal cord injury as a quadriplegic is no joke. Death is quite literally around every corner every day of the year. Food for thought when you think about perspective in life.

Adaptive Exercise Equipment Legislation Introduced in North Carolina

This is a super proud advocacy moment for me!

Many of you that know me, know that I spend much of my time battling health insurance companies and helping individuals get the medically necessary durable medical equipment they need to not only survive in life but to thrive.  Over the last two years I’ve taken my mission one step further to focus on having adaptive exercise equipment for long-term wheelchair users put under a “Medical Necessity” Review under Durable Medical equipment. 

Today as it stands, under Medicare and private health insurance companies, any type of exercise equipment is considered a non-covered benefit item.  This means it does not have a code and will not get approved.  Unless you have specific laws in your state, are part of the VA, or have an “in,” you’re not going to have much luck in getting approval. I know … I’ve been fighting for an adaptive rowing machine called the Vitaglide for 2 years — With no luck I might add.  Even after writing a 35 page Letter of Medical Necessity backed up by over 130 peer reviewed journal articles, which took me 4 months to research & write, I was treading water.

Despite my 24 month herculean effort I still failed.

Step 2

I then decided to take my mission to Blue Cross and Blue Shield directly.  Through a series of internal contacts and help from the North Carolina Department of Insurance I started working with multiple policy directors.  I gave speeches, had zoom calls, created videos, and more.  This was a four tedious process trying to make a financial and medical argument for preventative healthcare for adaptive exercise equipment for long-term wheelchair users to be reclassified.  Honestly, this epically failed and several months ago I received a beautiful blow-off letter from Blue Cross and Blue Shield.  No bites.  You can see the attached letter yourself.

Step 3

Have no fear.  I was working behind the scenes with my North Carolina State Senator Jay Chauduri on this very issue.  In May 2020 we finally introduced legislation trying to mandate health insurance companies to put adaptive exercise equipment for long-term wheelchair users under a medical necessity review.  Very proud of this accomplishment.  However, I’m acutely and painfully aware, I might add, the success of this bill is slim to none.  However, this creates a beginning legislative track record for me.  I am now working on different plans over the next nine months to introduce more legislation.

It’s going to be a very long road, I’ve heaved advice from so many around the country, but I’m also kind of a one woman show on this front.  I just keep pushing and pushing and pushing.  I’m ridiculously determined, pleasantly persistent, and will continue down this road is long as there is someone to listen to me.

I simply won’t stop.  I don’t know how to give up.  I never have.  As Winston Churchill famously quoted “The Definition of Success is Moving from Failure to Failure without Lack of Enthusiasm.”  I live by this quote on a daily basis living with a long-term severe physical disability.

Change can start with one person.  You may not be able to affect national change by yourself, but you can ignite that spark in others, create a movement, and while you may not accomplish what you would like to in a year or two or 10 — I have no doubt I will ignite a spark in the younger generations to continue my work for many years to come!

Reeve Foundation – Reducing Barriers in the Disability Community

Thank you to the Christopher Reeve Foundation for allowing me to be a guest blogger to discuss some amazing projects I am working on with a beautiful organization called Open Inclusion. We work with people with disabilities and brands to make products and services more accessible for all!

Change only happens when we speak up, take action, and do something about it!

https://www.christopherreeve.org/blog/daily-dose/open-inclusion?fbclid=IwAR1yC0x25qbWrmqMghnpnaZR6T0M6blKIhKHOyHRSP-SHR1Ppg1cEsF5hOE

Excerpt:

Over the last 18 months, I have worked tirelessly to marry my professional career with my disability advocacy work. I reached a point in my life where the work I engage in needs to be meaningful and help others in the disability community. I have come to realize this is who I am at my core – a person with a disability who believes in paying it forward, human kindness, and advancing inclusiveness for all.

I have been extremely fortunate to meet incredible leaders around the globe who have asked me to participate in delightful projects to help people in the pan-disability community gain meaningful employment, have their voices heard and time compensated for their insights. I am involved in many projects, but what is incredibly humbling to me is working with companies that truly celebrate my lived experience with a disability.

One such beautiful company I have recently started working with is Open Inclusion. Open Inclusion is an inclusive research, insight and design agency based in the UK and operating globally. Open has been built with, for and by people with disabilities. We amplify the voices of our diverse insight community by informing leading brands of their diverse customer need to help create solutions that are desired by people with disabilities, and better for all….”

JOINT CUSTODY (A Multi-Year Settlement Agreement)

Pain.  Chronic pain.  It’s no joke.  It’s debilitating.  It can lead to death.  It can be physically and psychologically crushing to your soul.  Living with physical paralysis, for me, pales in comparison to pain.  If asked that “What If” question whether I would prefer to live in chronic pain or be paralyzed, at this moment as I write this article – I choose paralysis.  This is a pretty powerful statement if you think about it.  I am essentially choosing to practically go broke, have people’s hands in my body all day long, have someone dress me, use catheters and suppositories, etc.  Think about what I am saying. 

This is how debilitating my chronic pain is.  For anyone who lives in chronic pain, your life has been undoubtedly changed forever.  I know mine has. 

When I was living in the ICU after breaking my neck in 2010, I was one of the unlucky ones who also simultaneously suffered a very deep pressure sore on my behind, pulmonary embolisms, and died a few times.  I thought “this was the worst of it” to myself.  Wow, was I in for a rude awakening 3 weeks after my accident!

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Pushing Boundaries – Question the Status Quo!

Many of you know I’ve been fighting for an adaptive rowing machine called the Vitaglide for some time now with Blue Cross and Blue Shield.

I hit a dead end working directly with BCBS policy directors and I’m now introducing legislation with NC State Senator Jay Chaudhri in May. Very exciting!

In the meantime, I’m working closely with all of the folks at Vitaglide for promotion awareness of adapted exercise equipment for long-term wheelchair users.

They were so kind to write an article on me and all of the work I’m trying to accomplish with respect to health equity and not just health equality!

Every time I fail something, and I do fail quite a lot, or something stops dead in its tracks, I usually have 10 other things in the works.

Life can be utterly exhausting, but I know one person can make a difference even if it is only to inspire others to carry on the work they have started!

Thank you Vitaglide team for highlighting some of the work I am engaged in and spotlighting my consistent efforts for which I won Miss wheelchair North Carolina 2022 on — Health Insurance Advocacy! Nationals here I come in Grand Rapids Michigan from August 15th to August 21st!

www.vitaglide.com/one-determined-woman/