The Art of Health Insurance Appeals: My Battle for a Power Wheelchair Seat Lift

As I was strapped into my electrical stimulation bike while simultaneously lifting weights I had my Bluetooth snuggly positioned into my ear listening to my “Rock it Out” music to keep my motivation over that next hour.  Pandora played a song by the black-eyed peas, which came out in 2010 called “I’ve got a feeling.” It’s an incredible dance song when you want to feel pumped up and I used to play it on repeat before my accident in 2010 when I was living at my home in the Bahamas…

… It was a time in life that reflected simplicity, clarity, and pure joy.  Life was so simple back then.  I was pumping myself up last week because I’m in another battle of a lifetime with Blue Cross and Blue Shield (BCBS) for a new power wheelchair…

… I started the uphill mission of working with my durable medical supplier, my physical therapist, and my general practitioner…

… Two weeks ago I did, finally, receive a letter from BCBS saying that they were denying me a very critical function of the wheelchair called the seat elevator.  This allows my power wheelchair to go up and down.  Most insurance companies do not think this function is medically necessary for folks in wheelchairs.  I then called all the parties involved and there was a complete disconnect among my medical providers.  So, in a very Ali fashion, I decided to take matters into my own hands.  The age-old saying “when you want something done right, do-it-yourself,” holds true 100% of the time …

… Without further ado, this is the appeal letter I sent into the BCBS appeals committee last week.  I will keep you posted on what their decision will be, but when you really want something, you’ve got a fight tooth and nail to get it.  Sadly, this is the reality we live in and the fact that we have to justify why we need certain items to insurance companies to, not only survive with the spinal cord injury, but to thrive with it is slightly disheartening.  However, this is the healthcare system we presently have to navigate within!

Read the rest on Push Living Magazine: https://pushliving.com/the-art-of-health-insurance-appeals-my-battle-for-a-power-wheelchair-seat-lift/

 

A DAY IN THE LIFE OF ALI AT 17 – CHINESE JAIL 101

In light of world events and the seriousness of everything many of us are going through with Covid-19 I thought it might be fun to talk about something completely off topic and also nothing related to spinal cord injury either!

The following is a tale of my adventurous and crazy exploits when I lived in China at a ripe old age of 17 and how I managed to land myself in Jail in Northern China near the border of Siberia.

I graduated high school at 17 and had no desire to rush off to college as so many do.  I decided to defer my acceptance into college for a year or so, but I had no idea where I wanted to go or what I wanted to do.  I walked into my father’s office and found one of those globes that spin around in a circle.  I closed my eyes and my finger landed on Beijing, China. Continue reading

NAVIGATING THE CORONA PANDEMIC – A DIFFERENT PERSPECTIVE

Today is the first quiet moment I have had in over six weeks and I realized I had not engaged in one of my favorite activities – Writing!  Life has been a fast-paced world wind of excitement, chaos, joy, and hustle recently.  This doesn’t even include the elephant in the room at the moment of our current Pandemic of the Coronavirus!

In November my husband and I purchased our first home, started renovations, packed up our old apartment, and made the Herculean effort of moving a quadriplegic to a new home all before the race of the Coronavirus.  It has been nonstop for me and I’m elated to find a quiet moment today to get back to what I love.

We are finally moved into our beautiful new home, getting settled in, and trying to make our home finally feel like a home.  In short, we have been “Adulting!”  I had a singular mission of trying to move into our home, but on the tail end of moving the Coronavirus started moving at accelerated rate – although not before we were able to physically get into our new condo.  Thankfully, at present, we are quarantined at home and are both still busy working while still having endless To-Do projects.

My husband, Aaron, has been working tirelessly for the past 9 months and we have barely had time to spend together, so it’s a treat to be able to be locked in the house together.  When we don’t feel like it’s such a treat to be locked in together 24/7 — then we have wine 😉

Over the last 10 years I’ve never really been able to take a real shower and having my newly renovated bathroom is a dream come true.  Last week I had my ceiling lift installed, which was so fun as I was swinging like a monkey.

Now, I don’t have a shower chair yet as things have pretty much come to a stop from a retail standpoint with the pandemic, but looking at my shower at the moment is equally as gratifying.  I’m sure once I take a real shower I will have a different take on it.

The last several weeks have not been without their challenges though as millions of Americans are presently feeling.  I lost a caregiver, found a great new one, but am unable to physically work with him yet as we have “stay at home” orders directed by the state of North Carolina. Bringing someone into your home during a pandemic is probably not a brilliant idea considering I have a compromised immune system and less lung function than most.

I’ve spoken to dozens of friends who are disabled and able-bodied, and life generally is not looking rosy for most folks right now.  I don’t even know what this country will look like when we are done with this, how we will rebuild, how the financial system is going to recover after a $2 trillion stimulus, but there is one thing I do know.  The only way we are going to get through this is if we stick together and not trample thy neighbor for a roll of toilet paper. Continue reading

Aquatic Therapy – The Story of a Paralyzed Mermaid

 

Thinking back to my childhood I recall playing the “what do you want to be when you grow up” game with other kids.  My answer was always a resounding “mermaid.”  The water has always been such a central part of my life having grown up in the Bahamas.  When I broke my neck nearly 10 years ago, I couldn’t imagine how life would continue if I was unable to get back to the aquatic lifestyle I had become accustomed to.

When I was in the ICU and inpatient rehab the first few months after my accident, I was also battling a stage III pressure sore on my sacrum.   I could not wrap my head around how I would ever get back into the water.  I saw many other SCI folks start to dive back into activities in rehab, but I was not as fortunate. I was confined to bed rest all day, except for several hours of rehab, due to the raging pressure sore I had sustained during transport from the Bahamas to Miami after the accident.

While I stayed focused in rehab, worked on my computer, and made the best of my situation, I started to give up hope that I would ever get back into the water again.  Once I was released from rehab and sent home, I kept asking my caregivers and my mom every day if my pressure sore was healing, and I kept asking wound nurses how long it would take.  I didn’t know if I going to be able to get back in the water, but my family and I kept researching swim instructors anyway.  Somehow, I held onto a glimmer of hope despite the mounting medical challenges I was facing.

Read the rest on Push Living Magazine:  https://pushliving.com/aquatic-therapy-a-story-of-a-paralyzed-mermaid/

 

INTIMACY AND ROMANCE AFTER MARRIAGE – “NEWLYWED LIFE”

If you get married in your early 20’s I’m sure life after marriage, especially newlywed life, is comprised of sex, unicorns, and rainbows!  However, I think when you get married in your mid 30’s or later the concept of romance and intimacy after marriage profoundly changes.  So many television shows and movies over the last century have romanticized newlywed life for so many.

In several months I’m coming up on my one year anniversary of marrying my one and only, my main squeeze, and my partner in crime.  I can only share with you what I’ve learned thus far and I’m sure the life lessons will continue to roll in as the year’s progress.

Being a newlywed comes with so many new adventures, challenges, and compromises.  I think we were unique as a couple respect to understanding the intimacies of daily life because of my situation with spinal cord injury.  My “now” husband had to intimately understand everything that comes along with my care, my life, and issues I face.  I find so many couples don’t really get to know one another until years after marriage, but there are advantages to having a disability as you really need to show your partner your whole self because they need to know what they are getting into if they want to be with you for life.

Read the Rest on Push Living Magazine: https://pushliving.com/intimacy-and-romance-after-marriage-newlywed-life/

 

The Downfall of Our Healthcare System: A Harsh Reality

The battle I was fighting today was one of in-network providers. I need to give you little context as to how healthcare has changed over the last several years. While I understand Obama Care has many faults, several years ago the system was much more amenable to those in need than it is today. Frankly none of the systems we have work for healthcare today, but things have gotten MUCH worse over the last few years.

While I do work, this is really a fraction of what I do in my day. Many days are spent on hold for hours on end fighting with insurance companies, figuring out why a new part of my body has developed pain, driving around town to endless doctor’s appointments, handling the anxiety of hoping a caregiver will show up for work, and enduring the grueling process every single morning of having people put their fingers in my body just to go to the bathroom, and so much more – all at 36 years of age. This is not what I had envisioned my life to be no matter how much I make light of the situation I am in.

Today, however, my tears grew to rage as I finally got a human being on the phone from Blue Cross and Blue Shield. The fact that I have to fight for every detail to try and get covered by my health insurance is borderline criminal. Is it not enough to have to deal with the injury alone? I know I am not alone in this fight as so many of my other friends with spinal cord injuries are in a constant never ending war with bureaucracy trying to survive.

“A STORY OF THE GIGGLING UTERUS”

It all started with two little pills – one from above and one from below …

There are not often medical stories in my life that end up in giggles, smiles, and rainbows, but I am proud to say this one did!

In my adolescent years of spinal cord injury I developed several pulmonary embolism’s causing me to take blood thinners for several years.  As a result, high levels of estrogen in my blood (found in many contraceptive pills), which have the tendency to cause blood clots, would forever leave me in a situation where estrogen could quite literally kill me.  This posed a challenge for me as I became sexually active several years following my accident.

In my particular case, becoming pregnant would very likely result in my untimely demise.  Needless-to-say after being killed by several medical professionals years earlier due to a cockup with a certain medication; I was not particularly keen to repeat this experience nor have a little bun in my oven of my own. Continue reading

INSPIRATION WHERE YOU CAN’T SEE IT – FINDING YOUR LEPRECHAUN

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The other day I was reading an article on how traveling on airlines are far from “accessibly” friendly to those in wheelchairs. In this article the story started out by featuring a wheelchair user in his mid-twenties named, and you may know him, Shane Burcaw.

If you have not heard of Shane before he suffers from muscular dystrophy and has been in a wheelchair since he was a child. Due to multiple contortions of his body he has to fly in a very intentional manner. His only weighs about 65 lbs., so he has to take a child’s car seat on the plane with him. He then experimented with multiple iterations of high-quality foam, which he spent nearly $8,000 on, to fit on the left and right of him in order to avoid pressure points. He actually did a video with his now fiancé on how he does this.

He’s marvelously funny and very articulate. He started a blog nearly a decade ago and is now a public speaker as well as having a very successful YouTube channel with his fiancé where they talk about relationships, and daily dating life. I highly recommend you check it out, but that’s not the point of this story.

The article sparked me to think about ‘inspirational” disabled people and those wonderful stories you read about those overcoming the greatest of odds in the face of the most adverse situations. Where do we hear most of the stories? Why on social media of course – Twitter, Instagram, Facebook, YouTube, you name it, and the stories are out there.

Continue reading

PARALYZED MERMAID Sighted in the OCEAN – TRANQUIL ADVENTURES in Key Largo

The last five weeks have been a world wind of adventure and new beginnings for my husband and me.  We went down to Miami for three weeks in the middle of October for our annual relaxation and recharge trip to see friends, family, and explore new handicap accessible adventures.

We returned back to Raleigh, North Carolina to quickly close on our first condo home together!  It’s been nonstop the last two weeks working with contractors to make my bathroom accessible before we move into our new home in the New Year.  So many wonderful changes, but we’ve been busy.  So, I apologize for the Quirky Quad hiatusJ

While we were in Miami we were surrounded by friends and family on so many adventures, relaxing at Tiki hut bars, having piña colada’s at sunset, taking accessible boat rides at Shake-a-Leg sailing school, and so much more.

However, this year I really wanted to be able to get into the ocean, snorkel, and go on new adventures.  I looked far and wide, but I could not find any accessible boats that had a seat to lower me into the ocean so I could go snorkeling with my husband.

I broke my neck in the Bahamas 9 years ago at my home and other than a brief dalliance in the ocean on a cruise in Mexico two years ago, I’ve been unable to get back into the beautiful waters of the ocean.  I’d like to head back to the Bahamas in the next year or so, but I wanted practice to make sure I could swim as well in the ocean as I am able to in the pool.

On our trip to Miami last year many of my wheelchair friends told me about this gentleman named Captain (Capt.) Mick who runs a nonprofit organization called Tranquil Adventures in Key Largo (https://activedisabledamericans.org/).  Somehow time got away from us last year, but this year I was determined to make it happen. Continue reading

Quirky Quad On Vacation

Hi Guys … I’m headed down to Miami for the next three weeks with my fabulous husband.  I’ll be taking a vacation from the Quirky Quad until I return in the beginning of November.

Follow along on Facebook for some great memories, adventures, and pictures to come!