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

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

DISABLED ENTREPRENEURS – THE POWER OF CHANGE

The obstacles many of us face with disabilities on a daily basis are challenging enough without having to constantly fight the uphill battle for basic medical supplies we need with insurance companies, durable medical suppliers, and the labyrinth of government assistance.  Many of us strive to create and live our lives to the fullest, but we are, oftentimes, faced with one roadblock after another.  The sheer determination and will of living with a disability is commendable enough, but there are so many people with disabilities who take that extra step to break the barriers within the business community in order to help their fellow disabled live a more independent life.

Read on Push living Magazine: https://pushliving.com/disabled-entrepreneurs-the-power-of-change/

 

THE “DEVILISH” RASCAL WITHIN – CHRONIC PAIN

Writing is a therapeutic activity for me as it helps calm my mind, reduces my pain levels, and allows me to try and help others from afar.  Over the last two weeks I repeatedly opened a new word document to write my next article only to find myself closing the program down after a few sentences.  This process repeated over and over again, and I chalked it up to writers block.

The other day as I was sitting on my computer thinking more critically about why I could not put words on paper as I kept fidgeting in every direction in my wheelchair unable to find a comfortable position.  I started to notice the pain in my neck has slowly been increasing over the last several weeks for no immediately obvious reason.  I had not changed anything in my routine, my diet, my exercise program, etc., but the piercing feeling of knives running down the scar on the back of my neck from one of my surgeries continued to persist.  This new pain has prevented me from maintaining my laser focus as I am usually accustomed to.

This prompted me to think about chronic pain more critically.  I scrolled back through many of my articles over the last several years and realized I have never taken the time to describe what chronic pain means to me and likely for the millions who suffer from it too.

Pain stems from inflammation in the body because inflammation is part of the immune system’s response to danger.  It’s a hugely complicated process to prepare our body to fight off hostile forces.  There are two main types of pain in our body – Acute Pain and Chronic Pain.

Acute pain usually comes on suddenly and is caused by something specific.  Acute pain does not last longer than six months and goes away when there’s no longer an underlying cause for the pain such as surgery, broken bones, dental work, burns or cuts, etc.

Chronic pain is ongoing and usually last longer than six months.  This type of pain can continue even after the injury or illness that caused it has healed or gone away.  Pain signals remain active in the nervous system for weeks, months, or years.  Chronic pain can include headaches, nerve pain, cancer, arthritis, fibromyalgia, etc.

A majority of folks who sustain a spinal cord injury suffer from extreme chronic pain in many forms after their accident. Before I broke my neck I would look at somebody in a wheelchair and wonder what they felt? … I thought they couldn’t feel their legs or their stomach, etc. I was epically wrong! Continue reading

Adaptive Technology Life Hacks

One of the first things we tend do in the morning is head to the computer to check emails, read the news, browse social media, etc. Many of these tasks are automatic, as we push the power button on our computer, move our mouse to the right icon to open the internet, and use the dexterity in our fingers to type the keys so seamlessly. Fortunately, touchscreen technology has made these things much more convenient. However, while some people are able to do everything on their touchscreen, some need complex software to be able to go about their daily lives at work.

A challenge faced by many who are quadriplegic and don’t have the use of our hands or arms, is how to automate many of these processes to make technology less intimidating, since many of us depend on “devices” in this day and age.

I need the full computing power of a laptop every day to work as a day trader, editor, writer, and to interact with the world, as I am home most of the time throughout the week. While I have a caregiver to help with my physical needs, the one area of privacy I need in my life is when I enter the digital world. I want to be as independent as possible.

Over the years, I’ve experimented with different adaptive technology equipment and software.  I’ve gathered input from many of my fellow spinal cord injury friends on what they use to interact in the digital world.  For many whose jobs don’t require constant use of a laptop or desktop, a tablet is sufficient for them, and they can use their paralyzed fingers to do all of their typing.  However, my needs are different and I’ve put together a list of adapted technologies with videos and links to show you how I work around some of the physical challenges I face.

 

Read the rest on Push Living Magazine: https://pushliving.com/adaptive-technology-life-hacks/