“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.

So, I worked with several gynecologists to find an alternative method of contraception involving the hormone progesterone instead of estrogen.  In 2015 we decided a Mirena IUD would be the best course of action.  For those unfamiliar with a Mirena IUD, it is a small T-shaped device inserted into the uterus, which slowly emits low levels of progesterone over the course of five years.  After five years the device loses its effectiveness and you have to get it changed.

Well, this past week my five years were up.  To prevent little mini Ali’s from taking over the world I made an appointment with a marvelously funny, professional, and diligent OBGYN to have my IUD changed.  I wasn’t quite clear on the process on how this would be done, but a nurse at the office first called me in a prescription to take to soften my uterus to make it more pliable in order to take out the old one, and put in the new one.

To my comical surprise I picked up the prescription and the directions said the following:

“Insert one pill vaginally the night before the procedure and take another orally the day of the procedure in order to soften up the uterus.”

I must say it was a first for me having to put a little pill inside from down below.  Now, mind you I’m no stranger to having every orifice of my body poked and prodded with having to deal with enemas, bowel programs, and so many other things.  I felt like Alice in Wonderland having to take a pill – not to make me larger or smaller, but make to me softer.

To all the women out there, I know you are intimately familiar with how these teeny tiny little gynecological tables are situated.  Now, since I am paralyzed from the chest down I don’t have the ability to get on these tables myself, so it pretty much takes a village of helpers to maneuver correctly me in order to not roll off the table.  It’s almost as if these small gynecological tables were developed for women hundred pounds or less.

Nonetheless, I prepared for the day by bringing my caregiver, my mom, and armed with the knowledge that I would have an assistant or two at the office help me contort my body in the right position just as those in Cirque du Soleil do.  In the most oxymoronic sense … I transformed into a paralyzed Acrobat for the day.

Upon entering the room I was instructed that I would have to, not only get on the table, but somehow scoot my bum all the way to the edge while putting my feet in these stirrup like devices while my gynecologist explored the great beyond & the inner workings of my reproductive system.

I informed everyone that we were going to have to approach this maneuver with thoughtful strategy, a sense of humor, and a delicate balance of helpers holding all of my limbs.

My caregiver transferred me onto the table, but that was only step one.  Once on the table, I had my mom and caregiver on each side of me grabbing my lifeless legs, my gynecologist grabbing my bum from below all while the ultrasound tech pushed my body down from the shoulders.

Oh was it tricky, so so tricky.  I was flat on my back with both my legs being held in the air, spread-eagled and naked from the waist down.  I couldn’t help but giggle at the absurdity of the situation.  When I finally got to my desired location on this little medical table, each foot was put in a stirrup, but my mom and caregiver had to hold each leg so they didn’t go tumbling to the ground.

As I was in my assumed position, and ladies you will be all too familiar with this, these giant forceps were placed inside me in order to widen the Vagina to get a good look at my cervix, and uterus.

Prior to going into the uterus the gynecologist wanted to get a good look at exactly where the old IUD was inserted from the last time.  Since I don’t have normal sensation and I feel pain through pins and needles, my doctor wanted to have the ultrasound tech pull up a picture of my uterus on screen to ensure proper excavation of this tiny little wonderful pregnancy preventing device.

As the ultrasound machine pulled up a picture of my uterus, my ultrasound tech started grinning from cheek to cheek.  I couldn’t understand why looking at a uterus, which she undoubtedly had seen thousands of, was so amusing to her.  She gleefully looked to me and exclaimed that I have one of the most perfect uterus’s she’d ever seen!  It was straight, perfectly proportioned, exquisitely positioned, and absolutely marvelous.  She added that my bladder was full at the time, which apparently most patients do not have while undergoing a uterine ultrasound, but that it made the picture even clearer.  I have a catheter system that allows me to close off a little clip and only open it when I actually have to pee and I designed it myself.  Another one for the win column in keeping my bladder healthy over all these years!

Listen, I don’t often have many medical wins, and while this may seem ever so small, the complement of having the perfect uterus simply made me burst out into laughter.  I’m not quite sure how the perfect uterus wins many gold points in a spinal cord injury world, but I was elated none-the-less.  Even my gynecologist was surprised at how wonderfully shaped this female organ was, which I possessed!

From a medical standpoint, a perfectly shaped uterus, meaning one that is not curved or contorted in any sort of way, makes for extraction and insertion of this little medical device go much more smoothly.

We were ready for the procedure to commence.

One of my caregivers had never seen this procedure, as he is a male, and watching his wide-eyed look as my gynecologist took these scissor looking devices in order to pull out my old IUD device was completely priceless.  Admittedly, I was a little sheepish because no woman ever wants to see a pair of scissors going up her “Hoo Haa” as I call it.  I shudder to think how a male would feel with a pair of scissors going up his private parts.  However, I believe its common knowledge that women have an uncanny ability to handle intense amounts of pain with giving birth and all.

As my doctor pulled out this little device with the scissors she then proceeded to show me this little T-shaped device that has quite literally been saving my life sexually and physically for the last five years.  I didn’t think I could fall in love with such an inanimate object, but that day I was proven wrong.

She then took out the new device and informed me she would be inserting the new one.  This is normally quite an uncomfortable procedure as I’m told by those able-bodied, but in my case my blood pressure just started rising, and I started sweating.  This is my way that I feel pain.  However, it was nothing compared to several days earlier when I had bladder Botox and my urologist ran into an issue where one of the needles that punctured the inside of my bladder to receive the Botox injection started profusely bleeding.  She then had to cauterize the inside of my bladder with a very hot needle.  Another story for another day.

The pain was nothing compared to that or what I had envisioned, and in less than 30 seconds my doc vivaciously announced I was all set to go.  She did indicate I might have bleeding for several days, but in less than 24 hours I could be up and romping around in bed with my husband if I so desired.

Before I could think about getting frisky with my husband I was still spread-eagled, half naked, and contorted on this little bed.  With the help of everyone in the room while laughing and commenting on my beautiful uterus they managed to pull me up, get me dressed, and back into my chair.

I don’t think I’ve ever had a medical appointment where we were all laughing, joking, and conversing.  More importantly, I left the appointment in as great a shape as one could expect from a medical procedure than I had come in.

While I do undergo quite a lot of medical procedures throughout the year, which I do not write about, I highlight this one because with everything I have to go through on a daily basis you simply have to find the humor in the small things, especially the dark humor.

I don’t know many people that can make a trip to the gynecologist fun, but my team and I managed to do so, which has still kept me smiling a week later.  I can’t go jumping off waterfalls as I use to, which certainly made me smile and giggle, but if I’m going to have someone poke and prod inside my nether regions I’m certainly going to get a laugh out of it if I can!

The question is — what made you giggle in the last week?  Think about it and share it with me.  Life is an endless battle of challenges, we can’t ready always change our circumstances, but we most certainly can change the way we look at them.

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

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!

 

 

 

 

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/

 

 

To Be or Not To Be an “INSPIRATION PORN STAR?”

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“Inspiration Porn” is a term I have been reading about lately in many articles across different forums.  At first I was confused as to what was behind the meaning, but from my understanding, it’s when people who don’t know you see you in a wheelchair, approach you, and tell you what an inspiration you are.  Mind you they don’t have any back story on who you may be except that they see a person in a wheelchair or with a disability.  They then proceed to tell you what an inspiration you and I assume it is meant for simply being in a wheelchair.

There appears to be much controversy over this as many folks, whom I have spoken with, are not necessarily offended, but frustrated at the fact that able-bodied people see them as an inspiration for just having a disability.  You may be a lazy person with no ambition, but simply because you are in a wheelchair you are an inspiration to them.  I can certainly understand why this would aggravate many because people with disabilities since they just want to be seen as “normal” people who are complemented on being inspiration for what they do; not just for the fact that they are in a wheelchair.

However, I have a slightly different outlook and perhaps my dark sense of humor might contribute to this, but when someone calls me an inspiration even when I am just sitting quietly in a corner I always seem to find myself chuckling in amusement.  Also, I love to be different and my wheelchair is just one part of my life that sets me apart from many others.

The way I look at it is this – Continue reading

“THE RIGHT CIRCUMSTANCES”

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Aaron and I just got back from our honeymoon the other week where we drove several hours from Raleigh, North Carolina to Asheville, North Carolina. I had been wanting to see Asheville for the past 15 years and Aaron had attended University in that neck of the woods. People fly all over the world to visit this lush and scenic city, and I can’t believe I had lived in Raleigh for the last several years and not made a trip over there. We decided to forgo an international honeymoon to save on plane tickets in order to have a five-star honeymoon in Asheville.

We embarked on so many adventures, stayed in extravagant resort hotels, explored several of the hundreds of breweries, went on a waterfall adventure, partook in some hand glassblowing, joined in on the Friday night drum circles in the heart of downtown Ashville, and so much more. At the end of this blog you’ll see a myriad of fun photos from our adventures.

While we were having a lazy morning in bed one day a topic of conversation arose with respect to all of the circumstances in life that had to play out accordingly in order for us to be where we are today. There are folks in life where the puzzle pieces just seem to fall where they may and life works out smoothly. For most of us, this is not really the case. We have to work hard, throw in some blood sweat and tears, push through challenging hardships, and go through our personal journeys in order to achieve where we are in life today.

This is no exception for the two of us. I cannot speak for Aaron, but as for myself, there are so many factors being paralyzed I had to overcome to have that lazy morning with my husband on the most romantic honeymoon. Continue reading