“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

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

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

ROMANCE RE-DEFINED

Aaron and I are getting married next Saturday, May 18.  We’ve invited 70 of our close friends and family.  Originally we started with only 30 guests, but somehow we’ve ended up with 70 guests 🙂 It’s going to be such a magical day as there are so many family friends I have not seen in over a decade.  We have a weekend full of events to celebrate. We are very excited and scrambling to finalize last-minute details.

Unfortunately, I’ve developed bronchitis at the most inopportune time and have been battling it for the last several weeks.  I have one week to go before the wedding and I am doing everything in my power to get well quickly.

It’s been a challenging several weeks as bronchitis for quadriplegics can be immensely difficult since we do not have abdominal muscles to help us cough up that nasty phlegm associated with bronchitis.  It’s not a pretty sight!  However, dealing with any kind of illness as a quadriplegic requires help from caregivers, family members, and loved ones.  I’ve had a team of people helping me over the last several weeks for which I am extremely grateful.

I have locked myself down in my house for the last 3 weeks and have had many hours to rest, read, and recuperate.  I came across this article written by the New Yorker on the topic of “What Romance really means after 10 years of Marriage.”  The basic premise of the article addressed how the definition of a romance and sexiness changes after a decade of marriage.  This really resonated with me because from the perspective of dating a person with a disability I find that Aaron and I have transformed our definition of romance in just a few short years, which I suspect takes many couples a decade to achieve.

Let me explain. Continue reading

The “Off Limit” Social Topic

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The other week I was watching my fiancé wake up in the morning to get ready for a trip he was preparing to embark on.  As I watched him bright and early in the morning I thought how seamlessly he could get ready as compared to myself.  When he felt the need to go to the bathroom, he simply went; when he wanted to brush his teeth he just grabbed a toothbrush and started brushing; when he was ready to put his clothes on he picked up both his legs, put them in his pants, and zipped up his fly.  These may seem like trivial things, but I was watching in complete amazement because these are things that I need help with on a daily basis, and will continue to need help with for the rest of my life.

There is a topic, however, whether you are paralyzed or not, that is just kind of taboo to talk about in society.  Bowel and Bladder.  Going to the bathroom is such a natural function that we all go through every single day and many of us do not give it a second thought.  When you feel the need to pee you sit down on the toilet and go.  When you have to poop you sit down on the toilet, push, nature takes its course, and you’re done.  These are not things you generally want to think about as many couples who have been married for decades still close the door when they go to the bathroom.  I, on the other hand, need help with these functions all day long.

You see, when one sustains a spinal cord injury the nerves that control how you go to the bathroom are wrapped around the coccyx area of the spinal cord.  This means that no matter what level of spinal cord injury you sustain whether you are a quadriplegic or paraplegic, your bathroom functions will be impaired — No matter what!  However, there are some folks with spinal cord injury who do have some control, but if you are a quadriplegic like myself, it is likely that you have pretty minimal control of going to the bathroom on your own, feeling when you need to go to the bathroom, or are able to do it by yourself.

What does this actually mean? Continue reading

Wheelchair Air Travel – “Quad” Style

 

…If only air travel for a complete C6 quadriplegic paralyzed from the chest down were so easy!  Since my accident nearly 8 years ago I have flown a handful of times.  Most of my flying expeditions consisted of me moving across the world to China back in 2013, which involved flying an aircraft for over 15 hours at a time.  Back then flying seemed incredibly daunting, but I always had a village of the family to help me along the way.  I had never flown with just one other person before…

… I read many reviews on different airlines and I decided upon Delta Airlines.  I was looking at prices and I knew I wanted to fly economy because if I wanted to travel in the future saving money for business class would take away from money I could spend on adventures to wherever we would be flying to.  However, I decided to take baby steps.  I sprung for an extra $100-$200 and upgraded to Delta Comfort.  Delta Comfort Class is essentially Economy Plus.  This gives you a few extra inches of legroom, which I thought for our first mission would be appropriate considering that I needed the extra room for my knees because I am so tall. …

Read the rest on Push Living Magazine:

https://pushliving.com/wheelchair-air-travel-quad-style/

Cruise Ship Adventures & Wheelchairs – Lessons Learned

Several months ago my boyfriend and I were set to celebrate our two-year anniversary of being together. We wanted to take our first solo vacation somewhere tropical and most importantly we wanted to do it alone. Needless-to-say I was quite nervous at the prospect of having my partner take care of me with respect to all aspects of caregiving, and travel. He is such a phenomenal individual in that he has always been interested in making sure that he could take care of me by helping me dressed, showering me, taking care of my bathroom needs, and, most importantly, ferociously loving me! It took us quite a while to get to the point where I was comfortable showing a man those intimate details of my care, and all of the “not so sexy stuff” that comes along with dating a woman in a wheelchair.  The point is we finally got there over the last several years, so I thought it only natural to take the next step to see if we could really take our relationship to the next level, and travel alone together.

After countless hours of exploring our options, I decided that a cruise was probably our best bet. It was cost-efficient, I could take as many bags as I needed on the ship, and I could easily take both my wheelchairs. I live in Raleigh, North Carolina, so I knew I could drive 9 to 12 hours down to Florida in my van with all of my gear. One thing the two of us love to do is swim together, sit by the ocean, and go on adventures. I thought starting out with a seven day vacation down to the Western Caribbean would give us enough time to enjoy ourselves, but not too long in case things went sideways.

I posted a detailed account of our journey day by day on my personal blog if you are interested in every step of our journey. For the purposes of this article, I want to summarize some of the pros and cons of cruising as a handicap passenger.

Read the rest on Push Living Magazine: https://pushliving.com/cruise-ship-adventures-wheelchairs/

 

 

Long-Term Relationship Physical & Emotional Intimacy with Spinal Cord Injury

Who knew that my first serious long-term adult relationship would be after my spinal cord injury? I certainly did not! I was always the type of girl to have 1 foot in a relationship and 1 foot out in my 20’s. When I would break up with the guy I would usually move cities or countries. Truth be told after my accident I figured I had my shot at relationships and I would likely be single the rest of my life, which I was surprisingly okay with for many years. When I first started dating in a wheelchair I had an array of gentleman callers in order to explore my sexuality years after my accident. I’ve written about my dating adventures in multiple blogs, but I’ve never really touched on the subject of how my current boyfriend and I have grown to fall deeply, and madly in love.

It was not until this past year that I really started to understand what emotional intimacy meant and how one really has to work at it keep a relationship alive. In my opinion, emotional intimacy is the glue which holds a long-term relationship together. Even if you have a super strong connection initially, the more time you spend with someone and the better you get to know them, the deeper your connection can become — and emotional intimacy in a long-term relationship is so much different than emotional intimacy in a brand-new relationship.

In new relationships we can reflectively listen, spend quality time with our partner without distraction, and make thoughtful gestures to build closeness.

At the time I didn’t realize what this meant, but approaching relationships from a slightly different angle with spinal cord injury has made me appreciate what this means. When I first started dating my boyfriend I spent the first year actively keeping him out of every aspect of my spinal cord injured life with respect to caregiving. I wanted to take the time to get to know him as a person, and, more importantly, I truly believed that keeping the “paralyzed” part of our relationship was the best way for us to grow. Looking back, I am happy with the results, but I probably could’ve shared all of me sooner as opposed to just part of me. Continue reading

ROYAL CARIBBEAN CRUISE ADVENTURE (Part 3)

Continuing on with our Royal Caribbean Cruise Adventures …

Day 5 – Belize Mayan Ruins

5 AM on Thursday … As the alarm clock started ringing Aaron and I groggily looked over on each other debating whether we should go explore some Mayan ruins in Belize or take the day to sleep. Cruises can be exhausting if you are always on the hop with different shore excursions. However, you must keep in mind that this was my first real vacation in 8 years without any of my family or caregivers. So, while we might’ve squeezed a few too many adventures into our 7 days, Aaron popped out of bed and made quick work of getting me ready to go explore thousands of years of history!

We arrived in Belize City early that morning, but were anchored offshore. We were anchored at what is called a tendered port. Essentially, you have to take small little dinghies seating anywhere between 50 to 80 people from the cruise ship over to the port of Belize. These little tendered ports are not for the faint of heart, especially in a wheelchair, because with the rocking ocean and trying to lift my manual chair onto this little boat presented its own unique set of challenges. Fortunately, the weather was quite calm so we were able to physically leave the ship, but there are days when they will not allow a wheelchair to maneuver onto the small vessels.

Ligia, our concierge attendant on Royal Caribbean, escorted us to the tendered boat as we skipped all the lines 🙂 I was decked out in sneakers, sports cloths, my manual chair, and ready to get bounced around! It took us about 30 minutes of rocking around on this boat, but we made it to the dock. I’d been to Belize nearly 10 years ago and from what I had recalled, which turned out to be exactly correct, Belize City is no joke from a dangerous perspective. It is not a city you want to go roaming around in alone as a tourist … and certainly not with an expensive wheelchair! It has a very high crime rate, poor infrastructure due to a hurricane hitting the city years prior, and not a very friendly crowd. When we arrived at the docks there was a small little area for tourists and tour guides to meet up with one another, make haste of getting into a van, and getting the heck out of the city!

Since I hired a private accessible tour company who partners with local tour companies who claim to be handicap accessible, and who would be able to show us the Belize Zoo in addition to some Mayan Ruins – I was pretty excited! We did have quite a bit of bother trying to find our tour guide due to many miscommunications, but we did eventually find him.  We were running behind schedule though. I wasn’t quite sure how far away our excursions were, but we literally had to be back to the boat in five hours.

Our tour guide, Ricky from Roam Belize Tour Company, greeted us with a smile and proceeded to show us the way to our “accessible” handicap van. Well, there was a van, and there was a ramp that you had to take out of the van to attach to the rear of the vehicle to push me up. I would say it was accessible, but not particularly accessible friendly if you know what I mean 🙂 Once I was loaded into the back of the van I was looking for straps to lock in my wheelchair. Ricky informed us that there were no straps as they were a tour company that was just getting up and running with providing accessible tours to folks in wheelchairs. The way the van seats were laid out, unless I was a paraplegic and could transfer my own, was not going to work to transfer me onto an actual van seat because Aaron could not lift me up with a height of the van.

I did call the company to confirm and I filled out many forms saying that I was paralyzed from the chest down, and that needed to stay in my wheelchair, but being a foreign country things get lost in translation sometimes. No big deal we thought!

Continue reading

ROYAL CARIBBEAN CRUISE ADVENTURE (Part 2)

Continuing on with our Royal Caribbean Cruise Adventures …

We spent the first night, Sunday night, on the ship a little later than we planned dancing the night away. On Monday morning we docked in Key West, Florida for our first day’s adventure.

DAY 2 – Key West, Florida

We docked right in the center of the city of the island of Key West. For those of you not familiar with Key West, it is the coolest little funky island, and is the farthest South Island on the chain of the Florida Keys. It takes about 3 ½ hours to drive there on one road from Miami, Florida. It is filled with eclectic bars, unique restaurants with their own personalities, 1 million little shops with fabulous trinkets, and a group of folks who are so unbelievably laid-back. Most of the locals on Key West are the kind of people you just want to hang out with with the beer by the water, and hear their life adventures.

“The Port of Key West”

I’ve been to Key West many times before as I previously lived in Miami for about 10 years. On one of my adventures down to Key West with one of my great friends from college we ventured down to the island for something called Fantasy Fest. Fantasy Fest is kind of like a Mardi Gras down in the keys. Thousands of folks drive down, dress up in the most wonderfully outrageous costumes, walk the streets, and party the night away. When I was 21 we headed down to Key West, but we forgot to book a hotel. So, we took my sisters truck and decided we would find a parking lot, and sleep in the back cab.

I was unbelievably surprised at the copious amounts of folks strolling around in giant penis costumes, body paint, and a ridiculous amount of other fun filled costumes. Of course we got ourselves into all kinds of devious trouble, met cute boys, partied the night away, and by 3 AM in the morning we ventured back to a church parking lot where we paid $70 to park our car for the night. When we woke up in the morning we were sleeping in the back of the pickup truck with our little feet hanging out the back side. We woke up to some strange folks tickling our feet… I’m not kidding. It was disturbing and hilarious all at the same time.

Anyway, I had the opportunity to take my power chair off the ship as Key West is relatively accessible. There is this one fabulous restaurant I’d remembered from years prior called Blue Heaven that was wildly eclectic with the best pancakes I’ve ever eaten, and a laid-back atmosphere that made you want to just sit in a hammock with the Corona, and drink the day away. Unfortunately, we only had a few hours to dive into Key West, so I had to make a strict itinerary so we could see a few things before we headed back to the ship. We met one of Aaron’s long-term family friends who had retired in Key West for lunch at Blue Heaven. We laughed, drank, ate delicious food, and then strolled around the little eclectic streets of Key West for hours. Key West doesn’t have many hotels, but rather these old colonial Bed & Breakfasts, which are just precious historical gems I would recommend if you head down that way. Now, they are not particularly handicap accessible, but if you’ve a strong man who can carry you up the stairs … Go for it!

“This sign display had been up for the last 15 years… I had been dying to take a picture and pay someone to watch them shower for a while ;-)”

 

We ended the afternoon at a Tiki hut bar, my absolute favorite, right on the ocean with some reggae music watching the boats sail by, and enjoying the 80° weather while sipping on some lovely alcoholic beverages.

As the day ended we boarded our ship and we were met by our fabulous concierge, Ligia. Continue reading