Wedding Bells & Wheelchairs

My fiancé and I have finally set a date for our wedding — Saturday, May 18!  We got engaged back in August of 2017 and simply cannot wait to be married to one other.

I had envisioned getting married in a bikini with a giant barbecue on the beach and having a big soirée with family and friends while we frolicked about in the water.  Clearly, I’ve had to adjust my expectations as I’m not quite sure a bikini would be very flattering these days in a wheelchair nor would getting stuck in the sand with my wheels 😉

I’ve been thinking critically over the last several months on what I want to do for my special day.  I came to the conclusion that I want my fiancé.  Plain and simple.  I just want to be married to this man who loves me dearly, and I him!  Frankly, I wouldn’t say I don’t care about the wedding, but I’ve never been the type of girl to throw a giant wedding with all the bells and whistles.  Honestly, I rather save up all that money spent on a wedding for a wonderful honeymoon and adventures traveling with my main squeeze.

Read the rest on Push living Magazine: https://pushliving.com/wedding-bells-wheelchairs/?mc_cid=984e329e09&mc_eid=ab8a053cfc

 

HOW EXPENSIVE IS IT TO BE PARALYZED ANYWAY?

 

Talk about a loaded question!  By the time you’re done reading this article you will likely understand why I choose not to go get manicures or pedicures, spend money on wild vacations, go shopping often, and have tremendous respect for all fellow disabled folks trying to make it from day-to-day.

As if breaking your neck were not insult enough having to deal with being paralyzed from the chest down, having bowel and bladder issues, pressure sores, respiratory infections, caregivers full-time, etc.; the financial burdens associated with any type of disability really can be more debilitating than the disability itself!

When one is newly injured there are pretty much two ways you can go with respect to finances. 

The first is if a family does not have the financial resources to support the endless costs of being paralyzed.  If this is the case then you have to rely on government support ranging from Social Security Disability to Medicaid/Medicare, and various other government assistance programs.

The second option for newly injured patients is if they do have the financial resources to support themselves whether that be comfortably or just barely able to get by.  Fortunately, I have a family that has been able to help support me and provide what I needed while I was getting back on my feet and working, but not without having to budget everything down to the dollar on a daily basis.

Read the rest on Push Living Magazine: https://pushliving.com/how-expensive-is-it-to-be-paralyzed/

 

A Change in Life Perspective – My Personal Metamorphosis

 

First off, Happy New Year to you! 

 

Coming into the New Year I thought it only fitting to discuss the concept of perspective.  I was asked by a fellow reader if I could touch upon the topic of how my mental perspective has changed over the last eight years since breaking my neck as opposed to just how my physical life has changed with being paralyzed.  I will start off by saying my life perspective has changed drastically and I can’t be entirely sure if this is due to my accident or the fact that I’m also getting older.  I suspect it is probably a little bit of both.

In general a change in perspective in life is quite gradual in my opinion, takes many years, and is usually preceded by many hardships along the way, which affect one’s opinions on many topics.  When I broke my neck my world got turned upside down, which violently shifted my perspective on a lot of things in life very quickly, but more from a physical standpoint.  I was so engulfed in trying to figure out how to live a life with a body 80% paralyzed that I didn’t have the presence of mind to think about how my mental health was going to change.

For the most part my perspective change has been for the positive, but there have definitely been some dark changes that I would be amiss not to dive into as well in light of always being open with my writing, and my life even though I run the risk of exposing myself further 😉

The old saying “we only have one life to live,” no matter how cliché it may be, means more to me now than it did prior to my accident merely due to the fact that I suffered a life altering event.  I see so many folks who live simple (and I don’t mean that in a bad way), but happy lives, and go about their business not realizing how easily life can change on a dime.  While it is easy to say that we will change our lives when something drastic happens – it is a lot easier said than done to take actionable steps each day to change.  However, these small steps are not only key, but they can take very long time to see the effects of as they require determination, and will over a long period of time. Continue reading

LESSONS LEARNED FROM MY “LIFE BREAK” IN MIAMI

For the past two years I’ve taken several weeks a year to head down to Miami from my home in Raleigh, North Carolina for a “Life Break.”  I used to live in Miami for about 12 years and am fortunate enough to have a place to stay when I go down there.  I was feeling overwhelmed and lost in life, so spending several weeks in the sunshine was a very welcome break indeed.  I just returned from Miami several days ago with something more valuable than a few weeks of fun in the sun so to speak.

I went down to Miami with the intention of spending time with my fiancé swimming, getting together with some of my great friends, frolicking about on different adventures, reading, and just relaxing.  However, what I returned to Raleigh with was something much more powerful than just recharging my batteries.

I’ve been trying to figure out for some time why I have not quite felt at home in Raleigh since I moved here three years ago.  I have met some wonderful people who I get to see on the weekends with my fiancé, but I am lacking something extremely essential in my life.  Community.  I usually go about my day waking up, exercising, working, and dealing with whatever caregiver headaches pop up my way as I just can’t seem to keep a steady one. The best part of my day is when my honey comes home to me at the end of the day.  On the weekends we usually pop around town a bit to meet up with some friends if they are around, but my happy place is truly in the water or near the water.

I’ve always underestimated the concept of community until recently.  My whole life I’ve kind of been a loner you could say popping around the world, moving from home to home, and while I have good friends around the world I’ve never really stayed put anywhere long enough to build a real sense of community except for in Miami.  I’m not sure if it is being paralyzed or the fact that I am in my mid-30s, but I want to build a life in an environment that makes me happy with people around me who have known me for a very long time.  I’m not going to have children, so Aaron and I need to find where we fit in this world to build a strong community of people around us.  I don’t think Raleigh fits the bill in the long run for me particularly because as I get older the nerve pain I suffer from gets very severe during the cold winter months.  So, I am pondering the idea of moving back down to Miami in the next few years. Continue reading

Taking a Life Time-Out

Hi Folks,

I will be taking a time-out from life over the next month and I will be back in November.  I am headed down to Miami for a little bit of rest and relaxation.  I’m sure I will have many adventures ahead of me, which I will share with you all upon my return.

2018 has thus far been a wild and busy year for me and I just need a little bit of personal time for reflection, relaxation, meditation, and to assess next steps in my life.  Look forward to sharing my endeavors with you when I returned back in the next month 🙂

I’ll be updating my Facebook page with some of my adventures!

Stay Tuned …

 

 

 

 

 

INTERNAL HURRICANES

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(Before I get started on this heavy blog… I will preface by saying I’m posting photos that are not even a little bit related to what I will be writing about below. However, these photos represent moments of pure Happiness in my life! … And, let’s face it, we all need to keep that happy place in the forefront of our minds at all times.)

Over the course of the past month I’ve pretty much been on a hiatus from life, work, writing, posting blogs, going out, and enjoying life.  For the first time in my spinal cord injury career I developed a severe case of Bronchitis.  As I’ve previously mentioned time and time again being physically paralyzed can pale in comparison to the secondary complications we face with spinal cord injury.  For example, pressure sores, respiratory infections, sepsis, urinary tract infections, etc. are just a few of the major culprits that can take many of us out for the count for weeks, and months on end.

Generally folks with spinal cord injury suffer from just a few secondary complications on a regular basis.  I have always been Princess and the Pee when it comes to severe skin issues with pressure sores and osteoporosis.  Knock on wood I have not suffered from many infections, respiratory issues, urinary tract infections, etc.  However, this past month I was surrounded by a myriad of sick individuals in my household, which finally did me in.  I started with a small cold that developed into bronchitis.

I have many spinal cord injury friends who suffer from upper respiratory infections all the time and I could always sympathize with what they were going through, but I could not empathize because I did not know what it felt like.  I do now!  The challenge with spinal cord injury, especially when you are a quadriplegic with paralyzed abdominal muscles and use your diaphragm to breathe, is that coughing, breathing, blowing your nose, etc. are tremendously challenging.  You don’t have the core strength to bring up all of that nasty phlegm that gets stuck inside your lungs.

So, when you’re stuck with mountains of dark green phlegm in your lungs you literally have to have someone push on your stomach, lean forward, and hack up what feels like all of your internal organs coming out at the same time.  It’s quite a process and extremely exhausting to cough to get the phlegm up & out.  There are, of course, machines that can help with this, but they can come at a pretty hefty price.

“Being an Aunt is the Best”

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/

Life’s Sacrifices & Choices with Spinal Cord Injury

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When we are growing up we are faced with all kinds of choices a consequences and as children that we are blissfully unaware of.  Do we want a cookie or a doughnut?  If we finish our vegetables then we get dessert; if we go to bed early than mommy will read us a bedtime story, etc.  At a young age we don’t really associate making a choice with sacrificing one thing for another either.  It’s only as we develop into young adults that many of us come to the realization that everything in life is a choice, sacrifice, or compromise.

Choices and compromises become exceedingly more complicated as we grow into adults.  If we want a family, then we have to save to have a baby; we can’t go on that family vacation because we are trying to save money to buy a house; if we keep eating donuts every day then we run the risk of becoming obese; the list goes on.

I was thinking about sacrifices and choices the other day as it relates to spinal cord injury, and more specifically, the compromises I have had to make and continue to make as a C6 quadriplegic.  As I was pondering some of these choices lately I was surprised at how many things I have had and will have to give up in my life.  I was having a challenging day, so of course this was a glass half empty point of view, but after waking up the next morning feeling more like myself I made a list of the things that I have gained, and given up over the last 8 years since my accident in 2010.

Living with spinal cord injury presents such a unique set of challenges that many folks, unless you are the one injured or know someone who is, may not think of on a daily basis.  I often play this game with myself because while I know that I am faced with seemingly insurmountable challenges at times, there is always someone who is dealing with A LOT more than I am.  This is not to say that we should go around comparing ourselves to other people, but I do find pausing on certain days to take stock of what you have in your life is a quality many of us lack.  This age-old saying may seem outdated and redundant, but I personally find that it rings true when the proverbial “ship hits the fan” in people’s lives … “You don’t know what you have, until you’ve lost it.”

Here are a few of my choices over the years: Continue reading

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

Caregiver Neglect and Abuse – The Legal Side – My Recent Story

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Over the years I have spoken with dozens and dozens of fellow quadriplegics who seem to share in the story of having their caregivers leave without notice, emotionally abuse them, physically abuse them, and so many other horrifying tales. If you know me or have read some of my blog posts you will know that I, too, have had more than my fair share of horrifying incidents with caregivers. This blog is not to recount what has happened to me, but rather shed some light on interesting facts I have discovered over the last month due to a recent caregiver leaving me with no notice, no phone call, no text, etc. I have learned some useful tidbits of information and also picked up on some tips & tricks for the hiring of future caregivers, which I hope will help some.

Six weeks ago I was on the hunt for a new live-in caregiver several days a week and after interviewing several my entire household agreed they liked this one particular lady. I don’t use caregiving agencies because they are too expensive and cannot cover the hours I generally need, so I usually look to care.com and Craigslist as so many other quads in my situation do as well.

I think my caregiver radar is broken, so I like to have other people’s opinions to help me choose my caregivers these days. She did really well, was pleasant, a fast learner, and told me repeatedly how much she loved working with me. I was thrilled as I thought perhaps, this time, just maybe we would find one who would stick around for a while.

Anyway, things were going swimmingly, in my opinion, and two weeks ago after one month of employment she simply did not show up the night she was supposed to come into work. She left all of her belongings at my house and we were all completely dumbfounded. I called her multiple times, texted her, but to no avail. Naturally, my first thought was that she was in some sort of accident and was in the hospital. I was worried. Normally, when caregivers leave they take their stuff (secretly I might add) and just don’t come back. When this happens I usually just let it go because I am in such a rush to find someone new that I don’t have time or energy to follow up.

This time seemed different. Continue reading