INTERNAL HURRICANES

2

(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

2

 

 

 

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

2

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

ASSISTED SUICIDE

4

First … A happy picture to make you smile before diving into the heavy stuff!


Assisted Suicide – No doubt a highly controversial topic in our society today, especially if one is religious! I am going to approach this topic from my personal perspective. I realize this blog may spark some intense feelings just like religion, sex or politics may, but I think it is a topic that needs to be addressed from an ethical, moral, personal, and societal standpoint. I am going to leave the religious argument out of this blog for the time being as I am not personally religious, but spiritual in some sort of sense.

I would be remiss not to start out by talking a little bit about my feelings regarding death as a whole. Before my accident I was terrified of death whether that be because I was in my young 20’s, was super healthy, did not live in pain, etc. The only certain thing in life is that we are all going to die, but in my younger years I just could not bring myself to think about it.

After my accident I was actually killed by several medical professionals and brought back to life as so many other spinal cord injury patients can relate to. Over the course of the last 8 years or so I have not only become comfortable with the idea of death, but actually find a strange comfort in it. This is not meant to sound like a doom and gloom statement, but it gives me peace. In my particular situation and the myriad of medical nightmares I have endured both physically and mentally over the years I have personally been in situations where I wanted to die. Continue reading

Moving Mountains Paralyzed: An Insurance Battle to Remember!

When I think of Moving Mountains Paralyzed Insurance Companies the analogy of a Goat herder comes to mind. The Goatherder will watch out for its flock as long as it produces enough fur for the season for the goat herder to line his financial pockets. The moment the goat gets out of line or stops growing fur, the herder will slaughter the goat, and eat it for dinner.

Similarly to insurance companies … As long as you pay your premium and don’t step out of line an insurance company will offer you basic protection. However, if you start creating a commotion, appealing everything, and asking for more — insurance companies will find some way to slap you with financial bills that seem unimaginable.
Since my accident 7 ½ years ago I’ve been a goat that has been slaughtered by insurance companies and I have also been a goat that has managed to break free. Navigating the waters of insurance companies to get what you need, especially when you are paralyzed, requires voracious tenacity, extreme dedication, a lot of hard work, patience, and knowledge of how to work within grey areas.

Read the rest on Push living magazine at:

https://pushliving.com/moving-mountains-paralyzed-quirky-quad-guide-winning-w-insurance/

SEX & MEDITATION

3

I will preface this blog by saying for family and friends who do not want to know too much about my intimate sexual life you may want to skip the second half of this blog 😉

However, considering my blog is about Sex, sass and Spinal Cord Injury Adventures … I would be remiss not stay true to topic!

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. Boy was I wrong on so many accounts!

Many of us suffer from something called Neuropathic Pain. Essentially, it is nerve pain that manifests itself in different ways throughout the body 24/7. It’s almost like a cruel joke to be paralyzed and feel pain from the inside out. Regardless, this pain can result in feelings of pins and needles, burning fire, glass cutting you from the inside out, etc. It is different for every person.

Regardless, this chronic pain never goes away and can affect our daily lives with respect to productivity, quality of life, focus, and so much more. I find being paralyzed quite easy at this point in my SCI career, but you never quite get used to the chronic pain.

Personally, I suffer from 4 serious chronic pains at the same time, which can completely throw me off my game on certain days.

  1. Neuropathic Pain from the chest down and in my arms – feels like burning pins and needles day and night
  2. Hypersensitivity on my hands and forearms – feels like little shards of glass cutting me at all times
  3. Neck Pain – from multiple surgeries I have scar tissue damage that prevents me from sitting up in my chair too long, and feels like someone is slowly cutting me with a butter knife on the back of my neck
  4. Shoulder Pain – I suppose due to overuse it is a combination of nerve damage, musculoskeletal damage, myofascial pain, and soft tissue damage

Since my accident 7 ½ years ago I have always been on the mission to reduce my pain as opposed to finding a cure with respect to stem cell therapy for walking. I have tried so many techniques, of which two I find to be the most successful. However, the pain is always with me no matter what I do – although pain is just a signal from the brain, so I am convinced that if I keep trying I will be able to reduce it greatly on a permanent level one day!

I have tried:

  1. Opioids – definitely not recommended as opioids just make you drown out life and they don’t actually work on the right receptors in the brain for nerve pain
  2. Acupuncture
  3. Electrical Stimulation Acupuncture
  4. Neural Muscular Massage
  5. Meditation/Hypnosis
  6. Physical Therapy
  7. Lithium Protocol – this one nearly killed me as it can be very dangerous
  8. Sex
  9. Distraction
  10. Cold Laser Therapy

I’m sure there are few more I am forgetting, but I’m constantly trying to find new ways to reduce pain. The two most successful methods I’ve found in my life are Meditation/Hypnosis and Sex. I will dive into these two a little bit further.

 

MEDITATION / HYPNOSIS

Considering pain is just a signal from the brain hypnosis and meditation can be very effective, but only if you practice regularly, and are disciplined in your efforts.

I worked with a hypnosis instructor who helped me for over a year creating guided visualizations for me to listen to at 30 minute increments. Meditation is more challenging for me because when I sit quietly all of the feelings of pain are in the forefront of my mind. With hypnosis I find with gentle music in the background and guided instructions I use my mind to enter a world I created to reduce pain. It is kind of like a special room where enter through a red door and inside that room is a beautiful lake and ocean with clouds, beaches, and floaty toys.  I’ve taught myself to look down at my body and leave my pain floating above. I know it sounds peculiar, but with years of practice it really helps reduce the pain on the days where the pain just seems unbearable.

Admittedly, I should practice every day, which I don’t do religiously anymore, but it is one of my 2018 resolutions to continue to rigorously get back into it.

I go into a dark closet, tilt my chair back, and listen to the recording. The burning feeling of pins and needles changes to a cool and relaxing feeling. It is hard to describe unless you practice this on your own, and it may be hard to believe that this actually works.

In the beginning I could barely sit still for five minutes, but that’s how you have to start. Try meditation or hypnosis for one minute, then work up to two, then three, etc. There are so many recordings online that you can download for free, and you have to find a voice that is soothing to you, which can relax you.

 

SEXUAL INTERCOURSE

The second most effective technique for reducing my pain, if you can believe it, is
SEX.  Sex is a natural pain reliever — Sex causes increased production of oxytocin, which is often referred to as the “love hormone.” Before orgasm, oxytocin, released from the brain, surges and is accompanied by the release of endorphins, our natural pain-killing hormones.

When you are paralyzed from the chest down the feeling of sex is quite different than what used to be … It is not “Normal” in the sense of the way things feel. While I cannot orgasm in the traditional sense I still have my own type of feeling from sexual intercourse. Continue reading

How I Vacation as a C6 Quadriplegic

Check out my new column on Push Living Magazine:  http://pushliving.com/how-i-vacation-as-a-c6-quadriplegic/

 

… Taking a vacation as an able-bodied person takes planning, but as a quadriplegic, well, it is way more complicated! …

I wasn’t quite sure where to start. In the past I would just find a cheap plane ticket, a cheap hotel, pack a bag and be on my way. Clearly life is not so easy anymore with respect to planning after you break your neck. There are so many things to consider, such as:

  • Who is going to take care of you when you’re down there
  • How accessible are the rooms? Can you get in the bathroom? Is the bed too high
  • Is the city handicap accessible
  • How on earth are you going to fit so many supplies in your suitcase for emergency
  • How am I going to get on a plane or fit everything in the car?

http://pushliving.com/how-i-vacation-as-a-c6-quadriplegic/

 

My Life Long Science Experiment

Check out my new column  on Push Living Magazine at: http://pushliving.com/my-lifelong-science-experiment/

I am often asked when did I get to where I am with respect to acceptance of the accident or how do I constantly manage to make light of challenging situations with dark humor even when things are constantly thrown my way as anyone who is disabled can relate to?

Well, in short, I’m most definitely crazy, but above all I’m a CONSTANT SCIENTIST in my own life … Testing my limits and seeing how far life will take me.

When I think about everything that I have been through I think it is all worth it if I can help even just one person on this earth with advice, humor or whatever they may need.  Oftentimes I end up experimenting on myself for other people. I’ve tried countless measures to improve my life in so many ways and here are just a few examples to demonstrate how I push myself on a daily basis:

Read the Rest … http://pushliving.com/my-lifelong-science-experiment/

🙂