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!

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, and glass cutting you from the inside out. It is different for every person.

Chronic pain usually does not resolve itself on its own 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.

As for me, I suffer from 4 serious chronic pains at the same time.  On any given day I am psychologically equipped to handle 2-3 of these pains at the same time when they reach critical levels, but when I have all 4 pains at the same time I’m generally out for the count for the rest of the day.

These pains include:

  1. Neuropathic Pain – from the chest down and in my arms – feels like burning pins and needles day and night. I usually wake up with a 7/10 pain level in the morning and it proceeds to increase to 9/10 at nighttime on a regular basis.

  1. Hypersensitivity – on my hands and forearms – feels like little shards of glass cutting me at all times. I have internal neuropathic pain on my hands, but also suffer from peripheral nerve damage on my hands called allodynia.  What this means is I have partial feeling on my hands, which may sound great, but just the slightest touch of my hands combined with the nerve pain inside creates  hypersensitivity on my skin, which gets activated to create an excruciating feeling.

I combat this by wearing these little winter stretchy gloves of my hands to produce a compression type therapy.  Many folks who have hypersensitivity from scars or burns find that wearing tight restrictive clothing such as compression arm sleeves, tight shirts, etc. helps to reduce the external stimuli on the skin.

  1. Neck Pain – as a result of multiple surgeries I have scar tissue and nerve 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. After my second spinal surgery on the ventral (backside) of my neck I was left with further nerve damage from C5 to C7.  This results in an electrifying type feeling that goes down my neck over my right shoulder, and down my right arm.

  1. Shoulder Pain – over the years I have developed an overuse injury resulting in a combination of nerve damage, musculoskeletal damage, myofascial pain, and soft tissue damage on the right side of my shoulder under the scapular area. It feels like someone is twisting a potato peeler back-and-forth under my shoulder blade every day.

Solutions to Chronic Pain

After spending some time thinking about what I wrote above and all the different type of pains I endure on a daily basis I must admit I also wondered how I make it through each day sometimes.

Sadly, there is no miracle medication to “cure” chronic pain because we can’t actually see chronic pain.  If we cannot see chronic pain and define it specifically how are scientists supposed to come up with a viable therapy?

Chronic pain is a signal from the brain and the brain is caught in a “Groundhog Day” type loop.  The brain just keeps replaying the same pain feelings over and over and over again.

There are, fortunately, a multitude of different therapies you can try to lessen the pain in order to live your life.  These are not magic bullet solutions, but after speaking with countless fellow spinal cord injury folks and others who suffer from other types of chronic pain; a combination of some of these therapies usually help lessen the worst of the symptoms.

  1. Acupuncture
  2. Massage
  3. Marijuana
  4. Meditation
  5. CBD oil & CBD products
  6. Hypnosis
  7. Physical therapy
  8. Sex
  9. Distraction
  10. Cold laser therapy
  1. Stretching
  2. Compression therapy
  3. Exercise

I’m sure there are countless more out there, but these are a few employed by many.  I am a personal believer in meditation, sex, massage, physical therapy, acupuncture, distraction, and exercise.  I would be interested in trying marijuana with a very low THC and high CBD ratio, but it’s still not legal in my state.  So, I’ll have to wait on that one.  I have recently started taking a high grade CBD oil sublingually and CBD cream topically for the back my neck.  The jury is still out, but I’m hopeful.

There are also those who turn to opioids.  The challenge with opioids is that they do not work on the same pain receptors as chronic pain.  Opioids naturally help lessen the pain in the acute phase of an injury, but over time they just dull the senses, become addictive, and usually end up ruining many people’s lives because they just don’t pack as much punch as they did in the beginning.  However, many people hold onto the hope that they will work all the while becoming highly addicted.

The opioid epidemic in this country has gotten out of control because chronic pain is ruining so many people’s lives.  To live with chronic pain day in and day out can take a massive toll on one’s mental health.  It can be hard to get out of bed (I can personally attest to this), find joy in the simplest of things, and simply find anything positive to be happy about.

The thing about chronic pain is that it is in the brain and that means that we do have an element of control over how we frame our perspective on life.  If we truly believe pain is going to envelop your entire being or ruin every day, then it probably will.

If we know we have to live with this little monster inside of us and we don’t have an immediate solution to kick her out of our brain, then we can change our internal conversation about the relationship we have with pain.

The Little Lady Within

Okay, now this may sound silly, but I’ve actually created an alternate identity for my chronic nerve pain, which engulfs nearly 80% of my body.  I haven’t actually given her a name yet, but I am certainly open to suggestions 🙂

Several years back the pain was so intense after multiple surgeries living in China that I could barely make a sentence.  I could not focus.  I worked with a hypnotherapist who helped me detach myself from my body in our sessions.  In my mind I would be laying on the beach soaking up the rays on the sand and my pain would be floating above me like a separate entity.

Over time, and I’m still not brilliant at it, I came to love the idea of having two separate identities.  There is me and there’s my pain.  When she starts to throw a tantrum and turn up the volume of pain in my body, I graciously give her the day.  I literally stop what I’m doing, get in bed, put a heating pad on, and watch a movie.  I spent years fighting her and the more I fought her – the more she won.

She currently seems content with our custody arrangement.  On a daily basis she usually allows me 8 hours during the day to get on with what I need to accomplish and around 4 PM every day she knocks on my door to take my body back.  On the weekends she even gives me more hours to go play at night if I feed her a vodka or two 😉

My life is generally structured around pain.  I know that sounds sad, but we all have to make compromises in life for an assortment of reasons, and this is just one I have to make.  I wake up at 5:30 AM each morning, promptly get to work or exercise or doctors’ appointments, and then at around 3 PM or 4 PM I head to bed for electrical stimulation, stretching or shower.  I’m usually done with my day around 6 PM and this is the time where she really gets to shine.  She gets to lounge around with my body while I check out for the day.

We all have our different coping techniques for chronic pain and these are some of mine.  I don’t wish chronic pain on my worst enemy, but if you do live with it, you are not alone by a long shot.  It is manageable, but it takes work, determination, intention, and sometimes sheer grit.

Throughout human history people have endured the harshest of conditions and are still here.  We are more resilient as a species than you may give yourself as an individual.  I find it breathtaking and comforting when I read history books of how so many people from all walks of life were able to continue to push through the harshest of circumstances.

 

 

 

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/

 

 

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

Home Exercise Program for people with Spinal Cord Injury (SCI)

Since I was 13 years old exercise, working out, and sports have always been a centerpiece in my life.  Whether I was having a bad day, stressed out, simply wanted to stay in shape to fit in a bikini or just generally tried to be healthy I was always able to exercise.

When I was exercising I would enter this Zen like state where I was in my own space and no one else could bother me.  After my accident I simply didn’t know how I was going to continue to exercise as a C6 quadriplegic, paralyzed from the chest down with some arm movement, and no hand function.

THE CHALLENGE I WAS PRESENTED WITH WAS:

  1. How could I create a workout routine at home that would require minimal help from caregivers other than helping to set me up?
  2. What kind of equipment could I use that was not outrageously expensive so I could share it with fellow quadriplegics?
  3. How could I create a program that was sustainable in the long run just like going to the gym or working out to a DVD at home when you’re able-bodied?

Over the years I’ve perfected my own exercise routine based on my needs and what I can physically do.  Many of the suggestions and equipment I mention below apply to all spinal cord injury folks, but more specifically to quadriplegics who have limited use of their hands and arms.  Exercise is even more important for those of us who have very limited mobility, but it is possible, doable, and I can prove it

Read the rest on Push Living Magazine:  https://pushliving.com/spinal-cord-injury-exercise-program/

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/

 

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

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