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/

 

 

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

“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”

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

A FAIRY TALE WEEKEND OF WEDDING CELEBRATIONS

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When I moved from China to Raleigh back in 2015 I could not have imagined ever getting married, let alone getting married to my “Partner in Crime” and best friend.  I married Aaron Watkins on Saturday, May 18 and it was one of the happiest days of my life!

I would be remiss not to clearly thank my family and Aaron’s family for everything they did to make this wedding possible.  My parents have been there every step of the way for me, unwavering in support and love, which is why I truly believe I am where I am today.  Sometimes they say it takes a village to raise a baby, but in my case it took a clan of Ingersoll’s to raise me after the accident.

I was so certain when I was first injured 9 years ago that I would have a fulfilling life, but a life without love and a partner.  I had come to terms with this and made peace in my mind.  What I did not realize is how much love can literally transform one’s outlook on life.  I used only live from one challenge to another – now I look forward to future adventures, and when those challenges do arise I know will have someone by my side every step of the way.

Originally we wanted to have a very small ceremony with immediate family only, but my father thankfully convinced me this was an occasion we would not want to forget.  He was right in more ways than one.

We had family and friends from Raleigh, around the United States, London, Germany, France, and China join us for four days of round-the-clock festivities.  It was a world wind weekend and I prepared for months to make sure everything went smoothly – and it was over so quickly.  Everyone always told me to make sure to take a moment and enjoy everything around you when you’re getting married, which is exactly what I did.  I neurotically planned everything down to a T and the week before the wedding I was relaxed, present, and able to connect with people who I had not seen in over 10 years.

I didn’t even realize how much love Aaron and I have in our life and support around the globe.  Living life is about people, relationships, and quality time in my opinion.  I know at the end of my life I will not look back at how hard I worked, but rather the people who have influenced my life, and I theirs.

While I meticulously planned the wedding there are just certain factors you cannot control.  I ended up getting severe bronchitis three weeks prior to the wedding.  I did everything in my power and by some universal grace I stopped coughing four days before the wedding.

Unfortunately, I also developed a pressure sore that Thursday before the wedding.  I was very careful, leaned back in my chair a lot to shift the weight off my bum, and I don’t know why or how, but I got really really lucky!

Now, onto the Wedding Celebration Festivities:

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/

“BEING HAPPY vs. BEING HAPPY ENOUGH”

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I was lying awake last night battling my arch nemesis “Ms. Insomnia” and she engaged me in a fight of a lifetime.  I couldn’t move, but my mind was running through a jungle fighting for my life as she tried to attack every fiber of my positivity.  She ran me up a tree at an alarmingly pace and as I clung to the tree branches for dear life, and tried not to let her get the best of me, she managed to claw me back down to the ground.  While I was being mauled by this insidious monster I laid there completely paralyzed unable to move as she had had her way with me.  By the time she had had her fill she left me battled and bruised.  As I was lying on my back gasping to breathe I decided to give in and just sit with my swirling thoughts.

I was trapped in my bed wide awake, angry, and frustrated that she had gotten the best of me as she so often does.  Many folks with spinal cord injury share the same fate night after night as I do whether that be from stress, anxiety, intense nerve pain, involuntary muscle spasms, etc.  I couldn’t help but think about the concept of happiness in life as I laid awake for two hours struggling to desperately get myself back to sleep.

I kept pondering what is this idea of happiness anyway?  I feel like it’s always wanting more, which makes me lose perspective and mentally spiral out of control on a regular basis.  This idea of happiness coupled with creating hopes, goals, and dreams — when not fulfilled — can end up leading to endless suffering for many folks from all walks of life.

The question I kept asking myself is “Am I happy?”  Continue reading

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