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Planning a Life Around Pain

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“Understanding the challenges you face with your illness and then planning a life despite them, may be one of the bravest decisions you will ever make.”

Unknown

The ups and downs and spins and twirls never truly end when you live with an invisible illness such as, chronic pain.  It took me ten very long, painful, heartbreaking, gut wrenching years of my life to come to a point of acceptance of my invisible illness.  It was not until then that my dreams slowly but surely began to come true.   However, I have to plan my life around chronic pain.  Now, this is not such a terrible thing and with a lot of dedication can be done and one can make the life they desire no matter what illness he or she has.  A month ago I was given the greatest news of my life since the birth of our healthy daughter, Kayci.  I am sure many of you who know me can guess what that news is but I am still waiting to share it with the world.  With this amazing, life changing, news that I have worked towards for two years now has come with some changes in my daily life and how I manage pain naturally.

When I set my mind to something, I do not give up.   That is one of the biggest blessings I received from a diagnosis of chronic pain.  I know that if I am strong enough to manage chronic pain naturally and live a life I am for the most part happy with, I can do anything.  I have to want something so badly that  I do not go a day without thinking about it to put in the effort, faith, and work it takes to make what I want come to fruition.  It may sound silly to some but one of my biggest and most beneficial tools to managing chronic pain naturally is exercise.   Exercise not only helps my pain levels but my anxiety as well.  In order to keep my dream safe, I have been told by my amazing doctors that I  should not work out for now as I just got over being on bed rest.  It has now been over a month since I have been allowed to exercise and it has taken a toll on me.  However, I keep reminding myself of one of the greatest quotes I have ever heard: “At times you must give up what you want now for what you want the most.”  It has been an adjustment but I just have to plan my life differently for now just as I have done with my management of chronic pain.  I have had to find different things to do in the morning when for thirteen years I have gotten up and worked out right away to keep my brain to going straight to pain and to get my body moving.  I started a gratitude journal six weeks ago where I write down five things I am grateful for each morning.  I have had more five am snuggles with my beautiful daughter and spent very real time with her just talking as the sun comes up.  I am trying hard to practice more yoga nidra and meditation.  I am finding other ways for the time being to manage chronic pain and re-arrange my schedule to keep my dream safe and sound.

Whether or not you have an invisible illness, there are going to be times when life does not go as plan and random road blocks are going to stand in the way of what you desire.  You have to keep going and find different routes and avenues to take to get to where you want to go, to make your dreams come true.  “At times you must give up what you want now, for what you want the most.”  I have used that quote in my management with chronic pain when pain is so difficult I have a small desire to go back to pain medication and I use it for other life changes that arise in my life.  I believe in all of you and all of your dreams.

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Self Reflection and Chronic Pain

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“If you suffer it is because of you.  If you are blissful it is because of you.  No one else is responsible, only you and you alone.  You are your own hell and your own heaven too.”

Osho

I have had a few days where I have had to leave my comfort zone and just relax and rest.  If you know me, I am not a fan of resting and being still for too long.  I am the definition of an over thinker and having an invisible illness such as chronic pain has only intensified my roller coaster of thoughts.  After ten years of searching for a cure to chronic pain and finally finding a way to manage pain and live a life that makes me happy, it is very difficult for me to step away from the routine I am so accustomed to.  My day usually begins around five in the morning with stretches and exercise.  Of all the tools I use to manage chronic pain, exercise is definitely one of my favorites and most useful.  It helps with my chronic pain and my subsequent anxiety.  I stay busy throughout the day which is quite easy to do with a four year old daughter, work, and running a home that I am proud of.  My other favorite tool for managing chronic pain naturally is the utilization of distractions.  I train my brain to not think about pain and am usually quite successful in this exercise.  However, for the past few days I have been forced to rest in bed which on one hand has been very difficult.  I want to play with my daughter, run my errands, make dinner, and finish the damn laundry that has been sitting in the laundry room for two days.  I do not enjoy being vulnerable and relying on other people to help me and do things for me.  I begin to feel guilty, frustrated, and the little control freak buried inside me comes out in the silliest ways one can imagine.  For instance, I find it difficult to walk into my daughter’s playroom because I know it is not organized the ‘Jessica’ way.

On the other hand, the past few days have been a great lesson for me.  I have had to let things go and find distractions that have nothing to do with exercise and/or activity.  I have caught up on my favorite television shows, books, and even went back to my gratitude journal and began doing the exercises that are found in the book.  The book is entitled: “Simple Abundance” by Sarah Ban Breathnach.  I have read the book but have never attempted to truly do the workbook that accompanies this very inspiring book.  The first three assignments were quite simple for me.  I was asked to write down fifty things I am grateful for: things from having food in the fridge to being blessed with a beautiful, happy daughter.  The second was to write down the five things I want in my life more than anything.  Number one on my list was to have more children: no brainer there.  The third exercise was to write down the things that I wanted to work on within myself to find more inner joy.  Ironically, this was the easiest exercise the workbook asked of me.  I wrote down so many things that I ran out of room  the page allotted  me.  Sadly, the fourth exercise was much more difficult than I thought it would be.  The exercise asked me to write down five things or more that I loved about myself: my gifts.  I came up with two right away: empathetic and funny.  I even felt a little guilty writing down funny.  It took me longer to find five things I am sincerely proud of about myself then it did to find fifty things I was grateful for.  No one else needs to read my simple abundance workbook so why was I so hesitant to write exactly how I do feel about myself?  Yes, there are things I want to work on and am working on but there are more than two things about myself I am proud of.  However, I felt some sense of ridiculous guilt putting them down on paper.  I learned that I need to own the things I feel good about regarding myself and my life.  I have worked hard to get where I am especially with chronic pain.  I have a lot to be proud of and should not feel ashamed for feeling good about those things in my life.  I focus more on the things I need to work on than the goals I have already achieved.

I believe this to be true: no matter where we are in our journey with chronic pain or life in general, we should be more focused on our gifts than our downfalls.  The more we focus on the good in ourselves, the easier it will be to work on the things we know need some help.  None of us are perfect and chronic pain makes life incredibly difficult at times but we all have special gifts that we need to start putting more focus on.

 

 

 

 

 

 

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Empathy and Chronic Pain

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“I love when people that have been through hell walk out of the flames carrying buckets of water still consumed by the fire.”

-Stephanie Sparkles

There is a huge misconception that people with chronic pain want, thrive even off of pity.  Many believe those with chronic pain want to be coddled and treated somewhat like a baby.  I have had many people say to me: “Oh my, so young to be diagnosed with such a disease. I feel so badly for you.  Why did you have to fall off of that bike at such a young age.  Its such a sin.”  I know logically that people’s hearts are in the right places and they truly feel for me and others who have an invisible illness.  However, I never wanted pity from anyone even when I was at my lowest point with chronic pain.  I definitely do not want any pity now at a time in my life when I have been managing chronic pain so well for such a long time and have tried as hard as I possibly can to find the good in my accident and life with chronic pain.

The Oxford Dictionary defines pity as: the feeling of sorrow and compassion caused by the suffering and misfortunes of others.  I do not want people to view me as a suffering thirty five year old who has had the terrible misfortune of falling off of her bike at a young age leading her to a life to chronic pain.  However, I do want encouragement and at times empathy.  The terms pity and empathy are not alike whatsoever.  The Oxford Dictionary defines empathy as: the ability to understand and share the feelings of another.  People always ask me what helped me the most in my journey with chronic pain.  I learned so much at the Mayo Clinic in Minnesota.  I learned from doctors, physical therapists, nutritionists, etc. on how to manage pain naturally and not allow pain to take over my existence.  I learned that I could live the life of my dreams despite not finding a cure to chronic pain.  However, the best part of the program was the empathy I received from the people who were also in the program.   I became friends with people of all ages, races, genders, from all over the country.  On the surface most of us looked like your average American but we had one HUGE thing in common: we all had a form of chronic pain and for most of us our pain was not visible.  For ten years no one understood how I felt inside as pain after a long time becomes not just physical but emotional as well.  I was one hundred percent alone for a third of my life.  I was a turtle who only came out of her shell when she was desperate enough to spend time with people just as not to be alone in her pain for a few minutes or hours. The Pain Rehab Center at the Mayo Clinic allowed me to come out of my very hard, broken shell for weeks.  I was no longer alone.  I was understood and able to share my feelings/emotions with others who did not pity me but empowered me to keep going despite chronic pain.

There are challenges I face now and I do not share them with many people because the last thing in the world I ever want again is pity from friends and family no matter what my difficulties may be.  I want to be encouraged and empowered.  Pity does nothing but make another person feel worse than he or she already feels.  I love knowing people believe in me and believe in my dreams.  I do not want to hear: “I am sorry you are going through this or that.”  I want to hear: “Jessica, you are so strong.  You got this.  I have every ounce of faith in you and I am here if you need anything.”  You do not always have to be in someone’s shoes to express empathy or encouragement.  The greatest thing you can say to a loved one with chronic pain is: “I have no idea how you deal with this invisible illness every day.  You are so strong and I am so proud of you.  I am always here for you.  I believe you, you are never alone.”

A quote always sticks in my head when I write about empathy and I will close this article with this: “I do not want you to save me.  I want you to stand by me as I save myself.”

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My Three Lives in Pain

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“My illness isn’t really invisible.  If you look closely enough you can see how much it has changed my life.”

Unknown

My bike accident occurred when I was in my young teen years.  I feel as if I have led three different lives during my thirty five years in this amazing world.  The first thirteen are somewhat difficult to remember.  My earliest memories are with my dad taking bike rides to the park and playing kickball with my friends in our front yard.  Some great memories stick out and some terrible memories are there that I will never forget.  I was a kid with an enormous zest for life.  Despite not having the “perfect” childhood, I have more great memories than bad memories and my family did the best they could to provide me with a joyous childhood.  No one would have imagined the events that occurred during the ten years that followed my bike accident.  I remember the day I fell as if it was yesterday, down to the taste of the pink mint that I was chewing when the front tire of my bicycle got twisted with the bag I was carrying and my body went directly into a stone wall.  The damages that occurred on that day would affect the next two thirds of my life.

For the following ten years I would be a totally different person than I was during my first thirteen years here in this world.   As many of my readers know, my accident resulted in brain surgery to remove a blood clot and many other injuries that had me in critical condition for a few weeks and then bed bound for a few months.  I do not remember the pain from my surgery nor being extremely upset about losing three months of summer.  I remember fear but not pain.  I was doted on for months as everyone was beyond happy I was alive and healthy.  I received flowers, presents, cards, balloons, and because I was unable to walk up the stairs my dad gave me a bell to use whenever I needed something.  Once my scars healed and my hair grew back, I believed that my life would go back to the way it was pre-bike accident: not perfect, but happy.  I could not have been more wrong.  Brain surgery was nothing compared to the pain I would endure for the second portion of my life.  I looked pretty much like the Jessica I had been before my fall except for all the fun things that come with puberty like pimples and oily skin but I was in more physical pain than I had ever endured; the difference was that the pain was no longer visible.  I can remember the exact moment I began noticing the pain.  I was sitting in my Seventh Grade Social Studies class and a classmate asked me why I was rubbing my face and neck.  I had gotten so used to massaging the pain I felt that I started doing it constantly.  For the next ten plus years I would search for a cure to chronic pain.  The term chronic pain was not used during this time and every doctor and specialist I saw was mystified by my condition.  I was miserable, confused, in pain, and filled with a desperation for relief that no words can describe.  I tried everything to the point that if someone started a question with the words: “Have you tried……” I would stop them before they could finish because I truly had tried EVERYTHING.  Fast forward a few years and despite my huge passion to get my college degree, I dropped out after two and half years and drove to Boulder, CO to drown my pain in partying with friends.  I was the fun girl who was always up for having drinks or taking random road trips to Vegas.  I surrounded myself with people who loved to drink and party so that I could finally “fit in” with people as I had during the first third of my life.   I was the life of the party on the outside but inside I had never been more unhappy.  I came to a point that I not only hated my physical pain but I hated myself.  I hit a rock bottom that was harder than the wall I fell into that started this whole mess.

My friends in Colorado began to notice that I was not as okay as I appeared to be.  I was no longer the life of the party.  I was at the party but with each drink I cried more about the physical pain no one understood, not even me.  A good friend saw that I was heading somewhere bad fast and believed me when I said I was in severe pain despite the fact that the pain was not visible.  He believed me and that belief saved my life.  I ended up driving to the Mayo Clinic in Minnesota where the third portion of my life would begin.  After two months of seeing every specialist possible and undergoing every test possible, I was told that I had chronic pain and there was no magic cure to my invisible illness.  I am not sure I have ever cried as hard as I cried when the words: chronic pain and no cure came out of this brave doctor’s mouth.  Under his guidance and advice, he got me into the Pain Rehabilitation Center at the Mayo Clinic where I learned how to manage and live with chronic pain naturally.  I went unwillingly at first but deep down I knew I was headed for death if I did not try one last thing.  The first week was brutal and I did not say a word to anyone.  Then something clicked.  I started listening to the people around me whom also had chronic pain.  Their pain, like mine was mostly invisible as well.  I was no longer alone.  Chronic pain does not discriminate and I became close to people I never would have talked to because despite races and age, I had more in common with the people in my chronic pain group than I had with anyone in the world.  My entire life changed during the next three months.  I learned how to live with chronic pain and manage it without medications or treatments.  I began to live again as opposed to merely surviving.  I was alive.  I stopped hating myself and began to embrace life and follow my dreams.

I was petrified to go back to Colorado and wanted nothing to do with the lifestyle I had been living there.  I was healthy.  I had learned that I could be a healthy, happy person despite chronic pain.  However, I had to change my entire lifestyle.  I was exercising, eating healthy, reading again, writing, and wanted nothing to do with drinking or anything that could affect my chronic pain management routine.  I lost a lot of friends.  I was not the same Jessica I had been prior to going to the Mayo Clinic.  I went from being the life of the party to the girl who was in bed reading by eight o’clock and awake by five am exercising.  I was one of the most “boring” twenty-two year olds in college.  No one understood me and I was asked constantly to go to this party or that party but I had to say no even though I knew I was losing the group of friends I had once counted on to get me through the night.  I had to be selfish.  I had to focus on my health.  I spent a year in Denver, Colorado practicing the techniques I learned at the Mayo Clinic every day of the week: no exceptions.  I needed that year to totally focus on my health and my new way of living.   I then went back to school in Denver, CO and did get my college degree in Social Work.  I loved learning how to help people so much that I ended up graduating at the top of my class and once I stopped resisting pain, everything began to fall into place.  I am now thirty-five years old and there have been bumps in the road in my journey with chronic pain but nothing like the life I led for the second half of my life.

If you have chronic pain I want you to know that you are not crazy and you are not alone.  I spent a third of my life living in hell, wanting to scream and cry every second of every day.  I wanted to tear my entire face and head off just to get rid of the pain.  I did not have hope because I knew no one who understood what I was going through.   There was no light at the end of the tunnel.  I understand that you may be in the worst possible place mentally and physically but I need you to have hope.  There may not always be a way out but there is a way through.  I promise you.  If I can live a happy life despite pain, anyone can.  Don’t worry, I probably would not have believed myself either if I read this fifteen years ago but at least know that there is a light at the end of the tunnel and the light is very bright.

 

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Desperation and Chronic Pain

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Do not ever lose your sense of humor, no matter how difficult your journey is at this given time and place.  I believe two things got me through my toughest years of searching for a cure to my invisible illness: the love for my family and the rare times I laughed.  Ironically my dad is the person who fit into both these categories: I did not give up because of my love for him and there were times he was truly the only person who could make me laugh.

If you understand the above cartoon, I’m sorry for your battle with chronic pain.   I remember back when I was in a terrible place with my invisible illness cancelling doctor appointments on a monthly basis because I was literally in too much pain to get out of bed, get dressed, and drive anywhere.  I chose to lay in bed on those days and just cry at the unfairness of my disease and the frustration I had that I could not find any relief no matter what doctor, medication, surgery, or specialist I tried.  I did not claim medical bankruptcy for buying clothes and having fun.  I was spending all our families money on one thing: a cure to my never-ending pain.

I started laughing today as I was playing with my daughter because the most random memory came into mind.  It was around the year 2001 and I was on my tenth year of searching for a cure to chronic pain.  I was living in Boulder, Colorado living two lives: one life was with my friends having fun drinking and living the crazy college life; the other life searching for a holistic cure to chronic pain as I truly thought I had put in my ten years using Eastern medicine and Colorado was a great place to find a ton of different approaches to pain.  Did any of them work?  No.  I was living two lives.  It is hard to follow your nutritionist’s advice to stop eating all wheat based foods and be drinking vodka tonics most nights.  Talk about an oxymoron.   Back to the funny memory (this memory is funny now but at the time it was anything but humorous.)  My dad was visiting me in Colorado for his birthday and Easter.  His visits meant the world to me but I really wanted him to believe I was doing a lot better than I was despite the fact that I was still on my now eleven year search for a cure to chronic pain.  I was seeing a hypnotist at the time who claimed she could cure all the pain I had.  After a few sessions and no relief she recommended me seeing her friend who used the newest technology to help people who were in physical pain.  I remember my dad taking me to this ‘doctor’s’ office and literally praying that the hypnotist was correct and this magic machine could cure me.  This was a moment of intense desperation.  The ‘doctor’ charged a fortune for me to sit alone in a room with what appeared to look like an oval robot.  I am not making any of this up.  After paying him an exuberant amount of money, he had me sit in a room by myself with this robot that apparently set off magnetic frequencies that dulled or removed a human’s physical pain.  Both this doctor and robot made out well that afternoon, but I was a hot mess.  Not only did I feel beyond dumb, I realized I had come to a point in my battle with chronic pain where I was relying on an oval, black machine to cure my invisible illness.  It was mere weeks later that I hit my rock bottom and ended up at the Mayo Clinic in Minnesota.  Looking back, I can thankfully laugh at this madness but at the time I was in seriously bad shape.

This story that I just threw out there may seem very odd to the average person but to a person with chronic pain this anecdote is sadly much more common than one would believe.  People with chronic pain will literally do ANYTHING to relieve their pain.  You may think he or she is crazy but as Elvis Presley once stated: “We are all addicted to something that takes the pain away.”  Part of my addiction to my invisible illness was searching for a cure and I am more than grateful that I found a way to live, laugh, and be the person I am today despite never finding that cure.  None of you are crazy and I know all of you can one day laugh at the madness we put ourselves through because of chronic pain.

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Feeling Buried Alive: Chronic Pain

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I remember when I was a young girl talking with friends about the worst possible way to die and each of us had a different scary scenario for death.  I have no idea why we talked about such things although the conversations were probably correlated to the scary movies we watched in the Eighties and Nineties such as: “Childs Play” and “Sleeping With the Enemy.”  We were a generation drawn to scary movies.  My biggest fear was being buried alive: that was always my answer if this random/crazy conversation came up.  I must have seen a movie or show about someone being buried alive because ever since then I have had some form of Claustrophobia.  My younger brother and I used to wrestle as children and I literally would scream bloody murder if he (who was stronger despite our age difference) pinned me down for too long.  I felt as if I was suffocating and worse trapped with no control.  Fast forward many years and I found myself living in MRI machines because of my bike accident and subsequent chronic pain.  It came to a point that I truly could not bear another MRI because I hated feeling trapped in the machine and literally had panic attacks that if any of my doctor’s needed an MRI, I was given some sort of sedative to relax me.  They never worked.  My worst case scenario of how I would die was coming true despite me surviving my accident: I felt buried alive in more ways than one.

I was around the age of fourteen when I began my search for a cure to chronic pain.  With each day, month, and year I found myself sinking deeper and deeper into the ground.  Maybe that is where the term ‘rock bottom’ comes from however I found myself under a pile of rocks that caused me to actually want to die because I could not bear another day in my battle with chronic pain and worse searching for a non-existent cure.  I was not living and every moment of every day felt as if I was trapped inside my own body: a body of pain.  I am thirty-five now, managing pain naturally, and living a life of joy and gratitude as opposed to a life of pain.  With that said, I still have moments where I freeze in fear and pain.  I feel as if I am back in that MRI machine: gasping for air, unable to breathe, unable to move, trapped.  These moments happen either as I am trying to fall asleep or when I first awake.  Either way, the moments always happen when I am in bed.  I can manage the mornings when this happens much more easily  than I am able to do at night time.  If I wake up with this feeling of fear and being literally stuck, I can will myself out of bed and exercise.  People think I am crazy because I awake so early and exercise before the sun is up at times but this is what works for me.  Exercise is truly one of my biggest tools for managing pain without pain managing me.

However, nighttime is different.  Most nights I am way too tired to focus on pain or the random fears that enter my mind causing me to sweat, breathe heavily, have heart palpitations, and eventually make myself get up and just walk around the house.  Then I get in bed and try to sleep again and I am back in that MRI machine: STUCK.  This happens rarely but there are those nights where I cannot even find enough gumption to read or watch something meaningless on television.  Pain, fear, and the emotions that come with this invisible illness take over my mind and body.  I do not have restless leg syndrome but know what it feels like because when nights like this happen to me, I cannot stop moving and yet I feel trapped inside myself.  It is literally hell on earth.  I cannot believe I lived in this state of pain and panic for over a decade.  And people wonder why the number one reason a person with chronic pain dies is by suicide.  I made it.  That is what gets me through theses horrific nights: knowing that the feelings I am feeling will be gone but they are torture nonetheless.

If you ask my daughter why people are mean, she will respond with this: “Because they are sad inside.”  Never judge a person by how they look on the outside or how they treat you.  People will love you and people will hate you and none of it will have anything to do with you. Chronic pain is usually invisible and I try to remember when someone is rude to me or does not like me that they too could be fighting a battle I know nothing about.

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All Pain is REAL

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My family and I watched the movie last night entitled: “Alexander and the Terrible Horrible No Good Very Bad Day” starring Steve Carrel.  The movie is based on my favorite children’s book and I was extremely impressed by how funny, witty, and thought provoking the movie turned out to be.  I honestly cannot wait to watch it again.  I had a terrible, horrible, no good, very bad week for the most part and the reason was due to pain, however it was not due to chronic pain.  That sentence may only make sense to those who also suffer from chronic pain.

One of my main tools for managing pain naturally is not talking about it.  However, for this post I must point out where exactly my chronic pain is located.  Because of my bike accident and subsequent brain surgery my pain is located in my face, head and neck.  I had many surgeries to “cure” my chronic pain before I began managing it naturally which only made my chronic pain that much worse.  However, this week I had my first real back ache.  Of course, I have had back issues since my accident but not chronically.  The worst of my chronic pain has always been in my face and head.  For over ten years, while I was searching for a cure to my chronic pain I took many medications, was at the doctor’s at least twice a week, and lived my life on the search for a cure for my invisible illness.  I never slept because the pain was too intense and over the years as each doctor, medication, and surgery did not relieve my pain I became depressed, agitated, angry, and began to isolate myself because I could not deal with being around anyone, even my family because pain had totally took over my entire existence.  Jessica and Pain were one of the same.

When I did hit my rock bottom and truly was at my worst: living in Boulder Colorado, not going to school, seeing doctors constantly, drinking all the time with friends, and crying day in and day out I finally went to the Mayo Clinic in Minnesota.  I unwillingly entered a program called the Pain Rehab Center where I learned how to manage pain naturally.  To this day I utilize the tools I learned there and have found a fulfilling life despite pain.  When I first entered the program I was pissed, and more depressed than ever.  No one looked sick.  Then again I did not look sick either but at the time I was so focused on my pain I could not imagine anyone else feeling as terrible as I did.   At that point I thought my pain had to be visible because it was all I could see.   There were about twenty people in my group and all had chronic pain but no one was talking about their pain.  Some people were laughing, walking around, reading, playing board games, emailing friends as I sat there thinking: “This is crap.  I could never be able to read or email a friend because my pain is way too much to bear.  It is hard enough to sit in a chair much less laugh with people I do not know.”  I wanted to quit.  My dad being my voice of reason urged me to stay in Minnesota and give the program a chance.  A few days in I began to hear people’s stories.  Turns out everyone did have chronic pain but no one had had brain surgery or pain in their face and head.  Some people had chronic back pain, fibromyalgia, phantom leg pain, migraines, etc.  I always thought having any kind of chronic pain other than my own would be better.  Having chronic pain throughout my face and head was and can still be torture.  I thought back then if I had back pain or phantom pain I could at least read or do this or that.  I learned this week how wrong my thoughts back then were/are.

I am not sure why I have had a back ache this past week.  I came down with a stomach virus just yesterday as well so maybe they are correlated but I really do not care why my back hurts.  I learned a long time ago that trying to figure out why something hurts will only bring more attention to the pain.  This is not always a good thing and as a disclaimer I would like to say that it is always important to not ignore pain or any ailment for too long as there are times something could be seriously wrong.  However, I knew nothing was life threatening and I was just coming down with something and/or had over worked my muscles through exercise or just not taking enough breaks.  However, severe back pain is awful!!!!  I had insomnia for over three nights.  As I was laying in bed those nights that turned into mornings I remembered all those in the Pain Rehab Center with me.  I was a hypocrite at the time.  Pain is pain.  Chronic pain is chronic pain: visible or invisible.  Now I know what severe back pain feels like and it is just as bad as my chronic pain is: just in a different area of my body.  I am thankful to not have chronic back pain and as it is slowly going away I am grateful.   All of us who have chronic pain have critics within our life and those who are not in our life.  Many people do not believe our pain.  There is a huge stigma related to invisible illnesses.  I have been writing for over three years in hopes to help those with chronic pain and all invisible illnesses for that matter.  We need to stick together.  Does it matter where our pain is?  Chronic pain is an invisible illness that affects our lives in more ways that I can count.  Why even ask another where someone’s pain is located?  I learned this week after days of severe back pain that that pain was no different than when I was in the wraths of hell with my chronic pain which is located in my face, head, and neck.  There is enough judgement surrounding chronic pain.  Let us never judge one another who understand chronic pain.  Pain is pain and we need to be a support system not a group of individuals trying to figure out whose pain is worse than someone else’s.  Do not forget the three most important words to say to one with any invisible illness: I BELIEVE YOU.

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Working With Chronic Pain: My Biggest Mistake

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Where do I go when I am faced with life’s biggest questions or when I am in the middle of an invisible argument going on inside my mind: the beach.  I am able to think and find my answers to life’s biggest struggles when I am right in front of the ocean. We live about fifty minutes from the Jersey shore and it remains my place of peace and where I go when things in my life seem to be unravelling.

My biggest fear when I left the Pain Rehab Center at the Mayo Clinic in Minnesota was how I would be able to work with chronic pain?  I truly did not believe I would be able to be a social worker when I was managing pain naturally and had this intense routine I followed daily to manage my pain without it managing me.  I spent about six months or so not working once I left the Mayo Clinic and used this time to truly focus on my health and management of chronic pain.  Every day I followed a schedule and eventually I did not focus on my pain as I once had and happiness started to truly enter my heart and soul.  I felt alive for the first time in twenty years.   I was exercising, practicing meditation twice a day, taking walks, reading, and finding all the things I thought I had lost because of chronic pain.  It was the happiest I had been since I had fallen off of my bicycle in my young teens.  I was thriving despite chronic pain.

However, I was a college graduate with my degree in social work and knew I had to start applying to jobs in my field after my six months of getting my chronic pain under control.  I was terrified.  I knew I could not do a forty hour week but I needed health insurance so I had to make sure I worked at least thirty-two hours a week.  I was so afraid that work would take away all the progress I had made in my management of pain.  I went on an interview at a place called Senior Care which was a medical facility that had patient’s who suffered from Dementia, Mental health issues, Cancer, Autism: you name it.  The job seemed amazing and I loved the facility.  During my interview, I was honest with my soon to be boss and explained that I had chronic pain but was managing it naturally.  I told him that I would need about two breaks a day and he was very impressed with my honesty and how I managed chronic pain as many of my soon to be patients also had chronic pain.  He then began asking me questions on how I managed pain and if I would be able to teach some of the patients the techniques I used such as meditation.  BINGO!!!!  I was pumped.  I wanted to just tell my future boss that I would take the job and start the next day but then fear crept in and I asked him if I could have a couple days to think about the position.  The following day I drove to the same beach seen above by myself with my meditation CD’s, my books, and my journal.  I sat on this very same beach where years later I would be holding this precious daughter of mine and just asked the Universe if I should take the job or not.  My intuition was so strong that I really did not need to ask anyone their opinion.  I knew I wanted this job and after eight hours of sitting on the sand in my favorite place in the world I drove home and called my soon to be boss and took the job.  My intuition was right on point and I loved my job.  I was able to incorporate my chronic pain management tools into my career,  I was helping people and making a difference, and I was proud of myself.  It was the greatest job I have ever had so why did I leave?

One downfall of my job was that I made very little money and my health insurance was pretty bad.  Out of the blue one day, I received a phone call from a different facility asking me if I was interested in interviewing for the Director of Social Services at one of the most famous nursing homes in our area.  The Director was offering about twenty thousand dollars more than I was making and my ego took over and I agreed to be interviewed.  I was managing pain amazingly, I was in a great place: mind, body, and spirit so I thought: what the hell, may as well at least go for an interview.  Here is where I made one of the biggest mistakes in my career: I took the job despite my strong intuition to stay where I was not making a lot of money but I was healthy and happy.  I gave my two weeks to my dream job and began working as the Director days later.  By the end of my first week at my money making, high profile social work job I knew I had made a HUGE mistake.  I was working over forty hours a week, no breaks, no time with my patients, no time to incorporate my chronic pain management tools, and my self esteem began to spiral downwards as my pain began to increase by the day.  I was miserable, filled with regret, and in tears every night of the week.  Weekends were no longer fun because I was no longer taking care of my health five days a week because I chose money over my health and happiness.  Within a year of my twenty thousand dollar mistake, I found out I was pregnant and gave my two weeks notice.  My boss was not a huge fan of me anyways as he told me on a daily basis: “Jessica, you are just not a good sales person.  We need our numbers up.  We need more people who will pay privately.  Your focus needs to be on our facility.”  No, I am not a good sales person, I could not agree with this person more.  I was a social worker.  I hated sales, I hated shopping, and I went into social work to help people not make a business money.

Chronic pain has taught me more lessons in my life than any other ailment or event has.  This was another hard lesson I had to learn.  If I could go back in time, I never would have chosen money over my health and happiness.  I would have followed my intuition and stayed in the job where I was making little money but I was not only making a difference in my health but the health and happiness of those I worked with.  I did not go to the beach seen above when offered this twenty thousand dollar mistake.  Lesson learned.  There is nothing in this world that is more important than your health and happiness.  If you are lucky to find a job in which you are able to manage your invisible illness like I was able to find, do not leave no matter what!  Do not make my twenty thousand dollar mistake.

 

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Anxiety and Chronic Pain

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I have yet to meet a person who has chronic pain but has no anxiety symptoms as seen above.  What came first: chronic pain or anxiety?  I believe for everyone this is different and I am not a huge fan of the: what came first: the chicken or the egg theory anyways.  In the end, who cares?  You have chronic pain and you are dealing with the dreaded invisible illnesses that hop on board with the relentless pain you are already facing.  I personally know that I have had anxiety problems since I was a child.  Even at the young age of six I worried about everything.  I remember nighttime being the worst because I was never able to turn my young mind off.  I worried about things that were in my reality and things that no child or adult should waste their time thinking about.  My dad once took me to my pediatrician because I had such problems with insomnia: I was nine!  My bike accident happened in my young teens which resulted in brain surgery and a life with chronic pain.  Chronic pain did not help my anxiety at all.  I have written this before but I fully believe this to be true: the fear of pain is often times worse than the pain itself.  I no longer look for a cure for chronic pain and manage pain totally naturally.  However, I still have some difficult days or nights but they do not rule my life by any means.  I over did things yesterday and was overly anxious and paid the price last night as I watched The Bachlorette and later read.   However, I do not fear pain but I do find myself fearing anxiety.

There is no doubt that anxiety increases my pain levels and this goes for everyone.  People without chronic pain get headaches, back aches, and stomach aches when overly stressed or filled with anxious thoughts and worries.  If you are already living with chronic pain, there is little doubt in me that anxiety, when heightened will lead to increased pain levels. I have been working on managing my anxiety for thirty years and the one good thing I have learned is that a lot of the techniques I use to manage chronic pain also help with my anxiety management: exercise, breathing exercises, yoga, meditation, yoga nidra, healthy diet etc.  I cannot believe I am writing this as I never thought I would be able to manage pain without a cure or medication but managing my anxiety is more difficult than managing chronic pain.  Wow, just writing that fact is shocking to me.

Anyone that has anxiety knows how difficult it is to live with this very real invisible illness.  Just like chronic pain or any other disease, one cannot understand the true feelings of anxiety unless on lives with this chronic condition.  I awake most mornings with a huge amount of anxiety and most days I can jump up and just start my routine but there are some days that it takes a ton of will power.  Anxiety, like chronic pain can truly take over one’s mind and then body if we allow it to.  People may say to you: “You worry too much, everything works out.  Just calm down.”  Most of us, myself included know that the things we worry about always work out however it is very difficult at times to talk reason to our minds and souls when they are in a heightened state of anxiety.  Logically, we know how blessed we are and that the past has taught us worrying will never change the outcome but just like a difficult day with chronic pain there are difficult days with anxiety.  I struggle the most with anxiety first thing in the morning and at times as I try and fall asleep.  I noticed lately the more I give in to my anxieties in the morning the easier it is for me to fall asleep because I am so tired from having battles in my mind that I am not only exhausted, but have stressed myself out to the point of having a difficult time with pain.

Where is the happy ending of this battle with anxiety?  Is there an ending?  I do not know.  I only know that if I can learn how to manage chronic pain without medications or finding a cure, I can better myself in more ways than I realize.  Life isn’t about the destination, it is through the journey of ups and downs that we learn and grow.  I find it ironic that having chronic pain because of a bike accident taught me (ten years later) how I can manage anxiety the same way I manage pain.  I also find it crazy that anxiety is more difficult for me to manage now than pain.  Fifteen years ago I would have given in to both chronic pain and fear in the morning and never have gotten out of bed.  Now, at the age of thirty five I feel as if I slept super late because it is my day off and I did not wake up until eight in the morning (thank you daughter!)  Our thoughts become our reality, I do believe this to be true.  However, once we accept it is our anxiety talking and not the rational part of our minds we can at least come to a great starting point in our journey with anxiety.  We are always works in progress and I have learned more from chronic pain than probably anything in my life.  I plan to do the same with anxiety and worrying.  We just never give up and no matter where any of you are with your personal invisible illness, I know from much life experience that you are truly doing the best you can.

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Humor and Chronic Pain

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“Open your eyes, for this world is only a dream.”

Rumi

I had quite the imagination when I was a child, still do but that imagination goes straight to fear way too often as an adult.  I used to wonder if my real life was while I slept and dreamt and my dreams were actually when I was awake.  I also used to think I could fly and jumped off of my families couch way too many times to count: turns out I can only fly once in a blue moon while I sleep.  I love the quote above: “Open your eyes, for this world is only a dream.”  I took this quote to mean that we take life too seriously at times and miss out on the true miracles and blessings that occur in our life every day.

My daughter and I were in CVS, our local drug store the other day buying random things I had coupons for.  As I was selecting the correct allergy medicine, Kayci whispered in my ear: “Mommy, what is that?  That poor man is missing a leg!”  There was a man in his fifties standing at the pharmacy telling jokes and making the pharmacists and customers roar with laughter.  He was really funny, to the point that I forgot my daughter’s question and truly did not notice that this man had a prostetic leg as his joy was radiating through the store.  I began laughing out loud as well and about eight people were all enthralled with this man’s amazing sense of humor.  He was truly one of the funniest people I have met in a long time.  I began talking to him and the elderly woman next to him and forgot that my daughter was still whispering her question: “Mommy, what is that???”  The man heard my daughter’s question and at first instinct I was embarrassed but luckily this man was so gracious and kind that he explained that he was blessed enough for science to make him a leg as he had lost one of his in an accident.  Another woman, who turned out to be a psychiatrist chimed in as well and explained to my little four year old how amazing this man was and how lucky he was to be so happy even without one of his legs.  Phew, took the pressure of explaining amputations to my toddler away from me for the time being.

As little as this moment was, it was the highlight of my day.  I was proud of my daughter’s empathy and intelligence.  I was thrilled to be surrounded by such kind people.  But, most of all I felt so blessed to have met this man whom I will probably never see again.  It was a teachable moment for both my daughter and I.  Some days I forget to count my blessings.  Some days I still do feel sorry for myself for having chronic pain, rarely but this was one of those days and I was so thankful that I had the privilege of meeting this man on one of my ‘difficult days.’  There are so many things we take for granted and we all have a story to tell whether it be visible or not.  I do not know this man’s story but I do know he was a blessing to my daughter, all the people who were talking with him that day in CVS, and myself.  As he left the store I said: “You are one of the funniest people I have ever met.”  He replied immediately before walking out the door: “I lost my leg, but I will never lose my sense of humor.”

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