Angels, Anger, Anxiety, Brain Surgery, Buddha, Caregiver Stress and Chronic Pain, Change, chronicpain, Depression, Exercise and Chronic Pain, Fear of Abandonment, Griveving Process, Happiness, Law of Attraction, Loss, Managing Pain Naturally, Manifesting What you Want, meditation for chronic pain, mindfulness, perfectionism, Positive Energy, self love, simplify life, spoon theory, Suicide, Suicide and chronic pain, Support for Chronic Pain, Teenagers and Chronic Pain, teens with chronic pain, The Universe, Worrying, yoga, yoga nidra

Negative Coping Mechanisms and Chronic Pain

“I feel the real me is being taken over by my pain and fatigue every single day.”

Unknown

I was recently asked by the amazing site entitled http://www.themighty.com to write about past negative coping mechanisms I used to deal with chronic pain and when I knew my coping techniques had gone too far and what I did to change my behaviors.  My life began falling apart due to chronic pain around the age of twenty.  I had spent five plus years searching for a cure, having many surgeries, being on multitudes of medications, and having my hope for a cure destroyed on a weekly basis for five years and I was done.  I could no longer juggle going to college, trying to receive good grades, spending three out of seven days of the week in the offices of doctors and trying to make and keep friends.   I dropped out of college and completely gave up on myself and my health.  I drove from New Jersey to Colorado where I had a couple friends and who were kind enough to let me stay with them until I figured out what I was going to do with my life.  Truth be told, I didn’t believe I had a chance at life and was just trying to get by and not think about pain.  I hung out with people who enjoyed drinking and loved the college scene.  My friends were drinking to be social and have fun during their years in college while I was drinking to numb chronic pain.  I still had yet to be told I had chronic pain as this was not a term used widely as it is now.  All I knew is that I had a terrible bike accident that nearly killed me and I was left with pain that was invisible to everyone, except myself.

I had never been prescribed pain medication and taking Advil had the same effectiveness to alleviating pain as eating Tic Tac’s all day would.  So, I took drinking with friends to the next level.  Being in a college town that was known for its partying made self medicating my invisible illness quite easy.  I fit in.  We were always able to think of an excuse to drink: Taco Tuesdays, Wine Wednesdays, Thirsty  Thursdays, then the weekend was an obvious excuse to party: TGIF!   Most of my friends were in college full time as I had been prior to dropping out and fleeing New Jersey.   They had extra reasons to celebrate and drink with everyone: doing well on an exam, the end of mid-terms, and the breaks we all know and love.  I felt awful celebrating with them when I was doing nothing with my life.  I loved school and had had so many dreams that I truly believed were stolen from me because of chronic pain.  The more I hated myself, the more I drank and ate.  Within six months I gained about thirty pounds.  I ate all day and drank all night.  Having a hangover was easier than dealing with chronic pain.  My friends understood hangovers but did not understand how in the world I had this pain when I looked perfectly healthy on the outside.  Hangovers were amazing compared to dealing with my invisible illness.

I started to get more and more depressed and hopeless.  Drinking was no longer fun; it was a means to an end.  I only drank to numb the physical pain I felt.  My tolerance went up and I needed to drink more to get the same pain relief.  Instead of laughing and having fun with my friends I always ended up sitting on our deck or on mattress crying into the bottle of red wine that I had grown to hate.  Each day and night seemed to get worse until one day I woke up very late in the morning and all I could smell was stale red wine.  I looked beyond my mattress and saw red wine stains covering the carpet.  I started to cry like I had never cried before.  I knew I had hit my rock bottom and it was either drink myself to death or find a way to manage chronic pain that I had not found in the many years I had dealt with this invisible illness.  As I cried on that mattress surrounded by red wine stains my good friend researched places that specialized in chronic pain.  He looked up every hospital and Pain Center in America and finally stumbled upon the Mayo Clinic in Rochester, Minnesota.   Two days later, we were in my car driving from Boulder, Colorado to Rochester Minnesota.  A few weeks later my life changed forever as I entered the Pain Rehab Center at the Mayo Clinic where I spent a month learning how to manage pain naturally.

The following year was tough as I spent that year solely focusing on my health and practicing everything I had learned at the Mayo Clinic.  I never thought about numbing my pain with anything and the thought of red wine made me want to vomit.  I have been using the tools I learned at the Mayo Clinic since I was twenty two years old.  After my year of focusing on my health I entered college in Denver, Colorado and got my degree in Social Work.  I loved learning about how to help people, especially people with an invisible illness.  I am thirty five now and it has not always been a smooth ride in my journey with chronic pain.  There have been bumps, curves, and some U Turns along the way but nothing can compare to my days and nights of numbing my chronic pain with alcohol.  My lifestyle is not conventional and I live a structured life that incorporates ways to manage pain with positive coping mechanisms.   If I can find a way to live a life with chronic pain without the need to numb the pain, anyone can.  One day you will believe me….maybe not today but one day.

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Managing Life’s Stress Along with Chronic Pain

“Just because they say action does not mean you have to do anything.”

Marlon Brando

This picture was taken just last week in the beautiful town of Lake George, NY.  My family and I went on a week long vacation that was so fun, peaceful, and unique it was difficult to drive back to reality this past Sunday.  My little mini me and I shed some tears as we drove away from our log cabin on the lake and onto the New Jersey Turnpike.  Vacations are always amazing but I find myself managing my chronic pain so much better when away from the every day hustle and bustle of real life.  When I pack for vacation, I make sure to include my “chronic pain management kit” which includes: yoga dvd’s, books, healthy food, CD’s for meditation, and my journal.  I am able to follow my routine for managing chronic pain naturally while on vacation and then some.   I am able to find endless, healthy distractions while away with the people I love.  It takes me a few days to adjust to the ‘real world’ once I return from a week away in what I call paradise.   I spend a week forgetting the stresses and issues I have at home and am able to surrender to the here and now for those seven blissful days.  We returned from our trip Sunday afternoon and the excitement of being home helped me forget my longing for that log cabin and pool.  I was busy unpacking, doing laundry, sorting through mail, and cleaning a home that had been alone for a week.  I went to bed tired and not feeling ready to wake up and face Monday in the non-vacation world.

Monday turned out to be a day from hell.  It started out just like any ordinary Monday: I exercised, got my daughter ready for the day, and left the house for errands and work.  I do not need to go into detail of what exactly transpired this past Monday but I now see how things really do happen all at once.   While I was at work,  I was anxiously waiting for a phone call that would either give me great news or not so great news.  I received the phone call around noon and it was not so great news. I was sad and shed a couple tears and got back to focusing on what I needed to be doing at that moment.  Five minutes later my phone rang again and it was a call from a close family member with really bad news that affects the people I love the most.  A couple hours later my phone rang one more time for even more difficult news.  I felt like I had to do something to fix the problems that I was faced with immediately.  Instead I called my dad and told him everything that had just happened and he shared the above quote with me: “Just because they say action does not mean you have to do anything.”  I realized that if I went into fight or flight mode than nothing good was going to happen and I was not only going to get myself into a huge mess, my little girl was going to be very upset and confused.

Logically I know that everything always works out but I struggle in the moments of bad news or life stressors.  I have two modes: catastrophic mode or fix the problem immediately at whatever cost mode.   Neither mode is constructive and both modes are very detrimental to my pain levels.  I forget how much stress/anxiety affects my chronic pain.  It does not matter how well I follow my routine for managing chronic pain when I am a crying, anxious mess.  I end up paying for my negative emotions physically once late afternoon/nighttime hits.  I exhaust myself to the point of extreme physical pain that I am no longer worrying about anything because I am only focused on pain.

People in my life forget that I have chronic pain which is not their fault.  I have had this invisible illness for twenty years.  Most of the people in my current life were not a part of my life when I was drowning in my fight against chronic pain.  They did not see the twenty one year old Jessica who spent her days in doctors offices and her nights drinking with her friends to the point of crying alone wishing she could either kill herself or chronic pain.  People in my life now see a person who states she has chronic pain but manages it naturally and has a good handle on her invisible illness.  I rarely if ever talk about pain as this is a very important tool for me in my management of chronic pain.  The more I talk about pain the more I think about pain.  The more I think about pain, the worse pain becomes.  A life with chronic pain can be very difficult even for myself at times.  I have come to a great point in my journey with pain but life stressors impact my pain levels more than I would like.

A lot of you are drowning in pain right now and feel that your pain will be forever and have no idea how you are going to make it through today much less the rest of your life.  You want to fix the pain right now, numb the pain right now, and you are either in catastrophic mode or need to fix this immediately mode.  My dad has always given me very sound, zen advice.  I urge you all to think about the quote that helped me these past few days: “Just because they say action does not mean you have to do anything.”

 

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Healing Through Time

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“Isn’t it funny how day by day nothing changes?  But when you look back everything is different?”

C.S. Lewis

The best day of my life was the day I brought this angel into our world:  February 2nd, 2012.  I am sure so many parents feel that way about the days they brought their children into this world however I never thought I would be able to physically or mentally be able to be a mother because of chronic pain.  For years I lived in constant fear that my invisible illness had stolen all of my dreams and desires.  I battled my chronic pain demons to the point of self destruction.  During my darkest hours of pain I dropped out of college and gave up on any life I had hope for.  I began to mourn the loss of the Jessica I believed was gone.  I mourned all the losses I thought had been ripped out of my heart without any reason except incurable, non stop, excruciating physical pain.  Yes, I had dreams to do well in college and become a teacher or a counselor.  I had dreams of becoming a writer and sharing my stories.  However, my biggest dream in the world was to be a mother.  The thought that chronic pain had stolen any chance of my biggest dream coming true was too much to bear and I did hit my rock bottom in my relentless battle with chronic pain.

Fast forward a couple years to when I first heard the words: chronic pain and acceptance and I was taught how to manage my invisible illness naturally and my dreams slowly began to come to fruition.  Despite chronic pain I graduated college and received my degree in social work.  I spent many amazing, unforgettable years practicing social work in the medical field.  I was healthy.  Chronic pain was no longer controlling my life and I was finally in charge.  I was no longer battling my invisible illness or allowing the illness to take away my dreams.  My biggest dream came true when this little girl entered my life and I became my favorite word in the world: mother.

I keep a one liner journal that I have shared with my readers at times and will continue to do so when special days arise.  Each day I write one to three lines of what stood out most for me that specific day whether the day was difficult or amazing I write it down.  I never thought that taking a few minutes a day to write down three sentences would alter my view on my life to the point it has.  For ten years chronic pain controlled every moment of every day of my life and honestly came close to taking my life.  I lived in catastrophic mode realizing like in the movie: “Groundhogs Day” I would wake up every day and be in a state of pain with no relief and no cure.  Despite having control over my invisible illness I still have difficult moments and at times a whole day with pain and have a difficult time distracting myself from my physical struggle.  I am also human and chronic pain is not the only difficult thing that has happened in my life and I will continue to face the challenges life brings us all.  I am able to look back on my one liner journal every day and see just how much can change in a day…a week…a year.  This journal reminds me that no matter what, I can never give up and that all my hopes and dreams will come true no matter what my current situation or current mood is.  I want to share with you my journal one-liner entries are for February 2nd.

February 2nd

2011: I had a D & C/miscarriage.  We lost the baby boy that was inside of me.  I cannot get off the couch and just don’t want to be alive.  I have worked so hard to get to where I am and had my dream inside me and the doctor ripped it out of me.  I’ll never be the same.

2012:  Our daughter, Kayci was born!   I am a MOMMY!  Kayci was born at 7:41pm.  The same doctor that did my D &C last year delivered my daughter!  Six pushes!  I have never been so happy.  This was the greatest moment of my life.

2013: Kayci turns one!  Birthday party of the century!  My mom was amazing and got a pony to come to our house 🙂 She did so much to help celebrate my angel’s first year and sadly missed the party because she was in the hospital.

2014: Kayci turns two!!! Had an amazing birthday with our family and loved ones.  I had two glasses of wine and was literally hungover from just that.  What happened to me?  When chronic pain was terrible two glasses of wine would have been like juice!  I am such a different person!  Exercised and did yoga nidra to feel healthy again!

2015: Although it has been a difficult few months I refused to allow my recent struggle to ruin Kayci’s third birthday!  Decorated house to surprise her and spent quality time with my now three year old.

2016:  Kayci awoke at 4:45 am because she was so excited to turn four!  She loved finding the small gifts hid around our home.  I took her to Build a Bear to start a birthday tradition.  I was in tears of happiness watching her joy as she built her own bear.  She is the best kid ever!

2017: I cannot believe Kayci is five!  It is bittersweet for me, where is the time going?  Decorated house and exercised with my now five year old.  I took Kayci to Build a Bear to keep the tradition going.  She did not remember last year so it was all new to her again.  I had tears of happiness again.  We had pizza and cake at home and she was so happy she refused to go to sleep.

I share this with you because everything does change and although you may feel hopeless with your personal invisible illness or crisis at the moment you must remember that everything does get better with time.  I have things in my life that I wish were happening now and I have multiple struggles in my life that I wish were better this second.  However, I know all my dreams and desires will come true especially when I see days like the one above.  I cannot lose faith or hope and neither can any of you. You may feel sad, hopeless and defeated today but you truly do not know what is in store with you and this time next year everything may be totally different.  I will not give up hope and neither should any of you!

 

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Your Cracks and Scars are What Heal You

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“It’s easy to look at people and make quick judgements about them, their present and their past but you would be amazed at the pain and tears a single smile hides.  What a person shows to the world is only one tiny facet of the iceberg hidden from sight.  And more often than not, its lined with cracks and scars that go all the way to the soul.”

Unknown

I am a person filled with cracks and scars that do go all the way to my soul.  For a good part of my life I allowed these cracks and scars to harden me and become a person I did not love or even enjoy being around.  Self hate is truly the most powerful hate there is because it can cause a person to act out in hate towards others when really the only person he or she is unhappy with is themselves and/or their life circumstances.  I am still filled with cracks and scars that are not visible to the outside world however I no longer hate myself.  I can be excruciatingly hard on myself and perfectionism can get the best of me but I do not hate who I am.  I am filled with more self love now than I have had in all my thirty five years on the planet.  I no longer look at my cracks and scars as my enemy but as the building blocks that are creating my present and future.  Life is ten percent of what happens to us and ninety percent of how we respond to it.

This year has been jam packed with ups and downs.  I have had the highest highs and the lowest lows.  I have had miracles arise and devastations arise.  Ten years ago I would pity myself without welcoming pity from others.  I would have allowed the bad things that have occurred to define my identity.  Now, I try and find the silver lining.  I try and find the lesson behind each great thing that happens and each difficult thing that happens.  There are many things that have happened to me to bring me to the place within myself where I reside now: chronic pain, losses, mistakes, and my daughter Kayci.  I have faith in myself and my future because of my cracks and scars.  Look at that little four year old girl above who is just about to see Santa Clause and is literally holding in her built up excitement.  I am the lucky person that she calls Mommy.  She believes in magic and she helps me believe in magic because in my eyes she is magic herself.  One of my biggest losses happened in 2010 when I lost our son at about nine weeks gestational age.  Had that little angel not left us, I would not know or have this miracle daughter.

I had my bike accident in my young teens and have had chronic pain since.  For so many years all I thought about was how to get rid of my pain.  I not only thought about it but pain consumed my life, the life of my family, and a multitude of doctors and specialists who could not for the life of them find a cure to my invisible illness.  A day did not go by in which I did not think about a life without pain.  I am thirty five now and still have chronic pain and had you told me fifteen years ago I would be living with chronic pain naturally and having a fulfilled life despite pain, I would have either laughed in your face or cried in your face.  But, here I am living a life where pain does not dictate my life.  I have written and said this many times but it is just so relevant and true to all our stories: “If there is something that you do not go a day without thinking about or wishing for than you will find a way to achieve whatever it is you wish for.”  I never found a cure to chronic pain but my life took me on a different path where I learned to live with it and be happy despite pain.  In many ways my wish that I did not go one single hour without thinking about did come true just not in the way I had expected it to.  As you all know, I do not go a day without thinking about having another child and extending our family. Clearly it is not happening how I had wished and hoped for it to happen but it will happen because if nothing else chronic pain taught me that you never give up on something you do not go a day without thinking about.   In the meantime I am going to do everything in my personal power to bring me closer to my dream while still enjoying and being grateful for what I do have in this time and place.

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Being Judged Because of Chronic Pain

 

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“And sometimes I just need to be alone; so I can cry without being judged, so I can think without being interrupted, so I don’t bring anyone else down with me.”

I was recently asked a question if there had been a time in my life where I had been judged because of my invisible illness: chronic pain.  This question was not difficult for me to answer not because I could not think of a time where I was judged for chronic pain but because there have been so many hundreds of times I have been judged due to this invisible illness I could not think of just one.   Even as I write that sentence moments, days, times of judgement and pain run through my mind like a never-ending waterfall of emotions that I cannot believed I survived.  Not only survived but thrived…….eventually.

Following my bike accident and subsequent brain surgery due to a blood clot and TBI (Traumatic Brain Injury) I had half a shaved head, a swollen face, bruises, and scars that took years to heal. I was only thirteen going into the Seventh grade at a new school and three months of recovery was not enough physically or emotionally.  Being the new girl at the age of thirteen is never easy for anyone much less for someone who’s appearance was very scarred.  I was made fun of daily, judged by every classmate except a few friends who are still my closest friends and eventually started eating lunch in the bathroom stall just so I would not feel judged and alone.  Sometimes it is lonelier being around people than it is to be literally alone, which is the loneliest feeling there is.  By 8th grade my hair had grown back for the most part and all of my visible scars had either healed or were hidden.  I tried to fit in by buying the clothes my peers wore and buying the best Acne face wash and slowly I began to make friends.  People no longer made fun of me because I looked: “normal.”  I was young and I had friends to sit at lunch with and people started to like me, the real me, not the outside version.

I had a good year but that did not last for very long.  High School came faster than I could imagine and the physical pain I had felt since my bike accident began to become more consistent and more painful.  I started to get bullied again by certain peers because I was constantly rubbing my face and head without even realizing I was doing so.  The pain was/is located in those places and I was trying to massage to pain away without even knowing what I was doing.  Other people noticed and I was once again made fun of: the freak who rubbed her face all during school.  It was almost like a tic that I could not stop because the pain was slowly but surely taking over my life.  It was around this time that I started my ten year search for a cure to a disease I had never heard of: chronic pain.  I was then judged for making up my invisible illness.  I missed school a lot and spent hours upon hours in doctor’s offices and none of my peers believed me because I looked ‘fine.’  People just thought I wanted attention.  I began to isolate myself from people because it was emotionally painful to have the few people I loved and trusted not believe me because my illness was invisible.  Then I was the girl who was constantly cancelling plans and “lying” about being in pain.  I felt depressed, guilty, and began to believe I was going crazy as no doctor or specialist could help me.  I brought people down and I was not fun to be around.  I did not even like being around myself much less exposing the people I did care for to a version of me that was not me at all.  I was pain: pain was me.

I spent the following ten years being judged because of my invisible illness and even once I hit my rock bottom of pain and ended up at the Pain Rehab Center at the Mayo Clinic and learned how to manage pain naturally, I still was judged.  I was judged by many people for how I lived when I was fighting pain, searching for a cure, and numbing my pain by drinking with friends and then I was judged for living a healthy lifestyle that had little in common with my former life.  I was exercising, practicing meditation, eating well, and no longer had any desire to numb my pain or party with friends.  I lost tons of friends because of my transformation.  I get judged to this day for my lifestyle.  “Why do you need to work out?  You are so tiny as it is?!”  “You never go out and have ‘fun’ anymore, you used to be the life of the party!”  I do not know if it is age or wisdom, but those comments do not bother me at all anymore.  I like me.  There is a beautiful quote that says: “Wisdom is nothing more than healed pain.”

What I have learned over the years is that people are always going to judge you no matter what you do so you may as well do what makes you healthy and happy.  I, personally do not judge others for their actions as I know we are all fighting battles the world may know nothing about.  I will say something if I see someone being judged for their actions, if I have the energy that is.  I have also learned that the more a person judges another, the more unhappier he or she is with his or her own life.   As Abraham Hicks says: “People will love you and people will hate you and none of it will have anything to do with you.”

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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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Feeling Forgotten

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“Being in a hurry to improve yourself, only slows down the process.”

Unknown

I was recently asked by the amazing site entitled http://www.themighty.com to write about a part of my invisible illness no one else is aware of and why it is time to start talking about it.  When you see the two Jessica’s above, you see just how far I have come in my management of chronic pain. The picture on the right (our left) is right before I entered the Mayo Clinic in MN and learned how to accept and manage pain naturally. This picture was taken about thirteen years ago I believe and is when I was at my worst.  I had spent ten years searching for a cure, trying every medication, seeing every doctor I could find, having surgeries, and finally self medicating by drinking copious amounts of alcohol in Boulder, CO. I no longer wanted to live and I had given up.  The smile on that face is not real.  I was in the worst physical and emotional pain of my life and had truly given up on myself, my dreams, and my life.  Fast forward to the picture on the left (our right) to the Jessica of now.  This picture was taken since my daughter was born and the smile on my face is real.  I am not just surviving in this picture, I am alive.  I have been practicing managing pain naturally for about thirteen years and if a picture can say a thousand words, I believe the above two images show a million words.

While I was in the Pain Rehabilitation Center at the Mayo Clinic I  learned many tools to manage pain naturally.  I was in the program for about a month and although reluctant to accept chronic pain in the beginning of the program, the work and dedication I put into managing pain naturally saved my life, literally.  The hardest thing I had to come to terms with was their lesson to not talk about pain to our loved ones.  The concept behind this is that the more we talk about pain, the more we think and dwell upon pain. It takes tremendous work to bring your attention and mind away from your pain and onto something else.  Talking about pain is what is called a pain behavior: a pain behavior is anything that draws attention to our pain.  I still struggle with two pain behaviors: over-doing it in a way to not think about pain and rubbing my face/head/or back when I start thinking about the pain.  I could not imagine not being able to talk to my dad or my loved ones about the pain I was in.  The program was only a month and yes I came out looking like a different person with a very different mindset than I had when I first entered the program.  I stopped looking for a cure, I stopped taking medications, I stopped drinking, I exercised, meditated, and truly was a completely different person than the person my loved ones knew before I went to the Mayo Clinic.  However, I STILL HAD/HAVE CHRONIC PAIN.   I was working on not talking about pain which was very difficult.  The program taught us to tell our loved ones that we were having a “difficult day” when the pain was excruciating but not to use the word pain.  I agree with this concept and I can honestly say it works because at the age of thirty four I am continuing my success in my management of chronic pain despite never finding a cure.

People have forgotten I have chronic pain and that is what I want people to remember.   The title of my website is No One Gets Flowers For Chronic Pain which of course is a metaphor.  People, who are as fortunate as myself to be able to accept pain and live the life they desire still want support and encouragement.  Many of my readers email me and ask the same question: “How are you able to work when you have chronic pain?  I could never hold down a job with this severe pain?” Many of the people who ask me this particular question are either on disability or have someone who helps them financially as they are unable to work.  I want to be clear. In  my first job as a social worker I worked thirty two hours a week, not the average forty most of our society works.  I did not make a lot of money but I enjoyed what I did, I was able to take breaks to practice meditation/mindfulness, and I worked enough hours to receive benefits. Because of time management and being able to incorporate my tools in managing chronic pain naturally, I was able to be a great social worker. Years later my daughter was born and my dream of becoming a stay at home mom came true.  For those of you who are not stay at home moms, let me be the one to tell you that being a stay at home mom is WORK.  I have spoken to many women who have been both stay at home moms and moms whom work outside the home and I have yet to meet one woman who has not said the following: “Working outside the house is so much easier. How do you do it?  I need to be around adults and just get away from mommy world for a while!  It is so hard!”  The only difference for me in each of  my careers: one as a social worker and one as a stay at home mom is that when I worked outside the home my job was finished for the day.  Being a stay at home mom is the best thing to ever happen to me and I love it with all my heart but there are no breaks.  I think it is very important that our society and those of us who have chronic pain remember that no woman is ever: ‘just a stay at home mom.’ I cannot think of a more important job, nor difficult job than raising a child that you brought into the world.  For those with an invisible illness such as chronic pain the job of being a stay at home mother becomes that much more difficult despite its joyfulness.  Yes, now I am a stay at home mom and writer but I still have chronic pain.  Some days are really hard.  Some days I want to tell the people I care about: “I am in so much pain.  I know I have come a long way but I still cannot do everything you would like me to do because I have to practice moderation and listen to my body if I am going to continue to live in a healthy way despite pain.”  I still get anxious and at times depressed because of pain.  No, I do not talk about it and it happens so infrequently that I do not feel the need to.  However, I want/need people to understand that just because I look so much better on the outside and I am healthy, I still need support and understanding. There are reasons I say no to doing certain things and most of the time it is because of my invisible illness.  There are days I am not the energetic, happy, laughing Jessica because I am having a “difficult day.”  Yes, it has been years upon years that I left the Mayo Clinic and have been managing pain naturally and no longer allow pain to interfere with my joy but the pain is still there.  Sometimes when one stops talking about something, they feel forgotten.  There is a reason chronic pain is called chronic: it never goes away.

When someone loses a loved one they are given flowers, cards, food, and everyone is busy planning a ceremony and for days people comfort the person who has faced a loss.  However, following the funeral and a couple weeks of mourning it is as if the death never occurred.  There are no more flowers, cards, or dinners being made.  However, the feelings of loss the person feels are still there and probably worse than they were when he or she lost their loved one.  Now this person has not only lost someone they love whom they will never see again (so some believe) but have also lost the support and love that was given to them for the weeks following their loved one’s death.  The correlation to this and to chronic pain are extremely similar.  I want and I know those of you who rarely talk about pain and are managing it well want to be remembered and supported.  We still have chronic pain whether or not we talk about it.  We need love, support, and encouragement from those we love.  Most of all we want to be remembered.

 

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