Fearing the Future

“All negativity is caused by an accumulation of psychological time and denial of the present.  Unease, tension, anxiety, stress, worry-all forms of fear are caused by too much future and not enough presence.   Guilt resentment, regret, anger, sadness, bitterness, and all forms of non-forgiveness are caused by too much past and not enough present.”

Eckhart Tolle

I never truly knew how much I would learn from being someone’s parent.   My now, five year old daughter does not realize how much she teaches me.  I always thought that I would be the one teacher in our mother/daughter relationship.  However, I am not sure I have ever had a better teacher than my little girl, Kayci.  She teaches me how to be a kid again and enjoy the simple things in life.  She helps me to see things that I have seen for thirty five years and yet took for granted.  More than anything, she has taught me to live in the moment; something I have struggled with my entire life.  Kayci turned five a few months ago and lives in the present moment for the most part.  I noticed recently that she started talking about the future and the past a lot more frequently than she had in the past.  I do not want her to lose that sense of living in the moment and I want to live in the moment more than I do.  I worry about the future and cry about the past much more than any person should.  Worrying and despair increase my chronic pain and make it more difficult for me to manage it well.

I asked my daughter to help me remember to live in the moment.  We made up a game where if one of us started talking about the next day or the next week we would remind the other person to stop and come back to the present moment.   Kayci who is wise beyond her years said to me: “Mommy, if we talk about tomorrow we will forget today.”  Having someone, even if that someone is only five years of age remind me that I should not think about tomorrow is very helpful in my quest to live in the present moment and work on my never ending game of worrying.  If you have someone you love in your life and you spend a lot of time with (even if they are toddlers) ask them to play this game with you.  It is not only helping me but training my daughter’s brain at an early age to live in the moment; a lesson I wish I had learned as a child.

Living with chronic pain is hard enough then add on anxiety/worrying and you have a whole heap of new problems.  I have chronic pain and anxiety and there are times that I am not sure what is worse.  In all honesty, although I manage pain well chronic pain is the most difficult thing I have ever been faced with.  Anyone who has this invisible illness can attest to how difficult this disease is.  As far as I have come in my journey with chronic pain, I still struggle at times.  At the age of thirty five I struggle with anxiety and worrying about the future a lot.  My life is far from perfect and there are many things I want to change but change takes time.  There are many dreams I want to come to fruition but again those take time.  I try very hard to focus on my biggest blessing and that is clearly my daughter, Kayci.  Although I get frustrated with her at times, like all mothers do, I make sure she knows how loved she is and how special she is to me.  She has become my greater teacher.

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.

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.”

 

Stuck Between Hope and Hell

“I’m so tired of being stuck between hope and hell.”

Recently I had to see my family doctor for a standard check up, something I enjoy putting off for as long as possible.  During the physical I had to once again go through my medical history which clearly includes brain surgery due to bike accident and subsequent chronic pain.   The doctor (with good intentions but not the best listening skills) explained to me how tight and ‘off’ my neck was and had I ever considered surgery for chronic pain.  I am beginning to think that patients are given the medical history forms to fill out just so the wait does not seem as long in the waiting room.  Sometimes I am not sure how to make it more clear to doctors that I spent a third of my life searching for a cure, having multiple surgeries to cure chronic pain, and being on every medication listed from A to Z.  So yes,  I not only once considered having surgery to rid my body of pain but had surgery: multiple surgeries.  The conversation then changed to where I explained how I manage pain naturally and that is a subject I enjoy talking about so I am happy we were able to get away from the pain talk.  I just needed a damn physical for something else going on in my life that has zero to do with chronic pain.  However, this appointment brought back a lot of memories and I started thinking about all of my readers who are still stuck between hope and hell.

When I first began my search for a cure I was a teenager.  I believed that if someone was a doctor and wore a white coat he or she was correct and I did whatever they asked of me.  One doctor told me that if nerve endings were cut off from the inside of my face my pain would go away forever.  My hope went up so high that I did not even care that the procedure was painful and that I had to be awake for the entire process.  Cure?  Sign me up!  I remember being so happy and relieved right before the procedure.  I have to say of all the procedures/surgeries I had this was by far the most painful and difficult.  I was to the point of screaming as nerve endings were cut inside my face.  The doctor said I should feel better and pain free in mere hours after the surgery.   My dad took me home and I waited and waited and waited some more.  I knew once I reached my eighth hour of waiting that the pain was not going away and if anything the pain was only worse.  I went from huge hopes to the depths of hell within a twelve hour period.  I lived like this for ten plus years: hope to hell, hope to hell, hope to hell then finally just HELL.

My hell finally came to a halt when I stopped searching for a cure.  I understand how frustrated so many of you are in your journey with chronic pain.  You do not know who to believe.  Pain is increased by anxiety and your anxiety levels are through the roof.  Making huge medical decisions is extremely stressful.  You have doctors giving you different options: surgery, medications, different tests, different therapies and you do not know which to pick from.  I can only speak from experience and I do not fault or judge any of you for how you choose to manage your pain.  I tried EVERYTHING.  Not one thing worked until I came to a point of acceptance and started learning how to manage pain naturally.  It was a complete lifestyle change.  Some of the times were hellish but over time my hope went up and up despite the many changes I had to make in my life.  You need to do what you believe is right for you in your own personal journey with chronic pain.   I only urge you to listen to your intuition.  If something does not feel right in your gut, do not do it.  Often times the more surgeries and medications we take for chronic pain only make the pain worse so you must listen to your inner wisdom.  No matter what you will be okay.  I had many surgeries that made my pain worse and I am in a good place in my journey with chronic pain.  Sometimes you feel you have to try everything before coming to a point of acceptance.

Please know that I understand you battle between hope and hell and anyone can email me if they have a question or need support.

kaycik12@gmail.com

What You Do Not See

They say a picture says a thousand words; I beg to differ.  Have you ever gone on social media and seen pictures of mothers disciplining their children or spouses on separate sides of their couch with tears running down their faces?  Have you ever seen videos on social media of friends arguing, young girls crying in dressing rooms because they think they look ugly or fat because of a certain outfit?  No.  People take and show pictures of the good times and when they are able to put a smile on their face even if it is not real.   Who wants to showcase the raw, true pain a person may feel at times?  We hide behind our shell of a body pretending everything is wonderful inside when at times right under our shell we are falling apart.

I took this picture this morning after my workout.  I cannot remember the last time I took a ‘selfie’ as I am beginning to find them rather ridiculous (no judgement to those who take them, rock out!)  I may be sweaty and mildly tired as I had just finished an hour workout and it was before six in the morning but I look like a healthy, happy, focused, in control person who is ready to get the day started.  And for the most part all of that is true.  However, I will tell you what you do not see.  You do not see the girl who was in bed in the middle of the night close to tears because of chronic pain.   You do not see the beating of my heart and the adrenaline running through my veins at four forty this am as I remembered the physical pain I had felt in the middle of the night.  You do not see the fear in my mind that I will not always be able to manage chronic pain as well as I do now.  You only see my shell.  As most of you know I manage pain naturally after spending a third of my life on medications and living a life of pain.  There were not many pictures taken for a good ten years of my life and the ones that were taken were mostly at parties with my friends that sadly I do not remember because I was too drunk, self medicating my physical pain.

At three in the morning last night I was having a very difficult time with pain, which does happen from time to time despite how well I am able to manage this invisible illness.  I felt like I was suffocating in pain and truly found it hard to breathe.  Call me crazy, but at that moment I did not think about grabbing my phone and taking a quick selfie.  If I had then you would see how I really felt mere hours before this picture was taken.   Now, some of you may be thinking if the pain/anxiety was so terrific how and why was I working out before six in the morning?  Believe it or not but I was exercising because of chronic pain and anxiety.  Fifteen years ago I would have just laid in bed with a racing heart and have spent hours crying solely focusing on pain.  I no longer do that.  I had a bad night but I refuse to allow a bad night to control today.  I get my butt out of bed and exercise which does wonders for both my personal chronic pain and anxiety.

Many of us, myself included seem to compare our lives to the pictures we see of others.  Comparison is truly the thief of joy but more than that you and I are comparting our lives to pictures, not actual situations.  A picture does not say a thousand words for if it did there would be many more pictures taken of the pain and sadness we all face during our lifetime.

Worrying about Worrying

“I am an old man and have known a great many troubles, but most of them never happened.”

Mark Twain

Most people with chronic pain also have anxiety and/or depression.  Some do not know which came first the anxiety or the pain: you know the whole chicken and egg theory that is way overused!  I know what came first for me: anxiety.  I have had anxiety since I was my daughter’s age and she just turned five.  I had many reasons to be worried at a young age and sadly they followed me into my teens and adulthood.  My bike accident and subsequent chronic pain did not help my anxiety at all.  Doubly whammy!  Anxiety and chronic pain are a vicious cycle that one has to find an end to.  Increased anxiety leads to increased pain and increased pain leads to increased anxiety.  The fear of pain and anxiety is often times worse than the pain or anxiety itself.  People who do not have chronic pain notice physical affects of worrying and stress.  People complain of headaches when extra stressed, stomach aches when anxious events occur in their lives, and a multitude of other ailments (all acute.)  The body and mind are so connected we forget the affect worry has on our chronic pain.

Yes, I have come to an amazing point in my journey with chronic pain and have been m managing it naturally for years.  However, I still have a lot of problems with anxiety and spend more time worrying about things than anyone should.  I have noticed lately that I find myself focusing more on my pain as I have begun to worry more about things.  I have not conquered chronic pain and do not plan on conquering my habit of worrying but I am going to do something about it.  My daughter and I were in Barnes and Noble this past weekend and a book randomly jumped out at me: “The End of Worry” by Will Van Der Hart and Rod Waller.  I have been finding time to read each chapter carefully and with an open mind each day.  I read it slowly with my trusty highlighter and do the exercises it asks of me at the end of each chapter.  I am thirty five years old.  I allowed chronic pain to steal ten years of my life and I am damned it I am going to allow my unhealthy habit of worrying steal more of my time than it already has.  I am tired of complaining about my anxieties and I want to feel in control of my own happiness.  I believe that anxiety is not only stealing my joy and peace of mind but keeping me from fulfilling the dreams I am determined to make come true.

No one is in charge of your happiness, health, or peace but you.  No one is going to save you.  Life is not a fairy tale or one of the sappy movies that I am in love with.  With that said we all need a support system and to be around people who can understand what we are going through.  We all need love and support.  However, it is up to you and me to take charge of our lives.  You deserve to feel empowered and filled with peace and joy.  Those of us with chronic pain have a lot of crap on our plate and I have found a way to live a happy life despite pain but I am exhausted from living with this anxiety.  I am tired of worrying about worrying and now it is time I do something about it.

 

See My Strength: Not My Pain

“I’ve lost track of the number of times in my life that I’ve wanted to give up.  The number of days, of moments, when I felt I could no longer tolerate the pain or keep up the pace of my life.  But, I’m STILL here.  Don’t ever tell me I’m weak or lazy.  Just like you can’t see my illness, you can’t see my strength.”

I have been sharing my story for over three years: the good, the bad, the scary, the inspiring, and the ugly truth of my journey with chronic pain.  At times I have shared stories of some of my amazing, strong readers who also have an invisible illness.  This week I interviewed a person whom I will call Patrick (in light of St. Patrick’s Day) and his answers were so raw and so well said that I feel the need to share exactly what this young man wrote.

1.  When did you know that your pain was chronic, as is not going away as acute pain would and do you know what caused the pain?  My pain first started in June, a few days after my 18th birthday.  At the time I was in a program called Seal Fit. Seal fit is a program that trains you mentally and physically to go into the Navy Seal training and make it through the cut.  During one of the workouts, I was on a rowing machine.  An intense pain shot down my lower back through my left leg and into my foot.  I had never experienced anything like this.  I thought I had pulled a hamstring.  A few months passed and the pain only got worse. At the time I was trying everything that would help my recovery.  I was doing special stretches, using a TENS unit, and applying kinesiology tape.   I was still training just not as intensely.  The pain eventually got to the point that I could no longer take it and I went to see a doctor.  They thought I had a pinched nerve which caused sciatica and I was sent for an MRI.  I remember sitting in a pain clinic in Tallahassee, FL with my at the time girlfriend.  A nurse came in the room to alert me that a doctor would be in shortly to talk to me. I was facing away in a chair and twisted around to look at her.   As soon as I twisted around, the nurse gave me an alarming look and advised me not to twist my body.  I remember being so confused. How could twisting make ‘this’ any worse?  It didn’t make sense.  I then received what would be the first deep sinking feeling of many to come over the next two plus years.  I had a partially congenital  condition where my L5 vertebrae did not form on the left side.  The right side had broken from a previous dirt bike accident and my vertebrae had fallen out of place on my spine, crushing my spinal cord and sciatic nerve.  There was fifty to seventy five percent slippage of my spine.  They explained it was close to causing partial paralysis, which means it would have paralyzed my left leg.  That explained why I did not have feeling in a large portion of my leg.    I was then  scheduled to see a neurosurgeon to talk about having my spine fused.  I remember the first time I met this doctor, he seemed charismatic and confident.   At the time, I had no doubt that this nice man was going to swoop in and take all my troubles and pain away.  However, first impressions can always be wrong.  At the time of the spinal fusion consultations I was only able to walk about five feet at a time without stopping and getting off of my feet. The doctor explained that they were going to go in and pull the vertebrae back into a place and fuse it with rods and screws.  It was a “simple” procedure that lasted two hours and I would be able to go home in two days.

          My day finally came and I remember sitting in the waiting room waiting to go into surgery.  I said goodbye to all of my family whom all looked so worried, especially my dad.  This whole ordeal had caused some difficulties between my dad and I.  Our relationship had never been perfect and before this happened I worked for him.  When the pain first started he thought I was making it up to get out of work and that caused even more tension and fighting in an already difficult relationship.  That all changed once he was told that my spine was in fact broken.  I remember seeing him cry as they wheeled me into surgery and at that moment I knew he felt very bad.  I sat outside the OR doors for three hours.  I was finally on the table as they told me to count as they applied the anesthesia.  I was so relieved that this nightmare was about to be over.  I had no idea that my nightmare (of pain) was just beginning.  My two hour surgery ended up being six hours.  I woke up to feeling as if I was cut open with gas poured inside my body, sewed back up again as the fire was ablaze inside me. I ended up staying in the hospital for a month despite being told I would be there two days.  I really cannot convey the physical pain I was in, I feel as if I have somehow blocked out those days.  I could not walk, talk, and did not sleep for an entire week following the surgery.  The strongest IV medications would not even knock me out: I felt like I was dying.

I had never experienced time moving so slowly.   Minutes felt like hours, days like weeks.  The month stay felt like a year. I could not even put on my own shoes or clothes: it was humiliating.  I always promised myself I would die before I ever went back to that state of helplessness.   I cannot explain how hard that was and how much it took from me because it just isn’t possible and no one can imagine how close I came to dying unless they had seen it themselves.   Every blackout from pain and from my inpatient stay where they were trying to teach me how to walk again was worse that I could have imagined.  But, that was just the physical pain and I was still holding onto hope.

So, to answer when I knew the pain was not going away, I would like to say it was after the hospital and multiple rehab centers I went to.   But, that would not be true.  I remember my positivity and hope as a mask.  I was doing it more for my family that I was for me.  I could feel it.  I knew what was going on.

2.What changed in your life due to your invisible illness? 

I honestly do not know how to answer that because it changed my whole life.  It is not as if it limited some limitations and I had to adapt, it gave every limitation.  Pain changed everything.  No aspect of my former life was the same.  I am not the same.

3. Do you have a good support system and/or people or loved ones who understand what you are going through?

I have people who think they understand and want to understand.  However, the only person who I think understands is my mom because she sat there and watched everything I have gone through.  I do not know how she did it.  I know what I was going through was hell, but she had to sit there and watch it feeling helpless.  Many people say: “Oh trust me, I get it” because they have felt pain and/or some type of sadness but they do not really get it.  People have no idea what chronic pain is like and when a person tries to compare it to the pain of an end to a month long relationship or an argument with a friend, I want to scream.

4.  Have you had to stop any of your passions due to chronic pain?

One of my most loved things was skateboarding. Skateboarding was a mental and physical release for me and a hobby my best friend and I shared.  I am unable to skateboard anymore and that loss hurts deeply.  I also loved mountain biking and that passion is now gone as well.  However, my biggest dream that is lost is my dream of joining special operations, a dream I have had since the young age of three.  That dream was crushed in front of my eyes and I never even got a chance to try.  Chronic pain has taken every passion from me except for music and software engineering.

5.  What emotional aspects come along with chronic pain?

I would love to say that it causes you to feel down at times but you are able to get right back up but that is not the case.  I never wanted to die so strongly in my life.  I do not think I have gone more than two days in the past two years without wanting to die.  It’s not a figure of speech as some may use this gut wrenching phrase: I want to die.  I am not unstable suicidal as I could never do that to my family or loved ones.  I feel people with chronic pain are the only people who would understand this feeling.   It is more that I want to opt out of this life with chronic pain, not actually die.  I just do not want to be here most days because it is a constant fight: me against pain and it is exhausting.  Chronic pain causes a heavy depression.  I feel as if I have been kidnapped and I am being tortured however it is my own body torturing me.  For me, a lack of sleep is a huge affect chronic pain has taken on my life which only intensifies the pain and depression.  Sometimes, I feel like I died in surgery and this is hell.  I’m not crazy, I am clearly not dead or in hell but that is what this life now feels like.   When people hear what happened to me, I get one of two things.  Either people are skeptic and do not believe me or they look at me as if I am a toy that is now broken forever.  Neither one are encouraging or helpful.

6.What keeps you going?  How do you stay strong?

Sometimes I do not even know how to answer that.  I know it is partially my family, especially my mom.  I want to succeed for her.  I know she needs that.  The other is that I have always felt different from the majority of people.  I have gone through other hardships in life and forced myself out.  I do not want to see chronic pain win.  This is MY life and chronic pain does not deserve to take over MY life.  I just want the pain to die.  I want to kill the pain.  I still have goals and dreams although they are hard to see through this filter chronic pain has placed over my life.  I know I still deserve to be happy and have my dreams fulfilled.  I just need to find a way to get there.  I wouldn’t be strong if I gave up the feeling that I deserve to be happy.  We all deserve happiness.

7. Have you lost any friends due to chronic pain?

I had a girlfriend at the time of the fusion whom I had been dating for seven years.  I found out she was cheating on me as I was in the hospital.  I broke up with her and so I definitely lost her.  I lost friends as well.  I now realize some friends were only there to get out of me what they could get.  I do not regret losing these people and I do not miss any of these people.  If anything that is the only good chronic pain has done for me in my life.  Every single person I lost because of chronic pain does not deserve to be in my life.  You can look at it as if chronic pain purged all the toxic people from my life.  I am actually grateful for that.

8.  Do you see any good coming from your invisible illness?

I do in some ways, not everyone could handle this.  Not everyone has the view and perspective on life that chronic pain forces you to see. I do not think you can see your self worth or your true strength until you have been completely torn apart.  I know what I am capable of and can survive because of this invisible illness.  Not everyone could survive this and I am surviving it every day.

9.  Where do you want to be in five years? 

I want to be making a difference in the world.   I want to be working for Google or another technology company with the power and will to change the world.  I have always been passionate about technology and am currently in a program for  Self-Driving Cars.  Self-driving cars will bring a new lease to the blind and disabled.  More than anything though I want to be happy.  I want chronic pain to be behind me.  I am tired of being in this hole with no way out. I just want to look back and say that I made it through.  I feel like every time I get close to getting out of this hole, the hole only gets deeper.  I just hope by that point I have found a way to escape.

10.If you could tell people who have never had chronic pain something what would it be?

People without chronic pain are so lucky and they do not even know it.  I feel as if so many people are ungrateful for the healthy lives they have and how much worse things could be.  People seem to complain about this miniscule things.  Why don’t you try appreciating your health and life for once instead of trying to make the world revolve around you?  That may sound harsh and I apologize.  I do not believe everyone is like this, I have just found this to be in my certain situation.   People focus on what other people think too much when most of the time the other person’s opinion means nothing!  I just want people to realize that things could always be worse, including my situation.  That gives us all a reason to appreciate the things we overlook in life, and instead of focusing on the bad we should focus on the good and try to make it that much better.

All I want to say regarding this person is that he is only twenty years of age!  Is that crazy or what?  He has wisdom and strength some people never acquire during their entire lifetime.  I may have changed very tiny things in his response but this is his story and it reminds me so much of mine that it breaks my heart.  I know his pain and I know so many of you know his pain.  However, he has hope and determination.  At the age of twenty I did not have that hope and determination.  He has no idea how strong he is and I know this post will help far more people than he even knows.

Forced to Grow Up too Fast due to Chronic Pain

“Girls my age are all: I wish I was skinnier, I wish I was tan, I wish my hair was longer, I hate my teeth, I want a newer car.”  And I am over here like I wish I could walk down these stairs without wanting to scream!”

Recently a young reader reached out to me who is suffering from chronic pain.  When I began writing four years ago about my journey with this invisible illness I believed my target audience would be mothers with chronic pain and I would be receiving emails from women who are trying to balance a life with chronic pain while taking care of their children.  I am a mother with chronic pain managing it well and am able to help those out there who cannot seem to get a grasp on this indescribable, invisible pain.  However, over the years I have received more emails and been contacted by older teenagers and young adults more than anyone else.  I was thinking about this last night and realized my target audience are those young adults who in the wraths of pain.  This made perfect sense to me and I had an Oprah AHA moment.  The worst years of my life were during the ages of eighteen to twenty two.  I was at my breaking point with chronic pain and life in general.  I can still remember, all too well how much my invisible disease had destroyed every aspect and facet of the person I was prior to chronic pain taking over my life.  During my young twenties I reached my rock bottom and it was at this time that I was literally drowning in pain and honestly wishing I was no longer alive.  I was not living any kind of life and to say I was surviving is even a stretch.  Therefore it does make sense why I have helped or guided those who are at that young age because I understand their pain better than I understand the pain of anyone else.  The people like who I am writing this post for do not realize that their words help me in ways I never thought possible.  It astounds me how strong this person is and how he is in such a better place than I was at his young age of twenty.

He brought up a very important topic that I believe will capture the eyes and minds of many young people who are drowning in their own pain.  When I was around the age of twenty I hated everyone and everything in the world.  Worst of all, I hated myself.  I isolated myself from all my peers because no one understood what I was going through and I could not bear to hear their problems because although I looked okay on the outside, I was near death on the inside.  Hearing my friends talk about cramps or a recent breakup from a two week relationship made me angry.  Hearing the problems of my friends made me want to scream: “YOU HAVE NO IDEA HOW LUCKY YOU ARE!  I WISH I HAD PROBLEMS THAT ARE SO EASILY FIXED.  I MAY DIE BECASUE OF THE CONSTANT DAMN PAIN I AM IN EVERY SECOND OF EVERY DAY. I WISH FOR ONE DAY YOU COULD WALK IN MY SHOES AND YOU WOULD NEVER COMPLAIN OF SUCH FRUITLESS MATTERS AGAIN. AND MAYBE YOU WOULD UNDERSTAND ME BECAUSE NO ONE ELSE DOES!”  However, I never said these words to anyone.  I either retreated to my bed to cry or asked my friends to have drinks with me.  I knew alcohol would numb my physical pain and I could then bear to hear about their problems.

I am thirty five now and I feel younger than I did when I was twenty.  I never found a cure to my chronic pain but I did find a way through the pain.   I still have chronic pain but it does not consume my life as it once did.  I can now listen to my friends problems without resentment or anger.  No one understands a pain or a struggle unless that person has endured that certain pain or struggle.  Anger and resentment towards anyone or anything only intensifies our own struggles and our own pain.  We are only hurting ourselves.  However, I want to remind anyone who is reading this who knows a friend or loved one with chronic pain that your loved one is suffering.  He or she is not selfish and wishes more than anything that they could listen to your problems and be there for you.  However, they cannot do that.  If you know someone who is truly suffering from an invisible illness understand that although he or she looks okay on the outside, that person is literally fighting for their life and doing the best he or she can.

This post is dedicated to Ethan: Thank you for your questions and please know that you are (like all of you) so much stronger than you believe.

A Letter to Caregivers to those with Chronic Pain

“I am a strong person but every now and then I also need someone to take my hand and say everything will be alright…”

Unknown

I was recently asked by the very informative site http://www.themighty.com to write an article on what I would tell my parents what I feel they did right when I was suffering from chronic pain and also what I feel they did wrong.   I am going to go back in time and write a letter to my dad, who was my closest support system during all the years I was suffering from chronic pain.

Dear Dad,

I know it must be really difficult to see your only child going through such hell because of physical pain no doctor can fix.  I feel guilty all the time because I know I am not the daughter I once was and I miss me as much as you must miss me.  I know I can be really hard to deal with and you are usually really patient with me.  I am angry, depressed, anxious, scared, and feel worthless.  I do not even want to get out of bed anymore and the only reason I do is for class or a doctor’s appointment.  You are spending so much money on all these procedures, doctors, medications, and everything else we are trying in order to rid my body  of this horrific pain no one can see.  Some days I want to just die and then I think of what that would do to you and I cannot imagine hurting you more than I probably already have.  I hate myself dad.  I want to tell you how I keep going and the main reason I am able to keep going is because of you and how supportive you are during this awful time for me.  I know no one can no longer see my scars or physical pain and many people think I am making this pain up.  You never doubt me.  You always believe me and never once have questioned whether or not I am in actual pain despite not being able to see my pain.  I never have to prove anything to you.  You believe me and I have never doubted your belief.  When I feel as if I am going crazy, I remember that the person I love more than anything has never once doubted an illness he is unable to see.

You take me to all my doctor’s appointments and I am no fun to be around right now.  I look at you and all the effort you put into helping me find a cure and I know that I cannot give up.  You must really love me to take so much of your time to sit in waiting rooms with me half of both our weeks!  I always feel so guilty when a new medication does not work.  I always feel guilty when I have another procedure or surgery that the doctor promises me will work and it fails.  I do not even feel like the medication or the surgery failed, I feel as if I failed.  However, you never look at me like a failure.  You never get down and out or seem consumed with worry as I do.  You probably hide it very well because you care so much for me.  You truly believe something will eventually work and how can I give up if you are so adamant that we will not stop until something works for my invisible illness?  You keep me going.

I continuously feel as if I am letting you down and yet when I look into your eyes I do not see a dad who is upset with me.  Only once can I remember you getting really frustrated with me because I did not believe a certain therapist/holistic healer could help me.  You drove me into the city of Philadelphia and sat in the waiting room as I reluctantly and unwillingly went into the therapists office who specialized in invisible illnesses.  I knew she could not help me and did not have an open mind and left her office crying endless tears.  You got very upset with me on the drive home because I refused to ever go back to that office.   You were not happy with my negative attitude and you yelled at me in frustration that crying would not help anything.  I am sure you were not really mad at me but the invisible illness.  It has to be frustrating for you to keep trying everything in your power to help me and my pain and yet nothing helps.  You are human after all.  I know deep down I am not letting you down but sometimes I forget when you get frustrated with me.

The two most important things you did for me during my darkest hours of chronic pain were believing in me and my invisible illness and never giving up on me.  What more could anyone ask for?  All I really needed was to be believed, validated, and supported.  I truly cannot think of anything  you could have done differently. In many ways you saved my life.  Even now at the age of thirty five you are the one person who knows the ins and out of my journey with chronic pain.  Sometimes I think you forget I still have chronic pain because I never talk about it and manage it so well and I just want you to remember that it is still there and there are times when I am extra quiet or cranky because of my invisible illness. Even at the age of thirty five, a mother myself I need someone to hold my hand say everything will be alright.

Love,

Your daughter Jessica

This post is dedicated to my hero also known as my dad.

You are NOT Your Pain

“Just a reminder in case your mind is playing tricks on you today: YOU matter.  You’re important.  You’re loved.  And your presence on this earth makes a difference whether you see it or not.”

Unknown

Recently someone I look up to and deeply respect asked me a question that truly made me think about myself and my self-love.  She asked me why I thought it was so difficult to love myself the way I love my daughter, my family, and the people I write for who are suffering from chronic pain.  I instill selflove into my daughter daily and try hard to teach her the value she has and the importance she makes to those around her.  I want her to love herself as much as I love her so that she will always feel that she is enough despite the challenges life will throw at her during her time here on Earth.   I consistently write about self love and see the value in each person who writes me for help or support during the darkest hours of their life.  I know their pain and how severe it is because my life revolved around chronic pain for more than a third of my life.   The number one reason a person with chronic pain dies is by suicide.  I understand that, I had many thoughts of ending my own life fifteen years ago due to this insidious, invisible, horrific disease that I have been lucky enough to come to peace with.  I believe self love and self worth to be more important for a person than any other attribute or value a person has.  I don’t believe one can be happy without self love and a sense of being enough.  I do love myself and I am very proud of how far I have come in my journey with chronic pain.  However, I do not always feel enough.  There are times when I doubt my self love and I am my biggest critic.  My thoughts are too often negative and my mind plays more tricks on me than I care to share.

I truly thought about why I found it hard to love myself as I love and care for others and many reasons came to mind: difficult childhood, horrible boyfriends in my past, losing friends, etc.  However, the number one reason hit me this morning as I was exercising and listening to a Ted Talks video.  There may be many reasons for my difficulty with self love but I believe chronic pain is truly what stole my sense of self love and value twenty years ago and I am still suffering the side affects of that loss despite how well I manage pain now.  I spent so much of my life in physical and emotional pain that it changed me.  I believed for fifteen years I had no value to anyone and that I was just a burden to those around me because of chronic pain.  I lived in guilt, shame, and self-hatred.  The hatred I had for chronic pain began to become a hatred towards my own body, mind, and spirit.  I lost myself to pain.  I am only thirty-five years old so to spend that amount of time feeling like I would have been better off dead than to be alive with unrelenting pain would definitely have deep rooted affects that I am now carrying with me.  I do not hate myself anymore and I am very happy to be alive.  I am also very proud of myself and at times find it hard to believe I made it this far in my journey with chronic pain.  My invisible illness does come out at times but I am able to look at it and smile and focus on what is important to me.  Yes, I have difficult days that pain does impact to a  point but overall pain does not define me as a person.  Although, I am managing chronic pain well and have been for years I still suffer from the emotional side affects of this illness.

I still find myself comparing my life to others.  I still focus on the future too much instead of enjoying what I have right now at this present time.  I still allow my mind to have too many negative feelings about myself.  I made it through chronic pain and have a life I never dreamed of despite my invisible illness.  However, chronic pain is like an Earthquake: the grounds eventually settle, houses are eventually re-built, and societies are slowly brought back together.  However, it takes many, many years for both the Earth and the people who reside on this ground to recover and find their bearings again.

You are not your chronic pain.  I do not want anyone to feel as I did during the most tumultuous times in my journey with chronic pain.  I did not think I was important.  I did not think I mattered to anyone in the world and I believed the world would be better off without me. I believed my presence on earth made a difference but a negative difference.  I was unable to see or hear other stories where people made it through their journey with chronic pain as I did.  You are still a valuable, loving, important person.  Chronic pain may rob you of many things right now but chronic pain does not define the true essence of who you are.  You are not your pain.  One day, you will make it through this journey and come to a peaceful place.  I need you all to believe that you are more than an illness. You are a strong, important person and the world NEEDS you.