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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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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.

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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.

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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.

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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.

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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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