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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

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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.

 

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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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Fearing the Future

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“Fears are stories we tell ourselves.”

Unknown

Above all of you lie a sentence with only six words included that sum up fear better than any phrase I have yet to see.  We are all afraid of something and many of us spend an exuberant amount of time focusing/fearing our futures.  We are afraid of not getting what we want and we are afraid of getting what we do not want.  I received an email recently from a young girl in college who has been following my blog for a couple years now.  She is a very kind, strong young person who has had chronic pain for a couple of years and is trying the best she can to manage her pain while working towards achieving a college degree in social work.  She asked me in her very encouraging email if I had remembered her and what my readers do not realize is that I find it very hard to forget any of you that reach out to me directly for help and support.  I am beyond flattered and amazed that so many people read my story because I do manage pain in an unconventional way. If I was the younger Jessica who was spending her days searching for a cure to chronic pain I would have never read a blog about a woman who has accepted chronic pain as part of her life and manages that pain naturally.  Then there are those of you who not only read my life story but you take the time out of your busy life that I know is not easy as you have an invisible illness to write me just to either say thank you and let me know that I have helped you or to ask me genuine questions.  You tell me your stories and you then see that I will never judge any of you for how you live your life or how you choose to manage your pain and you begin to trust me and many of you take some, if not all of my advice.  How could I forget any of your personal stories when I have not only lived/live your story but am astounded by your personal strength and gratitude.  With that said, of course I remember this young person who I am so very proud of and almost envious of in some ways.  She is in her young twenties and is in a place with her personal journey with chronic pain that I was not able to get to as early as she has.  However, she brought up to me some of her fears regarding her personal future and how she will be able to follow any of her dreams with this invisible illness: chronic pain.

When I was around the age of nineteen/twenty years of age I had more fears about my life than I had when I had brain surgery because of my bike accident.  I do not know what is worse living with chronic pain or the fear of pain itself and what we tell ourselves pain will steal from us.  I never thought I would have a family, be a mother, have a college degree or be the person sitting here writing about how I, Jessica Martin is managing pain naturally.  I  believed with my whole heart and soul that chronic pain had robbed me of everything I had ever wanted, desired or dreamed of.  I lived in pain and fear every second of every day.  The fear/anxiety made the pain worse and the pain made the fear/anxiety worse.  Ten plus years living in a never ending circle of pain and fear/fear and pain.  Turns out all the things I was fearing never happening because of chronic pain happened and all the things I feared of happening due to chronic pain never happened.  Do I have the life I would have had I never fallen off of my bike and chronic pain? No.  However, I have learned that fear of the unknown was just a story I made up in my head that caused me more emotional/physical pain that was truly unneeded.  Although, my life with chronic pain has taught me that fear is nothing but a story we tell ourselves, I still live in a lot of fear and that fear does have an impact on my pain levels.

I do not fear the things I used to fear when I was living in my darkest hours of chronic pain.  However, I am still a very worry filled person.  I spent most of my life being afraid and now I have to re-parent/re-teach my inner self to not be afraid for everything does work out.  I am not afraid of the little things in life that some may be afraid of.  I look forward to sky diving one day and I love roller coasters and haunted houses.  Those things do not scare me in the least, they excite me.  However, the big things in life scare me.  I still am afraid of the things I dream of happening not happening and the things I am afraid of happening coming to fruition.  Has my journey with chronic pain taught me nothing??  Everything I have ever feared not happening has happened just not  how I envisioned those certain life blessings to happen.    I know I need to let go and trust the process of life while working towards what I do what and I must stop living in a state of fear.  From childhood to adolescence to early adulthood up until my thirties I have had fear in my life and I did not know better and do not fault myself for those fears.  I do know better now.  However, to be fair to myself I am in the process of re -wiring a fear based mind into a peaceful, calm mind.   I can read and write as many quotes as I want to and I can logically know that fear is just a story I am telling myself but I am human and changing the way your mind works is a process.  Hell, it took me years to re-wire my brain from constantly focusing on pain.

This post is meant to thank the people who take time out of their day to remind me of what I am writing and remind me of my own personal story.  You are kind and generous enough to applaud me in how I have overcome so much and tell me what  an inspiration I am  to those who are living in fear due to chronic pain.  All of you are my teachers as well and I cannot thank you enough for your feedback and helping me in my own personal journey without even realizing what an impact you make in my life.  Thank you.

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Feeling Selfish Because of Chronic Pain

“For people with chronic pain self care is not selfish or irresponsible: its survival.”

Unknown

I have spent about two thirds of my life feeling somewhat selfish because of my invisible illness: chronic pain.  During the time in which I was searching for a cure to my pain I was consumed by anger, depression, anxiety, loss, and pain so severe I could not even will myself to read a book which was something I had always loved.  I was called selfish many times.  I was the queen of cancelling plans at the last minute, missing classes because I was in too much physical pain and subsequent depression that I could not get out of bed, and missing important family events because I could not imagine being around the people who thought I was this amazing little girl who was now going to college and being the Jessica everyone thought I would be see the pain even my smile could not hide.  I was embarrassed, ashamed, confused and in so much physical and emotional pain that I was “selfish.”  However, I was NOT being selfish because I wanted to do what I wanted to do and let people down.  I wanted to be with my friends, I wanted to be in class studying, and I wanted to be around the people I loved more than anything in the world.  Instead I was balled up in bed, alone either crying until the tears could just no longer fall or staring at the wall.  Some may call that selfish however I truly was just surviving and over the years I was hanging on by a thread. So not only did I feel guilty for an invisible illness I had yet to be diagnosed with as chronic pain but I felt hated because everyone thought I was just a selfish person who ditched the people she claimed she loved.  Hell on Earth.  There are no other words to describe those ten plus years of my life: pure and utter hell every second of every day of every year.  I no longer look back and see myself as being selfish.  I was surviving alone with a pain no one could see and a pain I could not fathom.

Fast forward to when I did find acceptance to my invisible illness: chronic pain and learned how to manage this disease naturally.  The first amazing thing to enter my existence once I came to a place of acceptance was hope.  Then the work began.  I began managing pain naturally when I was twenty two and I am now thirty five and it is still a daily routine for me that I do in order to manage pain without pain managing me.  I still have chronic pain.  I still have difficult hours and sometimes difficult days but the good days far out weigh the bad.  Is there a coincidence in my eyes that how I manage pain works as opposed to how I used to manage pain by searching for a cure, I truly do not believe so.  Is my life perfect? Hell no.  However, I am in a place that I never thought after my bike accident and subsequent pain I would be in.  My dreams have come true and more dreams will come true.  There is no exact destination for me and the journey does have its ups and downs but I am finally the Jessica I was meant to be.  With that said I do find people calling me selfish at times.  I would be lying if that term did not hurt but I am working on not allowing other people’s views on how I live or manage pain to interfere with my happiness.  Like the saying goes: “Never mock a pain you have not endured.”  I have to set some limitations in my life in order to control my pain naturally.  I cannot do EVERYTHING a person without chronic pain can do.  I will re-phrase that.  I can do EVERYTHING a person without chronic pain can do but if I did so I would be right back in the first paragraph of this article: Hell on Earth.  I have to take care of myself: body, mind and spirit and know and respect my limitations in order to take care of the people I love and be the person I was meant to be.  I say no to invitations that people think is very selfish of me.  Do I say no to all invites or requests to spend time with me: no.  However, I do say no when I know that a certain day is already busy and going to one extra thing will truly intensify my pain I listen to my inner wisdom and say no.  I have an odd sleeping schedule.  I go to sleep early: between eight pm and nine pm on most nights.  There are the occasional nights I stay awake later to spend time with the people I love but on average I fall asleep with a book in my hand around nine pm: yes on the weekends as well.  I am a morning person and part of my management of chronic pain is a good amount of sleep, exercise, and meditation.  I am a mother.  I like to wake up before my four year old so that I can exercise and practice a small meditation without her angelic yet at times frustrating toddler voice saying: mommy, mommy, mommy fifty plus times.  I have been called selfish for my sleep schedule.  Those are just two small examples of why I am called selfish at this point and time in my life.  If I could turn back time I would never have fallen off of my bike and I would never have had chronic pain.  I cannot do so.  I understand why people may see me as selfish at times but what they do not realize is that I still struggle with the fact that I do have chronic pain and although I am thrilled I am living a happy life despite chronic pain it still saddens me that I am unable to do everything I would be able to do had it not been for my invisible illness.

I beg all of you to not or try not and allow what others say to you regarding how you choose to live your life: and this goes for EVERYONE.  I am damned if I do and damned if I do not so to speak.  If I do not manage pain in a healthy manner I will be a miserable hot mess and people will call me selfish because I cannot really do anything and if I manage pain naturally I am called selfish because I have to set my own limitations.  So what is the lesson in that?  You have to do what you know intuitively is right for you.  If you are not taking care of yourself as only you know how to do than you are useless to everyone, especially yourself.  People will always talk and have an opinion.  Tune that crap out.  None of you are selfish people.  I know factually you are all doing the best you can and if you had a choice you would not have chronic pain.  You are not selfish people, you are survivors.

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Letting Go of What We Cannot Control

“Anything you can’t control is teaching you how to let go.”

Jackson Kiddard

As I was practicing yoga this morning two words stuck with me that I knew I wanted to grow from: flexibility and the art of allowing.  Many people believe that doing yoga is an exercise to tone the body into better health and better flexibility of the muscles and tissues that make up our individual bodies.  However, that is just a small portion of what the art of yoga really is.  Yes, yoga has helped tone my body and has become a great form of exercise, it has also helped me become more flexible physically.  Yoga is also teaching me how to become more flexible in places that are far more important than the outside of my body: my heart and mind.  I will be very honest.  I am not a very flexible person.  There is a very sound reason as to why I am not flexible: chronic pain.  I manage chronic pain naturally and have a routine I follow each day in order to manage pain without pain managing me.  I spent a decade of my life with chronic pain consuming my entire life.  I lived, breathed, and felt pain inside and out for every single day of what could have been the best years of my life: my teen years and my early twenties.  I was in doctor’s offices or getting operations while my friends were on their phones planning what to do for the weekend.  I probably spent as many hours in waiting rooms as I did college classes.  My life could have been defined as: “hurry up and wait for a cure.”  After coming close to just ending my entire life I found what saved me and that was the Mayo Clinic in Minnesota where I learned how to manage pain naturally.  I have a routine I follow daily that helps me in so many ways manage my pain without a cure or medications.  I am living as opposed to barely surviving.  I had to let go of the idea that I would find a cure and surrender to the fact that I could live a happy, healthy life despite pain.  I have had to give up a lot in order to manage pain how I choose but I had nothing when I was looking for a cure so the benefits outweigh the negatives one thousand percent.

However, there are ways I am learning to be more flexible.  I am a mother and one huge lesson motherhood will teach you is how to be flexible.  Our family went away this past weekend to Atlantic City, NJ for a long snowed in weekend.  Yes, I packed yoga DVD’s and some healthy snacks.  However, I had to be flexible.  I stayed up much later than usual and ate things I would not normally eat.  My schedule was totally thrown off but I was having so much fun swimming and just chilling out in pajamas in our hotel room that I really did not think about pain despite not following my usual management of chronic pain.  I surrendered to just letting go and having fun making memories with the people I love.  I was able to get back on my schedule yesterday and I must say what I do does work.  With that said, there are ways I need to be more flexible in my mind and heart which will allow me to be more flexible in my life.  Our thoughts create our reality and I would like my thoughts to be more flexible.  Our mind is like a huge muscle and we can work out our biceps and triceps as much as we want but if we do not focus on what is inside our minds and hearts we will never be truly happy.  I am working on being more flexible and allowing the dreams I have to come into my world without forcing them.  One can work towards a dream or goal without it taking control over their entire existence.  Everything I have gone through in my thirty five years has been teaching me how to be flexible: body mind and spirit and how to allow things to happen while working towards what you most desire.

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Break Out of Your Prison of Pain

 

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“One of the marvels of the world is seeing the sight of a soul sitting in a prison with the key in his hand.”

Rumi

I am tired of being afraid.  I am tired of living inside my box of fear when I do hold the key to my personal happiness.  For fifteen years I spent my life being afraid of physical pain and as many of you know the fear of pain is worse than the pain itself.  At times I am still filled with fear of pain but it no longer controls my life.  However, I am way too often stuck in my own box of fear that I forget to breathe and be calm and happy.  2016 was not an easy year for me.  However, I did learn a lot about myself and know the exact things I personally want to change in order for me to live the happiest life I can in the new year.

I am tired of being afraid of the past, the present and most of all the future.  I want to break free of this box of fear and live my life to the fullest.  I am tired of being fearful to express my feelings, emotions, and thoughts because of what someone will think or say.  No one has control over my happiness, my choices, or my life except myself.  I hold the key and I do find myself in my own tiny prison with that exact key in my hand too often.  I believe we all do in some way, shape or form.  What are you afraid of?  What prison are you living in that you want to break out of?

The prison I find myself in at times is very difficult to escape from as all of our personal prisons are.  We live in a world of fear but we can break free of our personal fears.  How?  I’m working on that.  I’m working on myself and I want to be the best version of me that I can be.  Happiness is an inside job that no person, place, or object can bring you.  Our thoughts determine our lives and I am sad to admit that many of my personal thoughts are derived from fear.  I am not taking away the credit I deserve and all of you deserve for the invisible battles we have each been given and fight every day.  We are all doing the best we can but maybe at times we are trying too hard.  I am extremely tired of overthinking every little thing.  Deep down I know that my fears are worse that what I am actually afraid of.  My fear of anxiety is worse than my anxiety itself just as my old fears of pain were worse than the pain itself.

I do not expect to be happy all the time nor do I expect everything to turn out exactly how I want and/or plan.  However, I do know that being afraid of things not working out how I dream or desire is not going to change the outcome.  I cognitively know all of these things but I am now ready to truly work on these thoughts that cause me added pain and anxiety.  I believe that fear is holding me back from my deepest dreams and desires and as I said in my first sentence: I am tired of being afraid.

How can you break free of your personal prison in this upcoming year.  Break out of your prison for you not for anyone else.  We are never too old to stop learning or growing.   I know many of you feel stuck.  Most of you feel stuck due to pain and I understand that feeling more than anyone.  What would your life look like if you stopped being afraid?  I do not have all the answers but I will be sharing with all of you what works in my new year and what does not work.  I truly want to find my personal peace and happiness without the constant ups and downs that come with life, chronic pain, and anxiety.  I know I can do it.  I know we all can.  You hold your key to your life.  Only you know how to open the lock.

 

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