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.

Healing Through Time

“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!

 

Fearing the Future

“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.

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.

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.

Break Out of Your Prison of Pain

 

“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.

 

A New Year: Be Present

“Healing comes from gathering wisdom from past actions and letting go of the pain that the education taught you.”

Carolyn Myss

I have heard from multitudes of people that the year 2016 has been if not difficult, disastrous.  As I heal and enter into my next phase of working to bring another angel into this world, I realize that for me the year 2016 has come with many ups and many downs.  I have had some of the greatest moments in my life and honestly some of my worst.  I am truly trying to find the lessons that both the difficult times and amazing times have taught me.  With that said, I am going to share with you my New Year’s Resolutions.  I will also write down my very personal News Years resolutions that I do not want to share with the entire world, yes there are some things I do keep to myself and my close friends and loved ones.   However, I do want to share some of  my resolutions for all my readers to read in the hopes that some of you can relate to certain changes.  I know it is not yet Christmas but I feel that we can and should write down and think about resolutions many more times than just on a drunk filled holiday we call New Years.  So, here is what I have been thinking about regarding change, lessons, and things I would like to work on today and tomorrow and for my upcoming year as well.

1. I am what one would call an over thinker, a worry wart, and a person who logically knows things work out but find it very difficult to turn my brain to belief instead of worry.  I do not know what came first: anxiety or chronic pain.  I believe I have had anxiety since I was a very small person and following my bike accident and subsequent chronic pain this anxiety only intensified.  Anxiety and chronic pain can become a vicious cycle.  Anxiety increases pain and pain increases anxiety.  I am going to truly work on changing my thoughts.  Once I begin thinking something that worries to me to no end such as the troubles we have faced having another child, I go into catastrophic mode and start thinking months, years into the future wondering what will happen, when it will happen, how it will happen, and then the what if’s come in which are much more daunting than the what’s.  What if’s are two words that I am cognitively going to start deleting from my conscious mind and my vocabulary.  I need to keep remembering and plan to write this down where I can see it every day this: “Everything I have ever dreamed of happening but have been caught in fear that it will not happen always ends up happening just not how I planned.”  I am going to practice following my dreams but not forcing my dreams.  I need to allow things to come into my life with open arms instead of worrying that my dreams will not come to fruition.  Like the saying goes: worrying is like paying interest on a debt you will probably never owe.
2. Comparison is so called the thief of joy and I find myself comparing myself and my life with other’s which is not only illogical but causes me sadness.  As far as I have come in my journey with chronic pain, I still find myself almost annoyed when I see someone in acute pain (pain that will only lasts hours or at most days.)  People with chronic pain would be thrilled to have acute pain however, my reality is chronic pain and comparing myself to other people’s lives steals my inner peace and joy.  I should be applauding myself for how far I have come and what I great life I have despite my invisible illness.  There are many other things I find myself wishing I had instead of being grateful for what I have in this space and time.  Social media has a huge influence on societies personal views on their own lives.  As people look on sites such as Facebook and Instagram they only see the happy moments in a person’s life.  No one posts pictures of the hard times and the sad/difficult moments in their daily lives only the great ones, myself included.  We need to remember this if we are on social media sites.  Many of us would be better off taking time away from the internet if it is bringing sadness and/or distraught feelings.  If something does not make you happy, do not look at it.  We all need to stop comparing our lives to other’s lives whom we think have it all because I promise you if you lived in their shoes for a week you would probably miss your own life a lot.
3. I have started practicing yoga more and have lessened the amount of cardio I do for both chronic pain and anxiety.  For about two weeks now I have practiced a solid hour yoga session each morning and see how much yoga truly touches body, mind, and spirit.  It is not only the poses and exercises I love, it is the words coming from the instructors voice.  I learn a lot of lessons both consciously and sub-consciously as I move through each pose. I love exercise as a result of chronic pain.  It truly helps me a ton and I love cardio more than any other form of exercise.  However, I am trying to work on my inner self more than my outer self.  I never imagined yoga would teach me so much.  I truly believe our school systems should incorporate some sort of yoga into our student’s daily life.
4. I need to chill out.  I become so consumed with fear of the future and thoughts from my past that I forget to live in the present moment.  I used to tell my patients: “Yesterday is history, tomorrow a mystery, today is a gift and that is why it is called the present.” It is so easy to say aloud or even write down: live more presently but it is one of the most difficult things to do.  For example, when you are taking a shower in the morning are you thinking about how great your hair smells in the wraths of shampoo or are you thinking about what you have to do next?  We are rarely fully present and we miss out on so much of life’s blessings and joys because we are always thinking forward.  I have found that if I focus on my breath and calm myself down when I start getting anxious about the future (even if the future thought is ten minutes ahead of me) I can bring myself back to the present time.  My dad asked me for Christmas what I wanted and the one thing that stuck out was a very awesome day planner.  Right now I have like four different ones I use instead of just one go to planner.  I find that if I write down exactly what needs to be done each day I can let go of the thoughts of the future because they are already written down.
5. Finally I need to tap into my faith.  I need to surrender my dreams to the Universe and allow what is going to come into my life to come without worry or grief.  I need to believe, surrender, and let go.  What if we spend all this time worrying and planning our future when the Universe already has it mapped out for us?  If that is the case then we are all carrying around fifty pound weights for no reason.  I plan to truly take one day at a time and some days will be difficult and some days will be amazing but there is some joy in every day.  One of the last presents I gave my Grandmother before she passed was a magnet that says: “We do not remember days, we remember moments.”  I think in this coming year we all need to cultivate more faith into our lives and let go and be lead towards our divine plan.

 

Grief and Loss

“Grief is like the ocean; it comes in waves, ebbing and flowing.  Sometimes the water is calm, and sometimes it is overwhelming.  All we can do is learn to swim.”

Vicki Harrison

I am a survivor of  brain surgery and live with chronic pain every day of my life.  If you follow my story you know that I manage pain naturally and pain does not control my life or happiness as it once did fifteen years ago.  I have not allowed chronic pain to take away my dreams and continue to fight for those who are struggling with this terrifying invisible illness we call chronic pain.  If you have chronic pain or any invisible illness you are well aware that the last thing a person wants from others is pity.  One of my favorite quotes is: “I do not want you to save me.  I want you to stand by me as I save myself.”  With that said, I am going to share with you a loss that occurred this week that has caused a tsunami of emotions that can be just as painful as physical pain, if not more so at times.  For ten years I believed that chronic pain took away my biggest dream in the entire world, to have a family and be a mother.  Ever since I was a young girl my biggest dream was to be a mom.  Yes, I knew even as a child that I wanted to help people and I always loved writing but the one thing I knew I could not ever bear was a life without children.  For ten years I drowned in the depths and sorrows of chronic pain which came close to killing me.  I never believed I would be where I am now: I have a degree in social work, I am a writer, I am living a healthy life despite chronic pain but the most magical thing that has happened is having my daughter, Kayci.  I am a better mother and person than I would have had I not fallen off of my bike had brain surgery and subsequent chronic pain.  I was recently pregnant and was as happy as I had been when my daughter Kayci came into this world.  I spent weeks dealing with morning sickness and all the fun ailments that come with pregnancy but none of that mattered to me because I was pregnant!  Finally!!!  At about ten weeks or so, I was so confident my pregnancy was healthy and everything was on track that I announced my miracle to the world.  Last week I went for my final appointment with my fertility specialist as I was about to enter my second trimester and the ultrasound technician was unable to find my baby’s heartbeat.  I lost it.  I screamed: “Find it! Find it!  Please God no!!!!!”   I was shaking and sweating and in a state of shock I do not ever remember being in.  The following morning I had a D&E and I spent the following two days in bed crying, watching mindless television, and just staring at the walls.  I felt empty and kept seeing the picture of our baby on the ultrasound screen.  I connected to this baby and I believe only a woman can understand how strong a love can be for someone they have never met.  One day there are two heart beats inside of you and then without warning or preparation one of those heartbeats is gone.  For a day or so you wish the heartbeat that had stopped was your own because in a way it has.

It is crazy how common miscarriages are and I am sure most of you reading this have either faced your own loss or know someone who has.  However, just because something is ‘normal’ or ‘common’ does not make the pain any less.  Cancer is very common but that does not change the immense pain this terrible disease causes.  We are all human and you are allowed to grieve in whatever way you need to in order to heal yourself.  I am not sharing what has recently occurred in my life to bring people down or receive any comments of pity or sorrow.  Quite the contrary, I am sharing what I have just faced in order to help those who are going through something similar.  I am also sharing this story which is not what I usually write about to show how strong each and every one of us are.

I had a D & E February 2nd, 2010 and lost a son.  I did not get out of bed for about two weeks and watched more re-runs of Beverly Hills 90210 than I care to remember.  I once again believed my dream of having children was shattered and my life began to unravel and I went back to a life of pain, both physical and emotional.  It took me a long time to snap out of this grief.  My daughter was born February 2nd, 2011: a year/hour to the date and time we lost our son.  If I had not had that loss in 2010, I would not have the most amazing, beautiful, funny, angelic daughter than I am now blessed with.  I know her older brother was watching out for her and he is one of our angels.  So, am I going to go into catastrophic mode and begin believing I will never have another child: NO.  Do not get me wrong, I am grieving.  It has only been six days and although each day gets somewhat easier, I would be lying if I said I did not cry multiple times during the day.  Am I cheerful, happy, enthusiastic Jessica?  No.  I am doing the best that I can and no hope has been lost that the Universe has a plan and I have zero doubt that I will have another child.  I have learned exactly what people who are going through the loss of a baby do not want to hear and I feel it is important to share for those of you who know someone who is facing this very difficult, emotional loss.  Here are the five things that stand out to me the most as I have faced this loss.

1. Maybe it is enough just to have one child.

2. It was not in God’s plans.  You don’t need to be sad, clearly this just was not meant to be.

3. You do not have to try again to have another child.  Why put yourself through that?

4. I thought you were just happy? What happened?  You are crying again.

5. I feel so bad for you!  You worked so hard for this.  Are they sure?

No, I am not giving up on my dream to have another child and that does not take away the immense love I have for my daughter.  Chronic pain taught me that if you cannot go a day without thinking about something you desire, you have the power to make that something come true.  This is a difficult time but this hardship does not define me or my strength.  I cry in waves, I laugh in waves, I dream in waves, I get angry in waves, but the one feeling that has no waves is my strength and belief.  My strength and belief that I will bring another child into this world is at bay.  I am not worried about having another child because I will and long down the road will look at this just as I look at the loss I faced in 2010.  However, people are allowed to grieve in their own way for their own loss, their own invisible illness, and their own personal life.  You have no obligation to justify your choices for yourself, your family or your life and no one should ever make you feel as if you have to justify your dreams and choices.  This is your life.  This is your pain.  This is your hope.  This is your power.  Just as with chronic pain, the three most important words you can ever say to someone who is hurting is: “I believe you” or “I believe in you.”

Even miracles take time

-Fairy Godmother

The Benefits of Not Pushing Pain Away

“If we stay present with the rawness of our direct experience, emotional energy can run through us without getting stuck.”

-Pema Chodron

I took this picture of my four year old daughter this past Sunday as she was watching the world go by in the comfort of our den.  I spent a great portion of my own childhood in the home that my family resides in now.  My grandmother who has become an angel helped raise me in her home along with many other family members.  I have so many amazing memories in the home I spent so much of my childhood and am now raising my own family in.  With great memories come some difficult ones as well.  I had fear of abandonment growing up and this fear manifested inside me into adulthood partially because of chronic pain and partially because I repressed so many painful memories and just pretended nothing bad ever happened to me.  To be quite honest and for those who have chronic pain will understand this, once I had my bike accident in my young teens that resulted in brain surgery subsequent chronic pain, my invisible illness took center stage in my life.  I was in therapy to learn how to either find a cure to pain or manage it naturally (pending on the time period in my journey with this invisible illness) not deal with the issues I had faced in childhood.  The same window my daughter is looking out of with sparkles in her eyes is the same window I sat at waiting for my dad to arrive home from work the days my Grandmother (La La) watched me.  He worked extremely hard to take care of me, provide for me, and be the best dad in the world at his very young age.  I used to cry each and every time I went to a different family member’s home or someone watched me that was not my dad.  He was my one constant in life and the one person I knew would never abandon me.  The mornings he left for work and I stayed with my La La, I would run from window to window of the home I reside in now listening for the beeps from his car and his waves goodbye.  I knew deep down that he would always come back but as an adult looking back I can now see there was some deep rooted fear that he would abandon me.  I remember one time he went away on a business trip and had to fly to get there as it was too far away to drive to.  On the day of his return I was staying with my Grandfather, Pop Pop and I watched the news for hours making sure no planes had crashed.   I never want my children to have the fear of abandonment and I make sure my daughter knows that I am her constant and she never has to worry about mommy not coming home.

That fear of abandonment only intensified with chronic pain.  I spent ten plus years searching for a cure to chronic pain: surgeries, medications, procedures, massage therapists etc etc .  The times I was not isolating myself from the world because I was in too much physical and emotional pain to face anyone, I was trying to fit in with my peers by drinking with them but to an annoying point where I wasn’t fun to be around.  I always ended up being the ‘crying drunk girl’ by the end of the night because all I could think about was pain and alcohol, as much as it did numb my pain for a brief time only caused me to focus more on pain and increased my already depressed mood.  Over time, people just stopped wanting to be around me and/or I stopped wanting to be around anyone but myself and my pain.  I wish I knew in my teens and twenties that the people who truly love you will never abandon you: chronic pain or no chronic pain.  I still have the same two best friends I have had since I was in my young teens and they have both stuck by me through chronic pain and the ups and downs of my journey.  They both are two of my biggest fans and are very supportive of my choice to manage pain naturally and follow my dreams of sharing my story to save others and to have children and extend my family: two things I truly believed chronic pain had stolen from me.

I am facing a joyous yet trying time right now and I will share what that is in due time. I am currently on bed rest for a week and once again forced to let go of many of the things I use to manage chronic pain, forced to deal with my thoughts, and cannot constantly distract my mind from this yin/yang experience I am going through.  I will say this: the good of what I am facing outweighs the bad in more ways than I can express.  I am grateful for the blessings that are coming into my life despite the difficulties that sometimes come with our truest dreams.  I do not want my emotional energy to get stuck as it has in my thirty plus years in this world.  I do not want to dwell on my problems but I also do not want to resist them.  I must acknowledge and accept what I am facing or problems will manifest deep down in myself and come out at a time when I do not want them to or expect them to.  It took acknowledging and accepting chronic pain without resistance to finally find peace and happiness.  That is a huge lesson I learned from my journey with chronic pain and now need to utilize in the other parts of my life.  Pain does not define you and there are many life lessons we can and will learn if we allow ourselves to be open to the possibilities of non-resistance.  Anything we bury down deep and try to repress will get stuck and I have learned that in order to have a peaceful, happy life we must not repress our feelings or emotions especially those of us with chronic pain.  Personally, the more I repress emotional pain, the more physical pain I am faced with.