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Managing Life’s Stress Along with Chronic Pain

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

Marlon Brando

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

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

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

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

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

 

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Healing Through Time

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

C.S. Lewis

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

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

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

February 2nd

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

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

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

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

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

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

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

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

 

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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.

 

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Strength in the Midst of Pain

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“No matter how justified you are in your negative emotion, you are still messing up your future.”

Abraham Hicks

When I first read the quote above I found it to be quite harsh however the quote stuck with me and every time something I read or hear stays in my mind, I know there is some meaning in it for me.  Everyone who has chronic pain is beyond justified to feel many negative emotions.  I lived, breathed, and survived through negative emotions for over ten years due to chronic pain.  You are all beyond justified to feel depressed, angry, frustrated, misunderstood, and at times hopeless.  Despite how far I have come with my personal journey with chronic pain I am still justified in feeling negative emotions at times due to my invisible illness.  However, there came a time for me and it will come for you as well that you realize you do have a choice in how you manage your pain and how you allow your pain to either better your life or destroy your life.  Pain destroyed everything in my life for a solid third of my time in this world.  Once I did the hardest work of my life and began to manage pain naturally and found ways to live with chronic pain without it controlling my life, my days began to get better and better therefore leading to a better future, a future I never imagined I would have.

As most of you know I had a terrible loss ten days ago and although I am still filled with a multitude of emotions and can cry at the drop of a hat, the cry of a baby, or even a commercial for diapers I have come to a point where I am once again excited to make and bring a healthy, happy baby into this world.  I never lost hope but I am now changing my thoughts (as much and as often as I can) into positive thoughts.  When I first heard those words ten days ago: “There is no heart beat”  I felt like my heart and soul were being ripped to shreds and I did lay in bed for days crying and catastrophizing.  I did not want to celebrate Thanksgiving and the thought of Christmas made me cry harder than one can imagine.  But, I awoke one morning and decided to get up and get back to living.  I got back to my natural management of chronic pain routine.  For a week I have been waking up at five am, exercising, writing, decorating for Christmas, and began to remember how much I have to be grateful for.  I took the picture above of my daughter Kayci on Thanksgiving.  She is an angel.  Had I not had a miscarriage on February 2nd, 2010 my daughter would not be here and the world would not be the same.  She makes people happy.  She has a zest for life that gives others a zest for life they did not know they still had.  I know from the bottom of my heart that the loss I just faced not only saved a baby from a very painful life but also is going to allow another angel come into the world, just as the loss I faced in 2010 brought Kayci into this world.

We never can say what, when or how emotional pain will settle (not go away) but calm down to a state of acceptance and we are not supposed to know as we all grieve in our own ways and no one can be judged for how they deal with their pain or grief.  There is no time limit.  I awoke a couple days ago and my first thought was not of the excruciating pain of the loss that just occurred but with an excitement to start over.  I believe chronic pain and other challenges I have faced in this world have given me an added boost of strength because had this happened years ago I would still be in bed crying.  I do not want to forget all I have while working towards what I want, what my family wants, what my angelic daughter wants.  It will happen.  Yes, I am still grieving and I would be lying if I said I did not cry once or twice a day but I am still grateful and excited for my future.  I am justified to have many negative emotions and I did live in those negative emotions for days.  I want to be positive and happy and I do thank God for my faith that dreams do come true but not on our schedule.

I want to dedicate this post to Kristen who recently wrote me an email and helped me see the strength I do have.   I know you all have that strength too even if you do not see it at this moment.

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Planning a Life Around Pain

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“Understanding the challenges you face with your illness and then planning a life despite them, may be one of the bravest decisions you will ever make.”

Unknown

The ups and downs and spins and twirls never truly end when you live with an invisible illness such as, chronic pain.  It took me ten very long, painful, heartbreaking, gut wrenching years of my life to come to a point of acceptance of my invisible illness.  It was not until then that my dreams slowly but surely began to come true.   However, I have to plan my life around chronic pain.  Now, this is not such a terrible thing and with a lot of dedication can be done and one can make the life they desire no matter what illness he or she has.  A month ago I was given the greatest news of my life since the birth of our healthy daughter, Kayci.  I am sure many of you who know me can guess what that news is but I am still waiting to share it with the world.  With this amazing, life changing, news that I have worked towards for two years now has come with some changes in my daily life and how I manage pain naturally.

When I set my mind to something, I do not give up.   That is one of the biggest blessings I received from a diagnosis of chronic pain.  I know that if I am strong enough to manage chronic pain naturally and live a life I am for the most part happy with, I can do anything.  I have to want something so badly that  I do not go a day without thinking about it to put in the effort, faith, and work it takes to make what I want come to fruition.  It may sound silly to some but one of my biggest and most beneficial tools to managing chronic pain naturally is exercise.   Exercise not only helps my pain levels but my anxiety as well.  In order to keep my dream safe, I have been told by my amazing doctors that I  should not work out for now as I just got over being on bed rest.  It has now been over a month since I have been allowed to exercise and it has taken a toll on me.  However, I keep reminding myself of one of the greatest quotes I have ever heard: “At times you must give up what you want now for what you want the most.”  It has been an adjustment but I just have to plan my life differently for now just as I have done with my management of chronic pain.  I have had to find different things to do in the morning when for thirteen years I have gotten up and worked out right away to keep my brain to going straight to pain and to get my body moving.  I started a gratitude journal six weeks ago where I write down five things I am grateful for each morning.  I have had more five am snuggles with my beautiful daughter and spent very real time with her just talking as the sun comes up.  I am trying hard to practice more yoga nidra and meditation.  I am finding other ways for the time being to manage chronic pain and re-arrange my schedule to keep my dream safe and sound.

Whether or not you have an invisible illness, there are going to be times when life does not go as plan and random road blocks are going to stand in the way of what you desire.  You have to keep going and find different routes and avenues to take to get to where you want to go, to make your dreams come true.  “At times you must give up what you want now, for what you want the most.”  I have used that quote in my management with chronic pain when pain is so difficult I have a small desire to go back to pain medication and I use it for other life changes that arise in my life.  I believe in all of you and all of your dreams.

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White Noise

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Years ago, when chronic pain ruled my world, the only place I felt heard was alone in the ocean.  I loved the waves crashing over me, melting away the screams that I could no longer manage to voice.  I loved looking out into the endless ocean because it was the only place that gave me hope that life still existed: the ocean expanded so far, I felt that maybe no matter how bad of a place I was in I too could one day expand as the ocean did.  I loved the feeling of being crushed by the rough waves and treading under water as I heard the faint noise of the water above.  What most people feared about the ocean, was what I found as the only peace that still existed in my world of pain.

The Oxford dictionary defines white noise as noise containing many frequencies with equal intensities.  Invisible illnesses such as chronic pain also contain many frequencies with some-what equal intensities.  Chronic pain does not come alone.  Chronic pain is followed by many other white noises: fatigue, depression, anxiety, insomnia, hopelessness, and sadly sometimes suicidal thoughts and ideations.   Over time people forget one has chronic pain and their screams can literally only be heard as white noise.  They feel alone, hopeless, and many find places such as I did with the ocean as the only place he or she feels heard and/or understood.

In 2005 the movie: “White Noise” came out starring Michael Keaton.  He plays a man who loses his wife, Anna unexpectedly and becomes obsessed with finding her on ‘the other side.’  He meets a man who works with the supernatural using a device called: EVP (Electronic Voice Phenomenon.)  He is a skeptic at first but soon becomes a believer and makes it his lifes mission to speak to his wife through EVP or as others call it, white noise.  I enjoy this genre of film and although this is not my favorite “ghost movie” it does correlate with how I view my own struggle with chronic pain.  Both the character played by Michael Keaton and his deceased wife are trying desperately to speak to one another but all they are able to hear is white noise.  Trying to explain an invisible illness, such as chronic pain comes out to those who do not have chronic pain as white noise.  The words are there but they are not comprehensible to the people we so desperately want to understand us and what we live through each day.

For over ten years I knew no one with chronic pain.  My life was filled with white noise drowned out by the voices of doctors, friends, and family.  No one could hear me and soon my screams could only be heard inside myself.  It was not until I went to the Mayo Clinic in Minnesota and entered the Pain Rehab Center that I met other’s who also had chronic pain and my white noise slowly faded away.  I did not need to explain what I felt because I was surrounded by others who felt the same exact way.  I learned so much while at the Mayo Clinic and practice the tools I learned there daily to manage pain without medication or treatment.  However, what I benefited from most was the commonality I found amongst my peers who also had chronic pain.  The worst part of an invisible illness is not being understood.  All you need is one person, whether that be a friend or family member or in my case a total stranger I met in the middle of Minnesota to truly understand how you feel.  I hope that my writings and stories help drown out your own personal white noise.  You are definitely not alone.

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What is Courage?

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“Be strong enough to stand alone, smart enough to know when you need help and brave enough to ask for it.”
Mark Amend

Today is May 3oth, 2016: Memorial Day.  Today we celebrate and give thanks to the many heroes and their families who stood up for our country, fought/fight for our country and allow us to have the freedom that we would not have had our soldiers not put their lives in jeopardy   for the country we are proud to call: The United States of America.  The soldiers both past and present demonstrate a type of courage and strength many of us could not even bear to think of.  The families of those who serve must dig down deep to find their own courage and strength to keep their children and loved ones happy, secure, and brave.  Courage comes in many forms and many ways and today we must honor those who have put their lives on the line to keep all of us safe.

I cannot imagine the things and events our soldiers have witnessed and the fear they must face on a daily basis.  I will be very honest and admit that I have never been a very patriotic person.  I never really thought about what Memorial Day and The Fourth of July truly stood for.  I was always excited to have off of work or school, go to the parade and then to the pool.   I do not blame myself for my ignorance or my lack of knowledge of past wars, this was just a subject in my life I never took a huge interest in.  As I get older I realize all the sacrifices so many Americans make on a daily basis just so I am able to feel safe and know my family is safe as well.  I thank every American soldier both past and present who fights for our country every day.  Thank you for your courage and strength.

I met a sixty five year old man who had phantom leg pain from serving our country many years ago.  He lost one of his legs and was not only wheel chair bound but had chronic pain due to what we call phantom pain.   It is very difficult to explain what phantom pain is but I will do my best.  Like most people who have chronic pain, phantom pain is invisible.  This courageous man literally had physical pain where he no longer had a leg.   This man was not only brave for going to war for our country but for being strong enough to ask for help.  He, like many of us with chronic pain had been on many medications and had searched for a cure to his phantom pain for years upon years.  However, the pain never went away and only became worse. He was not ashamed to ask for help.  He was not only suffering from chronic pain but also from PTSD.  He reached his own rock bottom, just as many of us have in our battle with pain and finally let the tears fall and told his wife that he needed help or he would no longer be able to survive in the terrible world of his invisible illness.  That is courage.

Many of us want to appear strong all the time and feel this pressing need to prove ourselves to the world.  After my accident and subsequent chronic pain, I never wanted anyone to think I was weak.  Despite my search for a cure to chronic pain and living in hell on the inside of my body, I tried to do it all.  If someone asked me if I needed help, I was too proud to say yes.  I allowed my dad to help me but that was basically it.  I believed I could get straight A’s in college, have a ton of friends, be popular, and cure my chronic pain at the same time.  I was fighting a battle that there was no end to.  When I was about twenty one, I finally asked for help.  The most courageous thing I have done to this date is ask for help and surrender myself to chronic pain.  I was tired of fighting.  I was tired of trying to do it all.  I was tired of being in pain twenty four seven and depressed that no medication or surgery that doctor’s promised would cure me ever worked and only made my invisible illness more painful.  Finally admitting to the world that I needed help and telling the truth that I truly wanted to die if I was going to have to live in the severe pain I was in for the rest of my life was the scariest thing I have ever done.  Accepting chronic pain and letting go of my need to cure my pain was the bravest act I have performed to this day.  I have fallen a few times in the past ten years but I get right back up.

Everyone of you that reads my story is brave and you have more courage than you could possibly believe.  That courage resides in you despite what your mind continues to tell you.  I will end this post by quoting one of my heroes, Dr. Martin Luther King Jr.: “Courage is the power of the mind to overcome fear.”

Thank you

 

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What Does Love Feel Like?

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“What does LOVE feel like Mommy?”

My four year old angel: Kayci

Three days ago my daughter who just recently turned four asked me one of the most difficult questions anyone has ever asked me: “Mommy, what does love feel like?”  We were driving home and I was lost in thought and completely taken aback by this very profound question that came from my little girl.  I always try to answer her questions even when I do not truly know the answers.  However I cannot look in a book or browse the internet for the questions/answers regarding love.  I knew I had to answer and yet could only think of one word: safe.  It would be easier to answer such a huge yet simple question if Kayci was about ten years older than she is but she is not your average toddler in any way, shape or form.  I am not sure I even truly understood the deepest feeling of love until she was born.  I did what all adults do when they do not know how to answer a question: answer a question with a question (do you not just hate that!?)  I asked her: “how do you know you love mommy?”  She answered much more quickly than I had anticipated: “that is silly mommy.  Of course I love you.  You take care of me, are funny, and I don’t know I just love you.” However, she kept pressing me for my answer of : “What does love feel like?”  I finally surrendered and babbled something that is beyond hard to explain: “Love is something that is hard to put into words.   Mommy cannot imagine life without you, that thought is very scary because I love you so much.  Love is a feeling that is hard to put into words.  I think love is feeling safe and important and knowing you are loved enough to love yourself.  I think you and Mommy love music so much because it puts into words what we cannot say.”   Needless to say this was a profound moment that has not left my mind the past few days.  And yes, a little deep for a little girl with the mind of a true healer.

Fast forward to the next day when I was the lucky one to get the stomach virus that is going around.  No matter what ailment one gets, everyone seems to say: “Oh that is going around.  My best friend’s, sister’s, cousin just had the same thing.”  I awoke around midnight two nights ago at the sound of my daughter’s voice calling me.  I stood up and realized I was dizzy beyond belief.  It was truly difficult to walk.  However, my daughter needed me (love) and love sometimes means doing things you do not want to do such as standing up in the middle of the night because your toddler begs you to.  As I walked down the hallway I became more and more dizzy until I fell, literally fell and hard.  I fell in front of our bathroom and then began vomiting everywhere.  I was scared.  I awoke the next morning with multiple bruises and was literally unable to get out of bed.  My dad who has always made me feel safe was at our home within the hour, playing with Kayci and making me toast.  I slept for the following twenty four hours: that is sick. I never sleep during the day.  I awoke yesterday and still felt pretty awful.  Our daughter has her first dance recital in less than a month and yesterday was the last day to buy tickets for the show.  She is only four and is beyond excited to dance for the people who love her.  She loves music and dance and I felt such guilt at the thought of not taking her to dance or worse not buying tickets to her recital.  Call it a mother’s strength, or call it love but somehow I managed to get her dressed in her hot pink tutu, feed her, and get her to dance class on time.  Her friend’s parents took one look at me and said: “What happened to you!  You should be in bed.  How did you  even drive here?”  Without thinking, I simply stated: “Love. I would do anything for my daughter.”  That is when I remembered the question: “What does love feel like?”

There are so many different kinds of love: there is someone’s first love, there is the love between two people who have been together for fifty years and as much as they get on one another nerves they cannot imagine a life without the other, there is the love between siblings, friends, and then the love a parent has for their child.  Love has different feelings and can be amazing and filled with joy and at times love can be scary and very difficult.  We all have different ways we see and view love.  I feel that love is feeling safe with another person.  Chronic pain taught me who truly loved me and who did not.  The one person I felt truly safe and loved by was my dad who always believed me and never gave up on me.  If you love someone you just know it, there is not a way to explain the feeling of true love.  As scary and difficult as love can be, it is the most magical feeling in the world.  If you love someone who has chronic pain they do not need you to fix them or even find the right cure or medication.  They need your love.  It really is that simple.  The person with chronic pain or any invisible illness needs to know they are loved and safe.  I will repeat the three most important words one can say to someone who has chronic pain: “I BELIEVE YOU.”

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Feeling Forgotten

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

Unknown

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

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

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

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

 

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One Day at a Time

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THE REIKI AFFIRMATION

Just For Today,

I will not worry

I will not be angry

I will do my work honestly

I will give thanks for my many blessings

I will be kind to my neighbor and all living things

I love what is shown above and my favorite line in The Reiki Affirmation is: Just For Today.  Our world is never just about today, in fact we are rarely living in the moment.  It is not even noon here in New Jersey and I have already spent about ten minutes mourning the past and then maybe five more minutes missing the past and then twenty minutes or so projecting into the future.  That was until I saw the above: JUST FOR TODAY.  I think we can all do the above just for a day.   The sad yet honest part is that even as I write that: just for today, I realize just how difficult even one day is to follow the above affirmations.  However, we do have power over our thoughts: we do.   It is the most powerful thing we have but the most difficult to use.  I have written this before and gotten laughs but it is very true: my mind and inner critic is such an asshole.  Do you ever just want to crawl into your mind and yell: SHUT THE HECK UP!  I AM TRYING TO HAVE A GOOD DAY!  Well, I have: way too often.

For today, I will try and live in the moment and each time one of my worries enters my mind I am going to use one of the tools I use to manage chronic pain.  I will find a distraction or follow one of the other affirmations above which is to count my blessings.  I will not yell at my mind as much as it drives me nuts but will gently shift the thoughts to something positive.  I have anger in me.  There are personal struggles I have had to deal with that have caused me anger.  Logically, I am well aware that anger is a useless emotion and only ends up hurting the self but I am human.  I feel pain both physical (obviously) and emotional.  Maybe, just for today I can let go of that anger.  I can only change how I react or respond to a situation or person and I have faith in myself that I can let go of this anger, just for today.

I have so much to be grateful for.  I have a beautiful daughter who can be a real toddler at times and make me want to pull my hair out but ah what a blessing she is to me.  She continues to teach and inspire me and fill me with a love that is almost scary.  I will never find the words there are to explain the love I have for my daughter.  I am managing chronic pain naturally, something I never thought I could do.  I am helping thousands of people through my writing: fifteen years ago I wanted to take my own life because of this invisible illness.  Just yesterday a package arrived in the mail from a famous writer in the UK.  Her name is Vidyamla Burch and she has chronic pain.  She is a published writer, speaker, and has worked with some of my personal heroes.  She was not only kind enough to read my blog but sent me her book with a note in it that reads: “Dear Jessica, here is the book I wanted to send you.  Enjoy and keep writing and offering your gift to the world.”  This is a big deal and I was so wrapped up in things I am going through right now that I was not even the excited Jessica I would have usually been.  I am reaching people and not just the people who I am helping but writers that I look up to and are idols to me.

Just for today I want to follow The Reiki Affirmations.  Just for today could turn into tomorrow and possibly the next day.  However, I am tired of thinking about the future.  It is exhausting.  I want to practice these concepts just for today and I am asking you to do the same with me.  I know how hard they are.  They should not be hard but are minds are so wired that the above is not the norm for us as a society, especially for those of us with chronic pain.  Can we do this together?  Just for today.

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