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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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12 Gift Ideas to Give to Someone with Chronic Pain

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The holidays can be a very exciting, magical, happy time for many people while for others it is very stressful, depressing, and exhausting.  I remember during my darkest hours of chronic pain dreading my favorite holiday in the world: Christmas.  I have always adored the magic of Christmas: the lights, shopping for my loved ones, Christmas cards, Christmas carols, decorating with my family, Santa, and just feeling that sense of joy as the world went from brown leaves falling to the ground to streets filled with lights and stores windows stocked with festive trinkets.  Once chronic pain began to control my life I despised Christmas.  Everyone was so happy and I was miserable.  I was asked more questions than usual about why I was so sad and isolated.   People had always known me as the enthusiastic, vibrant girl who brought Christmas everywhere she went.  That girl was gone for many years and I thank my father who always believed in me, the Mayo Clinic for teaching me how to live with chronic pain naturally, and I thank myself for doing the hardest work of my life in my management with chronic pain to once again love this time of year more than I ever have.

I was recently asked what a person with chronic pain would want as a gift for Christmas.  The easy, most logical answer would be: a cure to chronic pain.  I wished for that for fifteen years but I am at a different place with chronic pain than I once was and can now answer that question.  I manage pain naturally and if I was still suffering as I once was with this invisible illness I know what I would want to receive as a Christmas present from my loved ones.  Here are the top twelve things that stand out more than anything when I think of Christmas and chronic pain.

  1. A hand written card that speaks from your heart to your loved one with chronic pain.  A letter expressing love and support without any pity.  Words that express how strong you believe your loved one to be and that although you are unable to understand what your loved one faces on a daily basis you are always there to support he or she in anyway they need.  People with chronic pain isolate themselves and feel beyond misunderstood especially from the people they love most.  They feel unworthy of love and need to be reminded that they are not their invisible illness and reminded of just how loved they are.  Most importantly they need to know you believe them; although you cannot see their illness you know it is there.  Words are powerful and will stick with your loved one far longer than any object can.

2.  A CD on yoga nidra.  People with chronic pain find it very difficult to sleep.  Many spent most of their days exhausted, excited just to get into bed and fall asleep and yet once their head hits the pillow they are unable to sleep.  Yoga Nidra is the meditative heart of yoga and is one of the most fantastic, helpful tools I have found to help me manage chronic pain.  It takes a tiny bit of ‘practice’ however all one needs is a CD player or an MP3 player, a pillow and blanket and he or she is set.  A half hour to an hour of Yoga Nidra is equivalent to about three to four hours of sleep.  It took me who is one of the most anxious persons you could meet about three times before I did fall into a deep meditative trance and awoke feeling like a new person.  You can find Yoga Nidra on http://www.amazon.com or any online site that sells music, books, and/or yoga DVDs.

3.  Essential oils such as Lavender, Eucalyptus, or Peppermint.  Essential oils mixed with Epson Salts create the most relaxing bath one could imagine.  There are times I will take a bath with Lavender and Epson Salts and just practice deep belly breathing.  I may listen to a meditation CD or just lay there concentrating on the scents and the feeling of my breathing.  Twenty minutes in a bath with oils is beneficial to anyone!

4. A gift certificate for a pedicure.  Pedicures are not only relaxing but very healing and grounding as well.  I love getting pedicures because it gives me a solid hour to just sit in a nice, light massage chair (which one does not have to use) and allow myself to be pampered.  I always bring a book as I do not like to talk during my one hour of relaxation.

5.  Candles!  I am a huge fan of candles and love practicing yoga in the morning surrounded by candles.  They are not only healing but they smell delicious.  One of the first things I do in the morning before I exercise is light the candles I have on our living room mantle.  Right now the candles are the smells of Christmas and one of my personal favorite smells is the smell of a Christmas tree so it is obvious to those who know me why my current candles are green.

6.  An adult coloring book along with a box of colored pencils.  Whoever came up with adult coloring books is brilliant!  My dad gave me my first adult coloring book along with a beautiful tin filled with colored pencils and I love it!  Who knew that coloring could be so therapeutic and healing.  I should have known I would enjoy coloring the beautiful pictures as I love coloring with my toddler.  However, coloring scenes of gardens, oceans, and designs is a little more up my alley than coloring pictures of Mickey Mouse.

7.  Pending on your loved one’s degree of pain and where he or she is in their journey with chronic pain a great gift could be either a yoga DVD or a gift certificate to a yoga class. Anyone can do yoga and I mean that.  There are multitudes of various types of yoga from chair yoga to power yoga to yoga for chronic pain.  If it was fifteen years ago and I was given this gift I probably would have cried because my mind truly believed I was unable to do any movement but now I love yoga and see that it is beneficial to everyone: chronic pain or no chronic pain.

8.  A journal that speaks to you about your loved one.  I clearly love writing and keep a journal however I find it easier to write in a journal when it is in my eyes beautiful.  Writing is an amazing outlet for anyone but especially those with chronic pain.  One can write down their deepest worries and their personal truth.  I find it very helpful to write down my worries before I go to sleep and leave them aside for another time.

9. A day planner.  It may sound ridiculous but just because someone has chronic pain does not mean he or she does not have a life.  Many people with chronic pain/anxiety often have a mind that never stops racing. I live for my day planner.  I write a to do list every night before I go to sleep and love the feeling of crossing something off the following day once my errand or what have you has been accomplished.  I exercise every morning but I still write it down on my to do list at night because it helps me to feel extra motivated and structured.

10.  Stationary: ok, obviously one can tell by now I really like writing!  There are many people who have chronic pain who do not know how to verbalize how they are feeling or their love for you.  Often times writing letters on pretty stationary helps a person with an invisible illness feel more human so to speak.  He or she wants you to know how much they love you but are often times in too much pain: body/mind and spirit to verbalize their feelings.  Who doesn’t enjoy receiving a letter in the mail instead of a bill?

11. As I come to the end of my list I remind myself that you know your loved one much better than I do!  I may know chronic pain better but you know what your loved one enjoys: books, music, funny movies?  Please remember that we as people with chronic pain do not want to be defined by our invisible illness.  Sometimes the greatest gift can be your loved one’s favorite movie.  Comedies are great because there are times where the saying: laughter is the best medicine is extremely true.  I use distractions constantly in my journey with chronic pain and I find that my hobbies help train my brain to not think about pain.

12. The title of my website is http://www.noonegetsflowersforchronicpain.com.  Therefore, get your loved one some flowers!  One of my favorite movies is entitled: “The Breakup” with Jennifer Anniston and Vince Vaughn.  In the beginning of the movie they start arguing over who is going to wash the dishes after a family dinner.  Vince Vaughn sits down to watch the game that is on television and Anniston cannot believe that she is expected to wash the dishes after preparing the entire meal and cleaning prior to having their family over.  Anniston says to Vince Vaughn: “Gary I want you to WANT to wash the dishes!”  In turn Vince Vaughn (Gary) replies: “Why would I want to wash the dishes?!”  The argument escalates and Anniston ends up saying: “Ya know wouldn’t it be nice if you thought one day: ‘hey maybe I should buy my girlfriend some flowers.'”  Vaughn replies: “You told me on our very first date that you do not like flowers.”  Anniston then says with conviction: “Every girl likes flowers Gary!”  Everybody deserves flowers on occasion Christmas or no Christmas, chronic pain or no chronic pain.

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Your Cracks and Scars are What Heal You

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“It’s easy to look at people and make quick judgements about them, their present and their past but you would be amazed at the pain and tears a single smile hides.  What a person shows to the world is only one tiny facet of the iceberg hidden from sight.  And more often than not, its lined with cracks and scars that go all the way to the soul.”

Unknown

I am a person filled with cracks and scars that do go all the way to my soul.  For a good part of my life I allowed these cracks and scars to harden me and become a person I did not love or even enjoy being around.  Self hate is truly the most powerful hate there is because it can cause a person to act out in hate towards others when really the only person he or she is unhappy with is themselves and/or their life circumstances.  I am still filled with cracks and scars that are not visible to the outside world however I no longer hate myself.  I can be excruciatingly hard on myself and perfectionism can get the best of me but I do not hate who I am.  I am filled with more self love now than I have had in all my thirty five years on the planet.  I no longer look at my cracks and scars as my enemy but as the building blocks that are creating my present and future.  Life is ten percent of what happens to us and ninety percent of how we respond to it.

This year has been jam packed with ups and downs.  I have had the highest highs and the lowest lows.  I have had miracles arise and devastations arise.  Ten years ago I would pity myself without welcoming pity from others.  I would have allowed the bad things that have occurred to define my identity.  Now, I try and find the silver lining.  I try and find the lesson behind each great thing that happens and each difficult thing that happens.  There are many things that have happened to me to bring me to the place within myself where I reside now: chronic pain, losses, mistakes, and my daughter Kayci.  I have faith in myself and my future because of my cracks and scars.  Look at that little four year old girl above who is just about to see Santa Clause and is literally holding in her built up excitement.  I am the lucky person that she calls Mommy.  She believes in magic and she helps me believe in magic because in my eyes she is magic herself.  One of my biggest losses happened in 2010 when I lost our son at about nine weeks gestational age.  Had that little angel not left us, I would not know or have this miracle daughter.

I had my bike accident in my young teens and have had chronic pain since.  For so many years all I thought about was how to get rid of my pain.  I not only thought about it but pain consumed my life, the life of my family, and a multitude of doctors and specialists who could not for the life of them find a cure to my invisible illness.  A day did not go by in which I did not think about a life without pain.  I am thirty five now and still have chronic pain and had you told me fifteen years ago I would be living with chronic pain naturally and having a fulfilled life despite pain, I would have either laughed in your face or cried in your face.  But, here I am living a life where pain does not dictate my life.  I have written and said this many times but it is just so relevant and true to all our stories: “If there is something that you do not go a day without thinking about or wishing for than you will find a way to achieve whatever it is you wish for.”  I never found a cure to chronic pain but my life took me on a different path where I learned to live with it and be happy despite pain.  In many ways my wish that I did not go one single hour without thinking about did come true just not in the way I had expected it to.  As you all know, I do not go a day without thinking about having another child and extending our family. Clearly it is not happening how I had wished and hoped for it to happen but it will happen because if nothing else chronic pain taught me that you never give up on something you do not go a day without thinking about.   In the meantime I am going to do everything in my personal power to bring me closer to my dream while still enjoying and being grateful for what I do have in this time and place.

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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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Being Judged Because of Chronic Pain

 

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“And sometimes I just need to be alone; so I can cry without being judged, so I can think without being interrupted, so I don’t bring anyone else down with me.”

I was recently asked a question if there had been a time in my life where I had been judged because of my invisible illness: chronic pain.  This question was not difficult for me to answer not because I could not think of a time where I was judged for chronic pain but because there have been so many hundreds of times I have been judged due to this invisible illness I could not think of just one.   Even as I write that sentence moments, days, times of judgement and pain run through my mind like a never-ending waterfall of emotions that I cannot believed I survived.  Not only survived but thrived…….eventually.

Following my bike accident and subsequent brain surgery due to a blood clot and TBI (Traumatic Brain Injury) I had half a shaved head, a swollen face, bruises, and scars that took years to heal. I was only thirteen going into the Seventh grade at a new school and three months of recovery was not enough physically or emotionally.  Being the new girl at the age of thirteen is never easy for anyone much less for someone who’s appearance was very scarred.  I was made fun of daily, judged by every classmate except a few friends who are still my closest friends and eventually started eating lunch in the bathroom stall just so I would not feel judged and alone.  Sometimes it is lonelier being around people than it is to be literally alone, which is the loneliest feeling there is.  By 8th grade my hair had grown back for the most part and all of my visible scars had either healed or were hidden.  I tried to fit in by buying the clothes my peers wore and buying the best Acne face wash and slowly I began to make friends.  People no longer made fun of me because I looked: “normal.”  I was young and I had friends to sit at lunch with and people started to like me, the real me, not the outside version.

I had a good year but that did not last for very long.  High School came faster than I could imagine and the physical pain I had felt since my bike accident began to become more consistent and more painful.  I started to get bullied again by certain peers because I was constantly rubbing my face and head without even realizing I was doing so.  The pain was/is located in those places and I was trying to massage to pain away without even knowing what I was doing.  Other people noticed and I was once again made fun of: the freak who rubbed her face all during school.  It was almost like a tic that I could not stop because the pain was slowly but surely taking over my life.  It was around this time that I started my ten year search for a cure to a disease I had never heard of: chronic pain.  I was then judged for making up my invisible illness.  I missed school a lot and spent hours upon hours in doctor’s offices and none of my peers believed me because I looked ‘fine.’  People just thought I wanted attention.  I began to isolate myself from people because it was emotionally painful to have the few people I loved and trusted not believe me because my illness was invisible.  Then I was the girl who was constantly cancelling plans and “lying” about being in pain.  I felt depressed, guilty, and began to believe I was going crazy as no doctor or specialist could help me.  I brought people down and I was not fun to be around.  I did not even like being around myself much less exposing the people I did care for to a version of me that was not me at all.  I was pain: pain was me.

I spent the following ten years being judged because of my invisible illness and even once I hit my rock bottom of pain and ended up at the Pain Rehab Center at the Mayo Clinic and learned how to manage pain naturally, I still was judged.  I was judged by many people for how I lived when I was fighting pain, searching for a cure, and numbing my pain by drinking with friends and then I was judged for living a healthy lifestyle that had little in common with my former life.  I was exercising, practicing meditation, eating well, and no longer had any desire to numb my pain or party with friends.  I lost tons of friends because of my transformation.  I get judged to this day for my lifestyle.  “Why do you need to work out?  You are so tiny as it is?!”  “You never go out and have ‘fun’ anymore, you used to be the life of the party!”  I do not know if it is age or wisdom, but those comments do not bother me at all anymore.  I like me.  There is a beautiful quote that says: “Wisdom is nothing more than healed pain.”

What I have learned over the years is that people are always going to judge you no matter what you do so you may as well do what makes you healthy and happy.  I, personally do not judge others for their actions as I know we are all fighting battles the world may know nothing about.  I will say something if I see someone being judged for their actions, if I have the energy that is.  I have also learned that the more a person judges another, the more unhappier he or she is with his or her own life.   As Abraham Hicks says: “People will love you and people will hate you and none of it will have anything to do with you.”

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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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Self Reflection and Chronic Pain

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“If you suffer it is because of you.  If you are blissful it is because of you.  No one else is responsible, only you and you alone.  You are your own hell and your own heaven too.”

Osho

I have had a few days where I have had to leave my comfort zone and just relax and rest.  If you know me, I am not a fan of resting and being still for too long.  I am the definition of an over thinker and having an invisible illness such as chronic pain has only intensified my roller coaster of thoughts.  After ten years of searching for a cure to chronic pain and finally finding a way to manage pain and live a life that makes me happy, it is very difficult for me to step away from the routine I am so accustomed to.  My day usually begins around five in the morning with stretches and exercise.  Of all the tools I use to manage chronic pain, exercise is definitely one of my favorites and most useful.  It helps with my chronic pain and my subsequent anxiety.  I stay busy throughout the day which is quite easy to do with a four year old daughter, work, and running a home that I am proud of.  My other favorite tool for managing chronic pain naturally is the utilization of distractions.  I train my brain to not think about pain and am usually quite successful in this exercise.  However, for the past few days I have been forced to rest in bed which on one hand has been very difficult.  I want to play with my daughter, run my errands, make dinner, and finish the damn laundry that has been sitting in the laundry room for two days.  I do not enjoy being vulnerable and relying on other people to help me and do things for me.  I begin to feel guilty, frustrated, and the little control freak buried inside me comes out in the silliest ways one can imagine.  For instance, I find it difficult to walk into my daughter’s playroom because I know it is not organized the ‘Jessica’ way.

On the other hand, the past few days have been a great lesson for me.  I have had to let things go and find distractions that have nothing to do with exercise and/or activity.  I have caught up on my favorite television shows, books, and even went back to my gratitude journal and began doing the exercises that are found in the book.  The book is entitled: “Simple Abundance” by Sarah Ban Breathnach.  I have read the book but have never attempted to truly do the workbook that accompanies this very inspiring book.  The first three assignments were quite simple for me.  I was asked to write down fifty things I am grateful for: things from having food in the fridge to being blessed with a beautiful, happy daughter.  The second was to write down the five things I want in my life more than anything.  Number one on my list was to have more children: no brainer there.  The third exercise was to write down the things that I wanted to work on within myself to find more inner joy.  Ironically, this was the easiest exercise the workbook asked of me.  I wrote down so many things that I ran out of room  the page allotted  me.  Sadly, the fourth exercise was much more difficult than I thought it would be.  The exercise asked me to write down five things or more that I loved about myself: my gifts.  I came up with two right away: empathetic and funny.  I even felt a little guilty writing down funny.  It took me longer to find five things I am sincerely proud of about myself then it did to find fifty things I was grateful for.  No one else needs to read my simple abundance workbook so why was I so hesitant to write exactly how I do feel about myself?  Yes, there are things I want to work on and am working on but there are more than two things about myself I am proud of.  However, I felt some sense of ridiculous guilt putting them down on paper.  I learned that I need to own the things I feel good about regarding myself and my life.  I have worked hard to get where I am especially with chronic pain.  I have a lot to be proud of and should not feel ashamed for feeling good about those things in my life.  I focus more on the things I need to work on than the goals I have already achieved.

I believe this to be true: no matter where we are in our journey with chronic pain or life in general, we should be more focused on our gifts than our downfalls.  The more we focus on the good in ourselves, the easier it will be to work on the things we know need some help.  None of us are perfect and chronic pain makes life incredibly difficult at times but we all have special gifts that we need to start putting more focus on.

 

 

 

 

 

 

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The Tears of Pain

8a0d1215ad669c518ccf7f9921b8ac48“I can explain it to you but I can’t understand it for you.”

Unknown

The topic of crying and chronic pain came up recently and the  question was asked: “Do you remember the first time you cried about your invisible illness, chronic pain?”  I racked my mind for days upon days trying to think of the first time I cried about pain and there are too many memories of overwhelming tears because of my invisible illness to even come close to remembering the first time I cried because of chronic pain.  I do not remember if I cried after I fell off of my bike in my early teens, resulting in brain surgery and months of recovery from my accident.  I am sure I did, I’m not superwoman but I have no recollection of being depressed or sad during the months I spent recovering from my fall.  To be honest I only remember good things: family members and friends visiting me, expressing their love and gratitude that I was alive and would be okay; flowers, cards, balloons, and gifts of all sorts; overwhelming amounts of attention and an outpour of affection from those I love the most in the world; and a calm sense that I had come very close to death and made it through something most people can never even imagine happening.  I remember fear but I have no recollection of sadness.  Granted, I was hooked up to machines and given many drugs for pain so I am sure that had a lot to do with it but I honestly remember peace and gratitude above all else.  My tears and heartache did not come until way after my accident when the invisible pain crept in like a robber in the middle of the night stealing much more than any personal belongings, this robber (also known as chronic pain) was stealing my life: something money cannot buy.

The first time I remember crying because of chronic pain was my junior year of high school.  I was sitting in social studies and one of my peers asked me why I was rubbing my face.  I had no idea I had been rubbing my face.  I later learned that massaging my face and head as I did, and sometimes still do is called a pain behavior.  A pain behavior is anything that brings attention to your pain.  I honestly had been rubbing my face and head for so many years that I had zero clue when or where I was demonstrating this pain behavior.  When one of my peers pointed it out in front of everyone in my class, I was mortified.  I had no answer.  I had never heard of the term chronic pain and had no idea why I was in pain.  I went home from school that day and swore I would never massage my face again but one hour later I was cognizant of the fact that as I was trying with all my might to do my homework, I had one hand on my face.  I ran up to my room in a fit of tears, scared as to what was happening to my body.  It was at that moment I believed I was going crazy.  That thought would last for the next ten years.

The second time I truly remember crying was in my freshman year of college.  I was in denial that I had a serious illness despite the fact that it was not visible and was trying to do it all.  I was trying to balance my first year away from home, a full schedule in school attempting to get straight A’s, and searching for a cure to the pain I was feeling.  I was either found behind my computer, taking breaks to cry in my bunk bed because  pain was taking me away from concentrating on my books or computer; in doctor’s offices getting various surgeries and or medications, or out with my friends trying to numb my pain by way of drinking.  I never told people I was going to the doctors or having surgery.  I thought my friends would think I was crazy.  With each medication, treatment or surgery my pain only got worse.  As my pain got worse, my depression and anger intensified until I could no longer take school, relationships, or doctors.  I spent my days crying in bed wishing I had any other life than the one I had.

I ended up going to the Mayo Clinic in Minnesota where I spent three months seeing every doctor the facility had to offer.  I had about four doctor appointments a day.  I spent those months in a hotel room becoming more and more distraught as nothing worked.  One day, my main doctor there called me and asked me to come in for a meeting with himself and his nurse.  I could hear, by the sound of his voice that nothing good was going to come of this meeting.  As I took a bus to the meeting, I felt as if I was walking down my own death row just waiting for my sentence of life to be over for good.  The Neurologist explained to me that I had a condition called chronic pain that was most likely correlated to my bike accident that happened in my young teens.  This was the very first time I had heard the term: chronic pain.  What he said next took my breath away.  He said: “Jessica, you have chronic pain and unfortunately there is no magic cure, medication, or surgery to take away your pain.  However, there is a program here at the Mayo Clinic called the Pain Rehab Center that helps people with chronic pain learn how to manage pain naturally and teaches people how to live a fulfilling life despite pain.”  I was in SHOCK.  I remember screaming through copious amounts of tears: “NO, NO, NO!  I will not accept pain.  I would rather die than live in pain the rest of my life.  I hate you.  I hate pain. I hate my life.  Why me??  I did not come here for this!!! I came here for help!!!  Pain had destroyed ten years of my life and you want me to live with pain?!  Hell no!”  I stormed out of his office and when I looked back through my tears I saw that the nurse was crying as well.  I went back to my hotel room and laid in bed for days.  I did not cry.  I was numb.  I did not get out of bed for anything, not even food.  I laid in the dark with no television, curtains drawn, willing myself to sleep but pain and anxiety had taken over my entire body.  I was done.  Days later I finally accepted a phone call from my dad who begged me to consider going into the Pain Rehabilitation Program.  I would have done anything for my dad and I finally agreed to go.  I will never forget the days I spent in that dreary hotel room laying in a bed millions of other people had laid in wishing my life away.  That is pain.

If you have read my story you know that the Pain Rehabilitation Program saved my life.  Yes, I still have chronic pain but I no longer allow it to control my happiness.  There are certain times I am more aware of pain than others but I have been managing pain naturally for years and although I do not have the life I had planned exactly, I have a life I am proud of and grateful for.  I think there will always be times I cry because of chronic pain but the tears do not last and I am very happy for the most part.  No matter how hard I try and remember the first time I cried because of chronic pain is like asking me what happens after we pass, I have no idea.  I spent over a decade in tears and am just very grateful that pain no longer has that power over my life.

 

 

 

 

 

 

 

 

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Being Judged Because I “don’t look sick”

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This is exactly what someone looks like with chronic pain.  This picture was taken at a place called, Long Wood Gardens which is where we spent my dad’s past birthday.  To people walking by who do not know me would never believe I have chronic pain.  I am trying to go back in time and visualize this picture fifteen years ago when I looked nothing like this and my world was spiraling out of control due to chronic pain.  If twenty-one year old Jessica saw this mother and daughter at a well known garden exhibit, she probably would have cried wishing she could be the person seen above.   The Jessica of past would never have thought this Jessica has chronic pain and would have been filled with jealously just at the fact that this person seen above was a smiling, happy mother spending the day with her family.  Twenty something Jessica would have thought: “Sure, maybe this in shape, happy mom isn’t perfect but I would give my right arm to have her life.  If this lady could live with pain like I do for just one day she would never be able to have a beautiful daughter and be happy at a place like this.  I’ll never have anything like this girl.”

I wish I could tell my younger self that one day she would be the woman she sees who is smiling a real smile, healthy, and a mother of a more than beautiful daughter.  I am misunderstood on a weekly if not daily basis.  It was easier for people to believe I had chronic pain when I was forty pounds heavier, depressed, unhealthy, and at the doctors for pain at least three times a week.  I never worked out a day in my life until I was the age of twenty-two.  I never ate extremely healthy.  I could do keg stands with the best of them and my idea of a healthy dinner was pizza with broccoli on top.  People who know the Jessica I am now have a very hard time believing me when I tell them of my past because of how dedicated to health I am.  I used to hear whispers at the gym when people did not realize I could hear them over their headphones: “That girl says she has chronic pain but there is no way she does.  It is probably just for attention.  If I was in a lot of pain I would not be able to run on the treadmill or lift a weight.”  Hearing comments like such or knowing that some people do not believe me used to infuriate me but not so much anymore.  I used to feel the need to justify myself which takes a LOT of energy and is a total waste of time.  When asked or confronted on how I was able to do things when I had ‘chronic pain’ I used to go into my entire story: “Believe it or not, I exercise and live the way I do because of chronic pain.  I spent ten years searching for a cure and taking tons of medications for pain until I wanted to end my life and ended up at the Mayo Clinic in Minnesota where I learned to manage pain naturally.  They taught me to exercise correctly, and physical therapy taught me about weight lifting and the importance of strength training.  If I did not exercise or do all the things I do for my natural management of chronic pain I would be a total wreck just like I was in my young twenties.  You should see pictures of me from back then.”  This is literally a paragraph I would say on a daily basis: at least once a day.

Then I woke up.  I began to realize that the more and more I justified my invisible illness, the more I was focusing on my pain.  I spent years working on not focusing on pain and now I was spending an hour a day justifying myself to people who I was not even close to.   People are going to judge you no matter what: invisible illness or no invisible illness.  I truly believe people talk about other people as a way to not have to deal with their own problems.  I know.  I used to be one of those people.  You have no need to justify yourself to ANYONE.  The only person you need to improve for or impress is YOU.  We need to be more concerned with how we feel about ourselves and less concerned with how other’s feel about us.  It is your life, your health, and your happiness.  Do not waste the energy that some of you fight damn hard for on other people’s opinions of you and your life.  Never forget that everyone you meet is fighting a battle you know nothing about.

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Feeling Buried Alive: Chronic Pain

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I remember when I was a young girl talking with friends about the worst possible way to die and each of us had a different scary scenario for death.  I have no idea why we talked about such things although the conversations were probably correlated to the scary movies we watched in the Eighties and Nineties such as: “Childs Play” and “Sleeping With the Enemy.”  We were a generation drawn to scary movies.  My biggest fear was being buried alive: that was always my answer if this random/crazy conversation came up.  I must have seen a movie or show about someone being buried alive because ever since then I have had some form of Claustrophobia.  My younger brother and I used to wrestle as children and I literally would scream bloody murder if he (who was stronger despite our age difference) pinned me down for too long.  I felt as if I was suffocating and worse trapped with no control.  Fast forward many years and I found myself living in MRI machines because of my bike accident and subsequent chronic pain.  It came to a point that I truly could not bear another MRI because I hated feeling trapped in the machine and literally had panic attacks that if any of my doctor’s needed an MRI, I was given some sort of sedative to relax me.  They never worked.  My worst case scenario of how I would die was coming true despite me surviving my accident: I felt buried alive in more ways than one.

I was around the age of fourteen when I began my search for a cure to chronic pain.  With each day, month, and year I found myself sinking deeper and deeper into the ground.  Maybe that is where the term ‘rock bottom’ comes from however I found myself under a pile of rocks that caused me to actually want to die because I could not bear another day in my battle with chronic pain and worse searching for a non-existent cure.  I was not living and every moment of every day felt as if I was trapped inside my own body: a body of pain.  I am thirty-five now, managing pain naturally, and living a life of joy and gratitude as opposed to a life of pain.  With that said, I still have moments where I freeze in fear and pain.  I feel as if I am back in that MRI machine: gasping for air, unable to breathe, unable to move, trapped.  These moments happen either as I am trying to fall asleep or when I first awake.  Either way, the moments always happen when I am in bed.  I can manage the mornings when this happens much more easily  than I am able to do at night time.  If I wake up with this feeling of fear and being literally stuck, I can will myself out of bed and exercise.  People think I am crazy because I awake so early and exercise before the sun is up at times but this is what works for me.  Exercise is truly one of my biggest tools for managing pain without pain managing me.

However, nighttime is different.  Most nights I am way too tired to focus on pain or the random fears that enter my mind causing me to sweat, breathe heavily, have heart palpitations, and eventually make myself get up and just walk around the house.  Then I get in bed and try to sleep again and I am back in that MRI machine: STUCK.  This happens rarely but there are those nights where I cannot even find enough gumption to read or watch something meaningless on television.  Pain, fear, and the emotions that come with this invisible illness take over my mind and body.  I do not have restless leg syndrome but know what it feels like because when nights like this happen to me, I cannot stop moving and yet I feel trapped inside myself.  It is literally hell on earth.  I cannot believe I lived in this state of pain and panic for over a decade.  And people wonder why the number one reason a person with chronic pain dies is by suicide.  I made it.  That is what gets me through theses horrific nights: knowing that the feelings I am feeling will be gone but they are torture nonetheless.

If you ask my daughter why people are mean, she will respond with this: “Because they are sad inside.”  Never judge a person by how they look on the outside or how they treat you.  People will love you and people will hate you and none of it will have anything to do with you. Chronic pain is usually invisible and I try to remember when someone is rude to me or does not like me that they too could be fighting a battle I know nothing about.

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