Angels, Anger, Anxiety, Brain Surgery, Caregiver Stress and Chronic Pain, Change, chronicpain, Depression, Empathy, Exercise and Chronic Pain, Intuition, Law of Attraction, Managing Pain Naturally, meditation for chronic pain, Non Resistance, Peace, perfectionism, self love, simplify life, Suicide, Suicide and chronic pain, Support for Chronic Pain, Teenagers and Chronic Pain

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.

 

 

 

 

 

 

 

 

Standard
Angels, Anger, Anxiety, Brain Surgery, Caregiver Stress and Chronic Pain, chronicpain, Empathy, Fear of Abandonment, Happiness, Law of Attraction, Let go, Positive Energy, simplify life, Support for Chronic Pain, Teenagers and Chronic Pain, The Universe

Empathy and Chronic Pain

08ff0e38ce5e1b789b367300e1d6e0e6

“I love when people that have been through hell walk out of the flames carrying buckets of water still consumed by the fire.”

-Stephanie Sparkles

There is a huge misconception that people with chronic pain want, thrive even off of pity.  Many believe those with chronic pain want to be coddled and treated somewhat like a baby.  I have had many people say to me: “Oh my, so young to be diagnosed with such a disease. I feel so badly for you.  Why did you have to fall off of that bike at such a young age.  Its such a sin.”  I know logically that people’s hearts are in the right places and they truly feel for me and others who have an invisible illness.  However, I never wanted pity from anyone even when I was at my lowest point with chronic pain.  I definitely do not want any pity now at a time in my life when I have been managing chronic pain so well for such a long time and have tried as hard as I possibly can to find the good in my accident and life with chronic pain.

The Oxford Dictionary defines pity as: the feeling of sorrow and compassion caused by the suffering and misfortunes of others.  I do not want people to view me as a suffering thirty five year old who has had the terrible misfortune of falling off of her bike at a young age leading her to a life to chronic pain.  However, I do want encouragement and at times empathy.  The terms pity and empathy are not alike whatsoever.  The Oxford Dictionary defines empathy as: the ability to understand and share the feelings of another.  People always ask me what helped me the most in my journey with chronic pain.  I learned so much at the Mayo Clinic in Minnesota.  I learned from doctors, physical therapists, nutritionists, etc. on how to manage pain naturally and not allow pain to take over my existence.  I learned that I could live the life of my dreams despite not finding a cure to chronic pain.  However, the best part of the program was the empathy I received from the people who were also in the program.   I became friends with people of all ages, races, genders, from all over the country.  On the surface most of us looked like your average American but we had one HUGE thing in common: we all had a form of chronic pain and for most of us our pain was not visible.  For ten years no one understood how I felt inside as pain after a long time becomes not just physical but emotional as well.  I was one hundred percent alone for a third of my life.  I was a turtle who only came out of her shell when she was desperate enough to spend time with people just as not to be alone in her pain for a few minutes or hours. The Pain Rehab Center at the Mayo Clinic allowed me to come out of my very hard, broken shell for weeks.  I was no longer alone.  I was understood and able to share my feelings/emotions with others who did not pity me but empowered me to keep going despite chronic pain.

There are challenges I face now and I do not share them with many people because the last thing in the world I ever want again is pity from friends and family no matter what my difficulties may be.  I want to be encouraged and empowered.  Pity does nothing but make another person feel worse than he or she already feels.  I love knowing people believe in me and believe in my dreams.  I do not want to hear: “I am sorry you are going through this or that.”  I want to hear: “Jessica, you are so strong.  You got this.  I have every ounce of faith in you and I am here if you need anything.”  You do not always have to be in someone’s shoes to express empathy or encouragement.  The greatest thing you can say to a loved one with chronic pain is: “I have no idea how you deal with this invisible illness every day.  You are so strong and I am so proud of you.  I am always here for you.  I believe you, you are never alone.”

A quote always sticks in my head when I write about empathy and I will close this article with this: “I do not want you to save me.  I want you to stand by me as I save myself.”

Standard
Anger, Anxiety, chronicpain, Depression, dreams, Exercise and Chronic Pain, Happiness, inner child, Law of Attraction, Let go, Managing Pain Naturally, simplify life, Suicide, Suicide and chronic pain, Support for Chronic Pain, Teenagers and Chronic Pain, Worrying

Being Judged Because I “don’t look sick”

9abe9d9543a93078a8591260aba8221c

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.

Standard
Anger, Anxiety, Brain Surgery, chronicpain, Depression, dreams, Empathy, Happiness, Intuition, Law of Attraction, Managing Pain Naturally, Manifesting What you Want, Miracles, Non Resistance, Peace, Support for Chronic Pain, Teenagers and Chronic Pain

My Three Lives in Pain

58e3c0172c6c2fa8f22119dcaa674dfa

“My illness isn’t really invisible.  If you look closely enough you can see how much it has changed my life.”

Unknown

My bike accident occurred when I was in my young teen years.  I feel as if I have led three different lives during my thirty five years in this amazing world.  The first thirteen are somewhat difficult to remember.  My earliest memories are with my dad taking bike rides to the park and playing kickball with my friends in our front yard.  Some great memories stick out and some terrible memories are there that I will never forget.  I was a kid with an enormous zest for life.  Despite not having the “perfect” childhood, I have more great memories than bad memories and my family did the best they could to provide me with a joyous childhood.  No one would have imagined the events that occurred during the ten years that followed my bike accident.  I remember the day I fell as if it was yesterday, down to the taste of the pink mint that I was chewing when the front tire of my bicycle got twisted with the bag I was carrying and my body went directly into a stone wall.  The damages that occurred on that day would affect the next two thirds of my life.

For the following ten years I would be a totally different person than I was during my first thirteen years here in this world.   As many of my readers know, my accident resulted in brain surgery to remove a blood clot and many other injuries that had me in critical condition for a few weeks and then bed bound for a few months.  I do not remember the pain from my surgery nor being extremely upset about losing three months of summer.  I remember fear but not pain.  I was doted on for months as everyone was beyond happy I was alive and healthy.  I received flowers, presents, cards, balloons, and because I was unable to walk up the stairs my dad gave me a bell to use whenever I needed something.  Once my scars healed and my hair grew back, I believed that my life would go back to the way it was pre-bike accident: not perfect, but happy.  I could not have been more wrong.  Brain surgery was nothing compared to the pain I would endure for the second portion of my life.  I looked pretty much like the Jessica I had been before my fall except for all the fun things that come with puberty like pimples and oily skin but I was in more physical pain than I had ever endured; the difference was that the pain was no longer visible.  I can remember the exact moment I began noticing the pain.  I was sitting in my Seventh Grade Social Studies class and a classmate asked me why I was rubbing my face and neck.  I had gotten so used to massaging the pain I felt that I started doing it constantly.  For the next ten plus years I would search for a cure to chronic pain.  The term chronic pain was not used during this time and every doctor and specialist I saw was mystified by my condition.  I was miserable, confused, in pain, and filled with a desperation for relief that no words can describe.  I tried everything to the point that if someone started a question with the words: “Have you tried……” I would stop them before they could finish because I truly had tried EVERYTHING.  Fast forward a few years and despite my huge passion to get my college degree, I dropped out after two and half years and drove to Boulder, CO to drown my pain in partying with friends.  I was the fun girl who was always up for having drinks or taking random road trips to Vegas.  I surrounded myself with people who loved to drink and party so that I could finally “fit in” with people as I had during the first third of my life.   I was the life of the party on the outside but inside I had never been more unhappy.  I came to a point that I not only hated my physical pain but I hated myself.  I hit a rock bottom that was harder than the wall I fell into that started this whole mess.

My friends in Colorado began to notice that I was not as okay as I appeared to be.  I was no longer the life of the party.  I was at the party but with each drink I cried more about the physical pain no one understood, not even me.  A good friend saw that I was heading somewhere bad fast and believed me when I said I was in severe pain despite the fact that the pain was not visible.  He believed me and that belief saved my life.  I ended up driving to the Mayo Clinic in Minnesota where the third portion of my life would begin.  After two months of seeing every specialist possible and undergoing every test possible, I was told that I had chronic pain and there was no magic cure to my invisible illness.  I am not sure I have ever cried as hard as I cried when the words: chronic pain and no cure came out of this brave doctor’s mouth.  Under his guidance and advice, he got me into the Pain Rehabilitation Center at the Mayo Clinic where I learned how to manage and live with chronic pain naturally.  I went unwillingly at first but deep down I knew I was headed for death if I did not try one last thing.  The first week was brutal and I did not say a word to anyone.  Then something clicked.  I started listening to the people around me whom also had chronic pain.  Their pain, like mine was mostly invisible as well.  I was no longer alone.  Chronic pain does not discriminate and I became close to people I never would have talked to because despite races and age, I had more in common with the people in my chronic pain group than I had with anyone in the world.  My entire life changed during the next three months.  I learned how to live with chronic pain and manage it without medications or treatments.  I began to live again as opposed to merely surviving.  I was alive.  I stopped hating myself and began to embrace life and follow my dreams.

I was petrified to go back to Colorado and wanted nothing to do with the lifestyle I had been living there.  I was healthy.  I had learned that I could be a healthy, happy person despite chronic pain.  However, I had to change my entire lifestyle.  I was exercising, eating healthy, reading again, writing, and wanted nothing to do with drinking or anything that could affect my chronic pain management routine.  I lost a lot of friends.  I was not the same Jessica I had been prior to going to the Mayo Clinic.  I went from being the life of the party to the girl who was in bed reading by eight o’clock and awake by five am exercising.  I was one of the most “boring” twenty-two year olds in college.  No one understood me and I was asked constantly to go to this party or that party but I had to say no even though I knew I was losing the group of friends I had once counted on to get me through the night.  I had to be selfish.  I had to focus on my health.  I spent a year in Denver, Colorado practicing the techniques I learned at the Mayo Clinic every day of the week: no exceptions.  I needed that year to totally focus on my health and my new way of living.   I then went back to school in Denver, CO and did get my college degree in Social Work.  I loved learning how to help people so much that I ended up graduating at the top of my class and once I stopped resisting pain, everything began to fall into place.  I am now thirty-five years old and there have been bumps in the road in my journey with chronic pain but nothing like the life I led for the second half of my life.

If you have chronic pain I want you to know that you are not crazy and you are not alone.  I spent a third of my life living in hell, wanting to scream and cry every second of every day.  I wanted to tear my entire face and head off just to get rid of the pain.  I did not have hope because I knew no one who understood what I was going through.   There was no light at the end of the tunnel.  I understand that you may be in the worst possible place mentally and physically but I need you to have hope.  There may not always be a way out but there is a way through.  I promise you.  If I can live a happy life despite pain, anyone can.  Don’t worry, I probably would not have believed myself either if I read this fifteen years ago but at least know that there is a light at the end of the tunnel and the light is very bright.

 

Standard
Anxiety, chronicpain, Empathy, Griveving Process, Managing Pain Naturally, mindfulness, Non Resistance, simplify life, spoon theory, Suicide, Suicide and chronic pain, Support for Chronic Pain, Teenagers and Chronic Pain, Worrying, Your Soul

White Noise

21502e25ceafd9906bb4deeda1da666f.jpg

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.

Standard
Change, chronicpain, Depression, Empathy, Managing Pain Naturally, mindfulness, Positive Energy, simplify life, spoon theory, Suicide and chronic pain, Support for Chronic Pain

To the Teacher of a Student with Chronic Pain

a37172d115c6c6a93ef7e631c9f2e4ca

“It’s like swimming upstream every time you are awake.”

-Oriana Hill

Middle school is not easy for anyone, whether you are in the ‘popular group,’ the ‘intellectual group’,’ the athletic group,’ ‘the party group,’ and so on.  The popular Eighties film: “The Breakfast Club” pretty much sums up the life of a teenager in their teen years.  I did not fit into any group when I first entered Seventh grade.  My bike accident happened right as summer began after my Sixth grade at a private school.  I was excited for the summer but very anxious to enter a public school where I knew no one and would be the new kid on the block.  My anxieties about entering a brand new school were only intensified after my bike accident when I then had half a shaved head, chronic pain, and a face that was still difficult to recognize even after recovering for three months.  One would think that the students would be cruel to me but it was not just the students that misunderstood me, there were some teachers who truly made that first year at a new school a bigger disaster than it already was.  The funny part is that my scars still were evident: my hair had not grown back all the way, I still had bruises and as I stated before my face was not yet healed by any means.  I was in both physical and emotional pain and I feared going to school every day of the week.

I had one teacher who taught History/Geography in my first year of Middle School.  I had never been very interested in either History or Geography but this class was right before my lunch period where I ate lunch in the bathroom alone daily just so no one could see me and I would not be made fun of or worse be the only kid among one hundred students eating all alone.  I spent the fifty minutes of the class I already did not like watching the clock tick by, dreading the sound of the bell for lunch time.  There are certain moments we never  forget and one of those moments for me happened in this particular class.  I was called to the front of the room to point out a certain state on the map the teacher had hung up on the chalk board.  I could hear the whispers behind me as I timidly walked up to the front of the room, facing thirty other kids.  My heart was pounding, my palms were sweating and I had totally forgotten what the teacher had asked me to point out for the class.  I may have been watching the clock while he was teaching the lesson and had no clue what he had even asked me to do.  Either way, I could not find the state or city the teacher had asked me to find.  He was not kind about my inability to follow his directions and kept pushing me to find what I knew deep down I could not find on this damn map.  After about five minutes, tears welled up in my eyes and I ran out of the classroom and into the nearest bathroom where I slammed the door and let my tears fall.  No one came to see if I was okay.  I stayed there until the bell rang for the dreaded lunch I would be eating in that same bathroom stall.   To this day I have trouble with geography.  Up until a couple of years ago, I thought that Seattle was a state.  There may be no correlation to my ignorance to geography at the age of thirty five and my experiences in Seventh grade but I am sure there has to be some relation.

Eighth grade was a tad easier for me in school.  My visible scars had healed and my hair had grown back and I was able to hide chronic pain for a long time.  I began to have friends and enjoy learning again.  I did not eat lunch in the bathroom and made two friends who are still my closest friends twenty years later.  Nothing was ever easy as I was fighting an invisible battle with pain but at least I did not have the added stress of being put down by certain teachers and peers.  I believe that teachers need to have an extreme sense of empathy just as I had when I was a social worker.  We all need to remember that people are fighting battles we know nothing about.  There is a reason kids act out in school: no one is born “bad” and I truly do not believe there is such a thing as a bad kid.  I could not count on my peers when I entered this new school because I was not only the new kid but I was the new kid who looked like a ‘freak.’  I should have been able to rely on my teachers and there were many that were extremely helpful to me and without their empathy and support, I am not sure I would have made it through that first year of middle school.  Just because one is a doctor does not mean he or she is a good doctor, just because someone is a parent does not mean he or she is a good parent: the same goes for teachers.  You can have all the knowledge in the world of Geometry and World History but what students need to learn the most is how to treat other people.  I will never understand how Geography is more important that empathy.  I thank this teacher for being so hard on me and teaching me what I know is not okay.  No, I never found that damn state on the pull down map during that Geography class but I did learn strength and I learned how important it is not to judge someone no matter what they look like and I started to learn how important empathy is.

 

Standard
Anger, Anxiety, Brain Surgery, Buddha, chronicpain, Depression, Exercise and Chronic Pain, Let go, Managing Pain Naturally, mindfulness, simplify life, Suicide, Suicide and chronic pain, Support for Chronic Pain, Teenagers and Chronic Pain, teens with chronic pain, Worrying

Feeling Buried Alive: Chronic Pain

5c64492019f08644946439188f60ce6d

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.

Standard
Anxiety, Brain Surgery, Buddha, Caregiver Stress and Chronic Pain, chronicpain, Depression, Empathy, Griveving Process, Happiness, Law of Attraction, Let go, Loss, Managing Pain Naturally, mindfulness, Non Resistance, perfectionism, Positive Energy, self love, Suicide and chronic pain, Support for Chronic Pain, Teenagers and Chronic Pain, Worrying

Guilt and Chronic Pain

5a233747ce03c0c1710a3c77b7862aa9

“You are not obligated to do everything a healthy person does.  You are not obligated to be an inspiration. You are not obligated to hide your illness to make other’s comfortable.  You are allowed to know your limits.  You are allowed to have bad days.  It is not your fault if other people leave you because of your illness.  It is not your fault that you have an invisible illness.  You do not have to apologize for something that is out of your control.”

Unknown

I never truly acknowledged the amount of pressure and guilt I put on myself until my daughter, who is now four was born.  I have always been a perfectionist but I never want to fail as a mother in any way, shape or form.  However, I believe my quest to be the perfect mom at times causes my anxiety levels and stress levels to go up which in turn increases my pain levels or at least I notice my chronic pain more.  There are things I did not have as a child that I want my children to have, but deep down I take this motherhood thing to a whole new level.  I love my daughter more than anything in this world and as most parents know it is a love that is unlike any other love in the world.  The love I have for my daughter scares me at times.  I wonder am I doing this or that right, analyze her actions as ‘age appropriate’ or dare I use the term: ‘normal.’  I never want her to be sad, feel abandoned or have a bad day.  The pressure I put on myself to make my daughter happy can at times be unhealthy for both of us.  That realization and throwing that sentence out into the world is not easy for me to do.  I am very much like other mothers I know and am friends with but I believe some of my childhood and my journey with chronic pain has shaped me into a mother who worries way too much about how her daughter is doing/feeling/acting and not enough time focusing on how I am doing/feeling/acting.   Cognitively I know and most of us realize this: the happier and less stressed/healthier I am, the happier my daughter will be no matter what we are doing.

I had an appointment for a physical scheduled for this gloomy Monday morning and I truly hate going to the doctor’s office because it reminds me of my ten year search to find a cure to chronic pain, during which I LIVED in the offices of every doctor imaginable but what I now dislike more is the guilt I put on myself because my four year old comes with me.  I almost cancelled (in hindsight I wish I had) because I did not want to drag her to a doctor’s office even though it is harder on my than her: thoughts truly do create our reality.  I packed snacks, games, books, magazines, colored pencils: the works just in case the wait was long which it ended up being: way too long of a wait for that matter.  After an hour and a half in the waiting room, I honestly could not take waiting any longer and Kayci had been patient up until we passed the sixty minute mark.  I told the front desk I would have to re-schedule and decided to go to a different office as I got very bad energy from the office and honestly the receptionists were very rude.  I have learned to follow my intuition and for some obvious and not so obvious reasons this is not a doctor’s office I ever want to go to again much less bring my four year old to.  The guilt kept getting worse as the clock ticked by and the loud TV screamed out medical advice.  By the time I finally made a choice to leave, I could feel my chronic pain mounting which I am usually able to put on the back burner.  It actually felt as if I had gone there for chronic pain and I have not seen any doctor for pain for years.  I think that is where my guilt stems from and that is absolutely ridiculous.

I did search for a cure for over a decade.  I did drop out of college for two years because my quest to cure my chronic pain took over my entire being.  I do feel that I lost ten years of my life but that is why I decided to learn how to manage chronic pain naturally.  With that choice, I must go easier on myself especially when it comes to parenting.   I am so far from perfect and have made many mistakes in my life but I know one thing and that is that I am a great mom.  If there was such a thing as a perfect mom, we would be living the life of Stepford Wives and I am sure half of their children are rebelling somewhere in the world.  I want to let go of the guilt.  I want us all to let go of any guilt we feel due to our invisible illness whether that be chronic pain or not.  I did not ask to fall off of my bike and have brain surgery.  I did not ask to live a life with chronic pain.  Neither did any of you.  I am exhausted from being so hard on myself and living in the world of apologies.  How many times a day do you find yourself saying: “I’m sorry.”  We are a generation (especially females) of guilt, feeling as if we are not enough, and saying the two words: “I’m sorry” at least ten times a day.   We are doing the best we can.  Are other people putting pressure on us or are we doing it to ourselves?  We can blame society, our friends, our family but in the end we need to stand up for ourselves and take care of our health and happiness because we are our biggest enemy which is such a shame.  Life is too damn short to live one more second in the realm of guilt.  It is odd, I know my readers are doing the best they can with their invisible illness and I am sure you feel the same about me.  Why do we credit others so much and forget the person that matters more than anyone in our lives: OURSEVLES.

Standard
abandonment, Angels, Anxiety, Brain Surgery, Buddha, Caregiver Stress and Chronic Pain, Change, chronicpain, Depression, dreams, Fear of Abandonment, Happiness, Law of Attraction, Managing Pain Naturally, meditation for chronic pain, mindfulness, Support for Chronic Pain

Loneliness: Is It Such a Bad Thing?

7ae124c416e1cd643101cf590ec7a476

“loneliness is a sign you are in desperate need of yourself”

-rupi kaur

Loneliness comes in many forms and there is a huge correlation between chronic pain and feeling desperately alone.  Many people (as I once did) isolate themselves from their friends, family, and the world when in the wraths of chronic pain.  Fifteen years ago I spent my days alone in doctor’s offices or in bed crying each and every day away.  I isolated myself for many reasons: I was jealous of everyone who did not live in pain every day of every week, I felt that no one would possibly want to be around someone who was once a fun, energetic girl who turned into a negative, sad, angry person and I honestly came to a point in my journey with chronic pain where I could no longer fake being happy because pain had taken over my body, mind and spirit.  I felt alone whether I was with people or by myself: the latter just took away the fakeness I could no longer muster up for people whom I believed would end up deserting me anyways because of my invisible illness.

I am at a different place with chronic pain and no longer find myself isolating from the world.  I have very close friends whom I can share my truest feelings with, a family I adore, a daughter who is the biggest miracle to ever enter my life, and those random people who come in and out of your life because of where you spend your time.  However, there are times I feel absolutely alone, misunderstood in ways I am not even sure those with chronic pain would understand as I am not sure there is a correlation between my personal loneliness at times and my invisible illness.

I am Jessica and at times I feel I should not only use my name as a noun but as a verb as well.  People always tell me that I am the truest Gemini they have ever met because I am diverse in many ways and beat to my own drum.  To be honest I no longer give a ton of credibility to astrology but there are many commonalities I have with the descriptions of a Gemini.  Not to mention, I did at the age of eighteen get a tattoo of the Gemini symbol on my back: brilliant teenage move, NOT.  I remember when I got the tattoo I was very down and battling chronic pain like a beast attacking my entire being.  I wanted a tattoo and it is true once you get one you tend to want more.  There was a reason I chose my horoscope symbol as my first tattoo.  I had always had a fear of abandonment and my bike accident/chronic pain only intensified this fear, causing me to believe no one I loved would ever stay in my life for too long and because pain was my only hobby, passion, or purpose in life I had no idea what to get for a tattoo.  I decided to get the Gemini symbol because it was one thing I could think of that would never change.  I was born on June 7th and no one could ever take away my birthdate, nor my astrological sign.  As odd as it may sound, I had no identity but chronic pain and I definitely did not want the word PAIN drilled into my skin more than it already was.

As I was working our this morning I looked over at a book I keep on an end table in our living room entitled: Simple Abundance.  I love this book and used to read it daily, highlighting different points that stood out to me and made sense in my life today.  Over the past year or so it has become a book for decoration like the picture frames placed in various places throughout our home.  I was doing a cardio/interval training workout that allots one to two minutes in-between exercises to breathe and drink some water.  During those two minutes I picked up this much needed book that I allowed to turn into a decoration and began reading what I had once highlighted.  Then it hit me, like a ton of soft bricks.  I have been feeling this sense of loneliness because I am not taking the time I truly need for myself.  I am rarely, if ever alone and yet have been feeling this sense of loneliness which is not a common feeling for me.  Then again, my truest partner in crime is my four year old daughter and it is hard to get a lot of soulful, intellectual time when teaching her to swim or coloring in one of her many coloring books.  I would not give any of our time up for the world but I do need to start looking within myself again and work on reading the books that help me in my journey with life and chronic pain and focus on meditation again.  I love the quote above because maybe loneliness is not a horrible thing.  Maybe it is our souls way of letting us know we are not giving ourselves the attention that only we are able to give ourselves.

Standard
Anger, Anxiety, Brain Surgery, Caregiver Stress and Chronic Pain, Change, chronicpain, Depression, dreams, Exercise and Chronic Pain, Fear of Abandonment, Griveving Process, Happiness, Managing Pain Naturally, mindfulness, Non Resistance, simplify life, spoon theory, Suicide, Suicide and chronic pain, Support for Chronic Pain, Teenagers and Chronic Pain

All Pain is REAL

411e9af61324f5ad1010fe0c53081793

My family and I watched the movie last night entitled: “Alexander and the Terrible Horrible No Good Very Bad Day” starring Steve Carrel.  The movie is based on my favorite children’s book and I was extremely impressed by how funny, witty, and thought provoking the movie turned out to be.  I honestly cannot wait to watch it again.  I had a terrible, horrible, no good, very bad week for the most part and the reason was due to pain, however it was not due to chronic pain.  That sentence may only make sense to those who also suffer from chronic pain.

One of my main tools for managing pain naturally is not talking about it.  However, for this post I must point out where exactly my chronic pain is located.  Because of my bike accident and subsequent brain surgery my pain is located in my face, head and neck.  I had many surgeries to “cure” my chronic pain before I began managing it naturally which only made my chronic pain that much worse.  However, this week I had my first real back ache.  Of course, I have had back issues since my accident but not chronically.  The worst of my chronic pain has always been in my face and head.  For over ten years, while I was searching for a cure to my chronic pain I took many medications, was at the doctor’s at least twice a week, and lived my life on the search for a cure for my invisible illness.  I never slept because the pain was too intense and over the years as each doctor, medication, and surgery did not relieve my pain I became depressed, agitated, angry, and began to isolate myself because I could not deal with being around anyone, even my family because pain had totally took over my entire existence.  Jessica and Pain were one of the same.

When I did hit my rock bottom and truly was at my worst: living in Boulder Colorado, not going to school, seeing doctors constantly, drinking all the time with friends, and crying day in and day out I finally went to the Mayo Clinic in Minnesota.  I unwillingly entered a program called the Pain Rehab Center where I learned how to manage pain naturally.  To this day I utilize the tools I learned there and have found a fulfilling life despite pain.  When I first entered the program I was pissed, and more depressed than ever.  No one looked sick.  Then again I did not look sick either but at the time I was so focused on my pain I could not imagine anyone else feeling as terrible as I did.   At that point I thought my pain had to be visible because it was all I could see.   There were about twenty people in my group and all had chronic pain but no one was talking about their pain.  Some people were laughing, walking around, reading, playing board games, emailing friends as I sat there thinking: “This is crap.  I could never be able to read or email a friend because my pain is way too much to bear.  It is hard enough to sit in a chair much less laugh with people I do not know.”  I wanted to quit.  My dad being my voice of reason urged me to stay in Minnesota and give the program a chance.  A few days in I began to hear people’s stories.  Turns out everyone did have chronic pain but no one had had brain surgery or pain in their face and head.  Some people had chronic back pain, fibromyalgia, phantom leg pain, migraines, etc.  I always thought having any kind of chronic pain other than my own would be better.  Having chronic pain throughout my face and head was and can still be torture.  I thought back then if I had back pain or phantom pain I could at least read or do this or that.  I learned this week how wrong my thoughts back then were/are.

I am not sure why I have had a back ache this past week.  I came down with a stomach virus just yesterday as well so maybe they are correlated but I really do not care why my back hurts.  I learned a long time ago that trying to figure out why something hurts will only bring more attention to the pain.  This is not always a good thing and as a disclaimer I would like to say that it is always important to not ignore pain or any ailment for too long as there are times something could be seriously wrong.  However, I knew nothing was life threatening and I was just coming down with something and/or had over worked my muscles through exercise or just not taking enough breaks.  However, severe back pain is awful!!!!  I had insomnia for over three nights.  As I was laying in bed those nights that turned into mornings I remembered all those in the Pain Rehab Center with me.  I was a hypocrite at the time.  Pain is pain.  Chronic pain is chronic pain: visible or invisible.  Now I know what severe back pain feels like and it is just as bad as my chronic pain is: just in a different area of my body.  I am thankful to not have chronic back pain and as it is slowly going away I am grateful.   All of us who have chronic pain have critics within our life and those who are not in our life.  Many people do not believe our pain.  There is a huge stigma related to invisible illnesses.  I have been writing for over three years in hopes to help those with chronic pain and all invisible illnesses for that matter.  We need to stick together.  Does it matter where our pain is?  Chronic pain is an invisible illness that affects our lives in more ways that I can count.  Why even ask another where someone’s pain is located?  I learned this week after days of severe back pain that that pain was no different than when I was in the wraths of hell with my chronic pain which is located in my face, head, and neck.  There is enough judgement surrounding chronic pain.  Let us never judge one another who understand chronic pain.  Pain is pain and we need to be a support system not a group of individuals trying to figure out whose pain is worse than someone else’s.  Do not forget the three most important words to say to one with any invisible illness: I BELIEVE YOU.

Standard