Angels, Caregiver Stress and Chronic Pain, chronicpain, Depression, Empathy, Exercise and Chronic Pain, Griveving Process, Happiness, Infertility, inner child, Intuition, Manifesting What you Want, meditation for chronic pain, mindfulness, Miracles, Non Resistance, Peace, Positive Energy, self love, spoon theory, Suicide, Support for Chronic Pain, The Universe, Worrying, yoga, yoga nidra, Your Soul

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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Support for Chronic Pain

Mother’s Day Gift

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“The moment a child is born, the mother is born.  She never existed before.  The woman existed bt the mother: never.”

Rajneesh

When I was a little girl, very young all I dreamt of was being a mother and having a family.  I was so excited when my younger brother was born because I took care of him.  I laid in his crib, fed him his bottles, and up until he was maybe eight rubbed his back and read him stories until he fell asleep.   I was like a mom to him and wanted to protect him from anything that could hurt him.  I never played anything as a child but “house.”  I had my bedroom full of dolls, doll beds, doll bottles, etc.  The one thing I kept from my childhood was my cabbage patch kid: Darcy.  Fast forward to elementary school and I did great with school.  I am ditzy and not always book smart but I always wanted to get my dad’s approval and make him proud.  However, I still had my one dream: to have a family and be a mom.  When people would ask me: “What do you want to be when you grow up?” I answered without hesitation: “A mom.”  People did not like that answer and followed with a second question: “Oh, that is great but what do you want to be, you know do for a living?”  My answer had not changed: “I want to be a mother and take care of a family.”  After years, I changed my answer because even back in the nineties “being a mom” was not good enough.  I loved pretending I was a teacher and had a chalk board in my basement and I loved writing.  My answer to adult questions regarding: what I want to be when I grew up slightly changed: “I want to be a mom, teacher, and writer.”  Phew, all true but really I just wanted to be a “homemaker” and take care of a husband and my children.  Even back then I wished it was the fifties because (and I am so for women’s rights) being a mother and homemaker was the norm for women and respected and enough.  My dream of being a mother and having a family never went away.  That is why my bike accident and subsequent brain surgery and chronic pain killed me: I would never be able to be a mother.

For people who have chronic pain, but more importantly for those who do not please read the following few sentences carefully.  I almost died twice.   The day I fell off of my bike I landed head first into a stone wall and broke some bones but stubborn Jessica would not accept the help from the cars that pulled over and I pushed myself to walk home.  Once home, I saw that my dad was not there (cell phones did not yet exist) so I put a VHS on (like a DVD, only bigger—I’m old, I know.)  I must have fallen asleep during the movie because my dad awoke me.  He looked at me and took me straight to the nearest emergency room.  Once there, we waited and waited to be seen just to get a sling for my arm as my collar bone had broke and some bandages for the minor wounds.  All set to go home and was discharged.  Halfway out the hospital doors, I began to vomit which is the first sign of a head injury.  The doctor told my dad that I needed to get a cat scan of my brain “just in case” something was wrong.  Ten minutes later I was being rushed in an ambulance to the nearest trauma unit for immediate brain surgery.  My brain had been bleeding on the inside for way too many hours and time was running out.  I should have died and years later wished that I had.  The last thing I remember was my dad saying goodbye and nurses cutting off my clothes and shaving my head.  Clearly, I lived.  Still amazes me that I survived but nothing prepared me for chronic pain.  Chronic pain was not a common diagnosis back then and there were no such terms as spoonies, warriors, etc.  I spent a third of my life searching for a cure for my chronic pain.  My full time job, when not in school was that search: neurologists, dentists, acupuncture, more surgeries, every medication you can imagine from Neurontin to Percocet.  Nothing worked.   I still entered college and declared my major: elementary education.  I had not yet given up hope for a cure so while in school continued going to specialists.  Two years later I gave up.  I dropped out of college and drove to Colorado pretending I wanted to go to school there and explore the world.  Bunch of bull shit.  I knew people in Boulder, CO and knew I could party my ass off to numb the physical pain and emotional pain.  I remember each night once our jug of Carlo Rossi wine (gross) was gone crying to my friends: ” I just want to die.  My life is over.  All I ever wanted was to be a mother, have a husband, and take care of a family.”  I believed strongly that would never happen. The physical pain had taken over and it took everything in me to function and I came close to ending my life.  Told you, I almost died twice.  Sadly, I am not joking.  I almost did.  There is only so much the mind and body can take: add jugs of wine and partying to the mix and you are headed for death.  Maybe, part of me was praying that would happen.  The number one reason people with chronic pain die is by suicide: I never became a statistic.  I did become a mom though.  After hitting rock bottom (not a strong enough term for where I was, more like boulder bottom) I went to the Pain Rehab Center and learned how to accept and manage chronic pain naturally.

I will be thirty four very soon and I am a mother with chronic pain.  My dreams came true.  Oh, for those readers or anyone from my past who asked me what I wanted to be when I grew up this will make you happy: I got my degree in Social Work and was a social worker (a real job.)  Ha.  I am now “just a mom, homemaker, nanny and writer.”  Not because that is what society expects but because my dream was to be a mother and damn it I did it.  The above picture was taken this past Saturday at a playground close to our home.   Yes, my daughter crashed yet another birthday party: two weekends in a row.  This party was huge with a DJ blasting soul music and hip hop and the positive energy there was amazing.  I thought Kayci would be shy and not want to get out of the car.  Quite the contrary (mini me, God help us.)  She jumped out of that car seat and without hesitation ran to the music and began dancing.  She made friends and it reminded me of the dream I truly believed would never come to fruition.  She is one of the most empathetic, loving, funny, and most of all kind kid I have ever met.  Yes, I am bias but it is true.  She started playing with the girl in the above picture who is seven years of age.  I like to eves drop on what my daughter is saying to others without her knowing I am listening.  I heard her say: “Where is your mommy?  Oh, it is okay.  My mommy is so nice and loves kids.  She will play with us!”  Then I hear: “MOMMY, CAN YOU GET MY FRIEND A WATER AND MY BLUE FISH (gold fish, who knows.)  She gave her friend water, all her “blue fish” and half of the toys she had with her.  My daughter (yes I am bias, but it is true) is one of the most empathetic, intuitive, happy, giving, and loving person I have ever met.  Nature vs. Nurture: whatever.  However, she is my gift.  Had it not been for my brain surgery and my journey with chronic pain she would not be the person she is.  I do not wish chronic pain on anyone, especially my baby girl.   However, Kayci was doing yoga positions prior to walking.  She loves juicing and looking for fruits and veggies at the market.  More importantly, she is kind.  She does not judge and has empathy that no toddler I have ever met has.  She has empathy for gold fish.  At the pet store when she sees the tanks of fish and one is being “mean” to another one she looks at me and says: “Mommy, that is a sin.  He should be nice.”   When driving and a car allows me to go at a four way stop she says: “Wow Mommy, she is so kind.  I would let you go too.”  She beats to her own drum and does not give a damn what anyone thinks.  So yes, I one day want her to have a sibling because being a mother and having children and a family is my dream and what I excel at.  Yes, my second dream is to be published for my work on my story and spread awareness and maybe one day be a speaker for Ted Talks.  However, I would trade everything in for motherhood.  I did receive some very thoughtful gifts yesterday but my biggest blessing and gift is the little girl I am so lucky to call: daughter.

Dreams come true with chronic pain.  Never Give Up.

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You Can Handle a LOT More than you Believe!

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“At the end of the day, we can endure much more pain than we ever thought we could.”

Unknown

I have written this probably one hundred times in this blog but my biggest fear was that I would never be able to be a good mother and have a family due to my chronic pain and the suffering it caused.  As most of you know, that fear was incorrect and this past week proved to me that chronic pain has actually made me a stronger mother than I ever thought possible.  My daughter started vomiting (she is two years old) around noon on Tuesday, the day before Christmas Eve.  I was alone home with her and hoped it was nothing.  She puked and then fell asleep.  Thirty minutes later she awoke pale and continued to vomit and vomit and vomit.  I called her doctor and they said a virus was going around and to just keep an eye on it.  I had an odd feeling something was not right but I listened to her doctor at first.  By three in the afternoon I could no longer bear to see my little one continue to vomit and get worse.  I went with my intuition and took her to Urgent Care, one of the most difficult car rides I have yet to face.  Listening to her vomit and know how terrified she was feeling as I drove left me feeling helpless as all I wanted to do was hold her.  We spent about two hours at our closest Urgent Care and she continued to get worse.  At this point we  both had puke in our hair, on our clothes, and on every blanket/stuffed animal I brought.  They were unable to do anything and thought that she needed to go straight to the emergency room as she got more pale, more lifeless, and had no liquids left in her little body.  I then drove her to the hospital (second worse car ride of my lifetime) where we sat in the waiting room covered in vomit for over two hours.  Once a pediatric room was available she was seen by the doctor immediately.  He said: “Wow, this is the sickest child I have seen today.”  I almost punched him in the face as his bed side manner was so awful I wanted him to feel as bad as my daughter did.  We remained in the hospital for about twelve hours.  Kayci was given six hundred liters of IV fluids, had blood work done and was given x-rays.   I laid on the stretcher with her the entire time and hid my tears as they inserted the IV into her veins.  And yes, I was that mother who refused to get off of her stretcher even during her X-rays.  By four am we were discharged home (Christmas Eve) and she was able to enjoy Christmas.  Not once did my pain enter my mind.  Not once did I think about chronic pain or any of my problems.  All my focus was on my daughter who truly is the toughest child I have yet to meet.  Bias? Yes.  However, I also know my strength and I know a lot of that strength has come from my journey with chronic pain.  Two days of no sleep and being covered in my daughter’s vomit finally caught up to me and I got the stomach virus late Christmas day.  My dad texted me yesterday after I let him know I would be dead for the day: “Wow Jess, what a terrible week for you.  I bet you are ready for the New Year!”  You have no idea, however I am at a point in life where I literally force myself as hard as possible to take one day at a time.  What will January 1st, 2016 be like?  I have no idea.  The only thing I am sure of is that it will take weeks, possibly months to start writing the correct date.

Most of you reading this have chronic pain or some sort of invisible illness and believe because of your “disease” you will not be able to obtain your dream.  Mine: motherhood.  Whatever dream you have, you will obtain it and better than that: you will be so much stronger than you ever thought possible.

One day at a time.  Yesterday is history, tomorrow a mystery, today is a gift.  Tis why it is called the present.

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Some see a Weed and Some see a WISH

This has been a high anxiety a day: fertility is getting under way and it is a lot. Throughout the month there is blood drawn at least once a week, ultrasounds, and medications as they have found the problem. I’m excited, do not get me wrong but it is a lot. My blood test today showed I am not pregnant which was zero surprise as we JUST started this process and my intuition is rarely wrong: chronic pain has taught me to listen to my body! Hence, why I do not listen to other’s opinions regarding my choice to go the fertility route. I knew something was not right just as I knew I was pregnant with Kayci without one symptom. I was lying in my daily yoga class and the instructor asked: “How is everyone feeling?” I jumped out of savasana and shouted: “Shit, I’m pregnant!” I just knew, no one believed me until I took the test twenty minutes later. Point being, I knew something was not right and I have learned to listen to my body (not my pain body but my intuition and heart.) I was correct: my body is not producing a close enough amount of the hormone progesterone to carry a child. I have probably miscarried in the past few months without knowing it because of my lack of progesterone. Had I not made this appointment I would doubtfully get pregnant and if I did I would have most likely miscarried. I am thrilled we are in this process but it can bring with it some anxiety: as all new adventures bring.

I was having just a “blah” day: hormones, chronic pain, etc. Plus, I’m human and some days can just be blah and that is ok! However, I knew a walk with Kayci would benefit both of us. We walked into town to the health food store where she got a healthy treat and I got my favorite drink in the world: kombucha! We have an appointment tonight so I wanted to just enjoy a long walk with Kayci. I allowed her to walk on her own sans stroller even though it added about thirty minutes but it gave me some perspective. Every time my little two year old saw a dandelion she had to pick it up and blow as hard as possible to make a “wish.” I joined in on the fun and just making the wish that I pray for daily made me feel better. I came home with a much better feeling and outlook. It is true that a twenty minute walk outside can truly help one out of a funky mood. Every time I see a dandelion I will never look at it as a weed: to my two year old it is just a wish and seeing through a child’s eye is much healthier than seeing through the eyes of an adult.

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Some see a Weed and Some see a WISH

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Pure Joy

I read a quote once that said: “If you want your children to turn out well, spend fifty percent less money on them, and fifty percent more time with them.” Having a child has made my chronic pain worse and better at the same time. It is sometimes more difficult to manage my pain because well the needs of a one year old do come before my own. I manage my pain without medication by following a pretty rigid schedule in which I make sure to incorporate certain things in my day such as: exercise, meditation, healthy eating, moderation etc. When I worked a nine to five job it was quite easy to incorporate a strict pain management schedule to my life.

I woke up at four fifty am every morning and was at the gym by five am. I slept in work out clothes every night and my gym in less than a mile away from my home. I was able to incorporate meditation at my job because as a medical social worker I taught and practiced meditation with my patients and they loved it. I was able to pack a healthy lunch and oddly enough at the job I loved was able to practice moderation most of the time. My boss knew up front about my brain surgery and my chronic pain before he hired me. Having been through brain surgery and chronic pain I was able to be the best medical social worker I could be. I knew what my patients felt and had more empathy and love for them than your average social worker.

Now, I am a stay at home mom and I would not change that for the world. Although some days are more difficult than others to incorporate each technique I use to manage my pain without medicine, most days are quite easy to follow my management schedule. It has taken a lot of trial and error to figure out how to make it work but each week it does get easier. When my daughter agrees to nap I force myself to do a meditation even when there are a hundred other things I would love to be doing like laundry, cleaning, organizing, etc. I know that for my pain management I need to do this as often as possible. And ya know what, the dishes, laundry, cooking etc. always get done. I very rarely miss a day of exercise. My daughter now has become such a mini me and loves exercise. She actually got excited today when I put in a work out dvd until she demanded more attention but most of the time she loves it. She has perfected many yoga poses. Many morning she literally grabs my running shoes and says: “shoes, outside, shoes, outside” until we are outside running. Yes, that is becoming a little difficult because it is getting colder out but I always find a way to get in a work out in the morning. I have a no excuses rule to that as nothing helps manage my pain better than exercise. She is also the best distraction to my chronic pain that there can be. I am so beyond happy in this picture and we spend hours at a time at the playground. I do not need to spend a lot of money on my daughter because we are so active and just having fun. Talk about a distraction to pain: look at her face! We are just two happy girls playing at the playground. Who would ever look at me and think: she had brain surgery and suffers from chronic pain. People probably would not believe me. I was very scared to become a mother because of my chronic pain. But the fear of never being a mother totally outweighed that fear. My dream has always been to be a mother, chronic pain or not. Now that I am managing it well I honestly cannot wait to have another child.

It is a very good feeling knowing you can do something and make things work that you never thought you could. I was able to do a meditation today and as I write this I hear my daughter singing in the den to Tree Foo Tom. I am literally smiling ear to ear as I write this and the only reason pain is coming to my mind is because I am writing about it. Motherhood is hard. Motherhood is a lot harder managing chronic pain without medication but if I can do it anyone can. Do not let chronic pain take your dreams away. I almost let that happen, thank god I did not give up.

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Pure Joy

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Nothing Is Impossible!!!

My daughter and I headed to the playground today as this may be the last warm day in our area for awhile and we love nothing more than to be outside. After about an hour of meeting other parents and going down every slide ten plus times, I decided to introduce Kayci to one of the greatest things about Autumn: playing in the leaves! We were a mess: throwing leaves, jumping in leaves, and rolling around laughing. Sometimes I have to do that pretend laugh I have a journal I wrote in while I was in the Pain Rehab Center at the Mayo Clinic and it has a list of my biggest fears. My number one fear was that I would never be a mother. And here I am many years later rolling around in leaves with my one year old. Nothing is impossible!

I do not care where you are with your struggle with chronic pain or any invisible illness for that matter, anything is possible. If you saw me on the street would you believe I had a near death accident that resulted in brain surgery and chronic pain. Hell no! Many years ago, you would definitely know something was very wrong with me but not today. What is odd is that I still have that fear I will not have more children. I am sure that has a lot to do with going through two miscarriages but I know in my heart that I will give my daughter a sibling when the time is right.

I struggle every day of my life with my invisible illness but being a mother and watching dreams come true that I truly thought were impossible gives me hope that all of us can make things in our life happen that we believe are impossible. It may not be today, it may not be in a year but you will get there.

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Nothing Is Impossible!!!

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Dreams Do Come True even with CP

Ever since I was about five years old I wanted to be a mother. I played “house” non stop. I forced my younger brother to pretend he was my son and even dressed him up as a girl at times because I wanted a daughter. I never forgot to bring my dolls to the playground and the one time I left Darcy (my cabbage patch kid) at the playground I begged my dad to bring me back to the playground right away so I could find my little girl. I still have Darcy. One day Kayci will have her…..maybe. (I really love that doll haha.)

I never thought I would have a bike accident that led me to brain surgery and half a shaved head. I never thought I would spend weeks in the ICU with my parents praying for me to be okay. I never thought that accident would result in suffering from chronic pain the rest of my life.

Once all these things actually happened everything changed. During my darkest hours of chronic pain I hated seeing happy mother’s with their children. I didn’t like how amazing my friends were doing in college while having the time of their lives. I was jealous of every single person I came in contact with because they did not (to my knowledge) have chronic pain. Everyone seemed happy and alive but me. But the biggest dream I thought would never come true for me was motherhood.

I love this picture of my daughter and I just days ago rolling around in the grass getting extremely dirty and not caring. I still have chronic pain and yet my dreams have come true. I still have more dreams and I work every day at them. I am not very proud of the jealousy I felt towards so many people during the worst times of my battle with chronic pain but I am a different person now. Chronic pain has led to me to the most challenging times in my life but it has also led me to the most amazing parts of my life. No one really can grasp how much I love being a mother. The sound of my daughter laughing makes my eyes fill up. Holding her tiny hand in bed watching the 100th episode of the Wiggles makes my heart skip a beat. I post more pictures than most people probably care to see of this little person. But, I was one hundred percent positive that because of my brain surgery and chronic pain this picture would never be real. I take things for granted too often but I will never take motherhood for granted for a second.

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Dreams Do Come True even with CP

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