.Today.01/08/2018.

On this day 2 years ago, Mom and I traveled to St. Louis to patiently wait for my name in the waiting room of the O.R. What seemed like a normal day to most, was not to me. Nerves tingled inside every cell of my body as I was waiting for some kind of miracle. I was living in pain for years, without a single course of action to completely cure it or curve the pain. Countless tears, bouts of anger and frustration, and days of acceptance and clarity led up to this.  I never really knew how to document this part of my journey or how to put it into words until today.  In the past 2 years, I have picked up my pen, tablet, or phone multiple times only to look at the blank slate with doubt.  I never knew how to start.  It has always been a blurry time for me, and lots of pain and heartache come back when I tried to recall certain details and it got to be too much to handle.  The months that followed my stay in the hospital were fuzzy, but finally today I can recall my stay with crisp and clean clarity.  I can remember every detail, big or small, to an exact replication.  I can remember it as if it were today.

I remember the smell of the hospital, the curve of the bed against my back, the feeling of horror as I woke up not being able to move my arm or feel it as the nurse moved it around while fixing my blanket. I remember my morning nurse taking out the catheter and feeling pain and relief throughout my entire body sent down from the gods and goddesses themselves.  I hear my voice beg for food, only to realize I wouldn't be eating for a full 72 hours (plus the 30 hours before surgery itself.) I feel my first few wobbly, drowsy steps out of bed to the hallway, with my IV stand casting my shadow. I sense my mom's arm gently wrapped around my right arm, with the other gently resting on my stomach as we slowly walked on.  I remember gazing at my left arm, as the pins and needles started, a wonderful sign that my nerves are starting to wake up and heal. 

I see myself holding back tears at 3 in the morning while the nurses prod and poke at my arms several times trying to find a vein, unsuccessful more than 6 times after my IV had slipped out (one of my many nightmares that disrupts sleep to this day.) I can hear the patient on the other side of the room scream and whimper as she waited for nurses to run to her bedside more than a dozen times per night. I can taste the sugar from the Popsicles and jello I was only allowed to eat for days and puking my soul out at 5 in the morning from gut rot and crying to the nurses "I'm sorry" because I would never be able to clean it up myself. I remember the day I was discharged, weak and exhausted.  I can taste the first few Cheerios my nurse smuggled in for me because just like us, she thought it was ridiculous that my doctor didn't clear me to eat bright and early on the 3rd morning.

 I can see my nurses faces while saying 'thank you' and 'goodbye' as mom wheeled me to the elevator.  I remember feeling so trapped , like the journey should feel over but really it only just had begun.  I feel the embarrassment sitting in a swimsuit tipped to one side as my mom washed my hair in the hotel tub while I tried to fade away into Wild Child that was playing in the background. I remember pure happiness from Skyping Julie, another TOS Warrior whom I 'met' on a group a few weeks prior and not feeling so alone in that moment. I remember the sinking feeling in my chest as mom had to empty my drainage tube twice a day and make sure my bandages were clean.

I see my dad's face with a fresh smile as he entered the hotel room with a new body pillow and stuffed elephant, hiding how exhausted he was from his 8 hour trip to scoop me up and take me home.  I remember the feeling when I was finally handed what was left of my rib after getting cleared to go home from my surgeon.  I can feel the light wave-like motion while laying down across the backseat on top of a pillow bed of my parent's SUV.  I remember opening my eyes and looking up out of the window to see my apartment right in front of me, waiting.  I feel the heaviness in my legs as I climbed those stairs with my parents trailing behind, all of my belongings in their hands.  I remember hugging my cats and telling them how much I missed them and how my apartment was arranged and the ugly color of my periwinkle kitchen.  I remember all of that.

And just like that, I don't remember anything after.  For days. For weeks. For Months.  Days dropped by without me noticing like petals gracefully falling off wilted flowers sitting on the dining room table.  I can't remember what I did.  I can't remember who I saw.  I don't recognize certain dates and events that happened.  I don't remember going back to work.  I don't remember eating ice cream or going to a movie or taking a walk or any of it. It was a blur.

But out of all the darkness and fog, what I do remember is this:

I remember fighting my body to wean off pain medication, nausea pills, muscle relaxers, and anything else that was shoved into the brown paper bag I received from the Barnes & Jewish pharmacy.  I remember my foggy mind as I returned to St. Louis for my check ups and when my surgeon commented that my shoulder was healing well.  I remember the stern confidence in his voice, when my voice quivered as I answered questions about the future.  I remember all of my dry-needling appointments with my physical therapist.  I remember every flare-up and migraine after he hit the wrong trigger point.  I can feel the anger swallow my insides as I got results of a partial paralyzed esophagus from surgery after months and months and thousands of dollars spent on testing.  I can feel the burn from all my tears, as if they were imprinted as tiny little scratches on my face.  I can taste the words of defeat when my flare-ups were more frequent, and pain was more constant but I still moved forward.  I can taste, hear, feel, and clench the anger that has been within me over the years.  But today, I let it go.

Today I let go of all of the 'can't' 'won't' and 'shouldn't' moments in the last few years.  Today I grasp what I 'can' 'will' and 'should' do in the present and future.  Today marks two years since that awful, dreadful, painful, delicate, vital, beautiful part of my life.  Today marks the day that I have officially paid off both of my surgeries, multiple tests and medical equipment.  Today I no longer feel like a science experiment, like some animal in a containment cell exhausted from test after test.  Today,  I feel a little more human and back to normal.  Today, I feel incredibly free.


Equanimity,

Kelsey

On the flight to STL with Mom

Pre-Op, getting hooked up and waiting for the OR to be cleared

Post-op from a 4 hour surgery and was first told I couldn't eat because they were concerned with my lymphatic system

1/11/16 my first taste of real food in over 92 hours

Mom and I rooting on the Packers (along with some awesome nurses)

Getting Discharged

BUSTING OUT!

My top scar is from 1st rib resection and removing scalenes.  The bottom scar is from a pec-minor release. 

(Super gross I know)  My drainage tube

Happy as a clam

Getting nervous for the tube removal.  Holding on tightly to "stripes"

Deep breaths!

The undeniably frustrated face after removal. It was like getting kicked in the chest

Mom joked around a little while I scheduled my checkups

Speaking with Dr. Thompson before leaving STL

My rib, in hand, finally out of my body

Motivation.

I am 24 years old, about to turn 25.  My journey with Thoracic Outlet Syndrome started around age 19, with vague symptoms beforehand leading up to it.  At that age, you wouldn't see me on the couch or in bed.  I was driven, hard-working and motivated with every activity.

Since surgery, I have envisioned the next couple of months.  I picture myself healed.  I picture myself kayaking for hours, only leaving the water as the sun sets.  I picture myself up at 6 a.m. ready for my workout routine, going to work, coming home and doing laundry while making my dinner and even have time to clean the turtle tank.  I picture myself active once again.

The reality is that there is no timeline for healing with my body.  I'm not sure when that 'feel-good' moment will happen and it's beginning weigh down my happiness.  I'm scared that once I start physical therapy, it will take a very long time for me to get back to where I used to be.  I was already stir-crazy before my second surgery, and completely fed up after my first surgery in 2014.  The searing pain starting in my ear and running down the back of my head and neck finally ending in my shoulder blade is enough to make me want to rip my hair out.  My inability to lift over 5 pounds makes me feel weak.  Asking my boyfriend to do my dishes is demeaning and having energy to do them one moment and then not the next is confusing.

I've woken up during the night after dreaming of doing yoga.  I dream of climbing mountains and swimming vast open waters and taking a midnight jog.  My smile is content, hungry, eager for more.  I look strong and motivated.  I look healthy.  I usually wake up in a pool of sweat and pain as I roll over to get comfy.  My mind races as I try to venture back into dreamland.

Today, I would like to go back to work.  I talked with my mom about it many times.  My fear is that I will get there and it will be too much.  I'm scared I will over-work myself and cause too much pain or even worse: not work hard enough and look lazy.  With chronic pain, it's one end of the spectrum or the other.  So I've decided I'm not quite there yet.  I want to feel confident going back that no matter what the outcome, it won't affect me mentally.

However, staying home all day with little human contact is strange.  I'm so stir crazy that I want to move to the other side of the world thinking that I can run away from TOS and go back to my normal life.  I know it's silly; thinking I can run away from my pain and problems.  Normal people want to run away from job stress, money problems, relationship struggles.  I just want to be pain-free so I can join society once again as an independent, strong working woman.  I want to feel confident about the work I put into each and every day.  I want to count my blessings as I head to the gym after a 10 hour work day.  I want my parents to be proud of the strong young woman I've become.  And I'm not at that point as I am nearing 25.  I don't like it, and I can't wait to change it.  Although my body isn't the strongest, my motivation is.  It's the fire that fuels me.  It's the fire that makes me get up still every single day, with pain or without, challenging me to become a better person.  It's the fire that is going to get me back to good, but even better.


Equanimity,

Kelsey

Being 24.

Sometimes I wish I were still completely naive; sometimes I wish I were off adventuring the skyscrapers of Chicago or the mountains and valleys out west or even sitting at a cafe in Germany typing a new travel blog post, book or even a letter to my family.  But I am here in Wisconsin dealing with the fear of leaving this area.  The fear of developing Thoracic Outlet Syndrome on my right side. The fear of running down a country road solo and getting a blood clot with no one around to save me. The fear of running out of money with endless medical bills. The fear of not letting anyone take my heart because they will have to deal with my TOS.  The fear of guilt when I look in the mirror and my reflection is once again a child, lollipop in mouth, covered in dirt.  The fear of my freedom fully taken away. The fear of giving up being me.

The last year has been quite challenging.  I've been tested in several different ways.  I've lost lots of loved ones, and gained a few new ones.  I've felt true defeat, both mentally and physically.  I've felt hatred for my body, but also undying love.  I've built up my patience and positive mentality.  I have been knocked down, only to pick myself back up.  I've felt lost in a sea of fog, unknowing of the next storm and unsure if I will make it to shore in one piece. Will I battle through the waves endlessly on driftwood, unable to grasp the life I once always held onto?  Or will I sail to safety?

I ponder this quite often, all my trials and tribulations.  I often question most experiences.  I wonder if other people my age learn life lessons such as the ones I'm about to share with you or if they learn them years down the road, sometimes too late.  There are days I feel so alone, even knowing damn well that countless people have been burdened with the same condition I have.  I am a part of the groups and I have become friends with some and talk to others when they seek advice.  I look up statistics.  I always try to be positive for other people's benefit.  I write this blog and share it to comfort others with chronic pain.  Sometimes I think it's what I was meant to do during my time on this planet.

I would like to share with you a reflection.  This entails secrets in life that I've learned already at the ripe age of 24.  Secrets we all as human beings should learn through the course of life.  However, I've learned them the incredibly hard way, and all at once.



Find the silver lining.

One of the most important things I've learned in this year is: There's always a silver lining.  I imagined my last year of life.  I remember positive experiences like kisses, nights out with friends, sitting by a toasty bonfire, unwrapping Christmas presents.  They stick out in my mind and make me feel 'warm and fuzzy' inside I guess you could say.  However, I am scarred by the negative experiences.  Days and days and days of pain, fatigue and questioning happiness.  Those days turned into blurs of leaves and dust sweeping away into the wispy wind.  They emptied and faded my skin, my mind, my soul.  Left me deteriorating into little grains of sand floating in the breeze.  Before I started developing symptoms of TOS and being diagnosed, I would be completely distraught if my plans went awry.  I would fake happy and say everything was fine and boil inside, or the pot would boil over onto the floor.  I have learned to flip that upside down.  Having a bad day Kelsey?  Nothing going your way?  Battery dead on your car, pain from your nose to belly button, no food in the fridge for your

stomach that doesn't even want it?  Guess what:  Your cats know you're upset.  They sympathize by laying on your lap, comforting you.  You just created a beautiful piece of art that will shine for the rest of your life, even if you're the only one proud.  You made a lady's day at Walmart by complimenting her lovely locks after seeing her almost cry.  You only have three dishes to wash.  Hell, that's a lot better than a sink full.  Nothing beats a silver lining, whether it be a chocolate, a small accomplishment, a kiss; it's all relevant in maintaining a sane, happy mind.

Empathy.

Not everyone in life is going through a chronic pain condition.  Not everyone in life has to completely plan out a day to make sure there will be enough energy.  Not everyone has to make sacrifices and give up things they love.  But everyone is going through their own battles, whether big or small.  I went to the doctor for a routine medication check up and my nurse wasn't the daisy of all daisies.  In fact, she was incredibly short with me, barely looked me in the eye and kept cutting me off.  Instead of looking at it as complete and utter disrespect, I took it as an initiative to continue being polite.  As I was driving home, I realized that I have no idea what happens before she arrives to work, gets into the examination room and what happens when she goes home from work.  She may have had one of the worst mornings of her life and couldn't separate work life from home life.  As my condition continues and days get what seems more complicated, I find myself understanding a lot more about people's situations and lives.  We all may be battling wars big or small and in separate ways, but it doesn't hurt to send a smile or a 'hello' someone's way.


Patience.
The waiting game, as I like to call it, is the time frame between doctor appointments.  I make a doctor appointment, wait for insurance to accept while getting updates back and forth from them to the doctor office.  I meet with the doctor and he or she tells me there is only so much one doctor can do before handing me off to another without fully knowing what my body is up to.  I say, thank you for your help, I appreciate the referral to the next doctor, and leave completely distraught.  Then I make a phone call to my primary doctor to put in the referral for the next doctor.  Time ticks away, sometimes weeks, as my insurance company reviews the next doctor.  They finally accept and upon calling the new doctor's office, I find out the next doctor appointment is weeks or months out.  Upon that appointment, I get a new medication or new injection and wait to see if it works while waiting out the side effects before seeing another doctor.  This is a meticulously exhausting routine.  You'd think I would give up hope and melt to a puddle on the exam floor, but I always remind myself that my newly found patience will carry me through.  I remind myself that the world doesn't revolve around me and sometimes life isn't going to go my way.  Patience will carry through and whatever happens, happens.

Let yourself feel.

One of the biggest hardships I have is bottling my emotions.  Sometimes I'm so overwhelmed trying to figure everything out that I don't take time to feel the raw emotions running through my body.  If I find a beautiful scene outside while walking, I take time to completely appreciate and feel bliss before moving on.  If I need to cry because I feel sorry for my body, I let the tears run.  If I'm angry with someone for interrupting me, I speak my mind.  It's time to cut the crap; I'm 24 and I'm never going to get any younger.  Why go through life walking on egg shells around your own mind?  Let yourself feel, and your body will thank you.

Dance.

Sometimes, life never seems to be going in the right direction.  Sometimes, everything seems to be causing pain, negativity, stress and hardship.  And sometimes, you need to dance.  I've found myself scanning the Pandora on my iPod, unaware of how I became utterly miserable.  I shake my head as if I'm ridding the thought and turn on an upbeat station.  I grab Ellington in my arms and start the cha cha with his furry little paws.  For a few minutes, all my worries flow into the melody that is dancing around my small Wisconsin apartment.  I slide my feet on the linoleum floor as all the stress escapes from my waving limbs.  For a few minutes, my mind is at ease and I escape the pain.  Once the music stops, and I am again faced with the reality of my body pain.  But I am overwhelmingly happier.  Music has always been an outlet for my emotions, and I am never going to take it for granted.  Every person going through something difficult should try to find their 'cha-cha.' I promise you:  In the end, it helps.

Enjoy and respect the body.

I remind myself every day to listen to my body.  If I'm tired, I need to rest.  If my collarbone hurts, I need to ice it.  If I'm stressed, I need to take a deep breath and do something that makes me happy.  Of all the things I'm going through, stress is the last thing I want to affect my body and mind.  I love my body, even if it's a little broken.   Here's what happened when I developed Thoracic Outlet Syndrome:  I was trapped with myself every day, pain free or not.  My mind wanted to be a free spirit but my body was plastered onto my bed, aching for pain meds and relief.  I'm anxious because I can't escape my own skin.  But then I looked at the big picture and started accepting my body for what it is:  Beautiful.  Why lay in pain hating the body, when it's only trying to support me and heal as fast as it can?  When my mind wonders from optimism, I ground myself by reciting what I love most about myself:  My soft skin mixed from both of my parent's beautiful genes, my ability to tickle my own feet, my curly unruly hair, my ears and especially my heart.  In my mind, one truly cannot be happy until one loves every ounce, vessel, pore and fingernail on the body.  I respect my body, even the mangled first rib that was causing the perfect storm to rip through my entire being.

And finally, equanimity
If you notice on my posts, I usually sign off with "Equanimity."  The definition is:

noun

1.

mental or emotional stability or composure, especially under tension or strain; 

calmness; equilibrium.

I practice equanimity every day.  It's my 'bliss' word to calm me down in difficult situations.  Saying it out loud or writing it in cursive instantly relaxes me and reminds me that life is unpredictable and I need to let fate take the wheel.  I cannot simply control all aspects of my life; I cannot control my pain, fatigue, and dizziness just like I cannot control which way the wind blows.  But I can control how I battle each and every gust.  And I handle that with equanimity.




Equanimity,

Kelsey 

5

I receive a lot of comments about my condition and situation.  Recently, I've experienced a lot of negativity from bystanders since I started volleyball and being active in my old lifestyle.  Here are a few that have hit home.  People with chronic pain having feelings too, you know.

1.  I am judged.
"How come you can play volleyball but still be in so much pain?"

My pain is always present.  The severity of pain changes.  The location of pain is random.  As I sit here typing, I have an ice pack resting on my collarbone that feels like it's being pulled out by a pliers.  My chest is tight, making it hard to take a deep breath.  My fingers on the affected side are trembling and weak, causing several typos that I eventually have to fix.  I can't make a strong fist.  However, my mind is as ease as I listen to Ed Sheeran Pandora with the scent of Tiger Balm lingering out of my clothing.  I am happy.  I am alive.  I am still  a human being.  It hurts when people judge me without looking at the bigger portrait first.  Picture your prized possession in life.  Something that brings you incredible satisfaction and pure joy.  Hold it in your hand.  Now picture a shadow coming out from the darkest depths of hell and taking it from your grasp, swallowing it whole.  That's what would happen if I had to give up volleyball.  I wouldn't be me anymore.  I wouldn't be Kelsey.

2.  I am bullied. 
"How can you honestly be in pain?  You've got to be faking it."

*Insert a huge amount of sarcasm here*
Yes, I have been ruining my own life for 4 years.  I have lost friends, family, boyfriends out of pure laziness.  I have put my career on hold just to move back home and become miserable.  I sit at home and watch movies because I find being alone enjoyable.  I go to all these doctor appointments because I love sitting in ugly gowns for the hell of it.

The truth is, this condition has taken over my life for the last 4 years.  I have chosen to cut communications with negative people in my life, and some have chosen to cut me because I am just too much to handle.  I needed to move back home for the flexibility of my job so I can take off for appointments and also so my family can drive me to distant appointments.  The flare-up days make me lay in bed, unable crawl to my living room or open my eyes to even watch TV.  I mentally have to prepare for each appointment.  I have to prepare for a let down, or a referral to another doctor that won't know anything about TOS.  I have to prepare to re-tell my story to both the nurse and doctor.  Negative thoughts arise about people that have hurt me in the past every time I repeat it.  It's extremely exhausting.

3.  I've been given unrelated advice.
"One time I broke my ankle and physical therapy and Advil really helped me.  Have you tried that?"

I am extremely grateful for people wanting to help.  I am humbled when people come of the darkness to offer their advice.  But until you have a chronic pain condition, understanding will never fully be 100%.  Having a chronic pain condition is like a bird having a broken wing that cannot be mended.  They are able to live.  They are able to get off the ground every once in awhile.  They are still able to walk around.  But will never have 100% quality of life.  I have tried just about every outlet for pain-relief.  I learn to live with it.   I can't have just one primary doctor taking care of me like you would for a cold or broken bone.  I have to bounce around to several doctors because several health factors are present.

4.  I wouldn't wish this condition on my worst enemy.
"Don't you ever wish people would get this for a day just so they understood?"

The quote has been said by my lips out of anger a handful of times and has also been said from many fellow chronic pain patients.  However, I regret it instantly after.  I could never picture one of my friends or family members suffering this much, let alone the nasty people that have tainted my life.  The journey I've gone through to this point has been miserable and exhausting.  Like a lot of TOSers, people around us don't understand fully what we go through.  So it's incredibly hard not to wish negative thoughts on others that brush us off.  I am a forgiving person, but some comments are still burning my blood.  Instead of being a pushover to forgive, I simply rise above and write it off as ignorance while sending them positive vibes to their lives.  It's the healthiest way for me to move on.  In the future, I hope there is more awareness for this condition, let alone all of the other invisible illnesses/conditions. For now, I will deal with the ignorance with equanimity.

5.  I haven't given up yet; and I don't plan to.
"Don't you ever feel like enough is enough?  Don't you feel like just giving up?"

Truthfully, I am strong, even if I am broken.  I've endured lots of pain and suffering.  But who hasn't at least once in their life?  Sometimes I cannot get out of bed because the depression and pure exhaustion and the condition ties my wrists and locks me in my room, away from the world.  Sad to say, but I am incredibly used to the pain, as irritating as it is.  It's my least concern.  The greatest pain and suffering comes from the bullying, judgement and misunderstanding I experience.  It takes such a toll on my mind and body.   Being put down is a sick thing to do.  The mind is left with such a sick and foggy feeling.  However, the mind is a powerful part of the body.  The audience is watching, standing by waiting for me to crumble to the ground.  Waiting for me to break and give in to the dark depths of my pain, anger, sadness and exhaustion.  I'm not quite at that point yet.  So TOS, you can try, but you can't break this girl.

Equanimity,

Kelsey

Ever heard of Botox Injections... Not for your face?

The last time I woke up before 5:30 a.m. was in October, before my flight to California; and even then I was more crabby than Paris Hilton's drawers.  I threw my phone upon hearing my alarm, accidentally kicked my cats at the end of my bed and nailed my foot on my desk chair.  It was safe to say I have no coordination when I'm zombie-tired.

Today I traveled an hour and twenty minutes to Froedtert Medical College Campus in Milwaukee, Wisconsin for a doctor appointment with a physical medicine and rehabilitation physician.  My appointment was at 8:00 a.m. and my dad picked me up at 6:30.  Knowing we were driving through Milwaukee at one of the worst times during the day, I was relatively stressed about being late.  The coffee in my stomach was already providing me with enough jitters but the anxiety enhanced them.  Instantly I started feeling the brunt of my symptoms swell over my body.  Bumpy roads and no pillow made for an angry body.

We hit stand still traffic at 7:30 and I started panicking.  I couldn't call the clinic to let them know we might be late because they don't answer the phones until 8:00 a.m.  I found this to be hilarious.  Once off the highway, winding through the streets of Milwaukee, we finally arrived at Froedtert.  People curiously stared as we were fast-walking through the halls while following directions on a printout.  Relief settled in my bones as we made it to registration at 8:02.  My name was called almost immediately. Like all doctor appointments, I was skeptical to walk in, but I needed to keep my shit together.  I had a long appointment ahead of me.

I settled into room number 2 as the nurse took my blood pressure and made small talk.  No matter how stressed I get, my blood pressure remains impeccable at 112/80.  I noticed the pre-millennium hospital bed across from me and chuckled to myself.  The first doctor was a resident to the main doctor I was going to see.  He asked all the intricate detail questions so he can put them on file.  Healthy people will never know how exhausting it is having to re-tell a story over and over and over again to every doctor.  Every time it makes me tear up.  Every time it makes me feel weak.  Every time it makes me feel like I am the only person going through with it and that I am foreign to all other human beings.  My neck started shooting lightning bolts into my head while looking at him on an angle so I re-positioned myself slanted in the chair facing the doctor.  It probably looked incredibly silly.  He checked my reflexes and told me Dr. Ketchum should be in shortly.

Now the reason for this visit is because I have exhausted all of my other options post-surgery.  Medications, physical therapy, chiropractor, rest, massage therapy, trigger point injections and cortisone injections.  All my appointments through the last 6 months ran through my mind as tears started to form.  I mean I've been super emotional because of withdrawals from duloxetine (a medication being used for neurological pain) but come on!  I kept telling myself to keep it together, and like Chuck Norris would do, I scared those tears right back into my eye lids.

Once Doctor Ketchum did an examination, he concluded that I have dystonia in some of my muscles around my neck, collarbone, shoulder and head that have developed since surgery.  He explained it as having muscles that don't know how to 'turn off.'  And since I was having symptoms for years without a diagnosis, they had plenty of time to get comfortable being pains in the ass.  Groups of muscles can cramp around the veins, arteries and nerves, which could be why I'm in so much pain.  He suggested we try Botox Injections, every 3 months for 9 months to find relief. If my pain levels drop I will be able to start physical therapy to strengthen my muscles.  Doctor Ketchum wants to try pin-pointing areas in the back of my head for migraine relief while targeting others in my neck and shoulder area.  There are a few risks, especially injection in this area, that include difficulty swallowing, speaking or muscle weakness.  He reassured me that they are rare to happen and if they do, the injections wear off eventually.

Here is the hard part.  Like all other doctor appointments, I like to be prepared in case if treatment doesn't work.  It's not that I try to set myself up for failure; trust me, I'm a very optimistic person.  I like to be prepared rather than let in the dark and make a last minute decision.  We discussed if that were to happen and made a plan.  Finding little to no relief from these injections could indicate nerve entrapment and I would have to get another EMG.  However, I'm hoping that this does the trick.

I am also starting an experiment with CBD Tincture Oil.  Referred from a friend, I did a little research and found that it can be beneficial for patients with fibromyalgia, chronic pain and many other medical issues.  I purchased a bottle of 100 mg vanilla flavored oil.  Each serving is 1 mg and the dose can be adjusted depending on how much you need.  For those of you that want a little more information, here are a few articles I found to be helpful:

Buying Guide
Story that will put a tear to your eye
Article
Benefits






I will be updating my progress from the Botox Injections and Oil upon receiving them.  Cross your fingers.

Equanimity,

-Kelsey

Equanimity

Dear friends and family,

Although I love and respect each and every one of you,  there are some things we need to clarify.  I have written this letter with no intention to hurt anyone; only find understanding.

With Thoracic Outlet Syndrome, surgery does not heal all.  Our condition is so rare, doctors do not have a basis to go off of.  It works for some, fails or makes worse for most.  There are definitely success stories where people return to their normal activities and have a happy life.  I am not there yet.  So when I have a hard time answering your questions, please do not look at me like I am a fool; for not even the doctors know the answer.

Along with Thoracic Outlet Syndrome comes chronic pain.  I've been dealing with this for years.  If I may look grumpy or I'm less than talkative, I am only furrowing my brow because I'm in pain.  Make no mistake, I try to stay in good spirits.  I think of all the things I'm thankful for in life when lightning bolts strike my temples and run down my spine.  I think of all of you.  And I think of my support groups that have to go through the same pain and I loathe this condition for hurting my dear friends.

Chronic pain brings fatigue, which brings an undeniable feeling of depression.  It's like waking up chained to the bottom of the ocean every day and not having enough energy to break the surface.  If I do make it to the surface and leave the house, I have to mentally prepare myself.  I need to plan out what I'm going to say every single day.  I have to make excuses to miss out on great opportunities due to exhaustion.  I have to force myself to go through a full day of work pretending like everything is OK, even though I want to fall over.  The worst part of this is quieting my thoughts.  Which is why you'll most likely see me with headphones or my iPod very near.  By the time I get home,  a storm has set in and sunk my boat.  Dishes and housework, normally dear to me, become my enemies at the bottom of the sea.  Finally resting in bed, I cannot shut my thoughts off and usually lay restless until the wee hours of the morning when my body can't take it anymore.  I wake up to the sunrise and realizing I have to do it all over again, I smile knowing that I can.

You may not understand this, but I am battling with Thoracic Outlet Syndrome every day.  If I have a really good day, I'm probably going to have a bad one the next.  And that's not pessimism.  You see, if I have a wonderful day with you and use all my energy, I will wake up sore the following.  However, I will wake up with a sore body, not a sore heart.  I appreciate my good times and that makes my bad days completely worth it.

On that note, I can do certain activities one day and may not be able to do them the next.  Do not fret, a day will come where I can do them once again.  It doesn't upset me.  I've learned to live a content life and be happy with what I can do for now.  I cherish my past and excitedly wait for my future while trying to live in the now.

Here's the kicker.  I've heard, "You're too young to be dealing with an issue like this," way too many times.  I deal with this battle every day and understand your frustration.  I am not frustrated with the pain as much as I am with the mystery of it.  Every time I hear those pain staking words come out of another loved one, it puts my body into panic mode.  Because I AM only 23, I could very well be dealing with pain and exhaustion for the rest of my life.  The less I think about it the better my mind is at ease.  What doesn't kill me, will only make me a stronger woman in return.

I've come to realize my life is chaotic and unexpected.  I learned that every day is going to be a battle.  I learned that every day has something new waiting for me, whether it is good or bad.  If I get a bad phone call, I make up for it by doing a small task that makes me still feel human, like painting.  I read and catch up on my episodes of Mad Men and Archer.  I take comfort in my cats, my biggest blessing of all through this.  Some may call me a crazy cat lady, but I would be crazy if I didn't have them.  I enjoy my nights out with all of you, but also appreciate my nights in.  It's a roller-coaster I've come to ride on every day of my life for the last few years.  

I don't know what the future holds, and neither do you.  My days might be different from yours, and you might be battling a bigger or smaller demon too.  This letter has no intent of complaining or looking for pity.  I am well aware of every single positive that my life has held on to ever so tightly.  Thoracic Outlet Syndrome is difficult for everyone of us that has to live in it's painful grasp, and it's more difficult if we don't have the support from our dearest.  The purpose is to ask for a little empathy, hope and encouragement from each and every one of you, even on our toughest days.  Because a little goes a long way.

Here is some help:
Encourage me when I've lost a battle to a phone call with a doctor.
Hug me lightly when I've had a bad day.
Tell me I'm strong when I feel like giving up.
Re-direct my thoughts positively when they stray into the darkness.
Tell me how proud you are of me, even at my weakest moments.
Make sure I never give up.

Equanimity,

Kelsey Lynne