.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

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

Delicate Body

I promise you, this one has a happy ending. 


After waiting at the clinic for 90 minutes, I walked out with 400 pages of doctor notes and 2 out of 4 disks (they have to mail the other ones because it would take another hour to download) of all my Thoracic Outlet Syndrome/shoulder/pain related history, not counting my notes from my surgeon, 2 other doctors out of network and two years of visits/tests/evaluations up in Minnesota.

As I was sitting in the clinic waiting patiently in pain, I was angry.  I could barely keep my head up because it felt like 100 pounds that my neck could not support.  I was leaning my side on the back of the couch, using the armrest for my back.  I had tears in my eyes from the burning pain in my ears and sharp stabs in my temples.  I would get a look or stare-down from someone every so often.  I was slouching.  I longed for my yoga pants instead of my baggy jeans.  My whole body ached; including my heart.  It was a rough week both mentally and physically.  I played volleyball this week, and had drinks after with my parents, brother, and friends.  Later I was told from a friend I was faking it.  That he won't feel sorry for me because I drink like 'a fish' and play volleyball but can't put in a full week of work.  That I was an immature 23-year old that didn't have her shit together.  And maybe he's right, maybe I don't.  But nothing was stable anymore.  I didn't even know if I would be able to make it the next few days without losing my mind.  I was on an abandoned ship in the ocean, unable to control the waves, storms that were approaching, or the direction I was heading.  

Signing off for my records, I held the heaping pile of papers in my hand.  I couldn't believe some of the comments and diagnosis and how many times my condition was ignored or brushed off.  My stomach sunk.  I've been staying as positive as I can about the situation.  I say "tomorrow is a new day" or "I will get better eventually."  I put on a mask.  I don't believe myself every time I say it.  The truth is, I don't believe it because I can't.  There were a lot of pieces to this puzzle that I haven't found quite yet.  But I finally found a couple that would definitely help my journey.

Today was bittersweet.  I pondered this while crawling into bed, sore from my massage therapist appointment.  I went through the motions of putting essential oils in my diffuser (lavender for sleep, thieves for immune support).  I lined up my night stand with more oils, water, stopwatch, prescriptions and vitamins. I rubbed Tiger Balm on my neck, shoulder, scapula, ribs and bicep.  I massaged my temples with lavender and sandalwood oil.  Taking a Tramadol, vitamin C and Magnesium, I finally opened up the disks that contained complete brilliance.

I didn't want me to be a mystery to myself anymore.  I want to painstakingly read every doctor note and look at every image and scan of my body.  To me, it's going to be part of my healing process of letting go.  I've held onto anger for so long towards my body.  But seeing those scans, seeing every intricate bone, vessel, curve and tissue in my body made me realize how delicate the human body truly is and how I have to forgive mine.  One image made me stop in my tracks.  It was an MRI comparison of my arm at my side as opposed to above my head.  This is where my TOS was confirmed for ATOS and VTOS, even though I was already diagnosed with NTOS.  50% narrowing of the vein and artery meant I had to have surgery, or I could have ended up with a life-threatening blood clot down the road, undetectable without searching.


But that didn't surprise me.  What really caught my attention was something else.  Something that I have felt my whole life but haven't yet physically seen.  My heart.  It was right there, on my screen.  I gazed at it while I felt it pound in my chest.  Something so silly, yet so marvelous finally came to my attention.  My heart, that has grasped so tightly to crumbling friendships, pounded for breakups, and fluttered through doctor appointments, never had a chance to heal.  It never had a chance to be appreciated and loved and recognized as the one part that has been keeping me together, along with my sometimes-crazy-yet-how-could-I-not-be-mind.  Seeing these images of my body, made me feel like a human again; not just a zombie.  Going through the images millions of times at every angle and every zoom possible made me acknowledge the beauty of my body.  It opened my eyes to a new perspective on my pain and suffering and the artistry of the body itself.  I may not forgive it 100% yet, and it may take awhile, but this is definitely a start.  So I say this with the utter most honesty and purity of heart:  Tomorrow IS a new day.



Equanimity,

Kelsey