.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

Winter Recovery

I've always hated the cold.
I've always despised shivers. Numb feet and hands.  Raw nose.
But I've always loved the crunch of fresh-fallen snow under my boots.
The outlines of every branch highlighted by a light dusting in the morning.
Building snowmen.

I try to find the good in everything.  The colder Wisconsin months out of the year usually wind up giving me pneumonia or bronchitis.  It's not Winter's fault!  At least that's what I try to tell myself.  It's my suppressed immune system from the depressing thoughts in my mind that translate to a weakened and fragile state.  But it's not Winter's fault.  It's just a coincidence I get sick every year.

This year I was hoping to not catch the bug.  Three weeks post-op and here I sit sniffling, wrapped tight in a fuzzy suede-colored blanket, reaching for a roll of toilet paper on top of the coffee table.  I blow my nose hoping to get whatever mucus is left glued tight in my sinus cavity.  I angrily throw the crumpled up tissue into the trash bin while trying to decide if it's time for more cough medicine.  I can't remember.  I can't even remember the dosage my doctor told me while I sat on the exam table trying with all my mite not to sneeze or cough in his face.  My eyes were watering; that's all I remember.  A respiratory infection.  Swollen Lymph Nodes.  Whatever.  My body can't focus on two things at once, what did I expect?  My immune system is trying to figure out why the fuck it's down a rib and then this bug strolls in undercover, looking all cool with dark shades and a trench coat so my mind doesn't think otherwise.  I wouldn't have alerted the authorities either with a cool demeanor like that.

Today, I am writing out of sheer anger, bored-ness, and loneliness.  There's a void I have that can only be filling with writing.  To you.  My chronic darlings.  Are you out there?

Recovery is such a silly thing.  I went into it thinking it was going to be a breeze.  I've been sitting on my butt already for the last couple years wishing and waiting.  What's a few more weeks?  But I was wrong. I should have prepared myself mentally.  The pain I can handle.  It's the constant sadness that gets to me. Is this what postpartum depression feels like?  The event of surgery was so great and big and everything that led up to it was emotional, spiritual, complicated.  And then all of the sudden nothing.  I knew I wasn't going to be healed instantly; but did my mind fully understand that?

It took having my mother wash my 24-year old self in the bath tub while wearing a swimming suit to hit the rock bottom of emotions.  I was sick to my stomach.  My pride was hurt.  Everything that happened within the last few years from all the doctors, tests and diagnosing to a failed surgery and failed relationships and one failed friendship just instantly came back and slugged me in the stomach.  It hurt to breathe knowing what I've all gone through.  What I've lost.  What I can't get back no matter how fixed I became.  While my body is repairing itself and recovering, my mind is still lost at sea.

I hate feeling helpless.  I've already hurt myself a dozen times lifting things I shouldn't and this and that.  The doctors give you restrictions to abide by, and a list of things to avoid.  What they don't tell you is if you're alone all day and most nights like me, you're screwed.

I had to start scheduling my showers when my boyfriend was over so I wouldn't fall, or he could help scrub my hair.  I tried not to use a lot of dishes because they would sit for a week until someone would hand-wash them.  Whether snowed in or not, the first couple weeks I was trapped, unable to drive myself anywhere or blow off steam.  These things were hard to adjust to but alas, I handled it.

The hardest part of my recovery is the hours and hours alone without human contact.  I've gotten cards and get-well packages and they made my days a lot easier.  But being a social person, nothing is fully grasping my needs.  Netflix is boring, books are tasteless.  There is an allotted amount of time you should be talking to your animals, and I've exceeded it by plenty.

If I could go back before my surgery to change anything, it would be to devise a plan post-surgery.  I know I can fix it still (which I have been) but it's still difficult with a foggy mind and less energy.  Here are a few tips to make your post-surgery better:

1.  Seek out a 911 buddy.
Not as in 'I need to go to the hospital 911,' but instead the 'I'm feeling the blues and I need to talk.'  Even someone to check in on you from time to time.  Yes, I have my boyfriend and some closer friends, but I didn't establish that I needed help before my surgery so now it's weird to admit.  I'm a stubborn person, so it will take an army for me to admit that I need help.

2.  Plan light trips.
Have an idea for that empty space on the wall in your dining room?  Look for ideas on Pinterest, grab a friend and go to Hobby Lobby.  Although you may not be able to complete it for a few weeks (without the help of your significant other, relative etc.) it's something to get your mind running and looking toward the future positively.  Another idea is science museums, art museums, matinee movies; anything that will satisfy your mind.

3.  Buy a self-help book.
Whether it's for depression, healing, moving on, or a book about weight-loss, prepare yourself for post-surgery blues.  This is one thing that has been helping me tremendously.  I focused in on two people that I look up to:  Toni Bernhard and Chelsea Handler.  Yes, two completely different people, but both on healing-ish paths.  Toni Bernhard has two books, "How to be sick" and "How to heal" that gives her own examples on self healing as well as things she has learned from the spiritual Buddhism route.  Anything I find helpful to me at the time, I highlight or underline.  Chelsea Handler has inspired me because she is just as stubborn as I am.  She has a few books documenting her screwed-up childhood and her rise to fame.  She also has a netflix series called, "Chelsea Does" that talks about certain subjects that interest her.  Her life along with her humor and passions fascinate me and it makes for good down-time if I'm ever feeling depressed.

4.  Start writing.
You don't need to be Shel Silverstein or Dr. Seuss or even Ghandi to write.  And it doesn't have to be a book.  Hell, it doesn't even need to be a paragraph.  When you're mad, write down that you're mad.  Express why you're mad.  Express your exact feelings.  Then crumple it up and toss it in the trash.  When you're happy, write down exactly what is making you feel this incredible mood.  No one ever needs to read these, or if you want to share with your loved one, you may.  This is more of an emotional release for your mind.  Sometimes when I am angry, I can't think straight.  I go on bouts of not being able to write because of the anger.  It scrambles the words and thoughts in my head and creates a foggy haze over my creativity.  Writing down my emotions (like I am today) releases my creativity back into the clouds that eventually drops it into your hands.

5.  Tell yourself about gratefulness.
Express every single day why you're grateful to be alive.  Express why you're happy to wake up in the morning.  Even on the toughest days, try to shed light.  I'll give you an example.  Today, I woke up extremely sick, more sick than I was when this cold first barged in.  I realized I needed to see the doctor which is twenty minutes away.  I am still in pain so I avoid driving more than a couple minute trips.  My parents or boyfriend couldn't take me so I went alone.  Upon leaving the doctor's office with the diagnosis mentioned above, I noticed winter storm "Bucky" had already arrived, complicating my travel a bit.  After sliding on the roads, not being able to get my medications from the pharmacy for an hour because my insurance number switched, I pulled into my garage in tears.  I was so sick and exhausted from a 4 hour out-of-the-house stint.  I got inside and took a deep breath and thought, "I am grateful because I got home safely from the doctor's office, and now I can take my medication to stop coughing, heat up some homemade soup from my dad and relax."  Thinking about this as I sat down with my hot soup instantly changed my perception of the day.  I shouldn't be cranky that all those unfortunate things happened, I need to be grateful for the medication and that I'm fortunate enough to be able to have medication at all.

Remember, there are plenty of free websites and hotlines for depression.  Never be afraid to reach out for help. Here are a few:

http://www.yourlifeyourvoice.org/Pages/ways-to-get-help.aspx
http://samaritansnyc.org/24-hour-crisis-hotline/
http://www.dbsalliance.org/site/PageServer?pagename=urgent_crisis_hotline

It's not giving in to your dark side, it's letting a little light back in.

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  

The Next Chapter: Post 1st Rib Resection Surgery for Thoracic Outlet Syndrome

My first rib resection surgery was scheduled for July 1st at 8:00 a.m. at St. Luke's in Milwaukee, Wisconsin.  The surgery was an hour long and it was successful.  The incision was under my arm and was 2.5 inches long.  They stitched a drainage tube underneath and took it out a day after surgery.

I spent two nights in the hospital due to a bad reaction to pill-form pain medication.  During those nights, my mom stayed with me.  She kept my water glass full and re-arranged my pillows for comfort.  The nurses laughed at how many pillows I asked for, but it was easier to find a comfortable position to sleep in.  A few hours after my surgery, my mom placed a sock monkey I now call 'Stitches' in front of me.  Between Stitches and my minion blanket, I felt very relaxed and comfortable.

I was very fortunate to have my mom stay with me for three days. She comforted me in the ICU recovery room while waiting for my hospital room, rubbed my back with a cold towel when I had the bad reaction to pain killers, and kept me calm when they took out my drainage tube.

Once I was stable, I was released on Thursday, July 3rd at 1:00 p.m.  I was irritable and groggy, but completely excited to be going home.  Since the car ride was 80 minutes, I brought pillows to support my arm from moving during the trip home.  We stopped twenty minutes before home to pick up my prescriptions, and I even convinced her to get Taco Bell!
 

My first night home went surprisingly smooth.  The pain medication knocked me out until a migraine started at 5:00 a.m. in the morning.  I thought it was just from dehydration so I drank a few glasses of water.  By 8:00 a.m. it was a full blown deathly tornado raging through my brain.  It hurt to speak.  It hurt to breathe.  I sobbed for hours and sat over the toilet waiting to puke.  I braced myself for the pain that was going to charge through my chest but thankfully, I didn't puke.  My mom had cold towels on my neck, forehead and cheeks.  Finally, I slammed a glass of mountain dew and took Excedrin.  She got me back in bed and exhausted from crying, I fell asleep. 

Incision 3 days after surgery

With my brother, Jake

With my cousin, Cody

By that night, I had just enough energy to get smoothies with my cousin and friend and went to the fireworks at a neighboring town with my family.  I wore a sling to warn others not to bump into me.  I was only gone for 3 hours, but my bed was calling my name.  I was extremely sore so I routinely took my pain medications the first few days.  I came to the conclusion I was more exhausted when I was in pain than on the medications.

Incision 5 days after surgery

I spent the rest of the weekend icing and in bed.  My body would grow tired after an hour of being up and about, and I would have to fall back asleep.  I would lay on my right side and had to take a deep breath in order to get back up.  It felt like my lungs were being squished.  I propped a pillow up behind my left shoulder and slept on my back when any other position failed.  That was my biggest struggle after surgery: finding a comfy position where I wasn't in pain.  But I was healing fast and that's all that mattered.  My neighbor dropped by with flowers, snack packs (my favorite), a balloon and an inspirational note which got me through the tough days.  I don't know if it was mentioned but I am obsessed with minions, so a good family friend made minions out of chip cans.  My support system was stronger than ever.

I had both of my cat's to comfort me.  The second I came back from the hospital, Dimitri (above) wouldn't leave my side.  Ellington (right) normally sits on my chest and walks over my shoulders to wake me up, but he refrained after my surgery.  That's the funny thing about animals;  they have that instinct and it is wonderful.  They would give me a reason to get up and walk around, or be a little bit more active each day.  Secretly I think they sped up my healing process exponentially.  

A week after surgery, I was able to get up and move around a lot easier.  I spent time organizing things in my apartment, growing my travel board on Pinterest and doing crafts.  I was able to shower on my own, even though it was a slow process.  There were definitely times that I sat in bed wondering what I should do, or how much I should do.  Nights I spent hanging out with a friend ended in mornings of pain and exhaustion. I got angry with my body for being so tired, but realized it was just part of the process.  I needed to let myself be tired and fall asleep and take 5 naps a day.  My body needed to recuperate.

Slowly but surely, I was able to ween off my pain medicines and barely take them.  That was my first goal post-surgery.  I tracked them on a dry-erase board so I didn't overdose or miss a dose.  To make sure I didn't get an upset stomach, I always had a snack with them, even though it was hard to eat.  I lost my appetite and forgot to eat certain days.  After surgery I lost 7 pounds within the first week.  It's a little ironic that I jokingly told my friend she had to make sure I didn't gain weight after surgery!

10 days post surgery, I was starting to get my energy back.  My incision sight was healing phenomenally and the pain levels were going down.  I started thinking more positively about the future.  It was easier to wake up in the morning.  It was easier to stay positive, even in pain.  St. Luke's called and said my check-up is set for July 30th and so I had another exciting day to countdown to.  

I started getting incredibly anxious sitting at home.  I started driving 10 days post surgery, off my pain medications, and returned to work 13 days after.  I've never felt this strong and determined in my life.  I'm excited for what the future holds, and I'm excited for the next chapter in my life. 

Equanimity,

Kelsey

The Devil Within: Thoracic Outlet Syndrome

Spring, 2011

One rainy May day in Mankato, Minnesota, I noticed a tingly pain run down my left shoulder blade.  I thought, I must have pinched a nerve.  I should probably stretch.  So I stretched.  Two days later, the pain started again.  Then continued on for days, weeks and months.  The pain escalated and shocked me. It woke me up in the middle of the night to throw me in front of a train.  It traveled down my arm and in my neck with a mission to make my day a living hell.  It held me down with all its force on the most beautiful sunny days and soaked my head with depressive dark thoughts on the coldest of winter days.  It ripped apart my friendships, relationships and injected fear in me to meet new people.

It took over my life, and I let it.  Temporarily. 

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The doctors ran all of the tests:  MRI of the neck, shoulder and spine.  CT of the Neck. X-ray of the rib cage, shoulder, neck and spine.  I went to a myofascial release therapist that worked awkwardly on my fascia while I was covered in a cold, itchy sheet.  I went to chiropractors in Mankato and near my hometown in Kiel, Wisconsin, while trying to visit my family and ignore the incredibly powerful situation I was pinned in.  Doctors tried releasing the constricted muscles in my neck and shoulder, trying to figure out why they tightened day in and day out.  I was given muscle relaxants, pain killers, anti-anxiety medication, sleeping pills, bio-freeze, icy-hot, ice packs and heating pads.  I had mood swings and withdrawals and was late for classes and for work and turned into a zombie with this pill and puked off of that pill and didn't eat on that one.  My medicine cabinet slowly started looking like a pharmacy.   

Fall, 2011

I will never forget my first major breakdown.  A doctor in Mankato told me it was all in my head.  He suggested I see a therapist immediately and start anti-depressant medications without even examining me or have me dress in one of the many fabulous hospital gowns I've gotten to know.  I stood up and walked out of the clinic and managed to make it to my car with my wobbly legs.  I dialed my mother, and repeated what the doctor said.  She coyly said it could be possible and it would be a good idea to look into it.  (At this point, I don't think she knew what to say, even though I needed her.  She was one of my only full supporters through this journey.) I politely hung up the phone.  Anger was boiling through my veins, my arteries, my nerves.  Tears welled up in my eyes as I rested my head on the steering wheel.  I sobbed for an hour in the parking lot of the clinic that day, and a little piece of hope inside me dwindled.  I wiped my makeup stained tears off my puffy face and the steering wheel, turned the key and drove home.  

Some Struggles.

I couldn't participate in certain sports.  I had to sit out during my running class in college because running hurt.  I felt pathetic.  I had a hard time completing my duties at work.  I looked like I had the easy jobs to other co-workers, who slowly resented me.  I broke down in the back room crying because I wanted to do more.  I wanted to have the energy to work more than 8 hours.  I wanted to be normal again.  I could drink 4 cups of coffee and still fall asleep while operating a machine.  I never did, thankfully.

I didn't want to run errands with my mom.  And when she asked me to tag along I almost always ended up snapping at her.  It wasn't even what she was saying or how she was acting.  The irritability was growing uncontrollably inside me and I would yell at her for no reason or give her attitude.  Then I would go home and beat myself up for hurting my mom yet again.  My brothers told me to be nicer and don't shout at your mom or my favorite: quit being a bitch.  But I couldn't control it.  I was losing patience and losing my own battle to myself.

I always wanted to take naps.  Whether it was at my grandparents' house watching the football game, a shopping spree with my family or a movie with my friends; it was all the same.  My mind was set  on 'nap' mode.  The pain was exhausting.  I came up with the lamest excuses for getting out of activities and outings.  I even used 'Dimitri puked and I need to clean the carpet' many times or, 'Ellington is acting funny, I think I need to investigate.'  (Poor cats, they always get the bad image.)  I would say anything to get out of everything.  My body was exhausted from hiding the pain or trying to make it go away.  My mind was exhausted.  My whole being was defeated everywhere I went.  And I couldn't explain it to anyone or tell the truth, because I didn't have an answer myself.

I took pain killers (non-narcotic: my choice) for months straight, which caused a new variety of strange symptoms.  Headaches, depression, stomach upset, tiredness, fatigue.  Wait, wait, wait, didn't I have enough to deal with?  When I decided to take them, my days went by in a blur.  When I didn't, they dragged on like a bad hangover.  I could either choose to be drowsy on pills or miserable and cranky without them.  It was a personal choice of who I wanted to be when I woke up, every single day.

I stayed inside for days on end, watching movies in bed during college, drowning in my own self-pitty, depression and pain.  I was given a TENS Unit to 'distract' my body from the pain.  I called it my 'Robot Friend.'  I embarrassingly had to hook it up in the middle of class during college, while nosy eyes were burning my body.  No one asked what it was, they just all looked at me like I was different.  And I was.

Children.

I was put in a sling for 2 months in the fall of 2012.  I volunteered for a 'girls' camp and the girls in my group decorated it with foam shapes.  I couldn't explain to them what was wrong, but I didn't need to.  Readying the glue gun, each one wanted to help glue a silly shape on so my sling was 'pretty' and would make me smile. It did.  

The children I babysat were easy on my arm and showed so much compassion that I don't think an adult could hold with my situation.  They were only two and four.  If I was having a really bad day and didn't have enough energy to take them to the park, we would sit and read or play Legos.  Every time I came over they asked me how my shoulder was doing.  I would reply, "Better now that i'm here with you guys! Let's play."  They would hug or pet my shoulder telling me they hope I would feel better.  I came over after one of my really disappointing doctor appointments and the children knew that something was wrong.  The four year-old said, "You know what makes me feel better when I am hurt? Popsicles."  We ate popsicles and watched a cartoon, one child snuggled on each side of me.

My best friends' daughter would draw pictures for me when I wasn't feeling well.  She would bring me a snack to make me smile.  She kissed my shoulder better.  She sat with me watching children's movies and wiped away my tears if I was in pain or upset.  She ever held my hand.  So much love and support from a little girl, not even 5 years of age.  She warmed my heart every day I felt down; she was one of the only reasons why I wanted to get out of bed in the morning.

Looking back, I've come to the conclusion that children near and far were my biggest support systems.  It didn't matter what the doctors said or how many adults thought I was crazy or faking it.  It didn't matter what the tests showed or how many tears I've cried.  They just wanted to help.

Spring, 2013

It was time for me to graduate and move on with my life.  But wait; how was I supposed to do all the things I wanted while in daily pain?  With daily depression and doubt?  I decided to move back to Kiel, Wisconsin, until this was resolved.  I put my dreams on hold because of a ghostly rare condition that was living inside of me.  I tried to ignore it.  I moved into an apartment on my own.  I set up payments for my student loans.  I started car shopping.  I continued to work for my parents to not only help them, but to see their faces every day; whether they were happy or sad.  I finally felt like an adult.  But I couldn't hide in the shadows.  I was an adult still in pain.  Still depressed.  Still falling apart.  

The Funny Thing About Support.

I had no support system besides the very few friends that stayed with me through this and didn't think I should be sent to a mental institution.  There were many occasions when I overheard friends complain about me.  It came as a shock first, and a rage of anger exploded through my body.  I felt betrayed.  But then I thought about the situation, and who could blame them; I was annoying and complained about my pain daily.  And who knows, maybe I was desperately crying out for help, even though I knew they couldn't help me.  I've held countless hands and wiped millions of tears from friends of each gender, but I wasn't worth the time and effort in return.  Albert Camus once said, "Don't walk behind me; I may not lead.  Don't walk in front of me; I may not follow. Just walk beside me and be my friend."   

I lost a lot of friends and respect for people through this journey.  And sometimes it makes me feel empty inside.  Sometimes I wish people weren't so selfish and could drop their phones for two minutes to listen to a friend in need.  On the other hand I think of the many people that did help.  People came out of the darkness on Facebook and took the time to message me.  People I haven't talked to in years.  I had classmates connect with me to share their similar experiences.  As I sit here typing this, my heart warms.  Why spend my time thinking about the friends that weren't there, when instead I can smile at all the memories I made with the people that could stick it out with me through the storm?  Those are the memories I will hold onto forever, while the others are washed away with the dark current of my past.

Fall 2013: Is this real?

I was referred to Orthopedic Therapy by my Orthopedic surgeon after my Arthrogram showed yet again, nothing.  Walking into the therapy room, I was uneasy and honestly a little pissed.  I've tried physical therapy before and it hurts.  I wasn't about to make my life more miserable.  I met my therapist, let's call him Frank, and his smile didn't even help my anger that was built up inside me.  I went into this negatively and with lots of doubt.  After a 5 minute of get-to-know-each-other and a physical exam, he diagnosed me with Thoracic Outlet Syndrome. "Just like that? You know what it is," I questioned Frank.  He chuckled, "I went through a miss-diagnosed condition with my shoulder for a couple years.  That's why I decided to become a therapist: to help others that were in my shoes.  I happened to study a lot about this syndrome and you fit the symptoms spot on." And just like that, my mystery condition had a name.  I thought to myself, I have Thoracic Outlet Syndrome. I'm not crazy.  I knew it!  Thoracic Outlet Syndrome, or TOS, is a compression of the nerves or blood vessels that serve the arm and hand, as they pass through the base of the neck and behind the collarbone on the way to the arm.  This produces symptoms such as: pain in the neck, shoulder arm, numbness, tingling, and weakness in the hand and arm.  I owe Frank a lot of my peace of mind, and I should probably send him a fruit basket.  

The Light at the End of the Tunnel, 2014.

I went back to my Orthopedic Surgeon in spring after therapy progressed my symptoms.  He gave me the name of a doctor in Milwaukee that specializes in TOS, and off I went.  My Angiogram confirmed the compression of my subclavian artery and vein, and surgery was set up for the following week for a 1st rib resection.  My doctor explained to me that I have a combination of 2/3 types: Venous and Arterial.  The only treatment is surgery.

[Side note:  My surgery was July 1st, 2014, at 8:00 a.m.  The surgery was successful and I am in the healing stages residing in my apartment in Kiel, Wisconsin.  A post-recovery blog will be shared!] 

A New Day, A Real Smile.

My surgeon was doctor #17. 17 doctors, three years of pain, depression, losing friends, gaining guardians, moving three times, completing college, frustrating my family, a variety of emotions, countless tears, self-doubt, self-pitty, finding myself, and making peace with my life.  A journey I will never forget.  A journey that I am sharing because I never want someone with TOS to think they are alone.  

TOS gives a different kind of sick, self-destructive, deep pain.  A pain that doesn't affect just the carrier, it affects everyone around them.  It affects the lifestyle, emotions, and patience of the person it is within. It tests them every single second of every single day. And it doesn't stop until it has massacred every single aspect of life.  But the question is, are you going to fight back or let it take you over?  I answered that question with a raging bull inside of me.  It's my turn to steer the reins.  It's my turn to be happy.  It's time to take back my life.  

Equanimity, 

Kelsey Thielmann