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  

Cold Hands, Cold Heart, Cold Wednesday.

I lay. I stare at my ceiling with groggy eyes. I listen as countless cars drive by my 2nd-story apartment window. I feel the burning sensation from my heating pad on the back of my neck. My fish tank trickles in the distance.  The subtle flow soothes me as I glance over at the prescription bottles on my nightstand, wondering when they will deteriorate the three day flare up my body has given out from.  I grit my teeth when the words Thoracic Outlet Syndrome come to mind. Equanimity. Equanimity. Equanimity. Slowly, my body relaxes again.

Eyes closed, I day dream about when I was a child, roaming free in the fields and wooded area behind my parents' country house. A sunny smile across my juvenile face. The wind whipping gently through my hair. The smell of chimney smoke and a fresh batch of ginger snaps tickled my nose. I was free.

I open my eyes to six pillows surrounding my body and two cats warming my feet. My cell phone rings. 414 it reads. On the other end is a nurse patiently waiting for me to pick up so she can tell me I have another doctor appointment that should be set up.

The surgery, from the surgeon's perspective, was successful. Taking his advice, I took time off from work. I rested. I missed out on events, opportunities, fun. I weened myself off the pain killers. I slowly went back to work. I started physical therapy. I went to a massage therapist. I have the positive mind set of healing. What am I doing wrong?

I turn over and think of the timeline from the past six weeks to today. The pain is creeping its way back into my life, and worse than before. It is circling my shoulder, climbing my neck and overtaking the nerves in my head. It is knocking on the door to my mind. Pounding. Screaming. Scratching off splinter by splinter of wood to get to the one part of me that I need to keep strong: my mind.

Every fiber in me wants to scream back. Every fiber wants to go back to work. Every fiber wants to be pain free. Every fiber is trying so hard not to resent every person that doesn't have to go through this, and to forgive every person that judges my situation, without knowing the full tale. Every cell in my body wants to hug every single person that is dealing with this devil inside, or any other devil like Thoracic Outlet Syndrome. And every cell in my body wants to hug the closest members to us, the ones that are silently dying inside watching us suffer every single day.

I sit here in the debilitating pain I've come to know so well. Too exhausted to get up and put another movie in. Too exhausted to care if I'm staring at a blue TV screen. Too afraid to call my best friend and tell her I'm having a bad day because I don't want her to get upset.  I'm 23, but feel 70. I'm in shape but feel out of it. I'm happy but why can't my body get on the same track?

I play the waiting game with the doctor now. I wait until they set up the appointment. I wait in pain. I wait in the doctor's office. I get an ultrasound of my shoulder. I wait at home for a phone call that will be bad either way. And then I wait for a treatment option, one with more pills or more physical therapy. And then I wait to heal. It is all one big waiting game, and from it I have built up the best patience and hope that one lifetime could ever hold.

Equanimity,

Kelsey

(Author's note: Just a glimpse of a day for me.  Not all days are bad.  In fact, most days are wonderful even when I'm in the worst pain.) 

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