Day & Night

Day

Drifting through a luscious night of sleep, I hear the ting ting ting of my alarm in the distance.  Opening my eyes, I reach for the alarm clock, throw a sweatshirt on and start making my coffee.  Dimitri and Ellington beg for food as I connect Pandora Radio Station to my sound bar.  The heavenly aroma of Italian Roast swirls into my nostrils.  My apartment is clean, but I must make it better.  After I eat my bowl of cereal, I work on my dishes, sweep the kitchen floor, organize laundry and dust.  A light breeze dances through my apartment as I finish my chores and get ready for work.  I make a mental note to scrub the bathroom sink and vacuum when I return.  After giving the cats a big hug and kiss, I turn my key to my door and I'm off to enter the world. Organized.  Energized.  Efficient.  Optimistic. Happy.

Night

I've slammed my alarm 3 times, still not able to fully open my eyes.  A heavy fog has sunk into my brain as I yawn my way to the kitchen, tripping over two extremely hungry cats.  Angry, I prolong feeding them out of annoyance.  I attempt to start my dishes but the throbbing pain in my collarbone stops me in my tracks.  I consider pain killers, aleve, ibuproferen, heat or ice, bio-freeze or essential oils.  Something to suck out the hell that has sanctioned itself within the depths of my brachial plexus.  I decide on an ice pack and my deep relief oil.  Staring at the TV and sipping my coffee, I think of my to-do list for the day.  I look around my apartment; cat hair on the coffee table, mounds of unsorted clothes in my bedroom, dishes piled up.  It's not so bad, I guess.  Could be worse.  Nearing the bottom of my coffee, I have a choice.  I look to the right into my kitchen, picturing myself putting shoes on and heading to work knowing very well it will bring non-empathetic stares and annoyed feelings of laziness.  I look straight ahead to my bedroom where comfort, depression, guilt and irritation awaits.  Neither are good choices.  Neither will make me happy.  Can I face it?  Can I face the world today?  Can I overcome the stares and judgement and brain fog and pain?  Slipping under the sheets,  I can't help but feel overwhelmed.  Pain.  Anger.  Frustration.  Guilt.  Fog.

This process is what I like to call Day & Night.  I'm sure I'm not alone when I say I have it often and if I don't, I think about it.  It's the thought process between a good day (Day) and a bad day (Night).  I noticed the difference after I received botox injections.  I was in pain, exhausted and my apartment was a mess.  But no matter how messy it got, I've always accepted it as It's not that bad.  After dealing with chronic pain, I had to realize the fact that I will never be able to fully accomplish all my tasks in a single day.  Once the botox started kicking in and a few good days frequented, I went nuts if my sink was full, if my coffee table was dusty or if my pets weren't fed.  I became a control freak once again.  Everything needed to be tediously placed and put away.  I'd ween off my pain medications and start to feel good again; but there's never an ending to chronic pain.

The botox would wear off and I would be left with exhaustion from pain, stress and work.  The chores would to pile up as did the mail on my dining room table.  Checklists had to be made to keep my mind in check for the tasks at hand.  My mind was foggy and simple things started to slip through the cracks.  I would start to feel belittled and useless.  Days and days of laying in bed fighting fatigue and sadness and anxiety would add up even more pressure.  The constant nagging thought of what my family thinks of me hangs low over my head.  The cycle would never end.


On top of everything else in my life, why do I have to go through this too?  Why do I have to have chronic pain, and be tickled with the thought of amazing days when I have the most horrendous days along with them?  I sat in bed this morning, with Dimitri and Ellington at my sides, but I couldn't lay still.  I kept kicking my legs and clenching my fists.  My mind wouldn't stop teasing my anxiety.  I felt so fatigued and drained and depressed that I didn't want to go to work.  I couldn't decide what to clean in my more-than-cluttered apartment.  I turned the TV on and couldn't even decide what to watch.  Then I repeatedly became angry with myself for my choices of the day.  If I would have went to work like I did yesterday, I would have snapped or felt more pain and then I would be two days down on energy.  On the other hand, the good days I feel way too good and wear myself out from doing too much.  Then I think I'm crazy for thinking I have bad days at all.  What gives?

The reason why I decided to finally share this is to ask for help.  Not just for me, but others feeling this way too.  How do you get out of it?  How do you overcome the sickening feeling of not wanting to be in that exact moment but unable to unfreeze yourself?  How are you able to be content and coast through every day, whether good or bad?  Please comment and share some advice on this subject.  And know, that you are never alone.



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

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 

Good, Bad, Beautiful or Sorrowful.

I've recently been asked this question a few times a week for the last few months:
"Why is a pretty girl like you single?"

I cringe.  I am instantly an introvert.  A little piece of my heart is stabbed.
I respond politely by saying I don't have time.  I say that I just got out of a bad relationship.  I say that I don't know where I'm going to end up in a few months.  Or what the future holds for me once I'm fully treated.  Or I just change the subject completely, hoping they would get the hint. (They don't.)

I say all these silly things when, truly, I am ready for love.  But is love ready for me?

My heart twinges when I watch a romantic movie or when I see an elderly couple holding hands while walking through a grocery store.  I day dream about having a beautiful house and a plethora of animals roaming country land.  I constantly think about holding my future children.  I hope that one day all of these things will become my reality.

I'm not physically terminal.  I'm mentally terminal.  I let a few sour relationships ruin the future of blooming buds.  I push away people that are close to me so they don't have to keep seeing me in pain or at the hands of defeat after another failed attempt at making me pain-free.  Sometimes I am the venom that seeps out of the python's mouth.  But I am also the mouse it snatches up from its burrow, fearfully hiding in the shadows. 

Here is a glimpse of my mind when I think about going on a date or getting into a relationship or even someone flirting with me.

Wonderful!  He likes me.  He wants to see more of me.  He wants to hold my hand during a movie or put his jacket around my shoulders on a frosty night or kiss me at the foot of my door.  He is genuinely interested in my being.  

But does he know I have chronic pain?  Does he know I might be like this forever?  Will he be able to understand the exhaustion?  Will he get mad at me for missing family functions or important reservations?  Can he picture himself bringing me to doctor appointments or having to sit and hold my hand in the physician's office after the injections don't work?  Can he watch me cry over and over and over again; after an appointment? On the bathroom floor?  Under the covers not wanting to see the world?  After dropping a glass?  

Is he capable of some days holding two people together?  Is he capable of knowing times he has to say get your shit together, it's going to be a beautiful day?  Is he capable of loving me for who I am? Sick or not?  In pain or not?  Happy or sad?

Can he wait for the amazing days?  The beautiful days?  The days where I am full of life, smirking while sipping my hot coffee on the porch.  The nights where I could walk around town and hold his hand forever.  The nights where I surprise him with movie tickets and a drive to the lighthouse.  The mornings where he smiles the second I wake up and the nights he rubs my back and kisses me until I fall asleep. 

After pondering relationships for many months, especially after my surgery didn't help my symptoms, I find myself reaching for something I sometimes cannot grasp:  an answer to all of my questions.  The beauty of it is:  Maybe one day they will be answered, maybe not.  But it doesn't matter, because life is crazy.  Life is full of surprises.  Life tests you to your limits and makes you fall or it makes you stand tall and fight.  I was lost in all of my thoughts and doubts for awhile until a good friend quoted Heraclitus by saying, "Change is the only constant in life."  Whether it be good, bad, beautiful or sorrowful.  There will be change.  And everyone will go through it.

Will I find someone?  Maybe.  Will they accept my change?  Maybe.  Will I accept their change?  Forever.



Equanimity.

-Kelsey 

Confessions of a TOSer.

Here are some of my confessions while living with Thoracic Outlet Syndrome.  Some are funny, some are incredibly sad.  Enjoy.

1.  I've left my 'done' wash in the dryer for a record of 5 weeks.
I have an ample amount of clothing.  Ask any of my friends; I'm the closet for all.  My prized possessions are my 40+ sweatshirts, 20+ pairs of jeans and 15 pairs of sweatpants.  I have enough of every category to last through a zombie apocalypse.  In order to get to my washer and dryer, I have to go through my door, down the stairs, open two more doors, walk down a few stairs, plow into the stuck outside door leading into the basement, a few more stairs and then open and slam the door with a loose clasp all the while trying not to drop anything or slip on my ass.  It truly is exhausting.

2. If I wake up in sweatpants, I usually wear them the rest of the day if I don't go to work.
Sometimes I ponder all of my wonderful sweatpants.  Sometimes I picture myself lighting them on fire, hoping it will give the determination and energy I once used to carry.  But then I laugh hysterically knowing that it's not the pants, it's my body that I'm at a war with.

3.  I would rather stay at home with my cats than go socialize with humans that silently judge me.
I'll admit it.  I love my cats.  They are a pain in the behind most days, but they get me out of bed.  And if I can't get out of bed, they are right by my side.  When I'm in my worst pain crying in bed unable to move, Dimitri is right by my side, eyes wide, making sure I'm comforted.  If I'm hunched over the toilet from medication withdrawals, Ellington and Dimitri both are there.  I've said this previously; through this journey, I've lost a lot of important people in my life but I have also gained very close and trustworthy friends.  Nonetheless, socializing with animals that can't judge me sometimes puts me at ease.

4.  I watch mostly old television shows and fantasy movies because sometimes realistic film hits too hard for me.
The Avengers, Gunsmoke, Bonanza, Bugs Bunny, Pan's Labyrinth, Hell Boy, Inception and Cloudy with a Chance of Meatballs are some of my favorites.  It takes me away from reality temporarily.  It brings me to a world without pain.  It soothes my mind and makes me forget for a moment that my body is silently trying to kill me.

5. I. Hate. Dishes.
Something I used to enjoy, while jamming out to Paramore and dancing around my kitchen, I now loathe.  Occasionally my hand goes through weak spells or tremors and I usually drop dishes if I'm not careful.  On top of that, I usually wait until my sink is completely full before I do them.  So looking down for more that 30 minutes starts to give me burning pain in the back of my head.  Sigh.

6. Music is my favorite therapy.
Whether it's concerts, a night out in Elkhart Lake for live music or violins echoing in my bathroom while soaking in essential oils, it cures my mind and mends my soul slowly and wonderfully.  Recently I have been stuck on Twenty-One Pilots, Lewis Watson and the Ray Charles Pandora station.  I secretly wish the world had music in the background of every moment like in the movies.

7.  Sometimes I think I'll never get married.
Wait, I'm 23 years old.... And I've already given up?  People question this all the time, especially my mother. I don't think anyone without a chronic condition understands it, no matter how hard I try to explain it.  Men that I've dated in the past have seen me as weak, like a wounded fawn in the dead cold of winter.  I've been slammed with pity, shame, embarrassment and loss.  I've been given up on, left for dead because I am not able to be handled.  I don't need someone to take care of me, I just want someone shows empathy.  I keep putting off dating until I am 'healed' but in all honesty, that may never happen.  And I have always felt this will go away like the flu; but it is now a part of me.  As corny as the Marilyn Monroe quote is, I truly don't want someone to have me at my best if they can't handle me at my worst.

8.  I've started to find out who I am, and I am genuinely starting to love myself inside and out.
I've found parts of myself that I never knew existed.  One is my mental strength.  I've broken down many times in the past few years, feeling completely useless and weak.  But I finally realized, I've gotten back up every single time.  No matter how many times I've said, "I want to give up" I never have.  I've also started to let down my guard and be my weird self.  Usually I'm coy and shy, unaware if new people will accept me or reject me.  Same when my TOS started.  Because it is an invisible illness, people automatically assume you aren't as sick or as hurt as someone with a visible illness.  Truth is, it's almost worse.   And I always felt silly or stupid for covering it up and pretending it's not there.  But recently my attitude has been:  This is me....Accept me or not and I will do the same.

9.  I cherish the little things the most. 
As I've said, I recount the people I've lost in my life to TOS, and the number is relatively shocking.  I think of all the hurt I've endured from people that thought I was crazy, or a cry baby, or even worse: faking it.  I've had to scrape myself up from the bottom of the ocean, cheek-stained tears and weak heart, just to have it keep happening.  So when I get a heart-warming text message when I wake up or someone from my past reaches out to me, I am more than over-joyed.  When someone I haven't talked to in awhile asks me if I need help, I am grateful.  I was freezing at work while on night shift by myself, I forgot all of my warm clothes and didn't have any dinner.  My friend dropped off hot chocolate, extra layers and dinner.  I think about it now and a huge smile comes across my face.  That's what I think about when pain swirls through my entire body, slowly trying to capture my soul.  It's what keeps me sane.

10.  The people that have helped me the most are constantly on my mind.
I have gained some of the best friends through this experience.  Friends that ask how I'm feeling and truly care about my answer.  Friends that want me to get better, not because they are sick of hearing about it, but because they want me to be healthy and happy. Friends that have left an amazing impact on my heart.  Those people remain on my mind through most of the day.  There are days I feel guilty because they have helped me so much and sometimes I can't return the favor.  And there are days where I feel humble from their generosity.  I fear negative situations will arise for them, but hope that they don't.  It's a burden and a blessing.

11.  Back to the dishes confession, I'm pretty used to frozen food. 
One of my passions is cooking.  Salmon with rice and charred asparagus.  Steak with pepper jack mashed potatoes and green bean casserole.  Homemade 3 cheese spaghetti with wine-sauteed veggies.  I constantly look for new recipes.  However, cooking takes a lot out of me.  Grocery shopping, carrying the bags in to my apartment, prepping the food, making the food, putting the leftovers away, cleaning up the kitchen and wash the dishes.  Thinking about that almost puts me in a sleepy state.  So now I've resorted to corn dogs, edamame, ice cream and the occasional applesauce and cereal.  My mom is kind enough to make dinner bowls of her home cooking for me too.  I am definitely not complaining; I am incredibly thankful I can eat without pain, as I know others aren't as fortunate.

12.  Coffee has no effect on me anymore.
I don't know why I go through the motions of making coffee in the morning.  I'm a one-cup-lady so I have a Keurig.  I make dark roast coffee.  The only effect it has on me is the shakes.  There are times where I've woken up, sipped my delicious brew while watching the news, and passed back out within 5 minutes.  It's not that my body is caffeine intolerant.  It's literally just that it doesn't give a shit anymore.  It's so tired that it wouldn't care if I put 10 cups of coffee in it.  It would just respond with, "Cool, now where's my bed at."

13.  I lay down in public places all the time.
Sometimes my body is exhausted.  Sometimes my body says no, and just needs to rest.  I used to never give in to it.  But after reading "How to be Sick" by Toni Bernhard, that all changed.  Toni taught me that I need to listen to my body rather than ignoring it or pushing it off until later.  I've given in and have rested on restaurant booths, a row of office chairs, my aunts' living room, the backseat of my brothers' car on a longer drive and even the gross airport floor.  Some people look at me like I'm weird or automatically assume I'm a young lazy 'kid' or hungover.  But the truth is, I'm just exhausted.  And I don't really give a crap why people are staring at me or what my friends and family think.  If my body says it's time to rest, I rest.

14.  I feel bad for my body.
My mind and heart are on the same page.  They communicate correctly, correlate decisions, and truly care about my well being.  The rest of my body is in a completely different book.  I silently think to myself, "Please, body; calm down.  Relax yourself.  You work so hard and keep me living.  Now rest up to be pain-free." When I toss and turn at night from leg cramps, crying out, "No, no! Please stop," I silently try to convince my body to stop destroying me.  I silently wish it wouldn't keep trying to destroy itself and hope it gives in to treatment and rest.

15. After months of ignorance after surgery, I've finally have come to the realization that I may be living with this for the rest of my life.
This runs through my mind often.  I picture my future.  A different job.  A different city.  Marriage (Only if a man can accept my cats.) A house full of Pinterest design projects I hope to one day have completed.  Vacationing in Europe.  Children.  A Leonberger or German Shepard or Lab.  When I picture it, I envision both sides of the spectrum: With and without Thoracic Outlet Syndrome and Fatigue.  I need to be realistic about my future and can't keep living in a fairy tale thinking that everything is going to be perfect.  Because let's be honest, we all know nothing in life is perfect.


Equanimity.

-Kelsey