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

Lesson Learned In Traveling With Chronic Pain

Traveling with chronic pain was the greatest challenge I've faced this year.  It was a constant reminder every second that I was indeed a different person.  I had to manipulate my days to fit into the little energy I had, more than what I already do at home.  I had to feel the guilt pouring into my heart because I turned down activities only to feel the frustration from others around me.  I felt the lowest, because I didn't feel like myself, and I don't know if I ever will again.

It all started when I found out I was taking a trip up north with my boyfriend for a friend's wedding outside of Boulder Junction, Wisconsin.  He planned to go early and make the trip extra special with fishing and swimming.  Early on, I was wary considering my health and energy was sliding downhill in the weeks leading up to it.  The reason?  I had just started Gabapentin and Dry Needling. The emotional side effects alone from Gabapentin were enough to cause suicidal thoughts that lingered while I was awake as well as off into dream land.  I would daze off, picturing my hands around my own fragile neck under water, legs kicking, bubbles fluttering up to the surface.  I would easily snap myself out of it, but the thoughts always crept in the shadows.  Consciously I knew it was the medication; normally I would and could NEVER have a thought such as this.  Medication usually plays a huge role in my mental state and emotions.  Knowing that while trying new medicines always reassures me I'm not losing my mind (for now).

While combating the awful side effects of Gabapentin, I was dealing with countless flare ups from dry needling.  I am not complaining, considering that't the point of the procedure: to piss the muscles off enough and make them repair themselves.  However, I happened to develop the worst nerve pain of my life in my neck, collarbone, ear, face and head leading up to the trip.

This is what I was supposed to be doing the day prior to leaving:
Go to doctor appointment, run into work to fill out order, laundry, dishes, pack, clean litter boxes, fold blankets, sweep kitchen, change cat's water and blanket, pay medical bill, fix window screen, set up box fan in window.

This is what ended up happening:
Wake up with screaming headache, take Excedrin with breakfast.  No one to drive 30 minutes to doctor so I take myself.  Doctor appointment at the pain management clinic.  Tell her I'm in pain so politely say make it quick and speak softly.  Goes against wishes.  Drive home and stop twice from eye balls ready to burst.  Call boyfriend in tears.  Make it home 50 minutes later. Strip clothes off.  Ice on the face, Tramadol.  Ice on the neck, peppermint oil on temples, pain cream on collarbone, Tizanidine.  Heat on neck with tiger balm, re-arrange pillows, curl into ball.  Crawl to bathroom from pain ready to puke.  Lay on tiny bathmat holding legs and massaging temples while trying not to cry.  Crawl back to bed.  Question why I am doing all of this and if it's worth it.  Tizanidine. Figuring out who will miss me the most, my cats or my parents.  Snapping out of it and telling myself I'm strong.  Laughing at the pain.  Find comfortable spot.  Pain relief for 7 minutes.  Start packing.  Lightning and thunder return and so do the tears.  Tramadol. Considering going to the ER. Repeat.

Defeated, I was incredibly concerned that this is how the entire trip was going to be like and expressed my concerns to my boyfriend.  If you're anything like me, or experienced any pain like this, you know the 'oh shit' feeling when you have plans and don't know if you should cancel and want to be good to your body but not let your significant other down but not feel guilty for putting your body through hell but not resenting your significant other for the choice you make.  My brain already hurt like hell and I know he wanted to leave early in the morning; it was a 4 hour drive, we were hauling the boat and he planned to bass fish in the morning.  I couldn't handle making up my mind and through much deliverance I finally said I would give him an answer in the morning if I made it through the night without having to go in.  Although frustrated about plans changing, he understood and went to sleep.  Tossing and turning most of the night, I cried, crossed my fingers, had nightmares and night sweats until I heard the birds chirp while finally passing out.

I woke up to a blaring alarm and immediately started running around.  All the while I was thinking I couldn't believe I was putting myself through this.  I couldn't believe I was stressing myself out to the brink of lunacy.  On the other end of the spectrum I knew it was going to be an amazing trip and how much it meant to my boyfriend.  Still with a pounding nerve-pain headache, I packed, showered, did all the chores and within 2 hours we were on the road.  I packed pillows under both arms and on top of my stomach, wrapped myself in my minion blanket, took a Tizanidine, and barely opened my eyes until we arrived.

Let me give you a brief description of how I was BCP (Before Chronic Pain):  I was adventurous.  I loved road trips and staring out the window the entire trip.  I didn't sleep in the car because I didn't want to miss anything.  Car games were my favorite.  I would be packed and ready to go days before the trip, and not be able to sleep the night before.  I would want to do everything and anything on our agenda and then some.  I was never a crabby person unless someone disrespected me.  It was alright if something didn't go the right way.  I was always described as bubbly, energetic and happy.

Re-reading that paragraph is extremely difficult.  It's hard giving up the old me.  The new me barely makes a 30 minute drive without wanting a nap.  I have to pick and choose what I can do.  If I have a long exhausting day of fun, I'll usually go through with it but be down and out for days to come.  I dread trips because I can't return to my bed at night or my cats or the smell of my diffuser.  I'm accepting the change little by little, but it's going to take awhile.

The guilt I felt on the trip was chest-gripping.  I could barely help with anything.  My boyfriend did this and that for me, and I'd want to cry.  Thinking about it now makes me upset, guilty and grateful all at the same time.  We couldn't go fishing early in the morning like he had hoped because I couldn't get up early enough.  And when he finally did wake me up I was a tornado of bitchiness.  I couldn't control it, it was like word vomit.  In my head I kept thinking, why am I saying this?  He is only trying to help.  He is being so good, quit being such an ass!  And yet another negative comment would come out of my mouth.  Finally when I wasn't so achy and crabby, we would get the boat ready and drive to our destination.  I would be rather quiet, considering I felt like a jerk for what just happened even though he never holds it against me.  Then he asks if something is wrong, I say no, he knows I'm lying, and he thinks he did something else to hurt me.  You see why I hate chronic pain?!

When the pain wore off and my energy level was back up, even for an hour or two, it was like nothing ever happened and we were a totally normal couple again.  I felt normal again.  We would joke and laugh and I could be myself.  I felt total bliss in those moments, like maybe everything will be alright.  Sadly, those moments didn't last long, and I was swallowed whole by fatigue or pain and the mute button would be pressed.  Even then, he always made sure I was comfortable and happy; he made jokes and asked if I needed anything.  He really is a trooper with this whole pain thing, and for that I am thankful.

We went to the wedding  On Saturday and I was instantly exhausted.  I'm sure it had something to do with getting ready and the stress of the 20 minute drive there.  I was silent with my complaint because I was extremely grateful to be a part of our friend's wedding.  I glanced around the aisles of people, wondering if anyone else had an invisible illness.  Wondering if anyone else has been going through hell.  Wondering if I wasn't alone at the wedding.  Sometimes even when I'm with the closest people around me, I feel the most alone, and that's how I felt at that moment.  Just as I wanted to cry, my boyfriend gently placed his hand over mine, gave it a little squeeze and flashed me a little smile.  For the time being, it made me concentrate on my beautiful surroundings rather than feeling surrounded by foreign people.

While we were on the lake, I decided to take the time to thoroughly reflect and enjoy myself.  The water was crystal clear, the waves lightly sweeping the shore.  Eagles and seagulls and loons circled the waters searching for food.  It was a breezy 80 degrees with a few clouds.  The days were perfect.  We fished, searched for sea glass, took pictures of our feathery friends and shared some beers.  Those moments made me forget everything back home.  It made having chronic pain so minuscule.  

Every trip I take is going to be tough.  Every trip is going to be different, both the destination and how I'm feeling.  I think that's why I get so frustrated; I can't plan something because I don't know if I'm going to be in pain then.  I get nervous thinking about the future and how I will be able to handle it.  But I can't beat myself up for it.  I'm going to have to accept that I will eventually have to say no, and let someone down, and feel guilty, and be upset; but that too shall pass, just like everything else.


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 

A letter to Healthcare Insurance

My initial visit and evaluation to Dr. Ketchum at Froedtert was in January.  I have the 'Navigate' plan where I have to be referred to EVERY doctor by my primary care physician in order for insurance to cover it.  They didn't cover my bill and now I have to appeal to them.  Here is my letter:

Let me give you a recap of being 23 and living with a chronic pain condition that is swallowing my life whole:

As you have probably seen by my records, I go to the doctors quite often for my Thoracic Outlet Syndrome and Chronic Pain. I make phone calls to different doctors every day at different facilities and talk to different nurses and receptionists who think I’m full of crap because I have an invisible illness.  I have to research treatments and doctors I need to go to in my spare time because I cannot spend every waking moment in a doctor’s office.  I miss work days for doctor appointments and unbearable pain.  When I can go to work, I usually have to force myself to work through the pain.  Every single dollar I make is ever so difficultly made. 

So when I find that my insurance company that I have had for years didn’t receive a referral from my primary care physician and a $612.00 bill is sitting in front of me, I become perturbed.  While trying to get ahead with my bills by working through the pain, balancing doctor’s visits, physical therapy and managing everything at home, I find myself not being able to get ahead of my bills when issues like this arise.  I’m trying my hardest to get better so I never have to see an inside of another doctor’s office again or wear an itchy gown or be injected with more medications that may or may not help me.  Trust me; I’m as sick of it as you probably are reading this.  But I cannot do that without your help. 

Last July, I had surgery for a first rib resection.  Originally we thought it would take away many of the symptoms I’ve been experiencing.  However, it failed to do so.  Since surgery, I have been seeking treatments such as massage therapy, chiropractor, physical therapy, trigger point injections, cortisone injections and now botox injections.  If I wouldn’t be trying the injections, I would have to go back to testing such as MRI’s, CTs and a variety of specialists.  Instead, I am trying to pinpoint the problem as fast and as accurate I can, while minimizing costs and as little amount of doctors as I can.

I started receiving Trigger Point Injections from Dr. Leiben in November 2014.  During that time period, she was trying to locate the source of my pain that was causing debilitating migraines and neck pain.  Unfortunately she decided to switch practices, and refer me to Dr. Lynch for further treatment, deciding that I needed a longer lasting pain-relief solution.  During that process, Leiben’s office referred me to the future doctors instead of contacting my primary like I had originally asked during my last visit with her and her nurse.  Dr. Lynch examined me and decided to treat me with a cortisone shot, but also wanted me to have further treatment and referred me to Dr. Ketchum for Botox Injections.  Do you see how I keep bouncing around doctors with no stability?

Please re-consider this bill.  I know you have busy lives and have a lot of customers to deal with on a daily basis.  All I’m trying to do is get my life back and try to solve my chronic pain.  With your help, I would have to worry about one less bill and continue my search for what you would experience as a normal life, hopefully pain-free.

Equanimity.

-Kelsey 

Botox Injections

After a month and a half of dealing with Froedtert and my insurance company, I had my botox injections on February 19th.  The wait was agonizing.  On top of working, babysitting and volleyball, I still had to balance seeing my family, physical therapy appointments and prepping for our business trip in the beginning of March.  I was exhausted.  I broke down.  I wanted to give up numerous times.  I continuously thought of my other TOS Warriors and wondered what their day was like.  Then for them, I picked myself off the floor and kept going.

Originally they had me scheduled for March 24th, a whole month away.  I asked the nurse to relay a message to my doctor explaining that I couldn't work full time at this point or even manage household activities.  I honestly still don't know how I have a roof over my head with barely being able to work.  He pulled some strings thankfully.  Upon waiting for scheduling to call, I decided it was time to start taking Tramadol 30 mg again just to get through the days and waited for February 19th to arrive.

Just like any other early morning, I had to drag myself out of bed, avoid doorways and attempted to make myself presentable!  The trip was much more manageable now that dad and I knew the route and construction, as well as where to go when we arrived.  The wait was unbearable, considering the pain was ten times worse than when I saw him in January.  After waiting patiently for 45 minutes, I finally found myself in the exam room fidgeting with my bracelet and bouncing my leg up and down.  

I talked with Ketchum’s assistant Resident about where the pain is.  She examined my muscles and performed a strength and reflex test.  When Ketchum came in, he went over what the Resident talked about including the risks.  We talked about injecting the Pectorilis Minor but he wanted to try other groups of muscles first to see if he could stop that pain be hitting another trigger point.  He felt around for sore spots or triggerpoints that were causing referred pain and found my locked muscle (as I call it) or better known as ‘serratus superior.’  Preparation and conversation between both doctors took roughly 20 minutes. 

Two electro pads were placed on my left hand with wires leading to the EMG device.  He decided to inject that muscle along with the levator scapulae, upper/lower trapezius and middle scalene.  I didn’t need to change into one of those itchy gowns that I love, and I was thankful considering I was freezing already.  Ketchum felt around for sore spots and confirmed them with me.  The assistant sprayed me with numbing solution and Ketchum injected the botox immediately after at each site.   When he injected my upper trapezius, I felt burning pain go down to my scapula.  When he injected my lower trapezius, I felt the pain go straight up into my head.  When Ketchum injected my levator scapulae, it honestly felt like someone was digging around on my nerve, but only with slight pain.  I instantly felt a sick, heavy feeling in my arm and suddenly it was gone.  The injections themselves only took 15 minutes. 

Ketchum discussed that he would like to get a follow-up from me within 6 weeks (earlier if my symptoms worsen) via email or voicemail.  I found this super convenient and efficient because I wouldn’t appreciate driving 90 minutes for a 5 minute conversation telling him I’m fine.  The effects of the injections could take up to 10 days to kick in and can last between 6 weeks to 3 months.  During that time period I will start physical therapy to strengthen my muscles that are weak.  I cannot receive more injections before the 3 months are up, no matter how much pain I’m in, but if that’s the case we will be able to find a different pain medication.  Dr. Ketchum would like me to try 3 rounds of injections which will take 9 months to complete.  Upon completing the 9 months, we will re-evaluate whether the injections had a positive, negative or neutral impact on me.  If they worked, I will continue them and continue getting stronger.  If they don’t have any effect, I will start my journey of testing for an underlying problem or another diagnosis.

I walked in the clinic with high anxiety and fear but I left feeling reassured.  On the way home, my dad and I stopped at Einstein Bagel Bros for a Nova Lox and coffee as a treat.  I felt weakness while chewing from the injection in my middle scalene but it eventually went away.  I mentioned to my dad I felt weird numerous times, but couldn't explain why.  On the 1 hour trip home we listened to oldies and talked about the intricate details of our upcoming business trip all the while I tried staying silently positive. 

No visible injection sites but swollen

My left shoulder was injected.
It's swollen and raised from the
 injections but also from tight muscles.

I went to work for a few hours before I had to babysit.  I noticed the top of my shoulder started having spasms.  After I have physical therapy, massage therapy or injections, it normally tries to reject treatment and cramp.  However, botox is pretty potent.  By the time I arrived at babysitting it felt like someone was gripping the top of my shoulder with sharp nails.  I took deep breaths and tried to relax as much as possible.  Eventually, nerve pain carried over into my right arm and left me a little too stressed out. 

A few hours after the injections, the swelling and fatigue began.  Knowing I didn't want to spend the night alone in my apartment, I ended up having a movie night with my best friend Heidi so I could relax and give my body some time to calm down.  Nights with her are always a joy; she takes my mind off of everything and gives me a positive perspective on my situation.  We watch the most far-out-there movies possible.  It is the complete easiest way to get my mind off of my stressful life for a few hours.  

Friday morning, I woke up in pain which was expected.  I was sore, a little cranky and ready for some breakfast.  Heidi and I went to a local joint for our favorite meal, biscuits & gravy, bacon, eggs and coffee.  Upon completing breakfast, I knew the soreness wasn't going away and the sharp pains were getting worse.  I went home to my futon-now-bed in the living room to ice my neck and to stretch, but the rest of the day was a blur.  My neck felt weak.  My eyes were heavy.  I had taken Tramadol earlier in the morning but it failed to support any part of my body through the pain.  I was angry knowing my body was going to disappoint me again and get sick from another round of injections.  Episodes of Bonanza, Gunsmoke and Wonder Woman were blaring in the background of my dreams as I drifted all day feeling confined in the walls of my apartment.  The transition from day to night went unnoticed.   

Waking up Saturday morning to both of my boys at my feet was comforting.  Slowly, I sat up on my futon, only to be greeted by a pounding face and dizzy eyes.  I took a few minutes to level myself out so I could feed my cats and get more water.  My legs were wobbling as I filled up my water bottle.  I grabbed a yogurt and spoon before scuffling my way back into the living room.  Did I get hit by a train?  Did I sleep-sprint?  Why is my whole body nauseous?  I couldn't understand why I felt like this.  Soon after eating my Greek delight and taking a Tramadol, I closed my eyes only to drift in dreamland for another 2 hours.

Awakening in a cold sweat, I felt unaware of where I was.  Pain was creeping up my spine, into my head, engulfing my ears with flames and burning my eyes with poison.  I

stumbled to my medicine cabinet, only to find that I had an ample amount of muscle relaxers and nothing for nerve pain.  I grabbed Excedrin and an ice pack.  In the child's pose on my futon and ice pack on the back of my neck, I couldn't control my emotions.  I was upset I didn't feel well.  I was upset my head felt terrible.  I was upset with life and everyone that didn't have to deal with this bullshit, but immediately feeling the guilt seep in, I retracted my selfish thought.  I wanted to scream, but knowing that would only make it worse, I swallowed my frustration.  

My main frustration was at myself.  I was mad I didn't find a specialist for TOS right away instead of bouncing around doctors. I wondered if my friends with TOS have crazy off-the-wall thoughts like I do. I was mad that I didn't ask for nerve-pain medication at the last appointment.  I was mad I had to go through this.  Sick of hearing my own mind complain, I finally cried myself to sleep. 

At 10:00 p.m. I woke up startled by a phone call from Heidi.  She had just got done with work and needed some consoling herself, so I crawled from room to room collecting everything I needed to spend the night.  Thankfully, she lives 20 Mississippi's away (aka 3 blocks.)  Another movie night was in the making with lots of venting and unhealthy snacks. Before both of us knew it, we were passed out with the movie menu screen on repeat.  

Sunday morning, I instantly took Tramadol and stayed put on the couch, waiting for the spins.  Like clockwork, they hit and took me out.  I sat crying.  On my best friend's couch.  So much sharp unbearable pain.  She stared, almost like she was going to cry, unable to fix me.  She was unable to fix her broken other half.  Comforting me as much as possible, I told her I was better even though I was lying through my teeth.  I know she wouldn't have been able to leave for work had she thought otherwise.  The pain was from my ear to my arm, my neck to my tailbone, my rib cage to hip bones.  It was sharp and nasty.  It was as if I wasn't in my own body anymore.  Eventually I put my TENs Unit on just to keep my body distracted.  It only works for so long.  

I honestly think getting the injections gave me a huge flare-up.  As sickening and upsetting as that is, I'm still hoping for it to turn around.  I'm crossing my fingers that the Botox magically gives me relief, even if it's for a few weeks.  I need a break from what my body is going through; physically and mentally.  

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 

Driftwood

I sit here staring at the egg-white walls of my bedroom.  My cell phone, propped on the coffee table in my living room, is supplying me with unlimited Ray Charles Pandora.  It is interrupted as a familiar ringtone echoes through my apartment.  It was my Mom's.  One ring.  Two. Three. Four.  Hound Dog by Elvis Presley fades back in as guilt swallows my body.  I haven't felt like this since my rebellious days in high school.  Where every emotion I had was negative and hurtful and swallowed me whole.  It makes me realize I don't know my place in life right now.  It makes me feel like I am no use to anyone.  It makes me feel alone.  I drag my computer across my fuzzy minion blanket, open up Word and start typing.

Dear Family,

I no longer can be a part of you.  I cannot feel my place in this once close clan.  I am not understood.  I am not accepted.  I feel belittled.  I feel worthless.

I see your stares as you watch me slow at work.  I wince in pain as I bend down to grab papers my clumsy hand every so lovingly dropped.  You do not help.  You do not question.  You only stare.  You do not even feel sorry for me; you just look at me like I am nothing. 

You are angered easily when I forget something, go to dinner with friends during the night and can't go to work the next day and when I say I don't feel well enough to perform a task.  You are annoyed when I talk about my condition to someone in front of you.  You avoid the subject when I try to give an update from a doctor's appointment.

You don't question my progress.  You have no knowledge of my medication withdrawals, which gives me sweeping mood swings, alarming brain zaps, and nausea majority of the day.  You don't know that my chest gets tight when you argue with me or when you look at me with a blank stare as I tell you I'm not feeling well.  You don't feel the panic that flows through my body.  

You don't realize I have an every day battle with getting out of bed.  My body works against me as does gravity.  It pulls me down until my bed swallows me whole.  Depression is the same way.  I stare around my apartment, feeling a foreign sense of where I am and an unknown sense of where I should be.  I become angry knowing I'm late for work and you will instantly judge me; then I decide if I can face it or let my guilt and sadness eat away at my soul while rotting under the covers.  

I'm down to my last resort of treatment options for pain, fatigue and my overwhelming feeling of being alone.  Waiting for a phone call is like waiting for a police officer to write you a ticket.  Going to doctor appointments is exhausting and emotional.  Repeatedly telling my story and my symptoms is debilitating.  Most of the time I am driven there; but I know that I am alone.    

There are some things you should know about me.  I have chronic pain and fatigue.  I have TMJ, all three types of Thoracic Outlet Syndrome, Cervical Dystonia with a side of frozen muscles in my shoulder, above my collarbone and in my chest, Winged Scapula, Joint Hypermobility and possible Nerve Entrapment.  It beats the living crap out of me every day. It throws me around like a ragdoll.  It tries to take all my hope and optimism and faith.  And I'm ok with it because I've been dealt my cards.  What I'm not ok with is you treating me like I am nothing.  Like there is nothing wrong with me.  Like I'm lazy, unmotivated and weak.  Pretending you can turn your head and it's all going to disappear with the drop of a hat.  Because that is what's killing me faster than my medical history.  

To me, acceptance and understanding is the most important part of living with a chronic condition.  I don't have that.  I've never once heard from you, "I'm sorry you are feeling like crap, is there anything I can do," or "Do you need help with anything," or even "I wish you didn't feel like this."  I am going through it alone.  You ignore my condition rather than talking it out and voicing your understanding; if you even have any.  

You are selfish.  You are introverted with what's going on between my body and I.  You don't know how to talk about your feelings, and maybe it's just the way our family is.  But someone with my condition needs help more than you realize.  Acceptance.  Empathy.  Understanding.  Even just a hug.  Just knowing that you're there would make this a lot easier and tolerable.

I'm starting to think maybe it were easier if I weren't in the picture, or didn't live in the same city, or work at the same job as you.  I wouldn't be such an inconvenience then.  Tears well up and anger boils my blood when I wonder what would happen if I never developed TOS.  What would our lives be like?  Would it be different?  Would you love me unconditionally and be there for other difficulties in my life?

My Thoracic Outlet Syndrome Warriors have been more of a family than you.  My friends that aren't going through what I am show more empathy than you.  My cats, my two lovely boys, show more compassion and understanding unspoken than you show in your words.  

"I'm sorry for having this.  I'm sorry for annoying you with my complaints.  I'm sorry I can't be the perfect family member you envisioned."  These are things I want to say to you, but it's all wrong.  It sickens me with the thought of having to say that to you and lie through my teeth.

I sincerely hope that you come around and realize what you're doing to me.  Because I will die faster from a broken heart than a broken body.  I love you.  I want to be apart of this family.  I want ever so much to make this all go away; but I can't, and you can no longer ignore it.  

I doubt I will hand this to you, because I know what the outcome will be.  You will get mad that I wrote it in the first place, argue reading it and after making me sob you will finally take it from my hands until it makes its way crushed under piles of paper on your desk or in the garbage, pathetic and abandoned. 

Love, 

Daughter, 
Sister, 
Driftwood.





Equanimity.

-Kelsey