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