Life as a Chronic Darling: Thoracic Outlet Syndrome: 2018

Reflecting back at the last few weeks, I can honestly sit here at my desk absolutely appalled at the events that have taken place. I'm all about good karma and positive energy, but a series of unfortunate events has left me pondering, why?

I started out the year with fire. And by fire I mean the red hot searing pain of a flare up in my neck and shoulder. My physical therapist who has been dry needling my shoulder finally told me I might be better off getting Botox Injections again for longer lasting pain-relief. Thanks to my fellow TOSers, I was able to quickly find a doctor within the area that can take on the challenge. After playing the waiting game with insurance-needs-to-approve-then-wait-18-years-for-an-appointment, my doctor promised me he would squeeze me in to get the injections the second it was approved.

Before I received the injections, I went to hell and back with Strep-A. I've never experienced a fever like I did with this nasty virus. In the high 103s, I couldn't think straight. Of course you (my lovely reader) know that sickness heightens chronic pain by ten-fold. Many hours of work were lost, I fell behind on laundry, dishes and cleaning and I wasn't giving enough attention to my pups. Trying to catch up, the stress alone created even a bigger flare. Thankfully the antibiotics finally kicked in and wiped out most of the virus. Most.

I was able to schedule the injections just as my virus was slowing down. I wasn't nervous for them, I was anxious for the side effects and the what-ifs. As I sat on my side with a medical gown draped over half of my shoulder, my mind trailed off. In 2014 I received Botox Injections at Froedtert. I couldn't remember it hurting this bad. I felt like I was getting a ton of flu shots in my shoulder, neck and head. I was afraid take a breath, fearful that my lung will rise up past my collar bone and that the doctor would poke it with a needle. I had confidence in this Doctor, but worries are always lingering. Dry needling definitely has taken away my pain and fear of needles, so it helped me remain calm during the injections. However, on the car ride home it was as if 100 bees were in the car, repeatedly stinging my neck. I couldn't focus, construct sentences, or even keep my head up. I didn't remember it hurting this bad after the first round.

A day after receiving my injections, I flew out for a business trip. I had planned to take tramadol the entire trip so I wouldn't become rundown from pain. Within the 4 days I was gone, fatigue started consuming me. It was hard to wake up to the annoying ringtone my phone blared in the early hours of the morning. It was hard to concentrate after a 2-hour meeting just to go into another one.

While on my trip, my beloved 5-year-old cat Ellington became deathly ill and passed away the night before I came home. I was absolutely torn. I am torn. My house isn't the same. The energy flow is halted and it feels stale. He no longer greets me on the bathroom counter. He doesn't paw at the shower curtain while I shower, trying to get it and feel the mist on his fur. He isn't there to jump up on my shoulders when I least expect it. He's gone, and the guilt consumes me daily. There were so many signs given to me pointing that I should stay home from the trip. The universe was trying to tell me something, and while I can't predict the death of a cat or anything for that matter, I still feel like I could have been there to catch the signs earlier.

Instead of feeling sorry for myself, I'm going to figure out exactly what I need to do to make me happy. Winter is a tough season for me. I cannot just go take a walk without the cold going directly to my bones, chilling my entire body and revealing my Raynaud's. I can't go to the lake and take a deep breath of air as I search for sea glass. I can't sit in my hammock and feel the wind gently rock me to sleep. So for now, I'll plan how I'm going to make the most of my summer and how I can be thankful for every single day and cherish it; pain or no pain. Summer, I'm coming for you. I'll fight for every ounce of your goodness and won't give up until I've done just that. This summer is going to be different. This summer is going to be about me.

Equanimity,

Kelsey Lynne

On this day 2 years ago, Mom and I traveled to St. Louis to patiently wait for my name in the waiting room of the O.R. What seemed like a normal day to most, was not to me. Nerves tingled inside every cell of my body as I was waiting for some kind of miracle. I was living in pain for years, without a single course of action to completely cure it or curve the pain. Countless tears, bouts of anger and frustration, and days of acceptance and clarity led up to this. I never really knew how to document this part of my journey or how to put it into words until today. In the past 2 years, I have picked up my pen, tablet, or phone multiple times only to look at the blank slate with doubt. I never knew how to start. It has always been a blurry time for me, and lots of pain and heartache come back when I tried to recall certain details and it got to be too much to handle. The months that followed my stay in the hospital were fuzzy, but finally today I can recall my stay with crisp and clean clarity. I can remember every detail, big or small, to an exact replication. I can remember it as if it were today.

I remember the smell of the hospital, the curve of the bed against my back, the feeling of horror as I woke up not being able to move my arm or feel it as the nurse moved it around while fixing my blanket. I remember my morning nurse taking out the catheter and feeling pain and relief throughout my entire body sent down from the gods and goddesses themselves. I hear my voice beg for food, only to realize I wouldn't be eating for a full 72 hours (plus the 30 hours before surgery itself.) I feel my first few wobbly, drowsy steps out of bed to the hallway, with my IV stand casting my shadow. I sense my mom's arm gently wrapped around my right arm, with the other gently resting on my stomach as we slowly walked on. I remember gazing at my left arm, as the pins and needles started, a wonderful sign that my nerves are starting to wake up and heal.

I see myself holding back tears at 3 in the morning while the nurses prod and poke at my arms several times trying to find a vein, unsuccessful more than 6 times after my IV had slipped out (one of my many nightmares that disrupts sleep to this day.) I can hear the patient on the other side of the room scream and whimper as she waited for nurses to run to her bedside more than a dozen times per night. I can taste the sugar from the Popsicles and jello I was only allowed to eat for days and puking my soul out at 5 in the morning from gut rot and crying to the nurses "I'm sorry" because I would never be able to clean it up myself. I remember the day I was discharged, weak and exhausted. I can taste the first few Cheerios my nurse smuggled in for me because just like us, she thought it was ridiculous that my doctor didn't clear me to eat bright and early on the 3rd morning.

I can see my nurses faces while saying 'thank you' and 'goodbye' as mom wheeled me to the elevator. I remember feeling so trapped , like the journey should feel over but really it only just had begun. I feel the embarrassment sitting in a swimsuit tipped to one side as my mom washed my hair in the hotel tub while I tried to fade away into Wild Child that was playing in the background. I remember pure happiness from Skyping Julie, another TOS Warrior whom I 'met' on a group a few weeks prior and not feeling so alone in that moment. I remember the sinking feeling in my chest as mom had to empty my drainage tube twice a day and make sure my bandages were clean.

I see my dad's face with a fresh smile as he entered the hotel room with a new body pillow and stuffed elephant, hiding how exhausted he was from his 8 hour trip to scoop me up and take me home. I remember the feeling when I was finally handed what was left of my rib after getting cleared to go home from my surgeon. I can feel the light wave-like motion while laying down across the backseat on top of a pillow bed of my parent's SUV. I remember opening my eyes and looking up out of the window to see my apartment right in front of me, waiting. I feel the heaviness in my legs as I climbed those stairs with my parents trailing behind, all of my belongings in their hands. I remember hugging my cats and telling them how much I missed them and how my apartment was arranged and the ugly color of my periwinkle kitchen. I remember all of that.

And just like that, I don't remember anything after. For days. For weeks. For Months. Days dropped by without me noticing like petals gracefully falling off wilted flowers sitting on the dining room table. I can't remember what I did. I can't remember who I saw. I don't recognize certain dates and events that happened. I don't remember going back to work. I don't remember eating ice cream or going to a movie or taking a walk or any of it. It was a blur.

But out of all the darkness and fog, what I do remember is this:

I remember fighting my body to wean off pain medication, nausea pills, muscle relaxers, and anything else that was shoved into the brown paper bag I received from the Barnes & Jewish pharmacy. I remember my foggy mind as I returned to St. Louis for my check ups and when my surgeon commented that my shoulder was healing well. I remember the stern confidence in his voice, when my voice quivered as I answered questions about the future. I remember all of my dry-needling appointments with my physical therapist. I remember every flare-up and migraine after he hit the wrong trigger point. I can feel the anger swallow my insides as I got results of a partial paralyzed esophagus from surgery after months and months and thousands of dollars spent on testing. I can feel the burn from all my tears, as if they were imprinted as tiny little scratches on my face. I can taste the words of defeat when my flare-ups were more frequent, and pain was more constant but I still moved forward. I can taste, hear, feel, and clench the anger that has been within me over the years. But today, I let it go.

Today I let go of all of the 'can't' 'won't' and 'shouldn't' moments in the last few years. Today I grasp what I 'can' 'will' and 'should' do in the present and future. Today marks two years since that awful, dreadful, painful, delicate, vital, beautiful part of my life. Today marks the day that I have officially paid off both of my surgeries, multiple tests and medical equipment. Today I no longer feel like a science experiment, like some animal in a containment cell exhausted from test after test. Today, I feel a little more human and back to normal. Today, I feel incredibly free.

Equanimity,

Kelsey