something isn't right.

before you come at me for worrying too much or being dramatic, if you have ever seriously injured yourself, you just know in your gut when something doesn't feel right. There's a difference between having too high of expectations for pain levels post-surgery and experiencing a NEW & Concerning symptom (s) so soon after surgery.

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Now if you remember where we left off, I was just finishing my 2-week post-op appointment. Feeling absolutely crushed by how Kaitlyn's speedy recovery compared to my own. I decided to text her and check in with her, hoping that she would open up about inflammation issues and Dr. Lee not listening to her pain. "Hey, Jazzy! Sorry to hear your inflammation is so bad! Mine fluctuated from mild to high for about a week after surgery but then went all the way down. Working out helped to disperse any inflammation or stiffness from lying down by the two week post op mark. Hope it gets better!"

What. the. actual. fuck? Why were my pain and inflammation not getting better?

Dr. Lee prescribed me some meloxicam (basically stronger ibuprofen but easier for your body to process) and some tramadol to help me push through PT.. Finally, at least he did acknowledge the fact that there was inflammation that showed up on the arterial duplex with doppler ultrasound. AND he realized my pain was not necessarily getting better.

I met with Vicky two times a week for manual physical therapy focusing on soothing muscles to calm down, rather than over-engaging them and causing more inflammation, and therefore more nerve pain down the right side of my neck and arm. I explained to her that I began feeling a new pain. Sharp nerve tingles while driving. Having my arms extended and propped on top of the wheel for a prolonged period of time became a huge no-no. The sharp pain would spread from my shoulder and pec in front and then curve around to end right in between my shoulder blades..... and it grew worse with every attempt to take a deep breath. Strange clicking and popping started to come from my sternum and lower rib area....But, wait! It's time for a party! Put on makeup, a dress, and oh ya miss your pain pill dose to drink for my 21st!

This was the first time I really understood what the term "feeling dissociated" was like. I put on a great act and yes, it was draining after, but at that moment, it was my only coping mechanism. I decided to fake it till I made it, and that meant making it to bed to release the panic attack. Luckily, my best friends, Mika, and Cal were by my side the entire time. AND, to make things better, Cal was going to stay the night, so I knew I would feel calmer. As for the fact that it was indeed my 21st, I was only able to have a glass of wine. Anything more and I would not be able to take my pain pill to get me to sleep comfortably. The joys of being 21 and having a chronic illness (: This was also the first time I remember being able to relate to that label for the first time since getting hurt. I was a chronic pain patient, but with the discovery of my rare funky TOS rib, Drs and therapists now labeled me as chronically ill. I mean at three weeks post op I was able to tell that the TOS surgery was indeed a success for sensation and strength in my right arm, but I started to feel these stabbing painful pops. A sign of underlying AND ongoing issues. Great. But, alas I had to stay somewhat optimistic. I was 21, alive, relatively healthy, and recovering despite surprising obstacles. That's a win for the year, but I didn't see it this way....

Again, I LOVE my parents. But, when I vocalized my worries (about my pain) to them, all they heard was "the surgery did not work." I don't blame them.... I mean they figured, hell we ALL figured my pain would be cured with this surgery. It was supposed to be my saving grace, and hearing that it may have gotten worse due to removing my rib, "what was the point?" Hence began the almost weekly conversations of the pros and cons of the decision to get the surgery...

By the 31st of July, I continued to feel the neural tension down my cervical spine, all the way down to my arm. The nerve pain was spreading?? I never had extreme cervical spine tension prior to surgery. It was ever only my upper trap that hurt.

"The only positives so far? " became my parents favorite topic

1. I was not as sensitive to the cold (yes yes I know it was summer but STILL enjoyed summer nights like a normal person, hell yes. I was even able to ice my back thoracic spine and neck incision!).

2. I was now able to write & paint with my right hand, only for an hour but who cares! It felt amazing to be able to express my inner thoughts on paper and canvas. When I was little I always gave up on writing in a journal daily. I guess I never felt like I had anything important to say to myself. But, that summer of 2020, it was essential for my mental health. (I'll touch on this later in this post)

Another new symptom addition was the extreme stiffness I felt in my entire body in the morning. I would wake up crying because my spine felt so cramped and on fire that getting out of bed and stretching became oh-so painful. Thus began my daily morning routine. I would roll out of bed, yes, literally rolled over the edge because I still could not engage my abdominal muscles without extreme pain. After barely landing on my feet in a way done without twisting, I would shuffle my groggy ass to the living room. I would drop the foam roller down on the ground, get on my knees, and then plop on my left shoulder like a tired puppy. As I put the roller underneath my shoulder blades, I would raise my arms, interlink my hands behind my head, and slowly curl my spine over the roller. Snap, crackle, pop, pop, pop. Phew, now I felt like I could actually take a semi-deep breath. Every couple of hours I would have to repeat this, and let me tell you it was not easy. The pops felt like necessary but painful adjustments to get things "back into place". What? Hell if I knew but I knew I felt movement. I had used a foam roller before when I was younger and never felt the shifting movements of my cervical spine.

By August 7th, 2020, sleep had become a distant memory. My personal record of restful sleep was now 3 hours! I was now the person who would sleep whenever I felt the need to. I didn't fight against it. If it was 2:30 in the afternoon and I felt sleepy after icing my back on the couch, boom 3 hours. Why only 3 hours? Well, after a little while the pressure from laying on my back would be too much to handle. On the right side of my back, specifically my thoracic spine, I had the recurrent sensation of violent stabbing, hence the need to change positions often. However, this came with foreseeable consequences. My sleep pattern was all sorts of out of whack. While my parents and sister were crawling into bed at 9, my night was just starting. A typical night consisted of at least 5 scenery changes, 3 bathroom breaks, and hours of television to keep me distracted. But, all this had to be done silently.

This made my anxiety skyrocket. You see, my parent's house is a comfortable one-story house. This meant I had to be extremely conscious of any noise I might make at night. Our covid puppy, Duke had a tendency to get riled up with the slightest movement heard from my room, which just happened to be the shared wall with his crate. It also didn't help that my bed was very creaky, so every adjustment I made would reverberate throughout the hallway. Even tip-toeing on the hardwood floor would announce my entrance into each room. On top of the constant "fight or flight" adrenaline I had pumping through me solely based on chronic pain, it was still difficult for me to practice diaphragmatic breathing when my muscle memory was to pull breaths with my chest/neck muscles. My inflammation had a tendency to settle in my chest/ rib cage, which only mimicked the vivid memory of coming out of surgery mid-panic attack. I have always had nightmares, even when I was a kid. When I was little I thought it would stop, but they only became more vivid. Now, with the pain, at times I wouldn't dare close my eyes. I didn't want to risk a panic attack and more pain. So, Tv and weed. Those were my nights.

Finally, on August 12, 2020. My 2-month post-op appointment with Dr. Lee. I was looking forward to this for many many reasons. But, the most important thing I needed to get across to Dr. Lee, was the ongoing high levels of pain. I was supposed to start school the next month... Here's what I learned :

1. They did a complete neurolysis of my brachial plexus. Basically, they had to free the nerve from scar tissue buildup and clean up any nerve damage.

2. An anterior and middle scalenectomy was done. In a scalenectomy, the scalene muscles, which pass through the thoracic outlet, are removed to reduce compression on the nerves, arteries, and veins in the area.

3. I had to continue gabapentin due to nerve pain, Dr's orders, but I hated the side effects so I want to wean.

4. We did another alterior duplex with the doppler ultrasound and well it showed "symmetric bilateral upper extremity WBIS with normal PPG waveforms compared to 07/08/20". Cool so still had nerve pain but it all looked normal, haha typical.

Okay, so the high amounts of inflammation made sense after hearing how they scrapped away scar tissue. They didn't just take out a rib as I thought, they cleaned everything out. But, what was still causing so much stabbing pain? It was 2 months post-surgery, and Kaitlyn and the other athletes who had this surgery did not have recurrent pain. I kept asking Dr. Lee when he thought the pain would subside and I would start to see significant improvement. His scripted response? "you need to have a reasonable expectation for your recovery timeline before you judge any results or symptoms. Full resolution can take up to 6 months. I'll check in with you in 2 months virtually, and then in person for a repeat alterior duplex with doppler ultrasound in 4 months."

I was able to see Vicki (Stanford TOS PT) one last time before leaving the Bay for Redlands. We discussed how the appointment went and right away she was able to tell I felt bummed out. She asked me to explain my pain and how it differed from the pain prior to the TOS surgery. (this is straight from the physical therapy visit notes) "Patient described 'a painful stiffness' of the neck. Also notes a sharp pain in the upper trap and scap area radiating down the spine and in front of the chest when trying to take a deep breath. "clicks and pops" from above and below the incision site. Not able to stay seated with and without back support from the chair, feels abdomen atrophies quickly. Sitting aggravates pain severely. Not able to twist or turn." And even after this appointment and Vicki's chat with Dr. Lee, Dr still thought my "pain was within the realm of "high pain phases post-surgery. Plus with 3 surgeries back to back to back, high inflammation with yet another surgery but this time to the thoracic spine, inflammation is normal ". Only this did not feel like a phase... but nonetheless, I shook it off and tucked it into the "deal with later thought tank".

Yep, that's what I was going into school with. Luckily and unluckily, our first semester would take place solely online. After a long talk with my parents and Vicki's insight, I decided to leave home and live in Redlands, despite school being online. My parents didn't love the idea of me leaving, but I knew that for my mental health, I NEEDED to be back with my friends. I wanted to feel somewhat normal. With the COVID lockdown and recovering from surgery, the only place I was able to exist was at home. Don't get me wrong, I loved the time I got with my sister and my parents, but I felt my anxiety and depression begin to spiral out of control. I did not want to be alone with my intrusive thoughts due to my pain. And shoving those feelings down to appear "fine", "strong", or "on an optimistic mend" for my parents' sake, especially my little sister, was exhausting. To my family, I had always been fun-loving, upbeat, talkative, loud, fit and a foodie. Those last two were some of the "standards" I found the hardest to live up to. Again, not staying my parents belittled me, BUT having anyone comment on how you have changed... and not with a positive tone.... sucks. I tried so hard to show up as the Jazzy they knew me as in high school, when we last all lived under the same roof for an extended period of time. This meant doing extensive PT, walks around the park, yoga and even ZUMBA with my mom to keep at an appropriate (honestly these are set by society, lmao standards on women health) "diet" and "workout" regimen. Two things I did not need to prioritize at that moment and time, but I did, because again we form to those around us. My Dad got very into the Under Armour "My Fitness" app, an app that helps you count every single calorie gained or lost. He's an engineer, so that sort of attention to detail helped him stay logical about his nutrition intake and exercise for his own back recovery. All great things. So, we all jumped on it. Every meal we had together we would input our meals and proportions then go for a long walk. After the walk I would go outside and do Yoga and PT for about an hour (in addition to the PT I had in person). Looking back, I knew it was too much but I wanted to seem like I was on the up and up. So, I did what I do best (not good ik haha ) I pushed those feelings down, and well again looking back, this was the start of my eating disorder.

Pair body dysmorphia from a lifelong flippant gratitude for an athletic looking body type, with calorie tracking AFTER being forced to stop exec rising like I was my whole life? Yea. This is where it became a daily fore thought. "Do I look skinnier? I need to mark my weight from the scale into my app for today. I wonder how much exercise the app will tell me I need in order to loose x amount of pounds this month?" All this without the slightest concern of maybe this app doesn't take people like me into account. And that "me" was the me I did not want to fully accept even though I related to it, a chronically ill person.

Rather than focusing on listening to my inner self telling me that I was indeed making progress with hand use, I only internalized my parents beliefs, projections, and assumptions. I mean remember this was the summer of 2020, COVID lockdown. It meant lots of time at home, under what felt like a behavioral observation experiment. You tend to conform to the people you surround yourself with right? I mean at school or at work? Well, I strongly believe this is what happened to many young adults such as myself trying to learn and find themselves during "the best four years of our lives", college, the years where we are expected to "figure our lives out". How was I to navigate through my increasing anxiety, depression, grief, and loss of hope, for school, let alone for the sake of the quality of my life, while AT HOME 24/7?!

So, I didn't share every little symptom detail the months approaching departure. I didn't want to feel guilty for wanting to actually live like a 21 yr old despite my pain... and going through my senior year of college at home while in pain... was not what I needed. I needed some semblance of normalcy or at least a commitment to get to a new "normal" at my own pace, more independence and self confidence. Plus, rehab could be done from anywhere!

pictured: Scar Update 2020 AUG

pictured: Forcing myself to workout with Yoga Ball to keep loosing surgery (s) weight. Start of photo "evidence" logging into App... start of ED