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healing is not linear... it is okay to have ups and downs.. TW: mental health, eating disorder I expected my TOS surgery to be this magic "cure-all" prior to school starting, and when the pain not only pursued but worsened, I wanted to give up. Pair this with the mayhem and anxiety of COVID lockdowns, I felt trapped inside a body I was desperate to get out of or at least change. Prior to that year, I had never experienced suicidal ideation or thoughts of self-harm. It was my own "shameful secret", or at least that's how I saw it. Saying those words aloud meant facing those fears head-on, and after fighting against my own body for pain relief for so long, blocking out the mental toll also became routine. I got too used to putting on a brave face and choosing to focus on something else, this was easier than facing my fears and saying the words, "I'm really struggling" aloud. The only person I ever confessed my darkest thoughts to was my therapist, and yes, eventually my partner. My therapist told me to focus on healthy things that I can nourish my new body with, as a way to rethink the pros and cons of my surgery recovery. This helped me realize the handful of pros that were HUGE, in order to lessen the significance of the cons. I was not as sensitive to the cold in my elbow and hand! But, the biggest takeaway was being able to use my arm more than I ever was in those first two years of my initial injury. I decided that since using a stationary bike felt good to move inflammation from my TOS surgery upgrading to an actual bike would give me an excuse to "escape" lockdown. This happened to be the only kind of physical therapy I could tolerate. Doing the usual progression of resistance training with bands and stretching actually ended up causing more pain in my neck, arm/shoulder, and sternum. I saw this as one of the main cons of my surgery, since becoming more active with my upper body was personally, an essential thing for me to "get back". However, my therapist did strongly suggest strengthening my core to assist in a better ergonomic posture to lessen the strain on my back. So, I began to do small ab circuits, realistically it was glorified yoga. But, alas, we can't get everything we wish for. ​ My main distractions were weekly therapy, excessive biking/calorie counting (to a degree that was not oh-so-healthy, mainly to lose pre-surgery weight but I didn't realize it then), and spending lots of quality time with my partner, my family, and lots of pups. My partner became my number one person to lean on, which was great throughout college since we were together most of the time, and if not, I would be with my roommate. I decided to keep up with this routine going into school until I found healthier ways of surviving through the pain. That first semester of college went better than expected, despite all the anxiety I had going in. Yes, it was a lot of work, but due to COVID, everyone had more time to find something that made them happy. I rediscovered what having a close group of friends was like. I felt grateful, to have a system/community of support to cheer me up and be understanding. Since I went to an all-girls high school, I lacked a close-knit group of guy friends; at heart, this was severely needed. I am what people call a guy's gal. I love being social, playing video games/sports for hours, listening to raunchy rap, and smoking nonstop. We set up Mario Kart tournaments, hikes, and even smoke-out challenges. It felt like I was a little kid again getting to just have fun and not care about other responsibilities. This was a sign, I needed to find personal moments of joy. My main source of joy came from being able to ramp up physical therapy, to the point of being able to finally call it a workout! However, I was beginning to feel more like myself despite increasing subluxations along my back, sternum, neck, shoulder, and abdomen. Some were louder and more painful than others, and there was no way to know when it would make me throw up or go into a panic attack. And sleep, oh boy, well since they had to snip the muscles used to pull a breath from your chest in order to get to my deformed first rib and remove it, the only way to breathe deeply was by focusing on my diaphragm. Just like many people, your body "forgets" its own breathing rhythm while you sleep. This meant panic attacks pretty much twice a night... I felt out of control and extremely desperate for relief. Yes, smoking did help with pain relief, but by now my tolerance was quite high I needed some other medication to help ease my painsomnia and panxiety. With little sleep and always feeling jittery and on edge, panic attacks began to disrupt my school and social plans throughout the day. So, I decided to be more open with my psychiatrist and began Cymbalta. Those first couple weeks of adjusting to the dosage increase and dealing with side effects were not easy, but with any medication, especially, anxiety and anti-depressants, consistency is key. The ongoing nausea was caused by the nerve pain felt in my spine and squeezing me around my rib cage. was getting more and more severe, food became a trigger for anxiety. My appetite was beginning to diminish quickly and even if I managed to get something in my tummy, the digestion process would make my ribs spasm to the point of violent subluxation that would ultimately send a burning sensation across my abdomen. Pair this with needing to eat in order to take medication, I felt guilty and stressed. However, there was a voice deep inside that didn't mind not eating three meals a day in order to "look good feel good". Staying sedentary often made my pain spike, so staying active and distracted felt productive. I got cleared from my PT to work part-time at Michales as a cashier. He said it would be a good way to have a controlled workout since using bands and resistance training would cause major spikes in inflammation. As I started working I noticed that my back would spasm more often, to the point of not being able to walk or sit to due feeling breathless. My PT suggested I go to a chiropractor weekly to realign my spine, hoping that this would relax any tight muscles spasming and causing subluxations and impinging my back. Everyone in the clinic knew me by the nickname "pop rocks". I even had to be booked with patients who would be unbothered by the sound of joints popping in and out. My chiropractor even said that I was the loudest adjustment he had seen in all his years of working in the field. This was when I was first told about something called slipping rib syndrome and hypermobile disorders. Every week intensive massages were done to my scaps and back. My poor massage therapist tried everything to loosen my rock-hard muscles, the only thing that would help was smoking and doing nothing, which was not going to work out for me. I was growing more frustrated and hopeless and my pain remained persistent. My foam roller, yoga ball, bedroom floor, and I became very intimate, haha. It was the first thing I would run to do as soon as I got home from work. Some nights were worse than others and on those nights I got very little sleep and panic attacks due to the burning pain. Yes, working was very difficult but I needed to feel productive in order to not slip into a poor mental state. Sometimes you just have to keep living and keep pushing through the pain or it will eat you alive.

classes and chronic illnesses are a tough combo.... these are some of the things that made the first semester of my senior year in college doable! To say that my first last semester in college was rough is an understatement. I spent most of my classes in bed, laying down with my AirPods on and my video camera off. Once again the amazing Disability Center aided me with hiring notetakers and speaking to my professors about my situation. BUT! I always always always made it a point to set an on-camera or face-to-face conversation about the surgeries that led to my most recent and troublesome surgery recovery. Since most people assume "one has surgery to get better" I had to advocate for my ongoing illness, not just an injury. Luckily, I had had most of the professors in my past years and had made great connections that I didn't need to spill my entire medical record to them. Plus, I didn't really know why I wasn't recovering quicker. So I didn't want to answer any hard questions I myself was still searching the answers for. The hardest adjustment for professors, in general, that semester was to trust that their students were actively engaged and listening to lectures, despite them being virtual rather than in person. Hence the rule that spread across all courses, your video camera must be on at all times. I will admit it was hard to stay interested while laying in bed with my camera off, so some adjustments had to be made. So, rather than lay there, I decided to be physically active while listening. This small change in my routine made all the difference in the world. Yes, I missed feeling comfortable in bed during those 9 am classes, but I was actually grasping information A LOT BETTER. I also noticed that the 3-hour long morning body aches and stiffness began to wear off a lot quicker. Even though I really didn't want to get moving on most mornings, I would remember the positive effects. Who knew that making a scramble and bomb coffee would change my whole mindset? In past years, I didn't fully identify with the label of being functionally disabled. It was just my arm that kept me limited. But, this semester of school, I definitely felt "functionally" disabled. Not being able to sit for more than 30 minutes, not being able to look down for more than 10 minutes, and only being able to type for 30 minutes. Sitting became enemy #1. I felt as though pop rocks were going off on the right side of my rib cage. My right leg would get a shooting pain going up and down all the way to the top of my thoracic spine. (driving down to school was ROUGH. my mom followed behind me the whole way and took as many breaks as needed. I really needed my car in Redlands and we needed the truck to haul all my crap from the bay to so cal) All these things made me feel useless and lazy. And forget about working out, even physical therapy was beginning to severely flare up my pain. (More on this Later) I had to choose what activity to exasperate my body on. So in order to give myself a hand, I went fully digital. All my notes came in through the disability center and all essays or assignments were done using the speech-to-text Dragon software or google docs. (I still use these today!) I tossed out the notion of sitting at my desk for the first semester. I embraced the online school lifestyle. It was my one stroke of good luck, COVID. Odd, I know. But, for those with chronic illnesses, online courses added a layer of flexibility that didn't exist before. If I didn't feel well at all one morning say, all classes were recorded, so missing one or two due to pain management, wouldn't set me back like usual. What about class participation grades? Well, I had an in-depth conversation with my professors about how we could change their grading for my assignments/seminars. So, if I was present during an online session, but was having a terrible pain day, I didn't need to have my camera or microphone on. My professors and I came up with a great alternative. All I had to do was one of the following; type a one-page summary of my thoughts on the class discussion or assignment or record a voice memo of me adding my input. And with that, Voila! Participation was secured at my own pace. This first semester was going to be a much lighter load than my second-semester course plan. You see, it was senior year. So that meant one thing HAD to be done before graduation, senior capstone. Some schools call it the senior thesis or dissertation. Well, at the U of R, the usual rule was if you had two majors, you had to do two capstones. Great. I had to file an appeal to allow me to do one combined capstone that would hit the requirements for both my English and Public Policy major. Luckily, I started thinking about a potential cross-department capstone late in my junior year and have already gotten the approval needed. So, before surgery, I read some classic literature and tried to find a potential to intertwine policy. I didn't necessarily need to start stressing about this, but it was for sure in the back of my mind. All I had to do was focus on getting through these first months back to school post surgery... Seems simple enough huh? not. Tools I used: - microphone headphones to capture my speech-to-text accurately - dragon software OR google docs ( both worked well but google docs was more convenient for school purposes, plus it was FREE) - wedge pillows to support me while laying in bed - neck pillow! (I know sounds silly but it hurt to look down and hold my head up for long periods of time. I needed cervical spine support) -heating pad stretched across the right side of my back specifically below my shoulder blade where it felt like someone was stabbing me continuously and another heating pad around my lower sciatic area -massage pad (it was not deep tissue massage. it had different tempos of vibration (like stem therapy) this became my best friend. the spinal nerve pain the shooting stabbing pains that went up and down, made me go insane. I had felt this nerve pain in my arm and neck but to have it all over my spine and my bra line... I felt squeezed out of breath 24/7 -used sergio (small surgery pillow i had since first operation) for lumbar support - FOAM ROLLER, used every morning and honestly every 30 minutes to an hour. always felt like I had to readjust my whole spine/ back/rib area?? and neck, especially after sitting down - posture brace, my abdomen hurt but didn't want to make my shoulder and back pain any worse, contracting those muscles on their own?? lol -massage gun, to beat down those knots and trigger points in my scapula (s) and lower back. I would even massage out my butt since it felt like those muscles were overworked every day

Cal literally became my other half during those two weeks immediately post-op. It was great... until it wasn't.... Ooof those two weeks were a doozy. A lot of the little details are a blur, but the overall gist I do remember. The three main feelings were guilt, painxiety, & misery. Guilty because my Mom and Dad couldn't take care of me the way only Cal could. Guilty because my own misery was making Maya oh so anxious and sad. My poor sister has had anxiety since she was like 5. She hates crying in front of people and so when I was visibly upset, she was too and wanted to hide it for the sake of my parents. Lastly, the feeling of complete misery, not being able to move a whole lot during that month post-op. My loss of agency and loss of exercise boiled inside of me. And amongst the pain, one feeling became a consistent one, dependency. Once I was able to move around a bit more on my own, it was time for Cal to return to his parent's house and get working. This is when I went into a deep sense of depression. I felt like I was on my own now to do everything. Get meds, get ice, get more pillows, etc. But the hardest part was at night. When the entire house went quiet and I was alone with my pain and intrusive thoughts. No tv show or movie could keep me distracted enough. As time went on ( a whole week) I was able to drive on my own and get to physical therapy. I was excited to finally feel like I was getting better. But, alas I was reminded of my limitations only being a month and 2 weeks post-op. Physical therapy consisted mainly of stretching and massages. It wasn't the exercise I was yearning for. It was also dragging on for what felt like 6 months. At this point, there was no way I was going to be able to write notes and look down at a book for at least another month or so. However, this school year would like a lot different. Everything was going to be online. So, naturally, my parents wanted me to stay home, but with my mental health deteriorating, I needed a sense of normalcy, and being in Redlands for school was the norm. I contacted my girlfriends and we began looking for apartments for the four of us. It was finally something I could look forward to. For the first time, I would really have my own space in college. No RAs to get upset about weed, no noisy people, just good vibes with close friends. It felt like the perfect healing environment. I didn't have to sit and walk around classes. I could just do class online, in bed lying down if needed. I once again contacted the disability center at school and got note-takers, extensions when needed, and permission to attend classes off-camera. My parents took a minute to come around to the idea of me going to Redlands. At first, they simply thought that just because Cal was going that I too HAD to go. Well, yes of course I didn't want to be far from him, but 95% of my reasoning, was my mental health. Like many during the lockdown, my depression worsened. Not only could I not go anywhere, but I also couldn't escape my pain either. It made the trapped, panic attack-inducing, suffocating, self-hating intrusive thoughts. Those nights I spent awake and miserable in pain, had made their mark. It was the first time in my life that I understood the term "suicidal ideations" (more on this next post I promise) That other 5%? It was my love and the level of dependency I knew I had with Cal. It comforted me knowing that I could sleep over with him on nights when my pain was really bad and felt taken care of. And the nights, that I felt my baseline new pain, well I would stay at my apartment. It made me feel ready to get a better sense of independence. Fast forward to the start of the semester and I was all moved into my apartment. Gwenny, my roomie, and I bonded quickly. She was the most caring and considerate person I had ever met. We had known about each other since our freshman year, but with the number of meds, I could not recall our first introduction. Nonetheless, despite our different upbringings, we had TONS in common. However, there was one thing that I still severely struggled with, sleep. In the first weeks of living in Redlands, I sleep most nights over with Cal. Why? Well, for one, all of his friends also smoked, so it was nice to be able to smoke openly without any judgment or fear of being inconsiderate. Gwenny knew I smoked, but had never really been around the actual flower smell and smoke. So, I would only smoke my pen at the apartment. Two, oxytocin. It is crazy just how much my anxiety and depression would ease up the more cuddle time I got at night to sleep. It was the main thing that helped me relax into a peaceful night of sleep (for five hours at least). This made me feel so guilty. I had my own apartment, and my own roommate, and yet I still felt this emotional and physical dependency on Cal. No, not in a sexual way haha, more like actually massaging out very tight and tense muscles in my thoracic and cervical spine. It was either do this or take the maximum dose of baclofen every single night. Baclofen is a great medication, but it had a tendency to mess up my stomach and make me utterly groggy/zombie. This, plus my stiff pain in the morning, made it so hard to get up and get the day started. So, it really helped to have someone in bed with me to wake me up. I didn't want to put that pressure or sense of responsibility on Gwenny. But, again, I hated this amount of dependency on Cal. However, there was one thing about spending so much time with Cal and his housemates that was slowly becoming more and more triggering. You see, Cal had moved into the baseball house with his teammates. I was beyond happy for him to have that time to bond with them during the weird fall ball season they were having due to Covid. So, this meant A LOT of baseball talk. No, baseball itself wasn't the issue. It was when they would start talking about how excited they were for the season to start back up. That's when it hit me, this was the first year of my life that I wasn't part of a softball team. Don't get me wrong, I loved hanging out with the guys, we actually ended up with a friendship that I will cherish forever, but with my pain increasing, the more it felt like it was getting rubbed in my face. I know they would never, but man was it hard to be around all their conversations surrounding their love of the game. And, baseball was constantly THE topic. Even the video games they would play, MLB the show, and SuperSluggers. I know, these might seem like minuscule things to you, but it just felt like a constant reminder of the love I had lost. The more time I spent with Gwenny during the day, the closer we got. It made me realize how much I missed having that ONE girlfriend you tell everything. I opened up to her about my loss of identity, increasing anxiety, and my growing resentment towards all things that reminded me of softball. I remember oh so clearly, each of us in bed, not able to sleep due to an active mind filled with anxiety. It's a night I will cherish forever because she and I felt like we could lean on each other to get that sense of confidence and independence. I had an open and honest conversation with Cal ( after having a major panic attack). I explained how I needed his help to accomplish my goal of independence. So, we set up sort of a loose schedule. I would sleep at my own apartment during the week (with exceptions like terrible pain nights or whatever) and spend the weekends with Cal. You see, this worked out because most of the time on the weekends, Gwenny was super busy with Church activities and meeting up with friends for hikes and fun adventure days. All things, I couldn't really do without compromising my physical work stamina/ hand endurance. Spending those weeknights with Gwen became some of my favorite nights of college. Our other two roommates were rarely around so we had the entire apartment. We would stay up late talking about our anxiety, depression, pain and so much more. She is the reason I got through that first semester. The number of times she would help me with daily tasks out of sheer love and support made me feel oh-so blessed. It also made me realize that it was not shameful to ask for help from others. She would also remind me that even though I was in pain, my pain didn't need to define me. And as for my growing anxiety about anything baseball related, she made me feel heard. I had severely missed having that one girlfriend who you would tell anything and everything. I could feel my anxiety begin to diminish each day I was around her light. Her friendship also made the weekends more personal with Cal. Instead, of worrying about spending so much time around baseball and not being able to cherish time with him, I found myself feeling free to love him, baseball and all. We would plan date nights on Fridays, and then the rest of the weekend we spent hanging out smoking, playing Mario Kart, going to the beach/Joshua tree/new place, and finally, feeling like life was back to normal. Covid was still rampant, so we created social bubbles. Mine consisted of Gwenny and our other roomies plus Cal and his housemates. The more time I spent with his housemates, the more I saw them as friends rather than Cal's close teammates, a fact I couldn't help but feel sad about. For the first time, I didn't have any other time obligations other than focusing on school and my health. Life was starting to have some sort of balance of living with pain and simply living.

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

here we go... AGAIN Right after that appointment with Dr. Lee on May 27, 2020, I was put into thoracic outlet syndrome-focused PT by June 3, 2020. My therapist was named Vicki and once again I struck gold with an amazing and caring PT. She took the time to listen to my wacko injury story and the surgeries, numerous hours of PT, and pain that followed. She had also spoken directly to my surgeon about how to best strengthen my thoracic area before going under the knife. From that conversation, and the one we had, she offered an abundance of home PT exercise, but most importantly, she understood that overworking my neck, shoulder, and arm, always led to excruciating nerve-burning tingles and muscle spasms. This was my unfortunate cycle of PT in previous years. So, rather than focusing on resistance training, she identified my trigger points for both nerve and muscle pain. From there, she decided that stretching and massaging over tight muscles is also working it, but in a gentler way. She became another person who ensured me that yes, it was a good decision to have another invasive surgery. I love my mom and dad do not get me wrong, but I think seeing their daughter go through surgeries and still be in pain, made them miserable. My dad has always been more cautious when it comes to deciding whether a medical procedure will be worth it in the long run. For example, "you had three surgeries already. they didn't work. why risk having another one?" You see, my dad had a microdiscectomy the year before. The surgery was quite painful for him and unfortunately not a long-term smashing success. He himself had now been dealing with right-sided sciatic chronic back pain for a year and taking gabapentin. I really thought that he would understand my need to "fix my pain" since he too was dealing with it. However, this wasn't the case. At the time it was very hard for me to understand why we could never speak openly about how pain affected each of us separately, but also our evolving relationship as Dad and daughter. You see, my Dad and I always always always had one thing that kept us tightly bonded, sports ( mainly softball duh). He was the person taking me to all my practices, games, and travel tournaments. So, naturally, we spent most of our time together. (Don't worry my Mom was around too but he was the reason I fell in love with sports) When I had to stop playing softball, we lost our connection. I'm in no way blaming my dad let me be clear, but it made me realize that we didn't have much to really talk about anymore. I missed that sense of having a thing with my dad. So, in an odd way when his pain began to show signs of becoming chronic it made me hopeful that one day he would understand how much pain can change you. (disclaimer: there are so many other ways pain can affect someone I am in no way generalizing. It's just that these two stark opposites pertain to this story) For some, it becomes a motivation, something to conquer and push through. For others, it becomes a loud painful reminder of what the pain has taken from them. My dad is a logical yet pretty optimistic person. So he fits into the motivated pain person. His coping mechanism became shoving down any obvious cues of him being in pain in order to still appear as our strong and capable dad. Whereas, I have always been more emotionally reactive, hence my depression and anxiety which followed my injury. I get it. Pride is something that every spoonie struggles with. We either go around gripping it so tight that we build up walls instead of realizing, "hey I need help to get something done" or "I physically can't do this anymore." And both are simply okay. Looking back, my dad and I were both struggling with letting go. I was struggling to give up on the pain-free athletic life I had, therefore chasing down any possible way to fix it. I could not face the possibility of becoming "functionally disabled". While he was struggling with letting go of any shame or guilt for needing help, especially from a loved one. As for my mom, she has tremendous amounts of anxiety when it comes to her kids' well-being. She is a classic Nervous Nellie. For example, "I'm worried about you taking so much medication, what if you get addicted? what if something goes wrong during surgery and we can't be there because of covid restrictions? will you be okay alone? I hate seeing you not getting better" My mom and I are very similar. She and I are emotional people which is great because it makes me feel seen, but it can also have its downsides. Every decision I wanted to make in regards to my chronic pain, I was forced to consider how my mom would take it, rather than focusing on how I was taking the news. It all began to feel overwhelming. I felt like a chaotic burden that my parents were trying to control when in reality, we were all scared because at the end of the day we knew the truth. None of us could control pain. None of us could control the outcome. We could only take a leap of faith, in me, in my decision, and ultimately my surgeon. My whole family drove me to the hospital on the morning of June 18, 2020. Check-in time was 7:30 AM sharp. The whole way there I tried to act as calm as possible. Even though my sister was only 9 at the time, she was able to read right through me. She reached her little arm out and I hugged it as she patted the top of my head. I remember thinking that my parents probably thought that I was comforting her so that she wouldn't be nervous about my surgery, but really she was comforting me. I knew my parents were nervous and on edge about this surgery, so I wanted to show how confident I was with my surgery plan. But, on the inside, I felt a million butterflies trying to make their way out of my mouth.... It was time. Surgery number four was going to happen. It was my first time being in the hospital for a long period of time by myself. Even though I could call, text, and facetime Cal and my Mom, it felt lonely going through check-in. Luckily, my nurse was amazing and kept an upbeat chatty vibe. She complimented my strength and told me to not be shy and ask her for anything. (she even took the pic for me) This helped keep me feeling comfortable. Once the iv was in, the anesthesiologist came to chat with me. He asked a series of questions, but the two most important questions I knew I needed to elaborate on were about my asthma and smoking medical marijuana. Both of these factors affect the amount of anesthesia that needs to be administered throughout the surgery. I had spoken to him two days prior to surgery as well. He discussed with me how smoking does make anesthesia not as effective. The other thing he pointed out was how close together my other surgeries were. More anesthesia exposure in a short period of time makes it so that finding the correct high dose amount can be tricky. I guess you learn something new every day huh? I do wish I was made aware of this 2 weeks in advance but, that's life! I remember going into surgery a little too clearly haha. Similar to my last surgery, I was wheeled into the OR wide awake. However, this time I was able to place myself on the operating table, lay down in my own comfortable position, and with that, the nurses began hooking me up with patches. This was new, the Drs even mentioned how funny it was that they needed to ask if it was okay to open the front of my gown to show my ribs, "most patients are zoinked out by now" We giggled and I continued chatting with them as if I wasn't about to go under the knife.... The nurse had on a sick Star Wars surgical cap. SO naturally, we discussed the cinematic art pieces. As they opened up my gown goosebumps and waves of chills radiated throughout my body. "Would you like a heating pad under you and a blanket on top of your legs during surgery?" I aggressively nodded. The anesthesiologist came into the room and said, "Okay, ready for a sticker on your forehead? It changes color as you get sleepy so we know how much medication to administer". "Woahhhhh" were the only words I could get out before he placed a long rectangular shape sticker across my forehead. "Okay, I'm going to go start increasing the type of anesthesia and keep talking me through how you feel. How's your pain right now?" I responded with a, "hmmm I'm at about a 9 right now... could be because I feel nervous too.." "Okay, adding painkillers with anesthesia. Why don't you tell us a bit about how you got hurt? And.... what kind of music would like playing during surgery to help with the nerves?" "Hmm..... something chill, like Khalid!". I then began explaining that I used to play softball and how I never knew about my rib until this year despite years of rotator cuff tendinitis. The last thing I remember was tearing up saying how I hoped this surgery would let me play again... Dr. Lee walked over my head and said "night night" and with that, I drifted off to sleep... In the past, as you can remember, I never had any issues coming out of surgery. I would either wake up naturally asking for apple juice, toot toot myself awake, or get woken up gently by the nurses. I had never had an experience like this one... I remember feeling the most intense pain I had ever felt in my life, then suddenly, a lack of air getting drawn into my lungs.... I couldn't pull any deep breaths, only patterns of shallow hyperventilated breathing... yep, a panic attack. The nurses rushed to get me an oxygen mask (maybe even laughing gas to calm me the f down) and medication to keep me calm through my iv. I felt the Dilaudid begin to ease my pain and breathing became less of a struggle. I felt wide awake and anxious. No drowsiness from the anesthesia, just physical exhaustion, and pain. I immediately went to touch the drain tube and understood what Kaitlyn meant by the clicking/bubbles popping feeling. It was an odd sensation to have liquid and blood being actively drained out of your lungs.. I periodically face timed my mom, sister, dad, Cal, and various friends for sources of distraction. The doctors would come in every couple of hours and move me around for chest x-rays to check up on my progress. Around 9 pm that night, in the middle of my vampire diaries episode (the audacity) my pain spiked into a whole new threshold. I had tried to sit up on my own to walk to the bathroom and pee hopefully. Yea.... that didn't really work the way I wanted. Forget using what little ab muscles I had.. any movement, any twist would send agonizing stabbing pains on the right side of my thoracic chest wall. Even my neck was in anguish. Even lifting my head up or turning to my left felt impossible. I pushed the red button and my nurse rushed in asking if I was okay. I was in full-blown tears having a panic attack because I felt a tugging almost tearing feeling around my incision. All of my muscles were insanely inflamed and therefore tight. The spasms didn't help make things better either. She gently brought the bed to a "sitting" position. One arm cushioned my neck, and the other supported my lumbar area. She told me "release all tension. don't try to use your muscles to get up let me lift you". I turned into a limp log and added pressure to my right ribs as more support. It felt as if I was being levitated. Then, a sudden rush of dizziness. My nurse and I locked eyes and she presented a baggie ready to catch my vomit... what a homie. Then it came time to try walking. As soon as I felt more steady, the nurse said, "okay now give me a hug". I placed my arms around her sides and once again she lifted me off from my seated position to a light landing on the heels of my feet. Then she said, "Okay, now actual walking will not feel good right now with your lung and rib pain. So I suggest either the penguin waddle or subtle shuffle". She then demonstrated the two as a way to make me giggle. I went for the subtle shuffle.. I wouldn't dare raising my legs and engaging my ab muscles. Now for the other challenge.. landing on the toilet, haha. Once again my amazing nurse instructed me to hug her so that i could literally just plop gently. As you can imagine, these actions in reverse were also not fun. Once I finally ended up on the bed again, she gave me another round of Dilaudid and added some muscle relaxers to the mix to soothe everything, and hopefully get some sleep. It got to the point where it became impossible to find a comfortable position for my neck to watch tv until I fell asleep, but I needed the noise, the distraction. So, I called Cal. He was hanging out with some close friends at his parent's house (distanced outside cuz hello covid) and they all happily talked with me. Then, as the medicine began to kick in and I got sleepy Cal left me on the call so that I would be relaxed with the sounds of familiar voices. Remember, it was at the brink of the covid craziness, so I was all alone in the hospital room. Every time I would close my eyes and start to drift to sleep I would jolt awake from sudden pain and what I now know was medical PTSD from the way I came out of surgery... This went on the whole night. As Cal's friends left his house that night, he left me on speaker phone to listen in on my breathing and be there in my ear with encouraging words that I was strong enough to get through this one miserable night alone, then get to go home to him and my family ASAP the next morning... I got woken up at 7:45 with a team of doctors coming to check on how I was doing. Once again they took chest X-rays and checked on my medication and vitals levels. Then, the moment I was waiting for. Dr. Lee came into the room and said, "Hey kiddo how we doing this morning? Heard last night was kinda rough." I nodded and said yea I didn't get much sleep. "Well, on a positive note, surgery was a success. I do not see any substantial liquid in your lungs and inflammation levels seem normal for right after surgery. I also have a present for you." He handed me a little cup, like the ones where you pee in for a urine test. I picked up the cup and peered through the bottom, and there lie a piece of my rib. "I saved you a part of what we resected as a souvenir" I was ecstatic. I know, it's a weird thing to be happy about, but it served as a reminder that this surgery was the right decision. The piece he gave me ended up being the very tip that rested on my brachial plexus, the stubborn bastard rib. Then, I was once again brought to a seated position and the team of nurses said, " Okay, ready to get that drain out?" I nodded and prepped myself for a needle of some sort of local anesthetic. They giggled, "Sweetie you need to relax your muscles. No meds are needed. This won't hurt I promise but it will feel uncomfortable. So, as you take as deep a breathe as you can I will pull as you release" I looked at her like a deer in headlights and slowly began to unclench my hands and neck muscles. Inhala.... exhala. The best way to describe the way this felt was like a snake or a long worm being yanked out from a teeny tiny hole under my new scar. yuck I still get the heebie-jeebies thinking about it... I finally got to relax watch the vampire diaries and eat my breakfast. I was actually starving. I ate my whole waffle, two pieces of bacon, and a jello cup. After shoving down all the food I was ready to try to do my last subtle shuffle to the bathroom. I still needed one more chest x-ray before I was allowed to leave. By 9:30 I was getting prepped for discharge. I was given my last dose of Dilaudid before leaving so that the car ride home would not be super painful. I called my mom and let her know to please bring ice packs, pillows, and a blanket for the car. I know I know I said ice packs... weird huh? But, Kaitlin had told me that ice was going to feel amazing on my back post-surgery, and believe it or not with how much inflammation and soreness I felt I wanted the ice. Not directly on my scar or the front of my chest... that was way too sensitive to everything. Plus, I had to keep it as dry as possible for the next 48 hours. My mom arrived around 10:30AM. She gave me a big hug as she said, "Let's get you home hun, Cal is waiting in the car for us" She pulled out some comfy shorts and a tank top. Hallelujah athleisure to the rescue! But, hell I kept those hospital socks cuz I knew I would need them for my subtle shuffle. Getting dressed was exhausting. I could barely lift my arms without insinuating excruciating pain from my incision site and back. I had to be held up by nurses in order to stay seated without any support from the bed. I couldn't hold myself up. Forget feeling shy or insecure around doctors or nurses, I let two nurses and my mom undress and then dress me. I thought to myself, "how the hell am I going to do this at home? how the hell am I going to walk to the car?" There was a gentle knock on the door. Another nurse came in with a wheelchair asking" who's ready for their hot new ride", phew, thank goodness. We wheeled our way out of the hospital and I quickly learned that every little bump was felt deep in my core. Like not just my whole moved but my spine and ribs itself were getting bruised. The car ride was not going to be fun. Cal pulled the car to the front of the hospital, jumped out of the car, and immediately gave me a big hug. I started to tear up and just held onto him. He carried me into the car as gently as possible. The passenger seat was lined with pillows and ice packs ready for me to rest my back on. Then, with a big smile, my mom said, "Here's sergio the surgery pillow". Finally! This little pillow, man, I don't know what it is about it, but it is magical. I found it at Marshalls with my mom the day before my wrist surgery (surgery #1). I remember immediately gravitating towards it because of the size and yes it is indeed very soft. It gave the perfect amount of pressure on y stomach while keeping my arm very supported. Oh yea, how's my arm you ask? Well, it felt like crap but in no way comparable to the pain felt in my rib and the right side of my back pain. I had orange sausage fingers once again. But, I was hoping that as the inflammation in my shoulder and incision site went down, so would the nerve pain. As we drove to my parents' house my mom drove very slowly. Slow enough for me to spot a Jamba Juice and know that I NEEDED something sweet. This was another one of my surgeries traditions (lol sad). Jamba is a must. We parked in the driveway and my nerves shot up. Now for the fun part, getting out of the car and into a comfortable position. Cal once again carried me out of the car. Did I forget to mention that it was blazing hot that summer? Like abnormally so for the Bay Area. And as much as I love my parents' house, it could turn into a sauna stupid fast. As we entered the house you could feel the heat, it felt suffocating rather than clean like the hospital. Sweating was going to be an issue for the first two days...I had to keep the area as dry as possible for the stitches to heal. As soon as Cal put me down on the couch a pure surge of pain. For the first time ever, I knew what it felt like to be in so much pain and yell in anguish. My mom hurried over and began stroking my hair going "shhhhh shh". While laying there on the couch Cal ran over to the freezer, said "ready" and with a nod I placed my arms around him like a hug and he lifted my neck and back gradually as my mom quickly placed ice packs under me. As Cal laid me down another yell... the pain felt unbearable. Every time I was sitting up my chest, arm, neck, and surgery site felt too weak to hold themselves up. However, every time I was put on my back, the initial impact on the back side directly opposite from my scar felt as though something kept stabbing me. Not to mention, that my arm would get more inflamed and my neck would spasm. Nothing felt right and everything felt oh so wrong. My mom tried to reposition me but couldn't bear weight on her weak wrists (gee I wonder if something runs in the family). She wanted to be able to move me around and help as much as possible, but she was only making my pain worse. I physically was unable to use any sort of muscle left on the right side of my neck. See, during surgery, they had to snip snip past those neck muscles that help you extend your neck, rotate your neck, and oh yeah pull breaths from your chest muscles down to your diaphragm muscles and help you breathe easy. All this led to inevitably being sensitive and weak post-surgery. So imagine how much strength it would take for my mom to lift a limp and fragile body. Not gonna happen... and my dad has a bad back... so that left Cal. Physical therapy would start back up on June 26, 2020, but for now, the only PT I was told to do was the breathing torture device. What is that you ask? Well, the technical term for it is a spirometer. I had to use it at least once every hour to exercise my lungs. Doing this made my pain worse... It hurt to feel my ribs expand as I tried to take a deep breath. I popped the oxy prescribed and hoped it would help. As I started to calm down and get my breathing under some control I realized something... my 9-year-old sister hadn't been seen. In a raspy gaspy voice, I asked, "Where's Peanut?" I hear little footsteps coming down the hallway. My poor little sister came running over with red puffy eyes and gave me a gentle hug and a kiss. She held my hand and said, "are you, okay sissy? I've never heard you cry like that..." She wiped a tear that was falling down my cheek (cuz she could tell I couldn't raise my arms) and I said, "I'm in a lot of pain. It scared me too but I'll be okay soon. Wanna watch a movie with me?" This is what my days consisted of, lots of meds, lots of movies, and lots of TV. As nighttime came, I feared not being able to sleep in comfort. My traditional Latino parents actually let Cal sleepover. Not in the same room, but still this was a HUGE step for my Dad. Cal slept in the living room on a cot and I slept on the couch so that they could both get up and help me. So, if I woke up in need of ice, water, my meds, a snack, a trash can, to get up and pee, literally everything and anything I would call them. Literally, just call one or the other until they woke up. Whoever woke up to the phone ringing would wake the other. However, the problem that none of us expected was panic attacks in my sleep. I was knocked out without any problems the first night, due to exhaustion from being in the hospital and then moving back home. But, the second night? Well, I remember taking a high dose of my pain meds, gabapentin (yep I was put back on it to help recover after surgery), and a muscle relaxant before heading off to bed. I also remember that I didn't have a lot to eat since my pain was too high and therefore my appetite was nonexistent. Luckily, my mom bought me the essentials; Gatorade, saltines, fruit, and Costco muffins. All things she knew I would never turn down when I felt like crap. I fell asleep watching tv in bed. I needed the noise distraction to make me feel like I'm not just suffering in silence. Now, this is where things get blurry. I just remember getting woken up by my Mom and Cal. Then, just realizing how much pain I was in I cried... the meds must have worn off. Apparently, I was crying and yelling/ hyperventilating in my sleep. The twinkle lights in my room were turned on so that Cal could get me in an upright position to try to relax my breathing and have me drink some cold water. Then, he went to the kitchen to swap out my ice pack. Meanwhile, I am still crying well more like yelling wheezes because of the burning nerve and bone ache from my incision site... it felt like someone had hit me with a bat on my upper back. Boom, yet another panic attack. The inflammation in my chest made it even harder to pull breaths in between tears. I couldn't calm down the pain or my crying. My Dad was sleeping and woke up to me crying and then heard Maya also crying.. I had scared the crap out of my poor sister. I heard my dad's footsteps race down the hallway, "Shhhhhh you need to calm down you are scaring your sister out. Not cool." This only made things worse... My mom attempted to sit me up, but her wrists couldn't take my weight. I wanted to get up I needed to get off my back, this just made me stress more. My mom then tried to sit down next to me and hold me. One thing she didn't know is that being held during a panic attack makes me feel trapped and suffocated. I pushed her away. She started to cry and repeatedly said, "You need to calm down. I don't know how to help you. How can I help you when you are like this?" As those words left her mouth, Cal entered the room and took control of the situation. At the time I had no idea what Cal said to my mom. I just knew that my mom left the room and allowed Cal to help me up and get seated on the couch with a box of saltines and pain pills in hand. I now know just how much Cal was taking care of not only me, but my whole family to get through this surgery recovery. After Cal had placed me on the couch he went to check on my Mom. He found her crying in my room.. He took her by the hand and said "I know how seeing her in pain breaks your heart. I know you want to do anything and everything you can to help her. I have felt this too before, but right now what she needs is me. I was there to take care of her after every surgery after you had to go back to work, remember? I got her. I can move her around without inflicting pain. I know what she needs when her pain is so high and her anxiety peaks. Do not think of yourself as less of a Mom just because you can't help her move around or calm her down. You do so much that I know she loves and appreciates. Jazzy wanted me to tell you to tell Peanut that she was in pain but is okay now. If she wants to see her I'm sure Jazzy would not mind explaining to her what happened. Or, her Dad. She is embarrassed when she doesn't need to worry about that." To this day, my Mom still remembers this night. It was the moment she realized that it was okay that her daughter needed someone else. It's also the moment she felt much gratitude that Cal was willing to sacrifice so much to help the family. You see, Cal had just started his summer internship. Due to covid, everything was remote so he set up his "office" in my room. Throughout the days he would work on his transcription analysis (some fancy genetic research for Loma Linda University) as I napped. Then, when I would wake up, he would close the laptop and resume nurse duties. He would also help keep Maya entertained and happy to try to distract her from seeing me in so much pain. The first week was spent mostly laying down or sitting cushioned by pillows on the couch. I would have to take breaks from sitting because it became very painful to support my neck. I would look at Cal and say, "I can't hold my head up anymore" and he would run over to get me comfy. Having the lie perfectly and evenly on your back is hard. I couldn't roll to one side or the other. No twisting or over-stretching of any muscle that would pull the tight areas around my surgery incision. So when I was trying to sleep or watch tv while laying down I could only turn my head slightly to the left. Too much and it would pull my scar and cause tremendous amounts of pain. So I would lay a bit diagonal on the couch. With how much I had to be moved throughout the day and night, my parents allowed Cal to sleep with me. That way it would be easier for me to ask for help. My mom was exhausted and needed to be there for my sister. Everyone had a "purpose" or "role". Mine was just to lay around and heal. TV and movies became the only source of distraction. I tended to re-watch many of my favorite shows for comfort, but that was no longer working. I needed real distraction. So, I took advantage of the different streaming sources available and found new shows. This helped for a while but as time went on it became more lonely, and more frustrating. I am inherently a social and active person. I did not want to just lay around all day in pain. I needed a change. Luckily my best friend was in town for the summer. Mika is like the same-age sister I never had. She knew that I wasn't on my phone much because holding my phone up would make my inflammation spike. So, she decided to come to visit and keep me company. It was now, June 23, 2020 (5 days post-op). I began to grow more and more curious about what my scar looked like under the butterfly strips. A slight rash also began to irritate the incision site. I notified my surgeon and was told to put on anti-itch cream for allergies. Remember the gnarly rash I got during surgery 2? Well, I guess my skin does like medical adhesive glue or bandages, haha. Mika would help me whenever Cal couldn't. I remember one really funny moment. Mika and I were sitting on the couch joking around with my mom and watching a movie. Cal, Maya, and my mom were at the dinner table working remotely. I had been laying down for at least 30 minutes. My back began to ache and I needed to get up, go for a walk, stretch and maybe take some painkillers. All I did was slightly turn and lift my head just enough to peek over the couch cushion. Without any words spoken between me and Cal, he knew what I needed right away. He jumped out of his chair and went searching for the essentials. Mika fumbled around on the couch into a comfier position. Cal then appeared above me with Gatorade, pain pills, and an ice pack in hand. I hadn't even noticed that he had even left his chai. "Ready?" he asked. I nodded. Mika grabs my leg and says, "Wait, I can help. I want to help. Jazz why didn't u tell me u needed to get up?". I looked at both of them surprised and said, "I literally just thought about getting up and then Cal showed up so haha it's okay Mika". In a teasing manner, Mika slapped Cal's arm and gave him the come on dude look on her face. I felt so supported. It was also the moment I realized how synced up Cal and I were during that week. "Haha, sorry Mika I just have an internal clock now for her patterns. I figured she had been laying down for 30 mins and that has been her limit for now." Having Mika around made me feel more normal. My mood picked up and once again I had hope that I was going to be fine and come out better. I was no longer stuck with my own thoughts, focusing only on the throbbing inflammation and sharp nerve tingles down my arm. Mika also knows how to get me to laugh, and no lie this was an essential diaphragm training program I never knew I needed. Yes, I had to relearn how to normally breathe, but I also had to learn how to inhale, sip, cough, yawn, hiccup, and talk without causing immediate pain around my surgery site. So all the laughing created a new muscle memory. I was a pro on the spirometer now. My chest didn't feel as tight and I was getting better at staying calm when my neck muscles would spasm. Tonight would be the night. I would try smoking for the first time since surgery. I wanted to get off the gabapentin and pain killer high dose regimen, the side effects were making things harder. Gabapentin kept me anxious and the vivid nightmares did not help me sleep. Plus, TMI time, but pushing was something that was very painful. Being bloated or constipated also felt terrible. (even with the stool softeners they gave me after surgery)The pressure from bloating on my right side made my upper thoracic back area pain worsen. So, I would try to start the ween-off process the next week. I grabbed my pen from my purse (my parents and sister went to the grocery store) and walked to the couch with Mika and Cal. Cal reminded me to go slow even though I was used to taking bit hits. I slowly inhaled for as long as I could and exhaled. Success! No coughing and it didn't hurt my lungs or scar. I instantly could feel my anxiety start to leave my body like steam from a hot cup of tea. Finally, a semblance of normalcy. By June 25, 2020, 7 days post-op. I was able to handle walking around more. I was also able to sit myself down from a standing position. I know that doesn't seem like much but it was a big deal. I didn't need guidance to safely and slowly plop on the couch without engaging my abs. I would set my own pillows up and ever so carefully bend my knees in a "squat" and fall back. And, I could also get up on my own. The inflammation of my right thoracic area was still high, but my left side felt pretty normal. So, I would rely only on my left arm and leg to bring myself from a seated to a standing position. From this tactic, I also realized that I could kind of roll on my left side and push with my left arm to get myself up from laying down. This had to be done very slowly and it didn't always work. Sometimes I couldn't bear twisting or overusing my neck muscles. On June 26, 2020, I was able to go to my first physical therapy appointment since surgery. I was very excited to get out of the house. Cal drove me to PT (since I was still taking painkillers) and anxiously waited in the car. Vicki was very pleased to see me able to move around. I explained to her that my pain had slowly been diminishing but that I was sleep deprived because I could not get more than 4 hours of sleep. We focused on manual massaging and gentle scraping of tight back muscles. I met with Dr. Lee on July 8, 2020, my official two-week post-op appointment. I had been in contact with him during those two weeks explaining to him how high my inflammation was. He stayed persistent with his response, "mild to high inflammation is normal". He then added, "give it time, the healing process will take up to 2-3 months". I remember telling him very clearly that I understood that, but that compared to the other surgeries my inflammation was only getting worse, not better. He advised me of the following (all which were obvious except one) 1. limit all activities of R arm 2. no resistance training until 5-8 weeks post op 3. no weight bearing over 10lbs until after 8 weeks 4. (and this one stung because it gave me hope) can resume softball in 2-3 months. I then asked a very important question, "How is Kaitlyn healing after her bilateral TOS resection?". "She is progressing very well. She is back to working out, the pain is minimal, no inflammation, and she is starting to train for rowing in PT. Great. A note from the Author: *p.s. jumping ahead a bit in the story, but I can't help but comment on my feelings while writing this blog post. there isn't a day that goes by that I don't think about the panic attacks and sheer trauma I relive whenever I close my eyes and chest/rib pain is high. I wake up from sleep hyperventilating forgetting that I have to pull from my diagram and not my chest/neck muscles. Medical trauma is real. Don't let anyone tell you otherwise." -love jaz Good Memories from those weeks: Interested in what all those xrays showed? Little disclaimer for later on in my journey, I was NEVER told about something shown.. can you guess what by looking at these? Well, if you guess an elevated diaphragm, then you are correct. Another thing I wasn't told about during surgery was the Dr. having to collapse my left lung. These two things were not huge red flags at the time for the Dr. Just wait till later on...

things are starting to make a bit more sense... I think Oh, where to begin.... Well, I guess it's easiest to start at the beginning of the lockdown. Yep, remember when we all had to stay trapped in our houses to not get covid? Well, for a young adult suffering from chronic pain, this made me stir crazy. Especially one who was a closeted stoner. Yes, I had classes online which kept me distracted for a bit but after that, all I could do was sit around watching tv in pain. My dad has always been the kind of person to not fall into a lazy pattern, and he tends to project this onto the rest of the family. So, our mental health breaks during lockdown consisted of many walks around our local park trails. These were nice but, still very hard to keep up with. After all, it was my only chance to have some semblance of privacy to smoke if I stayed home rather than joining them night after night. It was becoming harder and harder to manage my pain with every member of my family, especially my little sister at home 24/7. So, I decided to start a little "workout" routine for myself. It consisted of many many therapy exercises for my neck, shoulder, and abs. Before leaving Redlands and Loma Linda, Clayton (my PT) suggested that I get the rest of me as strong as possible before possibly needing another procedure done. Unlike my other pain symptoms, my new ones were harder to link to a diagnosis and a plan of "attack". It gave me time to focus on my relationship with my body. Due to my lack of energy (to push through the pain ) after a full day of classes working out was just not possible. Not to mention, I didn't have a stationary bike, the only way I could endure cardio, at my parents' home. So, I decided I would buy myself a bike. It would be my time to go outside (safely), get in some cardio, and smoke as much as I needed. Regular classes would be over soon and May Term wouldn't be too hard, especially online. But, since I would still need to be able to type, I wasn't able to bike as much as I wanted. Instead, I had to focus on strengthening my core, something that did not increase my inflammation as much as cardio. For this, I bought a yoga ball to help release the pressure on my neck and cervical spine. I would let my spine decompress and would wait until the spazzing in my shoulder and mid-back subsided so I could do some modified crunches. The living room of my parents' house became my physical therapy setup. My bands were tied to the doorknob to do my shoulder and elbow exercises, right across from the mirror displayed on the dining room wall so I could catch myself engaging the incorrect muscles. This was something that Clayton wanted me to continue working on while I was home over the summer. So, I took it to heart and got to work. When ALL classes were finally done, the lockdown actually wasn't too terrible, at first. I would wake'n bake, do some yoga/stretching, and then if I felt up for it a bike ride. Since I wasn't in school anymore, my body had the ability the fully shut down for two weeks. When it came back to life, I felt rejuvenated. Going on different trails at the park near my parent's house became my time for privacy. Yes, privacy to smoke but also just for some plain old privacy haha. Lockdown meant being at home with my whole family day in and day out. Even the weekly doctor's appointments became exciting. Leaving the house for appointments was one of the few "essential" reasons that allowed for a person to "break lockdown". I continued with PT at Stanford with a therapist who was knowledgeable about thoracic outlet syndrome. Our main focus was to manually massage out knots in my neck, shoulders, and upper traps. With this, the hope was that my posture would also improve, hopefully relieving any further tension on my cervical spine. My next step was to see a surgeon whom Dr. Kamal referred me to and man was I intrigued. I would finally get my answer to my pain. I met with Dr. Lee on May 27, 2020. The first thing I had to do was go through an extensive covid screening because remember the world was terrified of contracting coronavirus. I was too, due to my asthma and inflammation issues already, getting sick would make everything ten times worse. So, I never complained about masking up, testing, and social distancing. Well, once I was cleared I entered the main hospital building and took the elevator to the vascular center. I had to undergo an arterial duplex before meeting Dr. Lee. This was a new test for me. It began with the nurse patching me up with sensors. These are called PPG sensors which detect volumetric changes in blood in the peripheral circulation. They had me lie down initially to do an arterial duplex ultrasound, which uses sound waves to create a color map of the arteries in my arms to identify the narrowing of vessels. The sound was actually very pleasant. It was easy to hear the differences when the ultrasound inched along both arms, allowing me to compare and analyze on my own. The next step was for me to stand up and hold my arms in various positions. They specifically asked me to do movements that made my pain spike, aka the nerve tingles feeling more sensitive. This part had no sound. The technician simply looked at the screen that showed the various wavelengths of blood flow restriction. Then, I had to do a chest x-ray. All these tests would be discussed in my appointment shortly... I was both nervous and excited to get some answers. I wanted this to be the answer, to feel some relief... I thought I was going crazy thinking that something was wrong.. that something deeper... meaning something structurally wrong. And there it was, my confirmation... neurogenic thoracic outlet syndrome. OH, and my x-ray? I unfortunately never received a copy of it, but he did inform me that it indeed showed a deformed first rib. Essentially instead of it facing and curving outward the way it should, my rib was flipped up and the curve rested right on top of my trap. He explained to me that he believed the rib was putting pressure on the nerve center in my shoulder, aka the brachial plexus. My head was spinning. I knew there was a slight chance that this would be the reason for my pain but you don't expect to learn about a deformed rib before your 21st birthday... How did this go unnoticed & undiagnosed for so long? He then told me that the initial injury of my full body weight and momentum on my wrist and shoulder... could have caused some real damage to my brachial plexus. Add that plus the deformed rib that had already been putting pressure there, and you get the perfect recipe for disaster. Everything started to make more and more sense... The rotator cuff tendinitis that I had at age 12... the dislocations that occurred while playing basketball... All this points to a structural abnormality. But, how the hell was any doctor expected to piece all that together? Luckily, Dr. Lee did this... but man would have been nice to know sooner rather than later. Maybe I wouldn't have played both basketball and softball at the same time growing up. Even playing soccer, I was a goalie because I had the best hand-eye coordination to block kicks... but I was also able to throw the ball with accuracy to open teammates. All of those things made my rib pressure increase at a rapid rate. A perfect recipe for neuropathic and muscular chronic pain. My next decision would big a big one... Do I have yet another invasive surgery? I was very nervous... this surgery felt scarier than the others.. Maybe because instead of just "fixing" something, it would be removing it. Dr. Lee felt my anxiety spike mid-appointment. I think by the look on my face he finally said, "okay, we do not have to decide anything right now. I'll put you in contact with another TOS patient athlete to ask as many questions about the procedure and the recovery. After speaking with her and your parents, let me know if you have more questions." Kaitlyn was the patient I was put in contact with. She was a student-athlete in her junior year of college, same as me... this immediately made me feel more comfortable talking. We agreed to facetime since typing and texting were very painful for both of us. Kaitlin was a rower for Stanford in hopes of achieving her goal of participating in the Olympics. Prior to the pandemic hitting, she was actually eligible to play in the Tokyo 2020 games, but you know how that went.. the whole world shut down! Unlike me, she experienced pain on both sides of her neck and had tingles/blood loss down both arms. So, she was going to have both sides down about a month apart. She shared with me that she too had spoken to a baseball player at Stanford who had undergone the same surgery two weeks earlier. He had explained the feeling post-surgery in extreme detail. We were both very grateful for this since Dr. Lee did not mention some vital bits of information. Yes, my rib was going to be resected... but how much? from what angle? Kaitlin began by saying, "okay the only thing he told me that freaked me out was that he woke up with a drain tube and sac filtering out fluid and blood from the lungs. They might even have to collapse a lung during surgery" We both squirmed at the idea of waking up with a tube... I asked her "how long does the tube drain need to be in there?" "Only 24 hours", she said. We continued talking about our similar pain experiences... rotator cuff tendinitis at a young age... the clicking and popping with shoulder pain...and with a wish of good luck to Kaitlin, we hung up. She reached out two weeks later with a picture of her with a thumbs-up post-surgery while in the hospital. She then called and said, "well you can definitely feel the clicking of the tube collecting fluid... and you feel like you got hit by a train.. but no nerve pain down my arm!" I was relieved to hear that her surgery went well and that her pain could be managed by the nurses post-surgery. "The only downside is I am alone in the hospital throughout the whole process. With the pandemic, no visitors are allowed, especially overnight. So bring your laptop and headphones for movie distractions... sleeping was a bit hard." Crap. Alone for surgery? This made me a bit nervous but I had to remind myself that it was only one night. Mom and Cal would pick me up as soon as they could the next morning..... maybe I could do this. Maybe this is the best option for me to hopefully lead a pain-free, more "normal" life. Surgery #4 was going to happen, even if my parents did express major concern over such an invasive surgery... but at the end of the day, they trusted me to know what was best for my future. I knew in my gut that something else, something deeper was wrong, and alas I was right. I had to fully trust that voice inside me saying "keep fighting against the pain".

It was now October 15, 2019. The appointment to review my MRI report and images. Ever since the last one I was eager to understand the truth behind my pain. The MRI itself just made me more anxious. Since it was focused on my cervical spine, I had to lay on the table in a head cage. Staying still for long periods of time was impossible for my neck and shoulder. They needed to give me muscle relaxants in order to ease my slight claustrophobia in the head cage. I had to stay oh so still for 30 mins as the machine caught all angles needed. Flash forward to 11/12/19 and I was back with Dr. Riedel reviewing the MRI images. He read off the report: "straightening of the cervical spine possibly related to muscle spasms/strain. multilevel degenerative disc disease without significant spinal canal stenosis and neural foraminal narrowing" Okay so no wonder my neck hurt so damn much. I had lost the natural curve of the cervical spine. Dr. Riedel grew more concerned about the tenderness about inflammation surrounding my neck/ shoulder and arm. So he decided to ask another surgeon, Dr. Wongworat (my first dr if you remember ) for his opinion. In the meantime, more anti-inflammatories, more gabapentin, and physical therapy. On 11/20/19 I saw Dr. W. He examined my wrist and elbow first. He wanted to ensure that they both continued to show signs of stability and recovery. He mainly noted that both were indeed stable but had an increased numbness/loss of sensation around both scars and my fingers. Then he moved to my neck and shoulder. I could barely tolerate any pressure on my right trap and its surrounding areas. "Hmmm, I'm noticing a pattern of tenderness and irritation around the brachial plexus. A common issue for those who have something called thoracic outlet syndrome. Which does tend to be very rare. You need to see a thoracic surgeon for a proper diagnosis. For now, continue with massage therapy, strengthening exercises, and pain management. Ask pain management for a referral for someone for you to see" I went home and the first thing I did was finally do some research on whatever the hell thoracic outlet syndrome is. I wanted to be prepared with a list of questions for my next appointment. This is what I found (thanks to MayoClinic) : "Thoracic outlet syndrome (TOS) is a group of disorders that occur when blood vessels or nerves in the space between your collarbone and your first rib (thoracic outlet) are compressed. This can cause shoulder and neck pain and numbness in your fingers. Common causes of thoracic outlet syndrome include physical trauma from a car accident, repetitive injuries from job- or sports-related activities, certain anatomical defects (such as having an extra rib), and pregnancy." The next thing I did was look at which criteria fit best. No car accident, no pregnancy, so that left anatomical defect and a sports-related injury. Well, I guess an X-ray would show anatomical differences. (question 1) Or maybe some other imaging? Another MRI? (question 2) Did the initial injury of my momentum and weight falling onto my extended wrist and shoulder cause the compression?? (question 3). I continued with research.... "There are three general types of thoracic outlet syndrome: Neurogenic (neurologic) thoracic outlet syndrome. This most common type of thoracic outlet syndrome is characterized by compression of the brachial plexus. The brachial plexus is a network of nerves that come from your spinal cord and control muscle movements and sensation in your shoulder, arm and hand. Venous thoracic outlet syndrome. This type of thoracic outlet syndrome occurs when one or more of the veins under the collarbone (clavicle) are compressed, resulting in blood clots. Arterial thoracic outlet syndrome. This is the least common type of TOS. It occurs when one of the arteries under the collarbone is compressed, resulting in bulging of the artery, also known as an aneurysm." "When nerves are compressed, signs and symptoms of neurogenic thoracic outlet syndrome include: Numbness or tingling in your arm or fingers Pain or aches in your neck, shoulder, arm or hand Weakening grip" Okay, I think I have neurogenic TOS. How to confirm? (question 4) Right as I felt prepared for my next appointment with Dr. Cesar, chaos began to erupt around the world. Coronavirus became the main medical emergency. Hospitals were overfilled with people of various ages needing ventilators. It spread very easily and reached the United States at a fast rate. it went from being a scary health phenomenon in Asia to schools across the globe having to shut down and commence "social distancing". In a span of a week, students at the University of Redlands were expected to pack their dorms and move back home to quarantine at home. I felt like it was a real-life version of the movie Contagion.... Okay, going home.... halfway through the second semester. This not only disrupted my academic career but forced me to become my own medical secretary as well. The added stress of having to transfer all my medical records to my home hospital, Stanford, took over my mind. Between packing all my crap from my dorm to hopefully fit inside of Cal's car with all his stuff... I would be on the phone with Loma Linda and Stanford hoping to expedite the process of getting referrals in place to switch my health care team. Why this is all on the patient is beyond me. I had to learn so much about insurance policies and hospital politics. I really wish doctors would just pick up the phone to speak about handing over a case because the reality is that the "interesting pain case" is actually a young woman desperate to find answers to cure her pain. And in the midst of covid.... I became a less urgent medical issue, a case file moving from department to department and hospital to hospital. Regardless of my frustration, I had to get this done within the week. I didn't have a choice, I had to move back to the Bay Area. After what felt like 3 full days being stuck on the phone... it FINALLY happened. All my medical records were transferred to Stanford. AND I had an appointment with a dr who was familiar with thoracic outlet syndrome. I started to feel more hopeful... I mean, it's Stanford... they should be able to figure out my pain. Cal and I crammed all our stuff into the car and made our way North, back towards home, and hopefully a new chance to be pain-free.

When you hear hoof beats, you look for horses, not zebras. So, it was time to give pain management a real try. I wasn't sure what to expect honestly. I had already gone to a pain management dr before, but just for medication discussions, not diagnostic. See, before, when I had gone they looked at my scars and my chart and knew what the issue was right away. Now, I was going in as a big question mark. It was no longer just my elbow and hand that were hurting. It was my whole right hand, arm, elbow, shoulder, neck, and now mid-scap/back. I had never experienced pain like this before. It felt like burning, stabbing, nerve pain shooting up and down my right side. My arm was even more disabled than before. Not to mention the terrible throbbing that followed muscle tightness..the inevitable inflammation. But see, that's the thing. My surgeon no longer knew what was causing my muscles to grow tight, weak, and inflamed. So, I had lots of questions for Dr. Cesar. Dr. Cesar had a thick Eastern European accent. It made it hard to completely understand him when I had spoken to him on the phone about medications in the past. This made me nervous... I wanted to feel confident and heard. Just like every doctor's appointment, it started with me filling out pages and pages of new patient intake forms. Something that I was growing to hate more and more. But, this set of forms had something new. It's something that I like to call an ouch report. Finally, a place for me to try to explain the specific pain sensations. I was amazed at the level of detail I could put into this one little chart. And to think I was going to also get physically examined. So as you can imagine, my chart was filled with all kinds of ticks, dots, xs, and circles. To my surprise, the doctor wanted to hear even MORE detail about each of those markings. I went on to explain how sensitive to temperature changes I was, how weak/shaky was getting despite constant therapy, and last but not least, the burning/stabbing nerve pain that radiated down my neck and arm. He asked a series of questions that I had never considered before: 1. "Have you noticed color change on the areas of pain?" "Like purple coloring or transparency of veins?" yes, on my right hand & forearm. 2. "Have you noticed any hair growth change?" ummmm, my hair falls out very easily, more hair on hand/ arm due to casting. 3. "Are you sweating more than usual?" no, in fact, I always feel cold. 4. "How about certain textures or touch? How do these affect your pain?" slight touch on my arm send a sharp pain... so kinda that? I also can't wear any sweaters or shirts that are scratchy, it makes my nerve pain worse. The next thing he said was "hmmm, have you heard of CRPS, aka complex regional pain syndrome?" I shook my head no. He went on to explain, " Complex regional pain syndrome (CRPS) usually affects the limbs, after injury or surgery. The main symptoms are severe pain, swelling, loss of range of motion, temperature changes, and changes in the skin." I looked at Cal (yes he came with me hehe ) in shock. Dr. Cesar continued, "You seem to hit a lot of those symptoms.. I would like to put you on some different kinds of medication and physical therapy. I would also like you to get a cervical MRI to check for something called TOS, or thoracic outlet syndrome." My jaw was still on the floor as he continued to talk. "Basically, it's when you have an extra cervical rib or a funky first rib putting pressure on nerves or blood flow down to your arm. It can also cause "crowding" discomfort and pain in your neck. It is rare though and CRPS is more likely." As we drove back to campus I sat there still shocked. The only thing I could think to do was cry. Not out of sadness, but more so frustration. I wanted an answer now. I wanted the fix to my pain.... I needed it. So recap: plan for diagnosis! Step One: get cervical spine MRI imaging done Step Two: physical therapy, myofascial release/ massages, "strengthening" (yoga ball and a 2lb weight to keep my back and other shoulder strong since I relied on it) Step Three: More Meds (gabapentin 1200 mg & baclofen 80 mg per day & tramadol 50mg as needed) Step Four: Find patience

grief is grief no matter how its expressed. A new feeling started to boil up inside of me. It started with a lump in my throat and a sniffle. When a glass of water or a rip from my dab pen didn't make these subside, it finally exploded.... I remember the night it began to creep in. It was a night just like any other. I had finished my work for the night and was ready for some dinner. I got the nightly, "leaving the field now, see you at commons (our university cafe)" from Cal. As I arrived at the commons, the entire baseball team followed. They had just finished up with practices for the day, fresh out of practice. So naturally, the topic of conversation was baseball. It used to NEVER annoy me. In fact, it was something I loved, being able to share my passion for the game. But, the lump in my throat, sped-up heart palpitations, and shortness of breath took over. Instead of being my usual outgoing self, I went quiet. I went on my phone to make it look as though I was unbothered for the rest of dinner. I then followed with a, " I gotta get my overnight bag so catch up with you later, hun" Cal saw right through my act. From the minute I walked into his apartment, he knew I was bothered by something. I told him my usual, " I'm fine, just in pain and anxious". He responded with, "Okay, but it just feels like you are sad or mad about something. Just wanted to check in". I caved and spit out the feeling I was struggling with, resentment & frustration rolled into one mean ball. I felt gross for feeling resentment towards Cal for playing baseball, having teammates, and most importantly expressing his love for the game so often. I incessantly apologized for even bringing it up. It was hard for me to admit just how pissed off the universe or whatever higher power took the sport away from me. It was even harder to admit that I was grieving. I thought about missing going to practice, being a part of a team, and even just throwing every day. Not even mentioning, how it felt to sit in the stands and cheer him on as a supportive girlfriend. I didn't have anything in my life that I felt ultra-passionate about. Well, yes I'm very passionate about Cal, but, the only thing I could see when I looked at him was a committed college athlete, something I could no longer share with him. And when he was at practice or at games on the weekend, I sat in my dorm room trying not to think about how I too should be at games... My emotions towards baseball/softball became a vicious cycle of trauma. Then, on this night of bubbling anxiety, while Cal and I lay in bed trying to sleep... I told him how sorry I was for taking my stages of grief out on him recently. Cal being Cal said, "You don't need to apologize. You're going through a hard time love, rebuilding your identity without softball while still trying to figure out your pain. It's a lot to put on one person." I vented how stressful it had been having to be my own medical secretary and advocate in order to find a Dr. to solve my pain. Then Cal hit the trigger I did not know I had with a single question, "You can see all the doctors but What if the pain doesn't go away?" *BOOM *1st Panic Attack Ever..... I remember this clearly... those words ringing in my head on a loop... what if the pain doesn't get better... can't get better... then it led me straight to... what if I don't get better?.. it was something I never thought possible before that moment. But I quickly realized it was necessary to think about it. 30 mins later.....* and a bong rip or two later...I took a deep breath and went back to bed. I asked Cal if we could continue the conversation later that day (cuz yes it was 2 am). Looking back on this moment I remember feeling both terrified and alone. But, now I see that I really was never alone through any of it. I am glad that Cal was the one to pose the question of not getting better. It was something that he knew I needed to reflect on. How? Cuz he knew me. Not just softball jazzy, but as a whole person who should keep looking towards the future... regardless of what's to come ahead cuz I could handle it. But most importantly because I deserved some relief... Even if I was strong. I had gone through 3 invasive surgeries already... Talking this out with him was ultimately the way I got my spark back. See throughout every step of this process I always had something to look forward to. Getting better was just getting healthy enough to go back to softball. So, since I hadn't "gotten better" hearing chronic pain as a diagnosis made me feel like I had failed. Here's a better way to explain it, an example! When I got hurt initially, I knew to look for a dr to fix my torn ligament. I knew to get Mri imaging, get surgery, go to Pt, and even how to best manage my hand/arm pain. I had a "system" in place so to speak. But, now with 3 surgeries not making my pain go away... and in some ways, make it worse/change... I felt utterly lost. However, after Cal brought up the possibility of accepting chronic pain as my next diagnosis, I realized that part of my resentment towards him and that question of "what if I don't get better" was my inner gut telling me that something was still wrong. Each surgery should have made my pain go away. My surgeon, Dr. Riedel was sure of that. He expected me to come out of surgery swinging and throwing... going back to softball, just like other patients had. But even he was now stumped... Everyone wanted me to accept "pain management patient" as my diagnosis. Something had to be causing my pain. If it wasn't my nerve moving... and my neck and shoulder now feeling crowded... why not look there a little closer...

It was the first time that a new semester felt completely fresh. I was starting a new chapter of my life, one as a retired athlete. And... as a bonus, I was getting a new roommate! No more bad vibes while going through a bad situation. Of course, I was super excited to have someone else move in, but because of how badly things blew up with my last one... I was also nervous. See, this is how it went down. Basically, we each had meetings with our RA about why living together was not working. In my meeting, I explained my issues related to my pain, and the state of constant disorder on her side, Hanna and Elise explained their issues and we sat in silence. Our RA told us that she understood our complaints but had one issue to speak with me about in regards to my pain. I looked at my roommates and said "tell me and I will tell them anyways so they are not leaving the room". The next words blew our minds... she told me that our ex-roomie had told her that I was an addicted drug abuser:) My jaw dropped and I started laughing crying. My RA was well aware of my health issues and knew I was not a drug abuser, nonetheless, she had to check my room due to school policy. We walked over and I showed her my medicine cabinet (the one my ex-roommate never had any right to look through to detail my meds to our RA). Then, I showed her that I did have a pen but also had a Dr's note recommending the use of cannabis products, something my judgey "friend" failed to know, but alas her motive was to get me in some sort of trouble to make it seem like she left for a valid reason. At the end of the petty schemes, I came out better than ever. The school backed me in the living situation and granted me the decision of who could move in. Everyone, meet Nat, the friend, turned roomie bestie, who saved my mental health that second semester of my junior year. You see, we both stopped playing our sports that year. Which meant this spring semester was the first time without sports taking up hours and hours of our lives. It was going to be an adjustment period, a time to really focus on what would make each of us happy. Our room became our sanctuary. It was the place we felt we could break down all our walls and just be. If we felt like our anxiety or depression was at a low point and needed a night to just zone out and be alone together. Sometimes this looked like each of us watching our tv shows cuddled up in our individual beds, headphones on, and the dab pen getting tossed between us. Nat and I knew of each other before becoming roommates but didn't really know each other. Our only vote of confidence was Elise. She was both our friend and thought our vibes would match up. Well, You did it, Elise! And boy am I glad. We all three began to go to dinner together once or twice a week, mandatory, "our roomie dinners". Shortly after Nat moved in, she met her boyfriend. It was the balance we both needed in our lives. It gave her a person to lean on, and it forced me to get out and find new passions around campus. We still wanted to prioritize our own roomie time so we would schedule "sleepovers" with each other. I know, it seems odd to do a sleepover with a roommate, but when you sleep at your significant other's a lot, our room tended to be empty. Our planned nights of quality time together became a great mental health check-in for both of us. Nat knew I didn't love talking constantly about my pain, but she still had a knack for getting me to truly open up about how I was feeling. And boy, did I need to vent. Before going back to school I had a cervical spine MRI done and the results were intriguing. The summary at the bottom of the report read, " Straightening of the cervical spine possibly related to muscle spams/strain. Multilevel degenerative disc disease without significant spinal canal stenosis and neural foraminal narrowing as detailed. " So, I wasn't going crazy. My neck pain was validated, something was structurally off causing the surrounding nerves to get impinged. Great news right? Well, kind of. It leads to me having to have another EMG test done. But, this time it was done near school, so I had Cal and my roomies to keep me upbeat. The test was scheduled for Feb 3, 2020, and the follow-up to review the results with Dr. Wongworawat and Dr. Riedel was scheduled for three days later. Yes, I needed support after going through the painful exam, but I really needed to feel love after hearing the words, "this is a relatively normal EMG". This crushed me. I felt like my own body was fighting against me finding answers and ultimately proper treatment for my pain. My neck constantly felt like it was crowded and pinching everything. Both my doctors believed me when I said I was still in pain but they shrugged and said "I don't know what else could be done in our clinic", this is more of a pain management case now. Pain management? It sounded like a cop-out, an easy way to push patients towards medicating rather than diagnosing. But, I knew I had to try... what if this Dr knew something I didn't? So... what better way to cope after a shitty appointment? Sleepover and Baja Blasts! Yep, Nat and I watched all the Austin Power movies, smoked, and went on a midnight Taco Bell run. It was the best time during the worst of times.

I am not quitting... I am resigning. In fact, I am being forced to resign. So, really the "person" to blame is my arm. I tried everything possible to get back on the field. But, my arm said not in this life. This was the hardest decision for me. On one hand, the decision had already been made. I was not getting better, and the doctors told me that my softball career was over. On the other hand, coach told me I could fill in the team manager or peer coach of some sort to stay a part of the team but more importantly, around the sport he knew I loved so much. But, it had become torture to be around any of it. Seeing teammates taking their position on the team for granted, and being judged for "slacking off" or "making excuses" when in reality I was simply prioritizing my health. Plus, let's be honest, who the heck wants to spend hours watching people doing what you can't? And, let's not forget, my "wonderful" roommate and her constant complaining about having to go to practice, not getting enough playing time, having to go workouts, team bonding, literally everything about being a college student-athlete. My dream since I was 8. So, naturally, I kept this decision close to my heart. My other roommates knew, my advisor knew, coach knew and Cal knew. That's it. I remember telling the team like it was yesterday..... First, I went over to coach's office before afternoon dyfi. We sat down and as I fiddled with my wrist brace slowly said, "I think its time for me to hang up my cleats... my pain is not getting better and my surgeon does not think my elbow could ever handle a throwing motion again." That's all I could get out before I started to cry. Coach handed me a tissue and said " Kiddo I didn't know you when you got hurt or the kind of athlete you were. But since coming here I do know one thing. You are a college softball player at heart. Even though I wasn't around your freshman year, I've learned how hard you tried to continue to be a good teammate, athlete, and student throughout all the crap life has thrown at you since coming down here. Now, it's time to put all your effort into one thing. You! It might not seem like it now, but this can be an exciting thing. Find out what else sparks your passion. Dive headfirst into your career. And most importantly, find what makes you happy and healthy, cuz at the end of the day THAT is what really matters". And with that, we walked to the track (where the team warmed up for dyfi) and coach called everyone over. While crying and trying to seem upbeat I told the team that my health wasn't getting better and the possibility of needing more surgeries. It ended in a team hug, some sweet words from friends on the team, and then it was over. As I walked back to my dorm I tried my hardest to keep it together. I got into my room, grabbed my car keys, and walked to the car. I drove out to a nearby park and stayed in the car. Right as the key came out of the ignition, the tears flowed incessantly. it felt like I had lost someone i loved.... but it was heightened. I felt like I lost myself. Who the hell was I without softball? I'm not an athlete anymore. It had been a core part of my identity since I was 6 years old. I suddenly had too much time during the day and most of that time was spent in class or alone in my room while my roommate was at practice. And yet, with all the time... nothing piqued my interest.... and I felt desperate for distraction...

living with roommates is a hard adjustment for many, but learning to accommodate is key. I'm an outgoing person. I love to be with people and socialize. And yes, even when my pain is high I feel the need to be around people. Being alone when in bad pain only amplified the stabbing pains and aches. And, of course when it got too much to handle I simply wanted to crawl in bed, cuddle and watch tv. Laying down became the only way to get my neck to calm down. The rest of the time it felt too hard to hold my head up. The constant shrugging tension radiated across my back and down my arm. I didn't know what was wrong. Why did so much more hurt? Regardless of my inner thoughts and anxieties, I seem to always put on a smile and crack a joke. It was my mask. My way to cope with the pain, "to fake it till you make it". Yet another lesson I learned from softball. But, when the mask comes off? I'm a very emotional person. I push things down and then once they boil up enough it explodes out. I kept pushing down the anxiety I felt about never being able to play again, about why the pain was getting worse, and last, but not least, keeping up with school while in extreme pain. For the first time in college, I decided to live with a teammate. I thought it would be a great way to make me still feel a part of the team but also get closer to my good friend. My other two roomies were girls I had lived with in my previous years with ease. Oh, yea, plus our emotional support cat, Iris. Iris actually belonged to my roomie Hanna who suffers from Ehlers-Danlos Syndrome. A chronic illness that attacks the connective tissue everywhere. This inherited disorder affected her daily and even quality of life. She dealt with countless symptoms that not many understood. But, we as her roommates understood the privacy, space, and even need for support when we got to do things she could never. The new roommate addition was well aware of all of this. And yet, it was not a good fit for many reasons. As you remember, sleep is very difficult for me. The nerve pain and inflammation kept me tossing and turning. Switching between medication and my herbal remedy was the only way I was able to calm my body down to get some hours of rejuvenation and rest. Even though I never slept well, I always prioritized school. So, if I had an essay that pre-surgery/pre-injury would have been done in 4 hours. Instead, it would take me 6-9 hours spread out over two, sometimes three days depending on my hand strength, pain and the extension a professor would grant me. I would have to work in sporadic time periods, which went against my own writing process, but it was the only way to get all of my course work done on time. To sum it up, I was not on a regular college student schedule. Meaning, I couldn't have the same routine over and over. At the start of the semester, I slept in the dorm and tried to balance time between coursework, social time, softball practice, and my pain. Sleeping in the dorm might be a weird thing to point out, but it is important. See, I usually would sleep with Cal during my first two years. My freshman year, was a time period when I really needed support, I had just gotten hurt, and he was the only one who gave me support and advice unconditionally. And, I needed to keep my arm elevated at ALL times, so cuddles, me as big spoon, duh. Flash forward to now my junior year, I had spent the last summer sleeping alone and feeling more independent. Or more accurately, more able to handle the anxiety and pain at night by myself. So, I was not planning on sleeping over with him most nights like in past years. Nope, I told my roommate, who was a very close friend at the time, to help me with this and enjoy my own time more. It felt great to feel heard until I wasn't. It all started with the AC. Attending school in Redlands means hot and dry weather. Surprise! Living in a desert is hot. To say my roommate was not accommodated to being in the heat at all is an understatement. The AC unit in our room ran 24/7 ranging from low 60 to 70 degrees. To her defense, the vent was located on an extended wall above her bed, and guess where it pointed? Straight on my bed. Why not just switch beds? Well, I had to have a wall on my left and not a wall or window on my right. I could not risk hitting my elbow or wrist on any hard surfaces at night. After the first week or two of living together, every night the AC would be blasting. And every night I would wake up in a panic, tears in my shut eyes, my arm and fingers purple, stiff, and shaky. Was it the way I was sleeping? Maybe I accidentally rolled onto it. It wasn't until I got out of bed one night to pee that I instantly realized the issue. Out there, out from under my notoriously warm blankets, I froze. The room felt like a freezer. I went to the bathroom and quickly ran into bed and sent a message to my dr that instant at 3:45 Am: "Dr. Riedel. Does a cold room affect nerves the same way as being in the cold outside? The Ac runs in my dorm and I'm noticing the same effects I would feel being out early in the morning for dyfi. I can't sleep without waking up in pain and purple". At 7:45 AM, I hear a ping from my phone, "Jaz, yes. Advise you to not sleep with AC." The next day I spoke to her and it didn't go well. My pain didn't matter, her sleep was more important due to her own personal issues that I was aware and considerate of. So, I went back to sleeping over with Cal. That also caused issues of me not being around enough, or prioritizing him and his friends. So, I tried to keep it more balanced. I asked my parents for advice and they bought me a heated blanket. Even while under the covers & my blanket, my neck would twinge, sending stabbing nerve pains down my arm. After all, I could hide my arm from the AC, but not my neck... and as that became more of an issue so did our living situation. During the beginning months of school, my prognosis worsened. I wasn't getting better anymore since my last surgery. The more doctor appointments I went to, the more real it was becoming. A life without softball. A possible life with unending pain. This is when my depression hit its peak. Not many people know this. Having to say goodbye to a dream is never easy, but saying goodbye to a piece of yourself feels impossible. And yet, it was the last decision I had to make... I barely talked to anyone about softball. Not even my roommate who was also a teammate. Our outlooks on the sport were different from the start so I knew her bias would greatly sway her advice. I kept my sadness hidden and tried to keep acting hopeful. I only let my walls down in front of Cal, Hanna, and Elise. But especially Hanna and Elise. See, Hanna understood the pain part of me and Elise saw the jock. It was a perfect balance. My other roomie Hanna, the one with EDS suffers from migraines almost every day. On top of this she deals with not sleeping through the night and as a result, relies heavily on random nap times. The other times she spends spreading her workload over a couple of hours. Our rooms were naturally quiet due to this schedule until she moved in. Elise got it. And even though she and Hanna were on different schedules since Elise played lacrosse for the school, she was EXTRA considerate of how it could possibly affect Hanna. So we refrained from playing loud tv and music. Even loud phone calls would keep Hanna from sleeping, studying, and relaxing after a day full of pain. And those phone calls, came from my side of the wall, from our new addition. These phone calls often consisted of complaints about going to practice or out with friends, the extreme stress of school, and whatever minor/natural ailment was occurring. From an outside perspective, these are all normal things to discuss with people. This I agree with 100%. However, from an inside perspective (the one she realistically had living with two people who have a chronic illness), these complaints were exhausting to listen to day after day. I call them complaints rather than topics of conversation because that's what they sound like to someone like me and Hanna. Hearing someone complain about GETTING and being ABLE to do practice, school, and go to lots of social activities breaks my heart. I wish I could over-exert myself physically. I wish I could sit for hours and hours studying in the library. I wish I could go out and dance at a party like a real college student. But that's not our reality. Everything we do has to be a conscious decision, weighing out all the possible pros and cons. At the end of the day, I can't choose to do anything. My body and the pain it's experiencing guide my life. The little times I would go out with friends, it would get thrown back in my face. "If you can do that you should be able to do x, y & z" Or the times I would be able to fake feeling like a softball player again, I was reminded that I was the "real" deal. That my experience as a student-athlete or more accurately someone who is injured was not taxing. This is what pushed Hanna and me over the edge. We saw and heard her truth. In an effort to smooth what I thought were miscommunications between my roommate and me, we met and spoke about our issues with living together. I expressed how hearing her complain about not wanting to go to practice, complain about playing softball for her dad's approval and pride (not her own), and lastly how she hated working out hurt me. It was making me feel like I was never doing the right thing or enough. It also broke my heart to hear that she didn't play college ball because she loved softball, but for the approval of an outside opinion. I worked so hard my entire life to get on a college roster, and yet here she was after walking on, taking it all for granted. I love softball and I cried over missing it and that part of myself every day during my junior year. I even got into small arguments with Cal about him talking about how happy he was to be back on the field for another year of baseball. She did not care. In fact, she told me that my and Hanna's injury and mood made her so anxious and that she needed me and Hanna to control it more. LOL She was well aware of both of our health histories prior to moving in. She was even asked by the school to sign a contract stating she understood Hanna's disability and her need for an ESA (the cat that she hated, but that's not my story to tell). And as for me, she was my close friend, someone who I had cried on the phone with telling them how tired I was of being in pain and away from softball. So, when I was called a drug abuser, pill popper, pot head, lazy, sensitive, and many other wonderfully stereotypic phrases for someone who is chronically ill, I had enough. The way a person copes with medical trauma should NEVER be judged. You never know when they are showing that they're vulnerable or they're a badass survivor. But always remember that either way they can be both.