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On Monday, I received a call from my doctor informing me that I have Crohn’s disease. Crohn’s disease is an autoimmune condition that affects the entire GI tract, from mouth to anus. Mine has progressed so my gallbladder has also been impacted. I was having a lot of abdominal pain, especially after eating. I was losing a lot of weight because I wasn’t eating due to pain and when I did eat I wasn’t digesting food or absorbing the nutrients from food properly. I will have to start on a biologic to suppress my immune system so it stops attacking my GI tract. This will be a completely new challenge for me but I feel like I have learned so much from my struggles with PCS that I can apply to Crohn’s. I know how to deal with pain. I know how to deal with setbacks. I know how to work around my limits but also with them. I am nervous about what this will mean for me moving forward, especially with COVID. I will be very much at risk for any pathogen, more so than I already am, due to the biologic.

It will be a learning experience for me to undergo this process but I know it will make me stronger yet more compassionate. I will be getting bloodwork done and then my doctor and I will discuss which biologic I will be using. We will also have to discuss a PICC line or port because I do not have many access points left for infusions every two weeks. This whole process would be much scarier if I hadn’t already overcome so much. This is just another unexpected turn my life has made and I have confidence that I will be able to handle this. Challenges have never frightened me and I firmly believe that this has happened for a reason. I do not have any idea what that reason is yet, it my take a really long time for me to understand that reason, but one day I believe I’ll have that aha moment.

I doubt that this is connected to my concussions but I honestly have no clue. We really do not know much about the long-term consequences of concussion holistically, especially in women. There is a connection between POTS and Crohn’s and POTS and MCAS and a connection between PCS and POTS. But I may be completely overreading into this. I am excited to start the biologic so I can achieve remission and hopefully be out of so much pain.

Part 1

I am obsessed with planners! My life kinda revolves around planners. For years, I have tried to search for the perfect planner and I have many times found one that is ALMOST perfect. So I decided to make my own planner template. So far, my DIY planner is a work in progress. But I definitely encourage you all to use planners. The proper planner has come in clutch for me so many times. I am not sure how I would function without it. As someone with PPCS, I will be living with my symptoms for the foreseeable future. This means that I need to find ways to manage my symptoms and have strategies to compensate for the deficits I have. Certain aspects of a planner really help me with that. I like to have a page with an hourly schedule, top priorities, assignments, and appointment reminders. I also have pages to keep track of due dates, a week at a glance, and a monthly calendar. I use stickers to emphasize important dates, such as exam days. I have included my templates as well as some I have found on other sites at the bottom of this post.

I also want to emphasize writing down goals in your planner. Writing down goals and steps to achieve them really helps you visualize what you want to accomplish. I have monthly goals in my planner as well. Being able to write down anything, including a goal, helps you remember it and thus making it more likely that you will achieve it!

In a few weeks I’ll turn 21. I have not been alive for very long, but the world I was born into was indeed confusing. I was born in June 1999, just six weeks after the massacre at Columbine High School. My first day of pre-school was September 11, 2001, the most devastating event to occur on US soil. My early childhood memories all consist of my parents and grandparents trying to adjust to live in a post-9/11 world. I was so young when 9/11 occurred that you may be wondering how it affects me. Although I do not have any clear memories of the day, I grew up watching the people I love heal and grow stronger from such a horrific event. There have been some articles circulating recently about how Gen Z has already had a lifetime of trauma, from 9/11, the 2008 recession, climate change, etc. I respect the feelings of those who have been traumatized, however I do not think these articles speak for all of my generation. Watching the people I love grow stronger from all these events has shaped me into who I am today. I learned how to be resilient and tough by watching my dad run his business through the 2008 recession, not letting my brother and I see him ever worry about money. If we were affected by the recession, I still would have no idea. My mom embodies love and wisdom. She has always worked full time as a lawyer and has been successful but she also would never miss any of mine or my brother’s sporting events (unless they conflicted). She has showed me that having a strong work ethic does not mean alienating yourself from others. I could ramble on about each of my family members. I bring this up because the global COVID-19 pandemic could bring out the best of humanity and in some cases it has. As someone who has dealt with long periods of isolation before, I feel I have knowledge that others may not have. I have been inspired by my family to help others heal and grow from this.

Tips for Isolation:

• Make a schedule– Wake up at the same time every morning and go to bed at the same time every night, plan your day and the things you need to do
• Find a project to keep you busy– Some people have taken up gardening, baking, home improvement, and many other things to pass the time in quarantine. Don’t force yourself to choose a project for productivity; find something you enjoy.
• Find other ways to connect– With PCS screen time is hard so maybe try snail mail! getting a letter in the mail (that isn’t a bill) is always exciting! My sorority is doing a sister pen pal thing and it has been really fun.
• Self care– Honestly I always found self care to be kinda bs until I realized that what I do for self care is not what others do and that’s ok! I love going out and kicking a soccer ball around but others enjoy doing facemasks. Both are perfectly acceptable and one isn’t better than the other. Just find what works for you!

I talked to my brother, who has never had a diagnosed concussion before, about a lot of his worries with the pandemic and not being able to see friends. I missed my entire junior year of high school so this isn’t my first rodeo with isolation. This too shall pass. But just as I try now to focus on what I have gained from PCS, it is important to focus on how we can become better people and global citizens after the pandemic is over.

I’m a perfectionist. In school, I can’t stand any grade lower than an A. I beat myself up for poor exam scores. As an athlete, I constantly strives to be better. Any bad touch on the soccer ball was unacceptable. Bad passes were criminal. Even with track and cross country, if I ran times that I felt were bad, I would get really mad at myself. Academically and athletically this mindset has been a huge factor in my success but also a huge factor in a lot of the anxiety I experience. Post concussion syndrome was no different and did not change my outlook on schoolwork at first. This was more harmful than helpful because there was no possible way I could perform to the best of my abilities while trying to recover from a severe concussion. In November 2019, when I sustained yet another concussion, I was just three weeks away from final exams and I knew there was no way I was going to be able to perform to my standards. I worked with the school and my professors. They helped me realize that the hard work I had put into the semester was not all going to be trashed because I was dropped on my head that fateful night. My hard work was recognized and validated. This motivated me further in this most recent semester to work with all my professors and really prove to them that I worked my butt off. This was hugely beneficial because in classes where I was boarder line, I was given the higher grade. I internalized that and really thought about my perfectionist mindset. This shows that the journey is sometimes just as important if not more important than the results. I know that I will be symptomatic for the rest of my life. I know I will face challenges due to my concussions. But I appreciate the fact that some recovery is better than no recovery and that slow progress is still progress. A year ago, I’m not sure I could have said that and truly believed it. Trying to change my mindset has helped my anxiety and has thus improved my results. A quote I love from a sports movie is, “I don’t ask you for a perfect game, I just ask you for a perfect effort”. This is a more malleable mindset and is still not saying that perfection isn’t the goal. Rather it changes what needs to be perfect.

Here is some embarrassing data for my heart this weekend. My dad noticed my heart rate has been incredibly high and unhealthy even when I’m just resting. I’m active and so not carry any extra weight (5’2.5” and 107 lbs and workout almost every day). I’m hoping this is just related to my autonomic dysfunction and that I don’t have an addition heart issue. We have a family friend who is a cardiologist at Mass Gen and so my dad is sending him two months of my heart data. I’m hoping that it is nothing too serious. Any potential heart issues are always scary.

Autonomic dysfunction is all too common after multiple concussions back to back and no recovery time between. I am lucky because my doctors were able to catch mine and treat mine. As you can see from the data, my POTS is currently flaring or there is something else going on. POTS and other forms of dysautonomia can be tricky to catch which is why it is important to have a neurologist and cardiologist working together. I was lucky and was treated at St. Christopher’s Hospital for Children in Philadelphia by both a cardiologist and neurologist well informed on POTS and concussions.

I do not know if this is POTS or something else. If it is POTS, I’m prepared to treat it and work hard to train my body to regulate my HR through exercise and medications. If this is a heart condition independent of my concussions, I do not know how to treat that yet but I will work hard to do whatever it takes to get better. Despite everything I’ve been through, I have not quit and I am still standing. I’m not going to let that change.

Earlier this month, the chancellor at the University of Pittsburgh declared that we would be moving classes online due to the COVID-19 pandemic. I, along with thousands of students across the country, had tons of questions which would take days and in some cases, weeks to answer. This entire situation just emphasizes the inequities that are so prevalent in society. Students will he punished for circumstances very much out of their control and that is NOT education. What happens to the students without laptops, tablets, computers? What happens to the students without stable internet access? What happens to the students surrounded by violence that focusing on school is impossible? What happens to the international students? What about time differences? COVID-19 has highlighted the weaknesses of our society.

Besides inequities, such as socioeconomic sounds, students with disabilities are also at a disadvantage. A question that was rarely asked if even at all was, what happens to the students who can’t stare at a computer screen for hours on end, even with blue light blocking glasses? What about exams? These were the questions I began asking and many still have not been answered. And really it is to no fault of my professors. This is an unprecedented situation and they are just trying to get through it as well.

Thankfully Pitt is going to allow students to receive satisfactory/no credit options at the end of the semester so this wildness does not impact GPAs. Even this was a fight. Students had to petition the administration to allow this. Across the country, most schools already switched their grading for the semester to a pass/fail option. This helps ease some of the stress I have about school but I still am a perfectionist. I constantly feel as though I’m missing something.

My point in writing this was to express how I felt about school during this pandemic. I also wanted to bring attention to those who need it but will never get it. Invisible conditions are problematic and will be exploited by crises now and in the future. Concussion patients are not even an after thought; they’re given no thought. COVID-19 seems to have destroyed the decade of progress we had made in concussion management. This is NOT education. This is grasping for something to hold on to and hoping it is stable enough to support my body weight.

“Education isn’t just about mastering material and improving skills. Education is about ethics. It’s about learning how to be a better member of a community, whatever that community is (a classroom or a college, but also a family, a workplace, a civic polity). It’s about understanding how to balance the drive toward intellectual development and mastery of new concepts and material with self-care and the sane management of responsibilities to the broader community.”

Source: https://www.washingtonpost.com/outlook/2020/03/20/coronavirus-college-pass-fail/

Dear Coach,

Did you know? Did you care? Do you care now? I bet I can answer all these questions. You knew. You did not care. You do not care now. Shame on you. You ripped away every dream I had for my future when I was only 15 years old. The emotional torture you forced upon me at the time was absolutely awful but now five years later, I still feel your wrath. I still hear you telling me what I experience is fake. Can you imagine being in my position? A long list of symptoms that will last my entire life. Uncertainty for my future. Will I develop CTE? If I do, you would have played a big role in that. Your coaching methods are atrocious. We had the best player in the league and we still couldn’t make the playoffs because you were such an awful coach. You did not know how to utilize your players and you had an inability to recognize talent. Your ego blocked you from ever considering that what you were doing was not working. How can you expect to win a game when all your players are in excruciating pain? How can you expect to win when your players are not able to sleep because of the concussions you forced them to endure? Soccer is a game that is played mostly at the feet. Three hours of heading everyday is not only unethical, it is extremely stupid. You were urged by your top player to have practices focused on foot-skills, keep away games, and defending. Again, your ego interfered and you did not listen. With a new season starting, I hope you take an introspective look at your coaching methods so you can protect your players and have more success.

Sincerely,

Claire Lapat

Honestly not much to say about this one. I was coaching track and working with a 9 year old boy with autism. I was sitting down and he tried to jump over me and he kneed me in the head. I apparently lost consciousness and was posturing and had convulsions. I’m not really sure what happened next or what happened when I came to. My mom put ice on it when I got home. We then found Dr. Stache (my current doctor) because my PT for my hip noticed I was exhibiting obvious concussion signs. I was then put in PT for my concussions once again, I started vision therapy, and started a program to monitor my autonomic dysfunction. I also had to have an MRI of my head and another EEG due to the posturing after the hit.

Again, not too much to say about this one. Most kids when they get to college so dumb stuff like drink themselves to alcohol poisoning or get an underage. Me? I decided that I missed soccer a lot and wanted to play club. My dumb thing was playing contact sports while extremely symptomatic and knowing very well that a blow to the head could be catastrophic. Nobody ever accused me of making good decisions when it came to my health. So I went to the first two practices. At the second practice in a game of keep away i took a tackle and fell back and hit my head. I couldn’t walk and had awful headaches. My roommate at the time told me that my soccer days were really over and she forbid me from going back. She probably saved my life and my academic career by speaking up for me. #concussion#postconcussionsyndrome#teamupspeakup#concussionrecovery#concussed

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You all probably thought it was over but no. We’re at concussion 18. It’s a lame story. I was on the phone with my friend. I was trying to multitask and dropped a cabinet door on my head (we have this bench/ottoman cabinet in our kitchen that’s super heavy). I thought I was fine and drove to cross country practice. During practice I started feeling really wavy dizziness and I had a pounding headache. I started throwing up. The double vision kicked in once I could see out of my left eye. I called my doctor and they said I had another concussion. I took a day to do nothing and then after that I was eased back into my routine. Rest IS NOT the best way to recover. That was emphasized to me by Dr. Collins at UPMC.

Here we are at concussion 19. I’d been in London for a week with my bubbie and cousin and when I got home I was on London time which is the cause of this concussion. I’d gotten home and my brother was learning how to drive stick. We pulled into an intersection and he slammed on the break and I went flying into the seat in front of me. That night I was in bed and in the middle of the night in my time difference confusion I fell out of bed and slammed head first into my bedside table. I woke up the next morning on my floor. My mom had heard the noise and when she came to wake me up for school she deducted that I smashed my head due to the loud bang she’s heard, the fact I was on the floor, and the bruising on my face, especially around my eyes. Rounding out my senior year she was a huge advocate that I ease back into academic activities (I missed like three days and then went back to school but I didn’t do homework). Her priority was that I start college strong. My Mom’s advocacy for me has been crucial for my recovery. Whether she had to march into my middle school every week to yell at them to give me accommodations or tell teachers not to make me do homework, she’s been my rock, best support, and my rock through this whole ordeal.

I was just trying to have a fun, innocent night with my friends. There were eight of us. We’d gone to dinner and then went back to one of the guys’ houses to hang out and go in the pool. At some point we decided to play hockey in his basement. I was totally sober and made a bad decision anyways. While playing hockey I was body checked by one of the guys who was a lot bigger than me. I was knocked unconscious and lay motionless for over five minutes. My friends took my pulse to make sure I was still alive. My friend drove me home when I came to. When I got home I was slurring and stumbling everywhere. I was incoherent. My mom asked how drunk I was. My friends guaranteed none of us had a sip of alcohol all night. This caused a really rough end to junior year. I mentally just wasn’t there. When it was obvious I was doing my best but was really struggling, I went to student support at my school. They were surprisingly unhelpful. Finals were around the corner and there was no way I’d do well. The school thought I was just trying to get out of them. My doctor was pissed and went into my school to meet with student support. When he walked out of that meeting, my final exams had been waved. My school year was over. I was in a bad place psychologically because I was so worried about what this concussion would mean for my future. I had just come back from a year off of school and now I was missing my final exams. I also did not take any AP exams (id taken AP physics 1 and AB calc and the private school equivalent to APUSH). This has effected me to this day because I could have done well on all of those exams and had fulfilled college requirements but now I have to retake a lot of classes because I couldn’t use AP scores to get out of them.