Today is one year since I woke up from my "nap". I posted this picture on Instagram earlier, but I figured I'd post it here too. It's fitting. Honestly, my whole life is nothing short of a miracle. Between the late detection of my hearing loss and no deficits from that and some of the larger medical stuff I've faced and continue to face, it's nothing short of a miracle.
I'll need a few more miracles over the next couple of months, but if God brings me to it, he'll get me through it. Baby steps! The next several months are very overwhelming and uncertain to me, but I'm trying to let God steer the ship for a while.
Without a doubt, experiences like this make you hug your family and friends tighter, laugh a little louder, love more deeply, and don't sweat the small stuff.
This was the first time I got to hug my dad after waking up when they let me out of the restraints and my mom was able to capture the moment. Still brings a tear to my eye.
I just wanted to share a wonderful story. I was in the Registrar's Office trying to get my credits and gen eds out of the way. I was just about to leave, when a woman asked me if I was wearing cochlear implants. I told her yes and she mentioned that her dad had them. He was actually one of the first people implanted in Pittsburgh in the 1980s. She went on to say that she had several hundred batteries designed specifically for complete implant us and she didn't know what to do with them when her dad passed last year. We exchanged information and I went back to the advising office the following day to pick up about 360 batteries, which costs approximately $200. This is fantastic, because my 675 disposable batteries have been expired for 4 years now. I use rechargeable batteries normally, but if for some reason I don't have power or the charger, I use my disposable backups. So nice of her! Humanity is still good everyone! ❤️😊
I actually remember this conversation, despite being barely conscious. I couldn't speak yet, as my brain was so badly scrambled by the seizure, but I think I got my point across with my facial expressions. In my perfectionist Meghan Bayer way, I knew what I wanted to say, but I couldn't physically say it, which drove me crazy. I'll never forget this phone call, because it reminded me of what I needed to get better again to do and of all the kids I help teach, their families, and my classmates/family waiting for me to come home.
The last couple of days I've been getting lots of taekwondo training in, I worked a few classes Friday night, and I've been getting lots of summer schoolwork done. My whole reason why? Because I can. Everything I do today, we weren't sure I'd ever do any of it.
I started over to some degree. Swallowing, walking, talking, writing, decision making, routine activities of daily living, driving, moving my arms and legs, reading, unscrambling my vision, even basic math! Some things came quicker than others. My more executive functions were last to return in the middle of October after my midterms.
So, why do I do what I do? Because I can. We take so much for granted these days. You never know how blessed you are until you don't have it or almost lost it.
Reflection on High School, College, Graduation, Spoonie Students, and the Instructors That Would Never Give Up
Right now, everyone is in the midst of the exciting high school and college graduations. High school and college both force students to embrace challenges and work hard to accomplish their goals, even if it at the expense of sleep and a sad social life. This year, like every other year, individuals with chronic illnesses and disabilities are graduating from high school, college, or maybe even graduate school.
Education is hard enough as it is for the average person, but for many people all over the world, they are forced to contend with their dysfunctional bodies, while trying to remain as functional as possible. By the time they finish their high school and collegiate studies (if they choose that path), most will have completely bombed one exam, quiz, or assignment, due to an
inability to focus due to "brain fog" or pain. For some, merely picking up the pen to write can be a huge challenge, but typing may not be any better. It's a bad game of "Would You Rather?" if you ask me. Maybe they have to step out a long class to take a stretch break and get the blood moving so their body doesn't pitch a bigger fit. In that time, they could be learning the newest lesson, and yet they have to miss it if they want to be able to attend the classes later that day and not spend the next week recovering.
I can honestly say that if it weren't for my teachers at OLSH, I would not have pulled off graduating high school on time. Yes, I consistently got highest honors every quarter, but when you are missing the entire last month of your junior year, because of an ICU stay followed by an admission to the local inpatient physical rehabilitation program, you need a little help. Senior year, I was super sick every morning until about 9AM once I had gotten sufficiently hydrated to start my day. That led to a lot of tardy arrivals. I don't remember the exactly figure, but I know it was unreal. For every tardy arrival, there was an early dismissal for a doctor's appointment, procedure, or tests. I spent more of my senior of high school in doctor's office than I did in school most days. How my grades didn't slip I'll never know.
After a relaxing summer, I started college at Pitt. I had/have some amazing professors who genuinely want to help in any way they can. They honored the accommodations and even offered additional accommodations that weren't formally written in yet. Last semester, my public speaking professor noticed that my hand was spamming uncontrollably while I was trying to write my answers for her midterm. It was a super easy exam, but surprise! I was the last one done because my hand was being uncooperative. When I turned the exam in, she mentioned that she had noticed my troubles writing and told me I could type the final if I wanted. That's just one of many awesome examples of the great people at Pitt.
I may still have a year to go before I can walk across that stage to get that college diploma, or as my dad likes to call it "that really expensive piece of paper", but I would not have made it two this point without my amazing teachers in high school and fantastic college professors. So for now, I'll soak up the remainder of my college experience, while I try to figure out what I'm doing with my life!
Remember, behind every chronically ill student, there is at least one teacher or professor that will stop at nothing to help and will never, ever give up.
1 year. 12 months. 365 days. 8,760 hours. 575,600 minutes. 31,536,000 seconds. In May 2016, my mom traveled to the Mayo Clinic in search of answers to my complex and mysterious medical issues. Upon arriving to Mayo, I was in bad shape. My weight was at an all-time low in the time I've been my adult height and I vomited my feeding tube, so no supplemental nutrition. So basically, my GI system completely shut down. Sitting in my wheelchair was extremely painful, because I was so thin, but what choice did I have? I was constantly drained of energy from the malnutrition and was deemed as failure to thrive. Regular headaches and migraines were a regular occurrence, often at the same time. That's a weird feeling, let me tell you. And the pain.... absolutely everywhere and so intense. Throw in the two seizures I had in the 2 weeks prior to leaving and you have a fiasco. There was a ton of other stuff going on too, but if I wrote that all out, I'd be here all night.
Neurologically, I was having the most severe and concerning symptoms I'd ever had, but I kept my mouth shut, because it was "all in my head". There was nothing wrong with me. Rightttt. No. After hearing that from the doctor, I flipped out on my mom and literally screamed that I wouldn't do any of the tests if he was going to go with the theory that nothing was going on with me. I don't know why, but I went through with all the tests. Little did I know that decision would be one that ultimately saved my life. One test that would have saved me that would have been done if it wasn't "all in my head". A CT scan would have potentially saved me from disaster by detecting the brain swelling, but it was never done until after I went into the coma. Too late. May 12, 2016, the world would learn just how stubborn I am.
Backtrack for a second. I almost didn't go through with the tests. If I hadn't done the tests, we would have flown back to Baltimore and driven home that Wednesday night. I would have been "sleeping in" on that Thursday morning. I probably wouldn't have made it to 10AM. See where this everything happens for a reason come in? Funny how that works sometimes.
My last memory from the period of May 12, 2016-May 23, 2016 are the fact that I was flaring horribly after all the tests, so I was watched Bones on Netflix all night and into the morning. I remember that I couldn't sleep because I was in so much pain. 3:30AM CST is roughly the point at which I don't remember anything for the next 11 days.
I'll continue this over the next couple of days. Let's just say there's no manual on how I'm supposed to feel one year post-Mayo "nap".
The post below showed up in my "On This Day" feed. I actually said that the night before. Famous last words.
To Be Continued...
People with rare diseases at generally referred to as zebras. In medical school, doctors are trained that when you hear hoofbeats, think horses, not zebras. This means that you should consider all the more likely causes before jumping to a rarer diagnosis. However, there are some people in this world for which the title of zebra still doesn't work. I am not proud of it, but it is the truth.
I am a unicorn. Now, I more than likely have a variant of stiff person syndrome (SPS) that is not yet named, but has the components of several of the named variants. While there is a recognized spectrum, there is really only one true name for all conditions on the spectrum, which as you can imagine, can make things difficult to name/identify.
For me, my SPS is pediatric onset with antibodies against GAD65 and amiphyphisin in serum and CSF. Less than 5% of cases have antibodies against amphyphisin, which generally suggests the presence of some kind of cancer, usually of the chest, which I also don't have. About 60% of all SPS cases have antibodies against GAD65, while about 40% will be diagnosed without the presence of GAD65.
Pediatric onset, antibodies associated with cancer (without the cancer), antibodies in both serum and CSF. Yep, totally a unicorn now. I have yet to find a case study of someone like me and I've been scouring medical school databases and literature for a while now. I know other people have been looking as well.
So while there aren't many out there, it is important to acknowledge that these so-called medical unicorns do exist and they struggle with their health just as much and maybe even more than zebras due to a lack of proper knowledge and medical treatments available.
The last couple of days, I have had the opportunity to do some serious reflecting on my journey and everything that has gotten me to this point. The first thing I have to say is, I'm grateful. Grateful for the family that has stood beside me unconditionally. Loved me unconditionally. Grateful for the endless support of friends and the support of their friends, etc. I know that my story has traveled all over the world at this point via Facebook, The Mighty, my blog, and more. Grateful for the doctors that helped me get through each day and worked to give me the best quality of life possible and yes, I'm even grateful for the doctors that epically messed up, because without them, I wouldn't have as much meaning and purpose in my life. My entire senior thesis in communication is going to be on rare diseases and the process that patients go through to get a diagnosis. But it wouldn't have gotten to this point, without all the epic failures and mistakes. In some small way, each of those failures, nasty comments, and unrevealing tests, has helped to mold me into the person I am today. I'm stronger because of it all. Less naive to some of the world's problems. More willing to listen and help when I can. More open-minded. Less critical of others (usually, I'm still working on that!). Grateful to everyone that has gotten me to today, April 30, 2017. All the professors and teachers, all the other medical personnel, all the people that have prayed for me that I don't even know exist (and I know that they are out there!), all my academic advisors... Simply put, everyone. Everyone has a place in this battle I call my life.
I'm also angry. There is still a vaccine out there that is still being given to young people each and every day, and plunging perfectly healthy individuals into the battle for their lives. And for what? The efficacy of the HPV vaccine is in serious question and the risks (in my eyes) do not outweigh the benefits; not by a long shot.
The devices that have been used to keep me alive and thriving to this point, my cochlear implants, feeding tubes, my trusty port (near and dear to my heart literally), ventilators, countless IV pumps, and the list goes on, aren't available everywhere in this world and it would be naïve to think otherwise. Yet, that same vaccine that was shoved on me five years ago, is getting shoved on children in third world countries who could only dream of the medical care that we have available in the United States.
It has been a long road to get me to today, April 30th, 2017, exactly 4 years since my first brush with death and nearly 5 years since the vaccine that turned my young life on its head. Dreams were shattered that day and new ones constructed in its place. Hearts were broken and repaired in the same 30 seconds. Oxygen was deprived from the same body that yearned and fought to stay alive. Just barely, but alive.
I'm actually not even sure what this piece is supposed to be about at this point, but I had some important points to make and I'll publish this post the same way I've published so many others. Trusting that it will find its way into the hands of an individual that can do something with the struggle and make it something bigger.
There is currently one final standing between me and officially being considered a junior in college. Chronic illness have pushed me a semester behind everyone else my age, but with my summer classes and the fall semester, I'll be a senior in December 2017. Pretty exciting stuff if you ask me. It's not been an easy road.
As I'm preparing for the last final of the term and the beginning of the summer term, I wanted to review the last 32 weeks. My year started out with a designation to the Green Team and an early move-in to 222 Ruskin Hall. It was a single and fully ADA compliant. Just perfect! My mom, dad, aunt, uncle and I spent hours moving me in, cleaning, and decorating.
I served my Green Team assignment and I had blast for the third consecutive year. It's become a bit of a tradition for me at the start of each academic year.
Eventually classes started and I loved each and every one of them! The difficulty was just right.
The following week, my cousin came into town and she cooked for me in my new apartment, with all my new stuff. Everyone swore that I would be eating out every single night, because I stink at cooking, nor do I have a desire to do so. Well, guess what?! I cooked 98% of the time and I got the occasional Chik-fil-a from the Cathedral Cafe. Not too bad for someone that is clueless in the kitchen!
Then, Labor Day weekend came and went. The day after Labor Day, I got up for my 10AM Mass Communication Process class when I went to put on my cochlear implants. My right cochlear implant sounded... funny. I couldn't really explain it, but being late for class, I didn't give it much thought. As the day went on, the sound got worse and by the time I got to my taekwondo class at 8:15 that night, I couldn't hear anything out of that ear. I thought it was just a processor issue, so I pushed it out of my mind until I could swap around pieces. But after swapping around pieces and processors, I realized this wasn't just a small external problem. I emailed my cochlear implant audiologist who told me to come in. She quickly realized that this wasn't a small problem either and contacted the surgeon and a representative from the company.
Life went on while they tried to figure out my implant issues. I ended up getting my wisdom teeth out on October 28th, which triggered a massive CRPS flare that got me admitted. Then November 12th, I competed at a regional taekwondo tournament in Cleveland, Ohio where I finished very strong. Two days later, I was back in the wheelchair and forced to reconfigure my material for my 2nd Degree Black Belt-Recommended test.
School continued and I made a 4.0 for the semester and got on the Dean's List for the first time ever. That evening, I tested and passed my 2nd Degree Black Belt-Recommended Testing, which was exciting.
Winter break flew by, and before I knew it, it was already time to head back to school. I got some good classes and a good schedule, but I was worried about my ability to do well in some of them. The professors were intense and the lecture styles very different. But I persevered, and around midterms, things started to look up.
I was scheduled to get my cochlear implant explanted and reimplanted on April 5th, 2017; a day that I looked forward to and dreaded all at the same time.
In the middle of January, my muscle spasms took a turn for the worst and I knew I had to do something and soon. I started calling doctors all over the country until I found some that would take me on as a patient. That led to several trips to Cleveland to University Hospitals, a trip to Stratford, NJ to Rowan University Medical Center, and to some doctors in Pittsburgh. I juggled all of that in addition to school, work, and taekwondo training for my 2nd Degree Black Belt-Decided training.
Kept making good grades and finally, the cochlear implant surgery rolled around. The surgery was easy, but the recovery was a nightmare. A few weeks passed and I took 4/5 finals and passed my 2nd Degree Black Belt-Decided testing and was admitted to the hospital for IVIG where I am currently today. I have one more final to take May 1st or 2nd, but I currently have a 4.0 going into that final. I'm hoping to stay on the Dean's List this semester.
It's been a long and hard year, but I've had the opportunity to prove to myself that despite my health, I can still accomplish my goals and do well in school.
So Farewell Ruskin 222 and Ruskin 211, I'll see you in the fall when I come back on the Green Team!
My recent cochlear implant explantation and re-implantation was rough to say the least. To control my pain, I was put on a ketamine PCA. Ketamine has a known side effect of hallucinations. When someone walked in the door with a gigantic teddy bear, I thought I was hallucinating.
As it turns out, I wasn't. My brother actually bought me a bear that was almost as big as me.
While the bear was a nice touch, the letter he wrote for me even more.
Dear Strongest Meg,
"The toughest battles are always fought by the strongest warriors." That is exactly what you are, a warrior. You face adversity on a level that people can't even begin to fathom, yet you do it with a smile on your face. You have this beautiful gift of finding the good even when facing hardships. There are only a few people in my life who I genuinely look up to and you are at the top of the list. No matter what you're going through, you are still able to do extremely well in school, work, compete in Taekwondo competitions, volunteer and a whole other list of things you're involved with. You made me want to apply to Pitt because I wanted to be like you and when I got in I was so incredibly happy. I felt like I had finally accomplished something great! In these coming years I will definitely always have you as my inspiration when I struggle through hard times in college. I'll think to myself: What would Meghan do? You helped me to realize what my purpose is. And that purpose to is help others and give them the courage, strength and perseverance you have always had. You're the strongest person I know and I know you are going to do so much good in the world.(you are already making a difference, but I digress.) Always know that I am here for you any hour of the day, week, month, year, decade. Forever. Thank you for believing in me when I had lost faith in myself. Without you I am not sure who I would be.
Much love from yours truly,
I mean who wouldn't bawl after reading that?! I surely did!
Ok, I'm just going to start writing what I'm feeling and I'm not going to stop. Consider this my current stream of thoughts, typos and all. This is really long and depressing in some points, but I try to go for transparency and showing the real deal. So here it goes...
I'm trying to prepare to enter the workforce upon graduation from college in the Fall of 2018. I have a good GPA and I'll likely end up with a 4.0 this semester and on the Dean's List. I'm planning on taking 15 credits over the summer term and I'm really excited for the majority of the courses. Except Introduction to Logic, not particularly excited for that, but hey, general education courses have to get done right? I have current goals of getting into the Communication Honor Society and Phi Beta Kappa, which is one of the most prestigious academic honor societies in the United States and I want to get the highest GPA I can. (Read: Do my very best all the time.) Graduate with my two majors, a minor, certificate, and a related area in linguistics. So school is all cool right now.
Moving on to taekwondo, I am coming up on a milestone testing for my 2nd Degree Black Belt-Decided. I am super excited to test. I am expecting 4 PA State Champion titles for my division and I dream of competing at the Northeast District Championships. I've had the incredible ability to judge at tournaments and become an instructor. There are some aspects of my training that are driving me up the wall and I'm trying to address those appropriately. That's a story for another time.
As for my job, I love it. Nothing gives me more pleasure than watching my students set, reach, and surpass their goals, learn and practice valuable life skills, and become physically strong and confident individuals.
Then, I have Finn to train, but he makes me so happy. I wish I could see or train with him more. Months ago, the thought of a service dog was such a major source of anxiety. "Is this for me?" "What if someone else needs him more?" "What if I screw him up? People have worked so hard to make him amazing just for me." Now, I'm afraid of him forgetting everything he's learned because I haven't gotten to spend real time training with him yet. I also enjoy helping out with AB Canine. It keeps me distracted and I get to spend time around all the dogs I could ever want. I'm still questioning whether I should keep helping, because my family is so invested in it and I don't want business to strain my personal relationships with the family the way it is. The last 5 years, I have managed to spoil every good thing I've ever had. PDM, Student EMS, ski patrol, taekwondo, school, the list goes on, but I've spoiled literally everything and got hurt because I gave 110% of myself and my efforts. Every. Single. Time.
Now, let's throw some gas on those fires and bring my dysfunctional body and health into play. I spend a lot of time waiting. Waiting for doctors. Waiting to fall asleep at night. Waiting for the medications to kick in. Waiting until I can get a desperately needed nap. Waiting for lab results. Waiting for appointments. Waiting for a diagnosis. Waiting for a treatment. Waiting for the custom wheelchair that keep me going. Waiting for my cochlear implant to be re-activated. Waiting, waiting, waiting... I usually don't tell people when I'm at my worst and I like it better that way. It means I don't get constantly criticized for complaining, which let's face it, no one likes someone that complains all the time, even for legitimate reasons.
After my last surgery, I did a horrible, horrible job of hiding how bad things actually are right now. I cried. I whined. I complained. I did a lot of thinking out loud, which I never should have done. My CRPS and Otto were kicking my butt, but I should have been able to control it. Be stronger than it. Pain is a mental game and I lost terribly after the surgery. I feel awful about not being the strong, happy, always smiling person that I am expected to be. I get an earful about it when I'm not strong enough. Sometimes it is explicit and sometimes it is implied in the comments of others. The guilt is through the roof for me. It was a solid 20 hours of wishing someone, anyone would help. The attending on the chronic pain service refused to allow the nurse to see me. Obviously, my wellbeing is not worth enough to them. What a great morale and self-esteem booster...
As a result, I can't get the treatment that gives me the best shot of stopping the progression the symptoms of Otto. I failed. I am failing. Bad.
Yes, I am a full-time student. Yes, I do taekwondo. Yes, I have a part time job teaching taekwondo that I love. Yes, I'm currently working on training my service dog, Finn and yes, I'm trying (and failing pretty miserably) at managing the only thing that is strong enough to kick my butt, which is my body. I still have to face the same world as everyone in 2 years. You sink or swim. The real world isn't always nice and accommodating and I don't expect, nor do I want, special treatment. After graduation, I'll need the education, life experiences, and finances to succeed on my own. Society has conditioned, not only me, but my entire generation, that this is what we have to do. It seems like a lot, but without my health, it is really typical college kid stuff. Poor health is not an excuse in the real world. It just isn't.
I've walked several sections of this journey by myself. I've cried myself to sleep, because no one, including my parents, believed my symptoms and that I couldn't control them. Let me tell you, that is a lonely, lonely place to be. I've cried myself to sleep in the hospital after my parents left because they couldn't deal with me anymore. It's always my fault. My fault that I got sick over a stupid vaccine. My fault that my health is totally screwed up. My fault that dysautonomia makes me pass out for no reason. My fault that dang antibodies are attacking things they shouldn't be. My fault that my CRPS spread everywhere. My fault that I'm hypersensitive to painkillers and that they've almost killed me. And according to one of my doctors, my fault that I had status epilepticus, hypercapnia, a coma, and metabolic encephalopathy, and more due to a "conversion reaction" that I "should have been able to control". Yep, this is all totally my fault! I know I forgot a few examples. Just let me know and I'll add them to the list.
I try so hard to keep life as "normal" for myself and other as possible. Sometimes I just epically fail; some worse than others.
In the meantime, I'm still here... Waiting for someone to toss me a rope so I can climb out of this black hole. Waiting, waiting, waiting...