It’s funny. A couple of weeks ago, a friend had mentioned to me that I had to be stressed out with all the changes and uncertainty in my life. I was like “Nah, this is normal for me.” As the next couple of weeks passed I thought about my definition of normal. Now to me, “normal” is a term that should only used to describe the settings on a washer or dryer, but if we are going to define “normal” in relation to my life, it might look something like this…
I went for my IVIG infusion yesterday. After we accessed my port, I got some Benadryl and Tylenol to prevent reactions/side effects. About 10 minutes into the infusion, I started breaking out in hives, flushing, my blood pressure dropped substantially, and my heart rate shot through the roof despite having Benadryl earlier. My neurologist said to discontinue the infusion until I get another injection of Xolair (which controls my allergic reactions), because he was afraid that I would trend further toward anaphylaxis and end up in the ICU with breathing issues. I'll get the injection Monday and we will try again next Friday.
As annoyed as I am, I'm glad we are playing it safe because my vitals were trending toward major trouble.
Fingers crossed that next Friday's infusion goes better!
I'm in uncharted territory now with my feet. It's been over 7 months without being able to move them and June 2, 2016 was the day I got back on my feet last time. Now it is all a mental game. I've adjusted to the pain of 24/7 spasms. I have my bad days, but for the most part, I'm used to it now. For the last 3 months, the integrity of the skin on my feet has diminished significantly and I have wounds opening up daily at this point. It's a battle to keep them from making a mess or getting infected. The blood flow is always less than optimal as well, which certainly doesn't help the skin issues.
An update on the neurologist front: I had a follow up appointment with my neurologist on June 5th. If we can get insurance to approve it (which they did!), I'll do 3 months of outpatient IVIG boosters and we'll talk again in September. Fair enough. The IVIG needs to build up over a period of a few months. There's been some progress, but more will be necessary to get my legs fully functional again.
The plan is to get the first booster June 23rd, one in July, and one in August, before following up with the doctor in the second week of September.
I have to say, it was extremely validating to hear my neurologist tell the resident (who actually trained at Mayo), that this wasn't a neuropsychological disease, because I have such ridiculous autoimmunity with antibodies that attack the central nervous system (and thus, make things not work the way they are supposed to). Only took them five years, at least 25 misdiagnoses, countless tests, and almost dying a handful of times before they decide it's not in my head. Nice. 🙄🤦🏼♀️
The stiff person syndrome made it on to my UPMC medical record for the first time ever and now I finally have someone in Pittsburgh who listens and has some idea of what he's talking about. Jeez, I never thought this day would come!
So yep, that's the latest on the medical front. My hours at work double this week and I'll be writing two final papers, so I'll be very busy this coming week. Many doctors appointments scattered throughout the week as well, and the insurance finally approved my Xolair injections for my allergic to everything immune system. It worked really well last time, so I'm hoping that I continue to have success with it.
When I first became sick five years ago, my favorite sport, basketball, was quickly ripped out of my life. I could no longer play, and as a high school junior, I was looking forward to getting some more varsity time. Yeah, sometimes life does one of its funny little tricks and works out weird.
The sport that fell into its place was taekwondo. I had done it for a few years when I was younger, but I wasn't very good at it to say the least. When I got super involved with basketball, taekwondo was one of the first sports cut. Like I said, I wasn't very good.
After losing the ability to walk due to extreme muscle weakness, I was determined to not let my conditions get the best of me. I could barely walk when I started taekwondo. Over the years, I've had my ups and downs with my health, but there's been one constant other than school... taekwondo. I would help out with the classes in addition to my own classes. In the last two years, walking has again become a hardship, so I do my taekwondo from a wheelchair or on my knees. Yeah, you heard me right. I used wheelchair and taekwondo in the same sentence.
Recently, I was teaching a class for 7-12
year old kids and we were having a talk on our life skill of the month, respect. The talk started just as many had started before. "What's respect?" "Who do we give it to?" "How do we earn it?" We had the kids all engaged and ready to get back to work, when one of the students when one of the students, maybe about 7 or 8 years old, mentioned that we should give more respect to people with disabilities. That perked my ears up and I was so shocked, that I was speechless. Fortunately, my instructor was on his A-game and came up with the perfect response. It went something like this:
Student: "We should give more respect to people with disabilities."
Instructor: *pauses* Everyone take a seat again. Who deserves our respect?"
Instructor: "So let's say there's a kid at school who can't see or a kid on the playground with one arm, their eyes don't oh work and that kid can't climb the same as you. Should you treat them any differently?"
Another kid: "But you should help if they need it."
Instructor (while nodding): "We are all the same. Help if you can, play together, and talk to them. This is one of the most valuable lessons you can learn boys and girls. Treat everyone the way you want to be treated. Respect must be earned."
This response was so spot on, I wish that more young people could have heard this discussion. If you teach them young, it sticks better. These kids have a taekwondo instructor in a wheelchair with multiple disabilities who hates excuses and special treatment. As my instructor told me the other day, when I'm teaching, they don't see the chair anymore; they see the instructor. Of course kids are curious, but they have an example right in front of them. With all my disabilities, I'm still held to high expectations with some minor accommodations, but do I get treated any different because I'm in a wheelchair? No. Not by the kids. Not by my instructor.
Not by my peers. Not my family.
The moral of the story is to teach kids respect and acceptance early so whenever they meet people different from them, disability or not, they know how to appropriately act. It's never to early to start!
Let's face it. No one is going to live forever and I believe that the day people realize and whole-heartedly accept that, that's the day they truly start living. The day I truly started living? April 30th, 2013, after my first major "stare death in the face" moment. When my life flashed before my eyes (and yes, that actually happens!), I realized I had a really unusual regret: I'd never been to a high school dance at the time. Weird regret especially for someone like me, but I fixed that regret, so it's all good. That's what drove me to live life fuller, and so, my senior year, in addition to school and making good grades, I did like anything and everything. Man, is it sweeter when you've almost had it taken from you! So I learned to drive, got my license, went though EMT school, and then lost goes on.
When the Mayo disaster struck, it seemed as if life would never be the same again. In all honesty, it hasn't been the same. Not even a little. The fragility and meaning of life are much more obvious. One can really find their purpose after something like that.
So breaking news... Life is 100% fatal and your attitudes in life are 100% your creation. That's actually not depressing either. We all get a "clock" so to speak. Some people have more time left on the clock and some people are burning through the time much more rapidly.
I have mixed emotions because I scared the world. I'm like thankful that I'm still here, angry that it could have been prevented multiple times, sorry that I put my family through that, excited for the future, blessed that I live each day with a purpose, and more...
I am forever changed because of that month.
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...
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!