About Me


Dear God…

Let’s chat. My beloved grandmother would have been 90 today and I have more questions than answers.

Gosh, I can’t believe that she has been released from her physical body for so long now. I so vividly remember Dad telling me that she had passed away. I was in the PICU at Children’s. I cried so hard for about 5 minutes, but then I stopped. I couldn’t cry anymore because I knew that she was “whole” again and free from all suffering.

You and I fight a lot. You know that. I can’t tell you know many times I have and continue to get mad with you over her illness. How did someone so loving and caring deserve such a tremendous burden? They say that you only give these battles to his toughest soldiers and I wholeheartedly disagree. I don’t think it’s true. I think it’s just another excuse to justify why bad things happen to good people. Actually on that note, WHY?

Nothing but suffering came from this. I have yet to hear “Because of Nan’s dementia I learned…” You stole her. You hurt her. You made her suffer for most of her life. Nothing good came out of that suffering. Nothing. In fact, the more I think about it, it makes me more angry. She SHOULD be 90 today. She SHOULD have known she had a great-granddaughter. But no, she got to be a prisoner in her own body for over a decade. You know how I feel about your angel and your absolutely cruel plan for her. She’s the one grandparent that actually spent significant time in my life. I never got to know my dad’s father. My mom’s dad was hardly someone to get to know and I wouldn’t have remembered anything anyway. And my other grandmother has nine lives, but I honestly feel like I don’t even know her most of the time as so much is shrouded in secrecy.

So Dear God, WHY?


So I wanted to wait until the right time to share this news… While skimming the American Taekwondo Association (ATA) official rule book, I realized that there was nothing in the manual saying that an individual that uses a wheelchair or other mobility aid cannot compete in the regular divisions with competition but they do need to know that they are competing with the regular rules. The rules actually allow me to compete in the Female 18-29 2nd and 3rd degree Black Belt ring It was confirmed with Headquarters the same day. Effective the first day of the the 2019-2020 season, I will be dropping my status as a Special Abilities-Physical Division eligibility. I am aware that the SPS, Ehlers-Danlos Syndrome, Dysautonomia (autonomic/involuntary nervous dysfunction), POTS/OH/NCS/bradycardia/hypotension, CRPS, and a failing GI system may force me back to the Special Abilities division. If and when that day comes, I’ll have to make some choices.

I will finish off this tournament year at the Northeastern District Championships in Lancaster, PA this weekend. I will be competing in six events for the title of World Champion in Little Rock, Arkansas in July. I have four World titles from the 2017-2018 Tournament to defend and I recently started doing XMA forms and XMA weapons. I qualified for those events as well. We’re going for 6 World titles this year, so I need to get it in gear!

The following week is my 3rd Degree Black Belt Test for Rank. After 25 months as a 2nd Degree, I am excited to learn more!!! Especially, the 3rd Degree Black Belt

They say that every belt has millions of memories. I have found this to be very true. I have many great memories and I have a bunch of things I would love to forget.

But for now, I need to focus on crushing it at Districts, my rank testing, and Top 10. Since I am competing in the regular division, I’m unsure if I’ll even place in anything next tournament. But as Tom Krause said, “Courage is the discovery that you may not win, and trying when you know you can lose.” I’m making this change to better myself, for the camaraderie, and for experience to improve myself as a student, competitor, instructor, and most importantly, as a person.

Self-Advocacy Thoughts…

Being deaf since birth with hearing aids and cochlear implants taught me the power of self-advocacy and helping others in similar situations, as it is difficult to grow up with one disability and even more challenging when many more piled on. I know my story has educated, inspired, and liberated those with and without a HPV vaccine injury.

Now, becoming a self-advocate didn’t happen overnight or even over a year. It took me over 10 years to master my own “voice”, collect the knowledge, and be an open book for others. And trust me, there were MANY tears on that road! The last 6.5-7 years I’ve become an even more powerful self-advocate, but I’ve learned to help others too; from my rarest condition to my most common using Facebook, Instagram, and my blog. Keep going warriors! We never know who we are inspiring or helping in their own triumphs and challenges!

Destroying the Logic Behind Excuses for Not Trying Martial Arts

Martial Arts is probably the one sport that people constantly say “maybe I’ll try it someday”, “I’m not in shape for it”, “I’m too old”, or insert any other excuse here.

You don’t have to be the most flexible person ever. You don’t have to kick the highest, punch the hardest, be the strongest, or have the best technique. You don’t need to be the fastest or have the best footwork. You may not have accomplished your fitness goals quite yet. You don’t have to have the perfect form (which doesn’t exist). Weapons may not be your thing and that’s ok. Sparring might be more than your body can safely handle for medical reasons or you just plain might not care for it. Getting whacked in the head in combat repeatedly isn’t fun, but it happens and not everyone enjoys hitting someone else with a padded stick. We’ve seen you don’t need arms to be a successful martial artist and you don’t need to be able to move your legs to do martial arts in the ATA. The body can have its issues, but the spirit doesn’t need to be compromised.

You do have to be willing to try though. Stepping in the door the first time is the hardest. You do have to deal with occasional feelings of discouragement and that’s totally fine, because improvement is not linear. Ask just about any black belt if they’ve ever been frustrated by something on their journey and they can probably give you a giant list; forgetting several moments, because there’s been so many. Forms get forgotten at extremely inconvenient times. Weapons get dropped or whack you in the head. You lose a sparring match in sudden victory, because you fell for your opponent’s set up. That combat stick goes flying out of your hand costing you the match or you “no change” at testing, because you couldn’t break a stubborn board. It happens.

But, no matter the circumstances, you can make that conscious decision to stop making excuses and try. Respect, confidence, perseverance, discipline, self-esteem, dedication, and determination beat limitations when the limitations seem insurmountable. It’s about the spirit, drive, and will to succeed. When the view switches from what one can do well instead of what they “can’t” or don’t do quite as well yet, that’s when true martial artists and black belts are made.

There’s not one martial artist in the world that “has it all”, because that would require perfection and humans aren’t perfect, but the past, present, and future black belts are the white belts who never gave up. Any given day, I may have more or less control over my dysfunctional body. At tournaments or testings, I might mess up badly. Anyone who does it long enough will have their moments. However, the desire, will, discipline, respect, and perseverance are more important, because that’s a section of the standard I attempt to hold myself to each day both on the mats and in life. I can have an “off day” physically and it may be beyond my control, but there’s no valid excuse by the standards I hold myself to for anything less than black belt attitude, because it’s the one thing I can control 100% of the time.

It’s one thing to try it for a while and see if you like it before making a decision, but those that never try will never know what could have happened if they’d tried.

Johns Hopkins Appt. Update 1/23/19- OFFICIAL DIAGNOSIS DAY!

So I went out to Johns Hopkins for a follow up appointment with the Stiff Person expert and it was a great appointment. We are making a few treatment plan changes that should have a big impact.

First of all, we decided to cut out my clonazepam completely. It isn’t helping me and has never helped me at higher doses.

Second, I am being switched off of IVIG to SCIG pending insurance approval. The SCIG infusions contain immunoglobulin (IG) just like the IVIG, but the IG is released into my subcutaneous tissue slowly reducing the risk of infusion and allergic reactions. Also, after a nurse trains me, I can administer the treatment myself in the comfort of my own home! Less time in infusion centers! Woohoo! While we wait for approval, I’ll be on plasmapheresis again for five sessions, which should bring my arm function very close to baseline, which would be amazing.

Pending blood test results, I will find out if I stay on Rituxan or go on Cellcept, an oral immunosuppressant. The results aren’t back, so at this time, no one has the answers yet. However, it seems I’m experiencing a negative impact to my liver from the Rituxan, a pretty rare side effect of the drug, so we are considering that as well in the decision.

We are hopefully being connected to a doctor that is at MUSC that I can follow with after the move and will take orders from Hopkins through the doctor’s connections.

Lastly, I was enrolled in the expert’s research study to find the biomarkers for Stiff Person patients, which means, we have proven beyond a reasonable doubt, that the final diagnosis is Stiff Person Syndrome. So while I’ve been treated for it for a while now, I’ve never been able to say when I was diagnosed. Well… symptoms started early September 2012 and my “official” diagnosis day in my eyes is January 23, 2019 and that’s what I’ll tell doctors when they ask “When were you diagnosed?”. A question I never truly had an answer for and usually left me stuttering or uncharacteristically silent with no clue what to say.

Am I glad I have it? No, I’d wish it away in a heartbeat. Am I glad that I have a true medical answer and it’s not “all in my head”, stress, conversion disorder, psychosomatic illness, functional neurological disorder, etc.? Heck yes! This is THE DAY I’ve been (im)patiently waiting for for almost 7 YEARS! I feel so incredibly validated after being told so many other things over the years. The feeling of relief that we are still trying new things and striving to make my quality of life the best it possibly can be makes me as content as can be, because I know my God has got this and can accomplish many things that other humans and I cannot. And hopefully by studying me and the handful of other pediatric onset SPS patients in the world, we can find out how to better treat us. I’m not 1 in a million, I’m even rarer than that because of the pediatric onset, so people like me all need to get involved with this study to find the “key” to the differences in pathophysiology between adult onset and pediatric onset SPS. The answer is out there, we just need to ask the right questions…

~Jeremiah 29:11~

All About My PEG-J Feeding Tube & Feeding Tube Awareness Week 2019

Well, Feeding Tube Awareness Week 2019 is nearly here!

After years of struggling with orogastric (OG), nasogastric (NG), and nasojejunal (NJ) tubes, I made a huge decision on December 12, 2018 in the ER ICU bed of Johns Hopkins Hospital. It had been suggested to me that I have a permanent/semi-permanent feeding tube placed. Because I struggle with my stomach for unknown reasons, my gastroenterologists suggested placing a percutaneous endoscopic gastronomy tube (PEG-J). At the time, it was merely a suggestion, but in a matter of 2 weeks, I would find myself in interventional radiology (IR) for the emergent placement of the surgical tube at a hospital in Pittsburgh on December 14, 2018, as my temporary NG tube had fallen out.

Nasojejunal Tube (NJ)- My most common type of tube placed (the yellow tube coming out of my nose).

The procedure was smooth, but the experience waking up was definitely not. My surgical site didn’t hurt at the time, but it was definitely a painful stiff person syndrome attack.

Below is a picture of my GJ tube with the skin covered as there was some blood. It will be switched out for a low profile button when my stoma or the hole in my abdominal wall and stomach is fully “matured” or healed.

Feeding tubes may be given to individuals for a variety of reasons, but my primary reasons for having one is that it allows me to have reliable access to medications without needing my jaw or esophagus to function properly, as well as providing nutrition straight into my small intestine.

There are four main parts to the GJ tube: the gastric port (G port), the jejunal port (J port), the stopcock, and the balloon.

The G port is for venting (letting the air out of my stomach) and draining (releasing the excessive stomach acid out). It helps reduce nausea and prevent vomiting.

The J port is my lifeline. I’m tube fed 24/7 through the J tube and my medications are ground up and delivered through the port. It keeps me hydrated and stabilizes my weight.

The stopcock is the orange tube with the white dial that controls whether or not my G port is open. I open it to flush the tube out with warm water at least 4x a day (I do the same with the J port), vent, and drain my stomach.

Then, there is a part of my tube that says “Bal.”. That is the part of my tube that holds my tube in place. Inside my stomach, there is a balloon that can be filled up with water using a 10ml syringe. That is where it twists on.

So that’s a brief summary of a PEG-J feeding tube. If you have any questions, please feel free to ask below. Don’t forget that February 4-8, 2019 is Feeding Tube Awareness Week!

The 3 People We Meet in Life

I recently watched a video a friend shared on Facebook by Jay Shetty. He was speaking about the people that come into our lives and the various ways they come into our lives. There’s people we have for a season, people we come across for a reason, and people we have for a lifetime.

The people we have for a season are special. We enjoy wonderful times together, but eventually that season ends. I was thinking about the majority of my friends from high school here. I was never “in”. Actually, I’ve never been “in” whether it was the basketball team or friends from youth group/mission trips and school. People that are in our lives for a season of life often take something from us, but they may not give it back to us.

An example of this is an individual that struggles horribly with anxiety, depression, and obsessive compulsive disorder. We were pretty close for 3.5 years. Every time this individual needed to talk, even if it was 2am, I would talk to them. I urged them to see a psychologist and be compliant with the anti-anxiety and anti-depressant medications they were prescribed. I invested a ton of myself into the friendship. I found myself in a position to escape an abusive environment, but they chose to “defend the bully”. It’s been 4 or 5 months since I last heard from this person. I have still have them on social media and I still have their number in my phone. But I’ve realized the season is over. They’ll call or text me when they need something, but when I need something? Forget it, I don’t even ask.

Then we have the people we come across for a reason. It can be mutually beneficial or fairly one-sided. These people teach us, help us develop as people, and support us when life knocks us down and repeatedly kicks us. I can think of three good examples of people that came into my life for a reason; all of them teachers. My 4th grade biology teacher, my 5th-7th grade language arts teacher, and my 10th-12th grade history/psychology and sociology teacher.

My 4th grade biology scared me to death. She could be very mean and short-tempered some days. Other days, she seemed fine and some days, she would frequently be absent. I had tremendous anxiety about going to her class and by the time Christmas break rolled around, my mom realized I couldn’t take it anymore. So she invited the teacher to lunch over break and we all sat around and enjoyed some good conversation. After lunch was over, my mom explained the real reason why she had requested that my teacher come over. I was absolutely terrified for this discussion, but it would be one of the biggest lessons I learned about dealing with difficult people my whole life. A lesson so large, it’s still sticks with me today.

Honestly, I thought she was just plain evil. I mean I was in fourth grade, so if people were mean, they were just plain mean. As it turned out, she had some very complicated medical conditions that caused her to be in varying amounts of pain and often required her to take off. She too had anxiety and her pain often led to the fluctuations in her mood. I remember all of this is going down and finally feeling a sense of relief that there was a reason why she was the way she was. As it turns out, this kind-hearted teacher wanted to learn more about me too. She knew I was a good student with hearing aids, but not much more beyond that. She learned that I loved American Girl dolls when I showed her my precious collection, reading, and soccer. The lesson I learned that day was priceless. Everyone is the way they are for a reason. Sometimes in going the extra mile you can learn why someone is they way they are and that understanding can lead to better understanding of the other. In understanding the other, we can better understand how to communicate. In the years since, I’ve learned that not everybody is willing to open up even a little to make the ability to understand them easier and that I have to accept it and move on. Sometimes moving on is really hard to do when there are multiple friendships at stake and only one of them is toxic. Thank you for helping to teach me this valuable life lesson Mrs. O!

Some of the harshest lessons I’ve learned in school came from my middle school language arts teacher. She was the school disciplinarian and “head” of the locker searches. The most important thing she taught me was how to be more organized. There was a lot of “tough love” involved here. My locker was searched daily. My planner had to be used and signed by my parents daily. And if I turned in an assignment that was even slightly wrinkled, I would lose points. I hated her with every fiber of my being and it didn’t get much better when I was not only written up for “lying”, but when I was given after school detention WITH the bully that caused the incidence that led to my only pink slip, detention, and reduction in conduct grade ever. My detention was physically painful for me. I had to sit (as a 5’7” 6th grader) in desks intended for 3rd graders. My legs had to be under the desk with my chair pushed in and back straight in my chair. Then I had to stare at the cross for 30 minutes. If my eyes even moved off the cross before I was told I was allowed to look away or I moved my folded hands from the desk, I was told my 30 minutes would start again at the next day’s detention. One problem, I had to hyperextend my neck to see the cross because I had to look straight up. Because I didn’t have my Ehlers-Danlos Syndrome diagnosis yet, my neck was hurting terribly and hyperextending my neck like that makes it harder to breathe. It was so awful and I was not allowed to move in any way to massage my neck muscles. Years later, she would find out I was indeed innocent. She taught me how to be organized (so organized that others have sought me out to help organize their lives over the years. She inadvertently taught me that sometimes you have to pay the consequences of others’ actions and sometimes doing the right thing only means you’re going to get in trouble for it (even if you aren’t responsible).

My high school history, psychology, and sociology teacher is honestly one of the most extraordinary men I’ve met in my life. He taught me to truly believe that everything happens for a reason, that every life has a purpose, every challenge has a meaning, and life’s challenges are all about how we respond to those challenges. He taught me to ask the hard questions that maybe don’t have an answer and most interestingly, he taught me just how powerful music is as a teaching tool and way of understanding life. The interpretations of certain music that he taught us taught me about some of history’s biggest messages for us and how they can be applied to life lessons. I learned how to live life in that class. I’ll never need to know calculus, art history, music theory, how to diagram a sentence, or the importance of zeroes and ones in computer programming, but I will need to know how to handle myself in life. He taught me Life 101 and I wouldn’t have wanted anyone else to teach me it, nor would I want anyone else to take my baby blue high powered hearing aids. His extraordinary wisdom is THE most important set of lessons I learned in all of high school.

As those teachers were put into my life for a reason, I have probably been put into others lives for a reason to teach and help them. I wouldn’t know exactly who that would be, but I’m pretty sure it’s happened more than once.

And then, we have those people that are in our lives to help us learn, grow, laugh, cry, and experience life. These are the most precious and “limited edition” people we have in our lives. They see us through it all without judgement or conditions. They want to see us happy, healthy, and successful, but if we are failing in a important responsibility or area of life, they will show us the path back. Because my life is so darn complicated, few friends stick around very long. The ones that do are true friends though and are not afraid to hold me accountable. It’s quality over quantity with this third kind of person.

Link to the original video:


SPS Update- December 2018

For those of you who are unaware, I was in the ICU at UPMC Passavant for 32 days and was discharged December 7th. My family has managed to load up a lot of our lives to temporarily relocate to Baltimore so 1) my specialist can tweak my medications around and 2) I’m safer here than in Pittsburgh if something does go wrong (and well, reality check they have been going wrong, so this seems safest.)

My mom and I will be here full-time with my cousin. Evan will come down when he isn’t working and my dad will come down when he gets a 3 day or more streak of days off. It’s unfortunate that he will be working over 200 hours in January, so I’m not really sure how much we’ll see him down here.

While I am absolutely frustrated, angry, and hurting… you name it, that my jaw, fingers, hands, are in constant spasm/some degree of contracture and I’m 100% feeding tube dependent, I am absolutely stunned by the amount of support we have had from a lot of people. I think I can speak for my entire family when I say having a place to stay for free as long as we need to is a HUGE financial burden off us; having a trailer to move beds down, furniture, kitchen supplies, etc. helped bunches; 24/7 help for my mom (especially when my body goes into crisis mode and I’m rendered incapacitated).

I could go on and on about all of God’s BLESSINGS. First of all, my cousins. They’ve been a tremendous help with moving in. Insurance coverage of my hospital bed, feeding tube pump, tube formula, and the NJ tube (the tube on my face that goes to my intestines) that has kept me alive since November 8th when it was placed. We have a love/hate relationship. On the plus side, it pumps my nutrition and hydration into me, allows my oral medications to be given. On the hate side, it’s quite irritating to my throat at times or when it gets pulled on as it is attached to the middle of my nose with a string that will hurt if pulled on.

And most importantly, my family. I know there are families all over the place that relocate for medical care, but you never think that the city whose medical centers are held in the highest regard by other major medical centers like Vanderbilt, Northwestern, and even some long shots like Baylor, will fail you so badly that it comes to this.

Getting to Baltimore was an adventure, because I was not allowed to sit in a chair until the day before discharge and I knew that I couldn’t safely sit in a car for over 4 hours with my other conditions. We converted the back of one of the cars so I could lay down for the drive, because someone HAD to get bacterium in their bloodstream the day before the original move-in day. 🤦🏼‍♀️🤷🏼‍♀️

So now we are in Baltimore, 15 minutes from Hopkins, and turning this house into our home. We hung the first of the pictures on the wall and we will likely set up our Christmas tree when the 4 Bayers 🧸🧸🧸🧸 are back together again. I’ll do my 5 day course of IVIG here and my dose 2/2 for this 6 months of Rituxan, as well as go to see my doctor, who is squeezing me in the first time before Christmas. And until then, we keep praying for a Christmas miracle… ♥️❄️☃️🎅🏼

Dysautonomia Awareness Month 2018

October is Dysautonomia Awareness Month. Dysautonomia is the umbrella term for the dysfunction of the autonomic (involuntary) nervous system. The autonomic nervous system controls almost all involuntary functions including breathing, digestion, sweat production, blood pressure, heart rate, and pupil dilation and constriction to name a few.

I have a few different types of dysautonomia making my case challenging to treat. They are Postural Orthostatic Tachycardia Syndrome (POTS), orthostatic hypotension (OH), vasovagal/neurocardiogenic syncope (VVS/NCS) and generalized dysautonomia (because some of my symptoms don’t fit with some of the known conditions of dysautonomia.

For many people with dysautonomia, the most noticeable symptom are the sharp drops in blood pressure, chronic pain (migraines, “coat hanger” headaches, chest pain, abdominal pain, muscle pain, joint pain, nerve pain, etc.) and the sudden fluctuations in heart rate and/or blood pressure. This causes dizziness (often extreme) and syncope. It affects more than 70 million people worldwide and while it can be treated, there is no cure.

In my opinion, the most annoying part of this condition is having to constantly make sure that my heart isn’t beating too fast or too slow, as this can easily make me pass out. I also have to be very careful that my heart rate doesn’t go too fast during any kind of physical activity, as it can make me very sick. Despite everything I do to manage the symptoms of dysautonomia, which includes drinking at least 3-5 liters of water a day, consuming between 4000mg and 10000mg of sodium a day, taking the maximum amount of a low dose steroid called Florinef to help me retain salt and water, and a high dose of a medication called Midodrine to raise my blood pressure, it is still very much uncontrolled. Because I have both the tachycardia and the bradycardia, I am unable to take the beta blockers that many people take to control their POTS symptoms and currently, there is no FDA approved drug to treat POTS.

According to researchers at Vanderbilt University, Mayo Clinic, and the University of Toledo, dysautonomia has been compared to having COPD and congestive heart failure. Quality of life for patients with dysautonomia can be compared to patients in end-stage renal failure that require dialysis.

Because of the complexity of the case, I am on the waiting list to see Dr. Blair Grubb at the University of Toledo; one of the leading experts in dysautonomia who happens to have POTS himself.

I’ve only scratched the surface of what all dysautonomia entails. Please ask if you have any questions.

Beginning of May 2018 Update

I try to keep things real without being too depressing or coming across as complaining. The reality is that is has been HARD since this weekend. But instead of whining about how awful I feel, I figure a big health update is in order.

My neurologist and oncologist had a miscommunication that not only delayed me receiving the drug I needed, but it also prevented me from being able to get plasmapheresis twice. My daily medications help, but my plasmapheresis every 5 days is the biggest help. I’ve been struggling terribly without the plasmapheresis and I know the next two plus months are going to be hard without it.

I was approved for a biologic/chemotherapy agent called Rituxan/Rituximab after an initial insurance denial. The catch is that while I am receiving Rituxan once a week for four weeks this month and then once every 6 months, I can’t have plasmapheresis too because it would pull the drug out of my body, which means I’m going to struggle. Rituxan doesn’t work instantaneously, which means not having the plasmapheresis will be a challenge. This unfortunately, means that I will be feeling it all. I’m blessed to have access to Rituxan, but it’s still going to be challenging. Side effects of the medication can be intense as well and typically last for several days after the infusion. Because I will be receiving it weekly, it is likely that I will feel very crummy this month.

Also, I have had some exciting news for a while and I wanted to share it with you all when the time was right. I believe that time is now. I’ve been accepted as a patient of Dr. Scott Newsome, top Stiff Person Syndrome specialist, the only Stiff Person Syndrome Center in the world at Johns Hopkins. My parents and I will leave for Baltimore September 17th, I will have a specialized EMG (muscle contraction study) on the 18th, and I will meet with Dr. Newsome on the 19th for 2 hours before returning home. We were told this is unusual as he usually only sees patients for an hour at once, which I think speaks to the complexity of my case. We are thrilled that Dr. Newsome has agreed to take me on as a patient. It is the answer to our prayers.

Rituxan, oral immunosuppressants, another intrathecal baclofen trial, and an experimental hematopoietic stem cell transplant (HSCT) are among my remaining options for treatment. I am

cautiously optimistic that the Rituxan will help and that Dr. Newsome will be able to give us some more answers. I will be treated and under control in God’s perfect timing. It may not match up with what I want or those around me want, but let whatever God’s will is be done.

“God grant me the serenity to accept the things I cannot change. Courage to change the things I can and the wisdom to know the difference.”