I was what you might describe as a sheltered child growing up. I lived in a small town most of my life, went to private school, and made most of my friends outside of school through soccer and Girl Scouts. This sheltered lifestyle was a good fit for me growing up as a deaf child.
As I got older and earned my parents' trust, I earned more privileges. With more privileges comes more responsibility. I've never been afraid of hard work, so I embraced the opportunity to be more mature. When I was 16, I started developing a lot of medical issues and the diagnosis list kept getting longer and longer.
Some are more minor and don't affect me often, but many are debilitating and cause me to have symptoms everyday. At my sickest, I was forced to live at home and commute to my college for classes. I wasn't allowed to drive at the time due to the high doses of my medications. My parents and brother did almost everything for me. Washed my clothes, changed the sheets on my bed, drove my everywhere, fixed my meals, reminded me to take my medications, helped me shower and get dressed; I was previously perfectly independent. It killed me a little more inside everyday to have to have other people do so much for me.
Part of the reason I had to stay at home and commute was because the university didn't have any available wheelchair accessible housing available at the time.
For the 2016-2017 school year, I made the huge decision to move on campus in a single apartment that was fully wheelchair accessible. I would have to prepare my food, remember to take my medications, do my homework, wash my own dishes and clothes and more. It seemed completely overwhelming at first, but it has been one of the best things I've ever done.
My parents were forced to let go some more. I would be forced to deal with all my medical problems as they came. Mom wouldn't be at school to hold my hair while I vomited. At times I wondered if I was completely crazy to be living alone, let alone attending college full time, while having a job. I finished my Fall semester with a 4.0 and Dean's List honors and I'm just about halfway through my 2nd semester of the academic year. So far this year, I've only been admitted once and sent to the ER three times. That sounds like a lot in 6 months, but that is really good for me.
With the help of specialized fire alarm, vibrating alarm clock, good medications, and supportive family and friends, I have been able to successfully live on my own and thrive!
It's safe to say that I am no stranger to the operating room at some of the local hospitals. I've had 9 major surgeries in the last 7 years and over 75 more minor procedures in the last 5 years. I always joke that if frequent flyer miles were awarded for every time I ended up in the OR, I would be set for life!
Late last year, I had to have my wisdom teeth in the hospital operating room under general anesthesia due to my medical complexity and my increased risk of complications. No oral surgeon in their right mind would extract my wisdom teeth with all my other medical stuff. I ended up admitted to the hospital because of complication afterwards anyway, so I guess that was a smart call.
Anyway, I arrived at the hospital and went through the Same Day Surgery department as I've done so many times before. I sat in the waiting room for not even 5 minutes before getting called back to get vitals and all that good stuff. Within the hour, I was already on my way into surgery. Crazy fast process, which I've come to learn is not the norm!
Hugged my mom and did the usual pre-surgery routine. When I got back to the OR, I noticed that it was anesthesiologist that I had before (shocker!). Before he could even look at my wrist, I rattled off the usual. "Meghan L. Bayer, 08/12/1996" "Wow, you beat me to it!", he remarked. "Do you happen to know your medical record number too?", he joked. "98...........", I rambled. The room grew eerily quiet and everyone stopped what they were doing. "That's.... correct", he said softly.
I quickly realized that most 20 year olds don't have their entire medical record number memorized because they've looked at a medical bracelet and documents so many times. I quickly changed the subject to something lighter like my upcoming taekwondo testing.
The surgery itself was fine, but the recovery was complication riddled thanks to my CRPS and dysautonomia mainly. After spending the night and most of the next day receiving fluids and pain medicine, I was free to go home.
While the surgery itself was "normal" (whatever that means), my joking, yet serious response to that anesthesiologist's question reminded me that I'm not normal. Never have been. It's overrated in my opinion, but it was a giant wake up call when this happened.
Dr. Salim Hayek and the resident both, were so personable, concise, and listened to my mom and I so well. They asked great questions and for the first time, maybe ever, a doctor didn't look at me like I was an alien. So validating after 5 years of getting passed around from doctor to doctor! We established that unless there's another condition we don't know about this is definitely CRPS, as I have all the signs and symptoms.
The resident spent a long time with my mom and I getting a good thorough history and listening to all of the things I've gone through the last couple of years. He would laugh in disbelief that doctors said and did some things because they are so ridiculous that anyone with common sense could see that.
I can continue my oral ketamine (which has been key to me functioning for the last 4 years), my ketamine infusions should I need them, and I have a referral and appointment already set up for April 12th, 2017 with neuroimmunology at Cleveland Clinic downtown for an IVIG consult. Dr. Hayek seemed to think that Dr. Preston wouldn't have any reservations about trying IVIG again. Hallelujah! That's huge for figuring out my foot/ankle/leg spasms and getting me walking again.
We are also trying low dose naltrexone (LDN), as I haven't tried it before and the risks/potential side effects are quite small compared to some of the other things I've tried. Could take 5-6 weeks to see results, but I'm open to giving it a shot. To affect the immune system and start to modify it, it could take as long as 6 months to start having an effect. So far, the only side effect I've noticed is a slightly curbed appetite. No big deal there!
We discussed third and fourth line options which include a baclofen/prialt trial and potentially pump if it's successful. They trial it first via a single shot into the intrathecal space in the spine and if there's an effect, they put a pump in. Baclofen is a muscle relaxer that I was on orally for a while and it didn't do much for me at the FDA approved maximum dose. It was trialed last March and while I didn't notice an effect, my pain management doctor then though he did. Prialt is a newer drug. It is essentially snail venom, but it's shown to have excellent results in patients with intractable pain. Unfortunately, the list of side effects is long and serious, so it is definitely not an oath I'm ready to go down just yet.
As a very, very last resort, a spinal cord stimulator (risky for me in particular with my Cochlear implants and I wouldn't be allowed to ski or do taekwondo again) was discussed. Again, something I don't even consider an option at this point, if ever.
He strongly believes that my CRPS is immune mediated (something UPMC doctors refused to entertain as a possibility), and that we should explore that avenue first, as it is likely the cause of the muscle problems.
This was world class medicine from the minute we walked in the door to University Hospital today to the minute we were sitting at dinner and the neuroimmunologist's office at Cleveland Clinic called to schedule an appointment at like 7pm. I wish we had been referred to this doctor years ago!
For the first time in years, I feel like there is a plan and while management options for the CRPS are quite limited at this point, treating potential autoimmune things could help immensely. Now, it's just a matter of (im)patiently waiting for the April 12th appointment!
In the meantime, I have an appointment with a neurologist at UPMC Shadyside on March 7, 2017 and we are looking to into to see the chief of neuroimmunology at UPMC Presbyterian who is currently booking into February 2019.
It's been a tiring journey, but we are staying hopeful that someone somewhere will have a name and a treatment for this mystery condition we have come to know as "Otto".
Every once in a while, my flares of my chronic illnesses will hit so hard from out of nowhere. After a fiasco last week, the second in three weeks, I thought it was time I should write something up. So here it goes;
For the last 5 years, I have been searching for an answer as to why my ankles get inverted and locked in the position for months at a time due to muscle spasms, rigidity, and more. The mystery diagnosis to which we refer to as Otto, mimics many of the Stiff Person Syndrome (SPS) that all these doctors say I have. Previous treatments like ketamine and epidural lidocaine infusions have failed to quiet Otto down the last few years.
When I was at the Mayo Clinic, they did 5 days of IVIG, steroids, and benzodiazepines which broken the cycle for 2 months before some symptoms came back full force on 6 months later. Conveniently, all my doctors dropped me like a hot potato, right as I started to start my downhill slide again. My feet turned in, my legs started giving out again, and I ended back in the wheelchair again.
I have called neuroimmunologists and neurologists all over the country trying to get them to take on my medical complex and confusing case. I've finally found a few doctors willing to try, but I won't be able to see them until like March-August 2017. Much better than then January 2017 appointments they were trying to give me.
Until I have the SPS (Otto) diagnosis, I have to play the hurry up and wait game with the medical system. Hopefully, often I have a diagnosis, I can start treatment immediately to stop the progression of the disease and perhaps turn back the clock enough for me to walk.
The last couple of months have been challenging trying to prove to doctors that I am sick enough and that I am worth treating. Sounds wrong, but that's just the way it is.
September 28th, 2000 is a day my parents will never forget. It was the day that my moderate-severe sensorineural hearing loss. They both took the news really hard, but I think my mom took the news worse than my dad. I remember her crazy. I wish I could have dried her tears and told her that everything was going to be fine and that I would continue to be like any other four year old kid mismatching my clothes, playing in the dirt, and running around with a Winnie the Pooh rain slicker and boots.
In the weeks that followed, a frenzy ensued. A scramble to get a second opinion, what to do about my education, and paying for my first pair of hearing aids. It was also the first time they had to fight to get Medicaid for me to cover future hearing equipment expenses. I wish I could have told them to slow down and breathe. That everything would be absolutely fine. That's a tall order of any first time parent or any parent for that matter.
Early Intervention services would fall into place, I'd get my hearing aids, my diagnosis of hearing loss would be confirmed by another doctor and everything would be fine. I wish they would have spent time enjoying my baby brother and I versus wrestling with the medical system every minute of every morning for the next six weeks. In everyone's eyes, I was seen as limited instead of full of limitless potential. I wish my parents would have let me go to the advanced courses when I was little, but they were afraid because of my hearing. I wish that my hearing hadn't been an excuse to not do certain things growing up.
By the time I started kindergarten, I was completely on target with the rest of my peers. The teacher wore an FM system in the classroom that made understanding their instructions easier.
To all parents of children with a hearing loss, the sky's the limit! Don't try to hold them back from great opportunities because your own anxiety is getting in the way. You are their best advocate until about middle school, when they should become more active in IEP meetings and goal planning sessions, as these self advocacy skills will be imperative for the rest of their lives.
So relax, enjoy your kid, and everything will fall into place in due time!
To My Second Grade Math Teacher,
My mom and I will never forget you and that's not a good thing. You see, I was never a naturally gifted mathematician and guess what? I never will be, nor do I really have a strong desire to be exceptional at math.
When I was in your class, I used my fingers to count for addition and subtraction to calculate the answer. It worked for me and it got that answer right. I couldn't do it your way, because my brain just didn't think the same way you did. One day, you caught me using my fingers to add and when the next parent teacher conference came around, you told my mom I was dumb and I'd never go anywhere in life because I couldn't hear. Fortunately, I wasn't in the room and I wouldn't have understands the situation at the time.
Well, guess what? That little second grader who was the worst in the class in math started taking algebra in 6th grade, algebra II by 9th grade, honors geometry Sophomore year, honors pre-calculus her junior year, and calculus her senior year. I've also taken all the mathematics I need to graduate from college. Not only did I graduate high school with highest honors, I also finished with an A average in every subject, including math!
I am thankful to be done with formal math classes from here on out, but it is the own subject that has helped me grow as a person the most due to all the adversity surrounding it.
I did it. You didn't think I could do it, but I did. Never judge the outside appearance because the hard work and indomitable spirit may surprise you!
In martial arts, we are always practicing balance and focus; two very essential parts of being a successful martial artist. Balance keeps us steady and focus keep us alert and engaged.
In the course of living with chronic illnesses, we are also forced to strike a balance. Just enough food to sustain yourself, just enough energy to do daily self-care, just enough patience to go to the doctors appointment. Chronic illness is big hurry up and wait game to the medical system. When you are waiting 8 months to see that doctor you so desperately need to see, that can challenge your focus. You have to keep pushing forward through every day to make it through to the appointment. It may seem impossible and like the day would never come, but time does fly fast than we think.
People ask me how I do it. I'll always on the fly, school, volunteering, taekwondo, homework, family, friends, meal preparations, laundry, cleaning, and doctor's appointments. It's all in the balancing act. You have to find the combination and strategies that work for you. It's is so vital to stay organized to prevent future stresses.
Hopefully, you have figured out how you are going to ration your spoons this week and make the most out of life! Remember, it is a great big balancing act!
"The warrior is an ordinary man with laser-like focus." -Bruce Lee
Disclaimer: The following article reflects my experiences and the resources I get my information from will be below.
In the United States, vaccine injuries are a very sensitive matter. When the hoax proclaiming that vaccines cause autism came out, a group of anti-vaxxers starts to form. While we don't officially know if vaccines cause autism, but the initial claim was a hoax and the perpetrator even admitted it. However, this new trend has led to an overall disbelief that some vaccines can be harmful to some people. Such is the case with the Gardasil vaccine.
What is Gardasil?
Gardasil was first put on the market in 2006 to try and combat the number of cases of HPV. It covered 4 of the 200+ strains of HPV and is administered in 3 doses over a 4-6 month period. It confers immunity for a maximum of 4-5 years and increases the risk of cervical cancer about 2-3 times. Gardasil has been known to cause premature ovarian failure as well. The sad part is that you are 44% more likely to get a serious side effect than you are to get HPV. (http://www.thehealthyhomeeconomist.com/gardasil-increases-cervical-cancer-risk-for-sexually-active/)
Common side effects of Gardasil (like many injections) include: pain, swelling, redness near injection site, Itching, bruising, bleeding, headache, fever, nausea, and dizziness according to the Gardasil9 website. (https://www.gardasil9.com/about-gardasil9/side-effects-and-safety/) Reports people people passing out after receiving to vaccine are not uncommon. However, a small subset of people tend to get more severe conditions, like dysautonomia, autoimmune disorders, gastroparesis, RSD/CRPS and more. In some patients, death results.
My Gardasil Vaccine Injury Story
On August 24th, 2012, my life changed in the blink of an eye. I was at the doctor's office for a sports physical for the upcoming high school basketball season. At the end of the physical, I was told that I was at the age where the Gardasil vaccine was recommended. As I was fully vaccinated up until that point and perfectly healthy, my mom agreed to have the 1st of 3 doses done. I received the 1st injection and there was nothing to it. I didn't even feel the needle, but the fluid going in was worse than a tetanus shot. I went on my way and was to receive the next shot in 2 months and the last shot in 4 months for a total of three shots.
About a week later, I started developing severe headaches and back pain. I blamed it on my rigorous basketball training schedule and moved on with my life. I thought to myself, "This will pass.", "This is temporary.", "You're just tired. Get over it." As the weeks went on, my sleep became poor and I was constantly tired. I didn't bother going to the doctors, because I thought I was just burned out from playing basketball year round.
Then, some alarming new symptoms emerged. I was in history class the morning of October 18th, 2012. I had actually been feeling ok that day until my right pinkie finger, swelled up, turned bright red, shiny, and was sweating profusely. It was radiating heat off of it and the burning pain was hands down, the most excruciating pain I had ever felt in my life. I ended up calling my mom to come get me. We went to the doctors the next day and received the first of many diagnoses that would cause headaches, nausea, vomiting, weight loss, blurred vision, shortness of breath, skin color changes, skin temperature chances, skin texture changes, hypersensitivity to touch and pain, low blood pressure, tachycardia, bradycardia, syncope, and many, many more.
Now, nearly 5 years later, I have a weird constellation of symptoms and diagnoses. They overlap with one another and exacerbate each other. It's been a long 4.5 years. I've spent periods practically living in the hospital, nearly lost my life from complications of my conditions, and so much more. In some ways, I never got the chance to be a teenager. According to Merck, 1 in 912 girls passes away from the vaccine and over 500000 girls are believed to have be affected by a chronic illness or life-altering disability.
I've had to say goodbye to some of my friends, as they lost their battles with complications from the vaccine. These complications are not rare, rather they are just rarely recognized. The effects are debilitating and for myself, and many others, permanent and without a cure. I believe that there is probably a subset of people that are susceptible to these complications, however, until we know the characteristics of that subgroup, this vaccine needs to be approach with caution.
This vaccine has changed my life in every way possible and given the ability, I would turn back the clock and say no to the vaccine. I never did receive the remaining two doses, but I'm glad I didn't have to find out what would have happened if I did.
Ribbon Picture from http://beatcancer.org/blog-posts/hpv-vaccine-side-effects-part-one
Dear Dr. Chi,
When I was born with a severe hearing loss in 1996, the Universal Newborn Hearing Screening was not yet federally mandated, so I never had a hearing test done in infancy. I hit all my milestones on time and while I never crawled, I was a very fast bottom scooter. For about 3 years, everything seemed fairly normal. As I approached the age of 3 and a half, my mother and grandmother noticed that I didn't respond to my name normally and that I always turned my right ear toward the speaker. My dad and pediatrician thought it was some kind of behavioral quirk. At my mom's insistence, we were referred to the audiologist for hearing tests that showed I had moderate-severe bilateral sensorineural hearing loss. Naturally, my parents were devastated and they were told I'd lose all my hearing by the age of 18. That's a tough pill to swallow.
They ordered me these purple hearing aids with these clear ear molds that had rainbow sparkles in them. The hearing aids helped so much! I wore that pair until about 2006 when it was decided that I needed stronger hearing aids.
This time, they were royal blue and silver and I really appreciated their galactic effect.
Then, in late 2009, everything changed when I lost the remainder of my hearing in my left ear. We met with you and you recommended that we try new hearing aids to make sure we were maximizing my hearing before I got cochlear implants. We were able to maximize hearing in my right ear, but all the hearing was gone in my left ear.
We started the process towards implantation: audiology evaluations, psychology evaluations, speech evaluations, meningitis vaccine, and CT scans before meeting with you again to discuss everything. I passed everything with flying colors and on May 18th, 2010, you implanted me with a Nucleus 5 internal device. On June 10th, the day after my 8th grade graduation, my left ear was activated. I heard immediately and speech therapy followed to learn how to listen with my bionic ear.
Then in July 2010, my right ear lost the remainder of its hearing. You approved me for a second cochlear implant and I underwent the bilateral implantation on August 31st, 2010, the day before my freshman year of high school. I ended up having lots of pain and some complications causing me to need to spend the night in the hospital, but you were so gentle and compassionate throughout the experience.
On September 28, 2010, my second cochlear implant was activated, ten years to the day of my initial hearing loss diagnosis. I have the best hearing I've ever had in my life. I excelled in mainstream high school, made the Dean's List in college, excelled in basketball and skiing, earned my 2nd Degree Black belt-R in Taekwondo, learned French, and I've traveled the world.
The seven years I've had these devices have been life changing. Even though you have to go back into my head on April 5th to explant and reimplant due to a failed internal device, I know it will be just fine because I trust you with my life! Together, we will get through it!
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!