About Me

Never Too Far From My Heart… or My Ears

Six years ago, I had one of the most beloved teachers at OLSH tearfully pull me aside as he explained to me that his hearing aids are no longer working for him. He did not have the $14,000 for him to buy the necessary new hearing aids. His plight moved me, but I wasn’t sure how I could help him more. It left a profound impact on me and I was emotional the remainder of the day… I had to do SOMETHING, but what?

When I came home from school that day, I told my mom about the conversation and she told me if I wanted to, I could give my newest, strongest pair of hearing aids to him. Sure, they were powder blue, but we sent him a message saying “Is Blue Your Color?”. He responded that evening very touched by the gesture. I’m not sure the reality of the situation hit him until I marched into homeroom early the following morning to present him with two sets of hearing aids. One was the newest, top of the line hearing aids and the other were a few years older. He continues using the powder blue hearing aids to help himself hear, but unfortunately he had to stop teaching. That crushed me. It felt like it was “too little, too late”.

It bothers me that adults over the age of 21 in most states can’t afford to get the basic hearing aid equipment they need to function in life. Kids’ hearing matters and my hearing matters, but adults’ hearing doesn’t matter?! This man served our country in the Navy, served decades as a school teacher and now, that’s it? How many other Mr. RJB’s are out there in the world but don’t have access to proper hearing aid equipment. I want to help change that. I don’t know how I’m going to, but I want to help change it. I WILL figure it out. I helped one person, but if I could help 4 more, that would be amazing!

Mr. RJB’s “ears” are never far from my heart and his very hearing aids were once on my ears for between 6 and 12 months. It’s just something I can’t let go… Never Far From My Ears. I’ve been there. It’s a part of my story. And I won’t deny that…

Former hearing aid user turned bilateral cochlear implant recipient… but the blue ears stayed with my amazing teacher long into retirement.

Why I Travel 600 Miles to Seek Treatment for SPS

They say, “the journey of a thousand miles begins with a single step.” Well, I didn’t know that when I received my first and only dose of the original Gardasil HPV vaccine at just 16 years old on August 24, 2012. I, like so many others, was genetically programmed to internally “self-destruct.” My immune system turned on my brain and spinal cord, causing disease in the multiple sclerosis (MS) family. It is called stiff-person syndrome (SPS), and it typically first affects women between the ages of 30 and 60. You have probably never heard of it, and if you have, you have probably never seen the aggressive, pediatric-onset of the disease.

I was living in Pittsburgh when the condition started. I had all this access to “world-class medicine,” and yet, this “world-class medicine” is the same medicine that nearly killed me. It would have killed me had it not been for doctors at the Mayo Clinic in Rochester, Minnesota’s genuinely world-class neurological ICU. And yet, in a way, the Mayo Clinic failed me too, as I had gone there originally for my previously undiagnosed pediatric SPS. I was just “too young” to have a “one in a million disease.”

One thing was sure. I needed a “one in a million doctor” to treat my “one in a million neuroautoimmune disease.” Over the years, I suffered mercilessly as we traversed all over the country. The Mayo Clinic, the Cleveland Clinic, University Hospitals, the University of Pittsburgh Medical Center, Allegheny Health Network, Rowan University Medical Center… Some of these clinics dismissed me as “crazy,” having a “functional neurological disorder (FND),” having anxiety or making it all up for attention.

The craziest part? The ENTIRE time I had elevated glutamic acid decarboxylase 65 (GAD65) not just in my blood, but in my cerebrospinal fluid too! Not too many diagnosed people know or have the antibody in the fluid bathing and surrounding the brain and spinal cord. I also have antibodies against my thyroid, causing Hashimoto’s thyroiditis and against my pancreas, putting me at increased risk for Type 1 diabetes, a common comorbidity of SPS. My autonomic or involuntary nervous system was failing me, and my limbs were contorting in ways you would only expect from the most pain-seeking contortionist in the world.

Finally, I found my “one in a million doctor” in the form of a neuroimmunologist at the Johns Hopkins Hospital. He runs the only outpatient SPS center in the world at the time of this publication. He confirmed my diagnosis with simple electromyography (EMG) that showed that I had agonist-antagonist co-contraction, meaning the muscles that moved my limbs back and forth were firing simultaneously, and they were firing continuously.

I had already gone through the first-line steroids and most of the muscle relaxers I could possibly be put on. I had been through plasma exchange where two large 18 gauge needles stuck out of the ports in my chest by a solid 1.75-2 inches 2-3 times a week and “cleaned” my blood of all the “rogue antibodies” out of my body one and a half times. I had suffered through several rounds of intravenous immunoglobin (IVIG) therapy that caused a myriad of painful side effects. It would take some creativity to figure out a game plan for a body and person unable and unwilling to do an experimental FDA trial stem cell transplant. We finally decided to start me on a form of chemotherapy that I receive every six months, high dose medications that I take just about every 4 hours, and weekly infusions of subcutaneous immunoglobin (SCIG) that I give myself weekly.

With this protocol, I am stable. Not healthy and perfect again. Stable. I am thankful for my parents, and I fighting to find this doctor. It is because of him that I don’t have to worry about dying anymore. I can live and thrive! I can fearlessly take on the world because that’s what we were made to do. I know that some 600 miles away, in a place I visit every six months, a doctor won’t stop fighting to give me the best life possible. I have to give my life my best. Even though it is an aggressive and progressive condition, I have hope that someday there will be a more effective treatment to battle my most formidable challenge yet.

Dear Netflix, What Were You Thinking When Making “Deaf U”?

Netflix, you have had some fantastic series come out lately, but I am sorry to say that “Deaf U” is not among them! Deaf culture is such a vibrant and visual culture. However, like most cultures, attending college is not all about sex life on a culturally Deaf campus.

'Deaf U' Trailer
Title Picture

It is okay to have sex if you’re Deaf! That’s completely normal and human! Partying? Sure, some people get unofficial “degrees” in throwing and attending parties while in college! It’s typical! However, Netflix, I don’t need to tell you that you are a HUGE worldwide streaming service of around 200 million subscribers! Your reach is enormous, and the service can be used for good, bad, or plain ugly. That’s an excellent platform for other places like Hollywood to notice an incredibly unique culture and potential make a movie starring a Deaf main character?

However, I don’t think a “reality show” like this was the optimal opportunity. I have a hard time even calling this an actual “reality show” and not a joke. The delivery of the content was entirely off. This was such a missed opportunity to talk with many students rather than 6-8 and maybe even talk to some other people affiliated with the university, like professors and other staff. I thought I was watching a show about many high schoolers who happened to be culturally deaf.

I know that opinions on the show are very mixed, especially right now as the show is practically brand new to the platform, and emotions are a bit raw in both worlds. I think it would have been cool to see Gallaudet University sorority and fraternity life. I get that talking about sorority life would be like talking about partying. Still, sororities and fraternities entail so much more than drinking and partying if one looks at them critically enough.

What about the clubs on campus? What are the largest classes like when you are all trying to see someone’s hands from 30 rows back in an auditorium? What’s it like taking notes during lectures when someone moves their hands continuously while you are trying to sign too? All of these might seem “normal” within Deaf culture, but the average hearing individual might find this interesting. I know that I would, and I live in a world that is not quite “Deaf,” but I am not a member of the “hearing world” either. I am from a middle world of sorts. My world. The cochlear implant and hearing aid world that millions of deaf and hard of hearing Americans occupy. I am really happy that it was highlighted that someone can be deaf, sign, and speak though.

While I am not culturally deaf (as in I interact with the hearing world and hearing friends for the most part), I am very aware of Deaf culture from learning American Sign Language (ASL) from a young age and taking college-level courses on the subject from Deaf people that happened to be professors too. Everyone I have had the chance to interact with regarding the series from both the Deaf and hearing worlds has been disgusted. All in all, I don’t want others unfamiliar with the culture to be getting the wrong idea. Some people are worried that people of color haven’t been represented enough and that there was not enough diversity. And I agree! There wasn’t enough diversity!

Please show me the dorms. What’s the cafeteria like? The campus of Gallaudet University. Show me more of the deaf world! I understand it is a small world, and it is really easy to be ostracized like the show mentioned. But why? Show me more! Less partying. Less sex. Show me the essential parts of the culture! Putting ASL on the big screen, pretty much for the first time since the release of Children of a Lesser God, is a wonderful start but show us more variety?

20 Years Special…

It’s kind of hard to believe it has been 20 years. It’s even harder to believe that it has been 24 years that I have been on this Earth. God makes every single one of us unique. Some have their special trait from the moment we were born, as was in my case, and some that come to us as we grow up; I’ve received those blessings from heaven too.

On September 28, 2000, my parents were dealt a life-altering blow to the family. My mom cried in sorrow since my grandmother’s and her intuition over the last couple of months was, in fact, correct. My dad vehemently denied that I had any hearing loss calling it “behavioral” to turn my right ear toward the speaker and not respond to noisy stimuli behind my heads. The diagnosis would end up being bilateral, moderate-severe sensorineural hearing loss. When we sought a second opinion, the surgeon said I would not be a cochlear implant candidate. He would do the same thing nine years later, right before I got my first implant. I remember crying so hard when he refused to implant me. I knew I couldn’t hear, and it was only getting worse.

My diagnosis would later prompt Evan’s diagnosis coming down my dad’s side of the family. My dad was a “functional person with a hearing loss that declined to wear them forever,” and Lord knows Evan’s hearing aids spent more time at the bottom of his backpack… Thank goodness for warranties and returns. He wasn’t ready, and some people just never are or take YEARS to get what they need. My grandma, one uncle, my grandma’s siblings, and her parents all had a known hearing loss (even though it was not a treatable condition in 19th century Ireland). No one is escaping genetics here!

Sadly, in the United States, it is so complicated and expensive to get hearing aids. Expensive commercial insurance simply doesn’t cover hearing aids or cochlear implants AT ALL! Anyone that needs hearing aids or cochlear implants will need to have state Medicaid (MA) to have any chance of getting the assistive technology they need. Obtaining Medicaid is a pain in the butt, depending on the state. I literally have to tell the Social Security Administration each year when I renew my MA, “Congratulations! It’s been another year that I am alive and profound deafness hasn’t been cured yet. Talk to you next year!” (with all the sarcasm in the world)

Science tells us that our world is getting louder. It also warns that noise levels that were previously considered “safe” are hardly safe and can cause a hearing loss with “modestly” noisy, steady auditory input, like mowing a large lawn. Even some office buildings push the limits of auditory “safeness” for lack of a better phrase. Long-term hearing loss that goes untreated seems to be causing increased levels of mental health disorders, obesity, heart disease, and other medical problems that can be avoided with regular treatment. The additional health risks are why we all need to have our hearing tested regularly!

In the 20 years since my diagnosis, God has brought several people into my life to “teach me” how to compensate for a sense that I lack entirely without my cochlear implants. When I was little, I played in a junior golfing league with a cochlear implant recipient named Ben. Ben was born with a bit less hearing than me. He had Cochlear Americas Nucleus 22 implants from the Cleveland Clinic (at this time, Children’s Hospital in Pittsburgh did not perform the surgery just yet). He was exactly like me in that he couldn’t hear, played every sport you could imagine, and was a friendly kid. Being deaf was not going to stop him.

My parents (erhm, I mean my mom) filed my MA for the first time, and they have filed it for the 19 years since. I find it funny that when she filed for the original MA, she had to physically go to the local SSA office in Johnstown since it was the dinosaur age before people really used (or even really had computers). I am pretty sure the only reason we had one at the turn of the century was because my mom was finishing up her master’s degree. However, only when we moved to South Carolina did I take over responsibility for MA maintenance. It is a huge responsibility because you can’t let it go, as it is a pain to get back. There’s never been anything I have been told I really can’t do (and really, really shouldn’t), and that is singing. I just wasn’t gifted with the ability to carry a tune in the bucket. Oh well, musical theater was fun while it lasted!

Throughout my early school years, I struggled. At my 3-year-old kindergarten graduation, I looked miserable as I search the crowd for visual cues. I struggled through 4-year-old kindergarten, only to fall on the low end of the math analysis skills section and average on reading and comprehension. I was not doing so hot when it came to academic achievement predictions. By first grade, my parents were told that I could be with the accelerated language arts group. Still, my parents were worried about my classroom success, so I stayed on the regular path. This is the ONLY time my parents said “No” to anything solely on the grounds of my hearing. The support for me has been INCREDIBLE when it comes to my deafness and cochlear implants from them! They’ve amazed me!

My early intervention specialists, sign language teachers, hearing support teachers, hearing support audiologists, general audiologists, ENTs, and cochlear implant surgeons have all had a vital role in getting me to where I am today. Shoutout to Mrs. V for teaching me how to interpret audiograms, the meanings of IDEA and FAPE, IEPs, accommodations, self-advocacy, and so much more! 

Some of my friends have come and gone, as some people do in our lives, but those who never cared about the hearing loss and all the other accoutrements that make me me have stuck around. Life was miserable as a kid trying to create and sustain meaningful relationships with my friends. When you’re deaf like I am, you’re not in the “hearing world,” but you’re also not in the “deaf world.” You are in some existential “middle world” that is always trying to pull you to one end of the spectrum. This is where I am thankful that I have a wonderful friend of almost 12 years, half my life, to explain my frustrations and obtain encouragement from someone else who truly “gets it.” 

The great news? If I had been born to the exact same parents under the exact same circumstances in the last five years or so, I likely would have had a cochlear implant before the age of one. As science continues to evolve and observations are made, surgeons realize that earlier is better when it comes to maximizing hearing, especially in that prelingual phase. Today’s cochlear implants and technology are the work of many people for the last roughly 35 years. Being deaf or hard of hearing is slowly but surely becoming less of an” invisible disability.” Maybe I am just eternally optimistic that life with a hearing loss will become more accessible for people as technology advances. Still, one thing is for sure: researchers and hearing aid/cochlear implant developers are working as fast as they can to improve the quality of life of current deaf and hard of hearing people and those that will have hearing loss in the future.

My name is Meghan Bayer. I have been deaf since birth. I wear bilateral cochlear implants. I can read lips and talk with my hands. What’s your superpower?

The “Illegitimate Black Belt”

*This is an unedited stream of thoughts that I have not proofread. It is raw and pure emotion.*

I catch a lot of flak being a black belt martial artist and judge, so I’m going to debunk some of the most commonly misunderstood, false, and sometimes plain malicious things I’ve heard over the years.

“People in wheelchairs can’t be black belts”. That is false in all 3 major/best known Taekwondo organizations in the world. I saw this on a t-shirt once and though it was fantastic: “Anyone can wear it (a black belt). Few can bear it.” Every person that has journeyed to a black belt (in any martial art) with all the blood, sweat, and tears for years knows that you become a black belt inside first. Only through that dedication, grit, and perseverance, does one earn their black belt. Wheelchairs and mobility aids typically don’t mean anything when it comes to earning a rank.

“You’re an illegitimate black belt” (because of the wheelchair). Take it up with my senior training instructor.

“Doing your form is easier sitting down. You don’t need to balance at all.” Actually, wrong. When I do certain parts of my form(s), I am balancing on a small peak at the top of my wheelchair. If I hold that position long enough, I get the same muscle burn in my abdomen and back that someone standing might get from holding a proper middle stance or back stance for example. I know this because I have done Taekwondo standing, which leads me to my next point.

“You’ve never competed standing up, so you don’t know how important stances are in forms.” False. I judge stances fairly regularly. I have to know them as well as everyone else. Also, the tournaments I did as a Karate Kid were on my feet. Additionally, I competed tournament years 2015-2016 and 2016-2017 standing up. 2017 ended up being a weird year, because I was in the wheelchair for half the season. And that brings me to my next point.

“You’ve had everything (accomplishments, titles, rank, etc.) handed to you.” Wrong. My state weapons title from the 2015-2016 season was in the regular division, as were my forms, weapons, sparring, and combat titles in the 2016-2017 season. My District and World titles are from the wheelchair, but they weren’t handed to me. I worked HARD for them.

Straight from the rule book: “A person confined to a wheelchair would never have the opportunity to score a two or three point technique.” First, people in wheelchairs aren’t “confined” to them. They are a means for us to get around and do what we want in life. Mobility aids are tools for a more full life. “Never have the opportunity to score a two point technique.” Never. Never. That’s a pretty big negative generalization. I don’t know, I mean I’m in a wheelchair, and I have a fair number of two point headshots on opponents in training and competition. Not all people in wheelchairs are paralyzed, but they would never have the opportunity to score a two point technique. I won’t score a three point technique (I’d need to magically jump for that), but I can score a two point technique.

 

Missing from the rule book all together: Combat Weapons Sparring Rules. The rule book doesn’t even have a section for it. If hitting the weapon hand below the elbow is 2 points for everyone else, what makes Special Abilities different? I can and do hit the weapon hand all the time. I can get to the head too and I don’t even necessarily need to have my feet on the ground. Getting the front leg would be a sticky issue for scoring, because someone in a wheelchair might not have a “lead leg” to stab. I normally do, but that’s not the same for everyone. So there may be some kinks to work out there. Regarding the presence of arms, if one arm is missing and someone is going to do combat, their weapon hand is probably going to be fair territory. If they are missing both arms without prosthetics, I’ve never seen or heard of someone doing combat in competition. But I would think the scoring on the prosthetics would be the same. I’m not going to say “impossible” or “never”, but I’d say it’s probably pretty hard to hold a combat weapon and strike without dropping the weapon or being hit before being struck and do combat with ones’ feet while remaining competitive.

“I’ve had to stop my own sparring/combat matches, because they weren’t being scored properly per the rule book.” Yes. I am pretty used to it now. I’ll ask the center judge to “stop time”, because I got my opponent in the head and I was *incorrectly* awarded two points. Even though I strongly disagree with the current rules/lack of written rules in the case of combat, but they are the rules and need to be followed regardless of how I feel. It’s a matter of integrity and winning because the judges didn’t know the SA rules would be wrong of me to win a match without saying anything. I refuse to compromise my integrity over it. Which brings me to the next point.

“The Special Abilities rules are missing from the Judging Chevron Clinic Video Series as of the last time I recertified my judging chevron.” So judges don’t get refreshed on the SA rules anymore and all too often, scoring errors are made unless someone says something. I get told that I’m “wrong” a lot. I get the RTTL or an individual ranking higher than the center judge familiar with the SA rules. On the flip side, it’s not unusual for the judges to ask me what the SA rules are, especially if a unique situation comes up.

“There’s discrimination when it comes to judging as a person in Special Abilities.” I have found this to be true and I have had at least 2 other SA competitors certified as judges message me and ask if I have issues getting judging assignments. The answer to that is yes. I have been booted off my judging assignments by other judges, because of my wheelchair and only because of my wheelchair. A brand new black belt, who was a brand new corner judge (never formally judged before apparently) as well took the spot I was assigned to judge “because people in wheelchairs don’t belong in Taekwondo and make better scorekeepers and timekeepers if they can ‘mentally keep up.’” That made my blood boil. When we walked out to bow in and introduce ourselves, the individual stepped in front of me and introduced themself as one of the judges. My blood was really boiling at that point. I didn’t say anything, because I had kids on every side of me and they really needed someone to get them in line. Not the time or place though. I never managed to get the individual’s illegible name or ATA #, but if I see them again, I’ll be pulling them aside.

Straight from the rule book again: “Please remember, the intent of these [Special Abilities] divisions is to providing opportunity for those who qualify [in regards to earning titles, Top 10, etc.] to earn the self-respect and self-esteem they could not have previously earned. The goal is that the competition be fair and safe for all the competitors involved regardless of their level of function and/or disability.” The way some Special Abilities competitors get treated is hardly increasing self-respect or self-esteem. There are some judges that have said some pretty despicable things within earshot of the competitors and I always hope the younger ones didn’t hear it. The self-esteem for some competitors (myself included) took a major hit with the widespread use of the “no exhibition sparring” rule. It was easily the worst 2 minutes of the 2018 Tournament of Champions for me to go out out on the mat without my gear on, have my arm raised, and be declared World Champion by default. Needless to say, I couldn’t wait to get off the podium after I got my sparring and combat medals and pins. I wouldn’t let my mom take pictures from the second time on the podium. It was downright embarrassing and other adult competitors expressed the same feelings. Someone put it expressed it as a feeling of being a “second class citizen” and I don’t blame them at all.

From the rule book (this one is two-fold): “Is hearing impaired”. Okay, in the late 1990s-early 2000s, “hearing impaired” was the most frequently used term to describe any degree of hearing loss. Now, deaf and hard of hearing (HoH) are the widely accepted terms. Using the term “hearing impaired”, implies that there is not only a deficit in hearing, but for some

people, it implies that they aren’t a “whole person”. I prefer deaf, because I am 100% deaf, but I know that would rub some people the wrong way. Second, if a competitor cannot hear (especially during sparring and combat because they have to remove their hearing aids, cochlear implants, etc.), we NEED the center judge (or any of the judges for that matter), to step into the ring to get our attention. I cannot hear the judges call break when I have my helmet on. It’s a safety issue, but one that is overlooked frequently. Judges, competitors that tell you they have a hearing loss are telling you that for a reason and NEED you to step out when they should go and step in when “break” is called.

From the “illegitimate” 3rd Degree Black (multi-time State, District, and World Champion), nothing is impossible until someone decides to make it possible.

“Fighting for Life: Interview with Amanda Schwarz”

Spring 2018 Interview Highlights

Instructor: “Yeah, I just give her the ground to run on. Here’s the path; go as hard and as fast as you can safely go. She’s been a pleasure to train. She soaks it all in, she listens; that’s all any instructor can ask for.

The great thing about SongAhm taekwondo is that it is modifiable. If you have a certain condition and you can’t kick like this, you kick how you can. All the forms we do, the ATA is wonderful. They have a wheelchair curriculum, but Meghan, again, as unique as she is, we’ve had to modify it for her again because she has complete use of her legs, she just can’t stand on her feet.

2018 Special Abilities-P Female 18-29 Traditional Forms, Traditional Weapons, Sparring, and Combat Weapons Sparring World Champion

So we’ve taken the wheelchair curriculum and thrown it out the window and we’re actually doing traditional curriculum with her; kicks and everything and we just modify it to where we don’t concern ourselves with stances; focus more on where the chair is and technique is; where the trajectory of the technique.”

Amanda: “At the end of every lesson, taekwondo students recite a promise about how they will live outside of class. The promise includes living in the Spirit of Taekwondo. That’s what Meghan is doing everyday. After discussing the events of the Mayo Clinic recently with her, she revealed to me that Mayo is the whole reason why she does what she does. Takes the risks that she does. Tries new things; because she doesn’t know when time is going to run out. Until then, she’s going to accomplish as much as she can. Taekwondo is helping her do that.

Cover for the Podcast- Spring 2018

Meghan and Class: “Sir, I will live in the in the spirit of taekwondo having honor with others, integrity within myself, and self-control in my actions, sir!”

Thank you to Amanda for the amazing opportunity to share my story, for presenting to her digital media class, and then presenting it at a special University of Pittsburgh Film/Media Festival in the 2018 Spring Semester!

Uncovering the Gardasil HPV Vaccine

In 2009, the CDC’s latest report caught the eye of the mainstream media. Chief Medical Editor Dr. Timothy Johnson said that he, too, would encourage parents to learn more about the shot before getting their daughters vaccinated.

“I am very much in favor of childhood vaccines,” Johnson told Chris Cuomo on Wednesday’s “Good Morning America,” adding that there is little doubt that the vaccine does have its benefits.

“We know it does what it says – it prevents HPV infections,” he said.

But he added that when it comes to comparing the benefits of the HPV vaccine against its potential risks, he believes there simply is not enough evidence to recommend to all parents that they have their daughters vaccinated.

“I don’t think we yet know the long term benefits or risks,” Johnson said. “I’m taking a pass on this one and saying to parents, ‘Study the issue, read the editorial… talk to your doctor.'”

Editorial to which Dr. Johnson was referring: The Risks and Benefits of HPV Vaccination in the Journal of the American Medical Association from August 2009. The CDC’s report is allegedly buried inside the “The Risks and Benefits of HPV Vaccination”.

On the same day, the Marketing HPV Vaccine Implications for Adolescent Health and Medical Professionalism was published. Both give serious thought to the dangers of Gardasil, because HOPE has NEVER been the foundation of evidence-based medicine. Throwing HOPE into the practice can and has catastrophic consequences; as evidenced by the premature death of Christina Tarsell just 18 days after the first dose of the Gardasil HPV vaccine.

INTERNATIONAL RUMBLINGS OF TROUBLE

Spain

“MADRID, Feb 10 2009 – Spain’s Health Ministry has ordered hospitals and chemists to temporarily halt the use of a batch of cervical cancer vaccine Gardasil, produced by drugmaker Merck & Co (MRK.N), after two girls became ill after a shot.

Spain’s health ministry said health services would continue to administer shots of the vaccine but ordered that the use of batch NH52670 be suspended after health authorities in Valencia region reported on Feb. 6 that two girls had become ill after receiving the injection.”

Japan

Five Years Since the Suspension of Proactive Recommendation of the Human Papillomavirus (HPV) Vaccine in Japanhttps://www.hpv-yakugai.net/2018/06/29/5years-english

“It has been five years since the Japanese Government halted proactive recommendation of the HPV vaccine on June 14, 2013, claiming that it could not provide the public with enough information. Compared to other routine vaccinations, an average of over seven times the number of serious adverse effects per one million HPV vaccinations have been reported, and the number of disability certifications by the Adverse Drug Reaction Relief System is almost ten times higher. The government has put in place research groups and selected cooperating medical institutions for the HPV vaccine, but measures to prevent adverse effects and to provide treatment have yet to be established. The public cannot use the HPV vaccine with peace of mind.

The government officially endorsed the HPV vaccine nine years ago, and many of the victims who were junior or high school students at the time of their HPV vaccination have now grown into adults. However, they have received no effective medical treatment until now and suffer from serious adverse effects, not only pain spreading all over their bodies and involuntary movements, but perceptual disorders, impaired mobility, sleep disruption, impaired memory, and learning disabilities. While their classmates became working adults, they have been incapable of fully attending classes and have abandoned their plans for higher education or getting a job. With no medical institutions able to give them sufficient treatment, they see no bright future and live under a shadow of uncertainty as they struggle to cope with agonizing symptoms every day.”

Ireland

“Almost 650 girls in Ireland reported requiring medical intervention or treatment after receiving the HPV vaccine, according to data collected by the State’s medicines watchdog.

“The Health Products Regulatory Authority has received 1,099 reports of adverse reactions and events associated with the use of the vaccine, but it said that this should not be taken as evidence of a causal link and that the benefits continue to outweigh the potential risks.

More than 690,000 doses
Since it was introduced in Ireland, in 2010, more than 690,000 doses of the vaccine have been distributed, and 230,000 girls have received the full course.

It said 59 per cent of the reports – or 648 cases – were considered serious, meaning they included circumstances where patients required intervention, such as a review by their GP, treatment for their symptoms, or both.”

Denmark- Are the Danes finally on to something?

“In 2014, Denmark experienced a rapid decline in vaccination uptake for the human papillomavirus (HPV) vaccine after a successful introduction of the vaccine in 2009. Before the decline, the uptake of the first HPV vaccine was around 90% for girls born in the period 1998 to 2000, while it dropped to 54% for girls born in 2003. The decline followed negative public attention from 2013 coinciding with increasing suspected adverse-event reporting to the Danish Medicines Agency. The aim of this study is to describe the HPV-vaccination uptake, to quantify relevant HPV-related media coverage, and analyse the relation between media coverage and HPV-vaccination acceptance in Denmark in year 2009–2016.”

Following a successful launch of the HPV-vaccination programme, concerns about vaccine safety shifted the public opinion and the coverage by the media. The noticeable shift in correlation between vaccination uptake and media coverage before and after July 2013 could indicate that increased media coverage influenced the decline in vaccination uptake. Media monitoring may represent an important tool in future monitoring and assessment of confidence in vaccination programmes.”

Also from the WHO Europe office dated January 28, 2019

Danish health authorities have launched a media campaign to restore public confidence in response to negative media reports questioning the safety of the human papillomavirus (HPV) vaccine and a related decline in the number of teenage girls getting it. The vaccine protects against cervical cancer.

“We knew that we had to do something to turn the trend around,” said Stine Ulendorf Jacobsen, a consultant with the Danish Health Authority. “We needed to raise public awareness by increasing health literacy so that people could make an informed medical choice about the vaccine.”

Does this suggest that the World Health Organization (WHO) is specifically targeting the countr(ies) who fall below the red line? What they are describing as “health literacy” can also be considered systematic manipulation?

I have said it before and I’ll say it again, Merck vs. the World when the Dam of information finally bursts… Some countries are catching on more than they were, but we need the entirety of Europe to take swift, definitive action before we see the “Gardasil Girls” (and boys!) to stop manufacturing this life-altering or life-ending junk.

UPDATED: 02/18/2020

You Have RSD/CRPS When…

Your pain tolerance is out of this world, and yet that’s not enough most of the time.

You choke down a wave of intense pain, that would send most people running to the ER for relief, down with a quiet whimper.

If all else fails to bring pain relief, you know you’ll pass out from pain at your breaking point.

Crying is not an option. Pain programs have taught you how to forget about crying over pain. All crying does is simply increase pain and get you in trouble.

Everything feels like a horrible tube of Icy/Hot on steroids times 1000000

Everything feels like an eternal visit to the gas station and someone lit a match.

Blankets and even clothes are just unbelievably excruciating.

You are a teen or adult crawling to the bathroom. (Basically anyone other than a toddler)

Having long hair hurts your face and back.

“What’s sleep?” You ask. “When did I last have some great quality sleep?” You can’t remember.

Shaving, driving, grocery shopping and listening to loud music are different kinds of torture techniques for those with allodynia.

You can’t decide if your crutches or wheelchair is helping or hurting you.

You can’t decide if you are feeling better or just getting used to the pain.

You are asking yourself, “Is that a new CRPS symptom, or a side effect of my medication?”.

You know you have RSD when your legs could be mistaken for a forest because you haven’t been able to shave for months because of terrible allodynia.

You know you have RSD when you have 5 colors in the summer. Pale, sunburnt, tanned, “normal”, and CRPS which for me includes every color of the rainbow and then some.

At the end of the day, you know what it truly means to fight anything a force that threatens to pull you down.

After all, you are always praying for the pain free days, when you have completely forgotten what pain free feels like.

“Finding Chika” Review

Mitch Albom’s “Finding Chika” (November 2019) Review

This is a spectacularly written book by Mitch Albom. Little Chika was born just days before the massive January 2010 earthquake in Port-au-Prince, Haiti that killed hundreds of thousands in just 30 seconds; demolishing much of the 2nd poorest nation in the world.

When Mitch began working in Haiti, he had no intention of being very involved with an orphanage, but they needed money. Enter Mitch and Jeanine Albom’s very hands on charitable roles. One day an older gentleman that he frequently traveled with told him that he could no longer manage his orphanage so Albom takes over more of it and he is almost immediately attracted to this remarkable personality of this young girl.

One day, he gets a call from a man at the orphanage and who says that Chika is not well several doctors come but what she really needs is a neurologist. She ends up getting an MRI in the ONLY MRI in Haiti. The results confusing, yet desperate. The Alboms need to make a decision… and fast.

Albom and his wife Jeanine end up bring her to the States for further diagnosis and treatment. The results are simply dire. The Alboms agree to keep fighting as long as she was going to fight.

The unique presentation and writing in the book is sure to trigger some hard crying/tears, laughter, fear, smiles, love, and sorrow. There are important life lessons from a 5 year old that most adults cannot even recognize or comprehend. It is a must-read!

In order, my favorite books from Mitch Albom and I hope I would rate it out of 10 against other similar books.

1) The Five People You Meet in Heaven (8/10)

2) Finding Chika (7.5/10)

3) Tuesdays with Morrie (7/10)

4) The Next Person You Meet in Heaven (3-4/10)

Finding Chika is so close to being on the same level as Tuesdays with Morrie, but the creative writing approach gave it the edge.

CRPS Awareness Month 2019

Updated: 11/13/2019

November is RSD/CRPS Awareness Month.

RSD/CRPS goes by many names: reflex sympathetic dystrophy, reflex neurovascular dystophy, complex regional pain syndrome, hand-foot atrophy, Sudeck’s atrophy, amplified musculoskeletal pain syndrome, and causalgia (to name a few common ones).

So what is RSD/CRPS? To start, it is the most painful medical condition known to man at a 45/50 on the McGill Pain Scale. Because it is so painful and it is hard to find good doctors to treat this condition, CRPS has a grim nickname: the “suicide disease.” We lose too many RSD/CRPS warriors because the pain is just so unbearable. I personally have lost several friends to the disease, and I’m always fearing who will go next. Many people with RSD/CRPS have been to the deep dark place, where they just want to escape the pain, but not everyone climbs out of it.

RSD/CRPS is a disease of the central and autonomic nervous systems. Within the autonomic nervous system, there are two branches: the parasympathetic or “rest-and-digest” mode and the sympathetic or the “fight-or-flight” response. With CRPS, the sympathetic nervous system is inappropriately activated for a prolonged amount of time. While it is more prevalent in women, men can get it as well. CRPS is a diagnosis of exclusion, meaning that doctors have to test for everything else before they can diagnose CRPS. Bone scans, thermograms, EMGs, and QSARTs can be used to help support diagnosis. I was diagnosed off a grossly abnormal QSART. Therefore, it is easily misdiagnosed/undiagnosed. While CRPS may not be life-threatening by itself, several people, including myself have nearly lost their lives to it because of botched procedures, failed therapies, severe allergic reactions, and side effects of medication.

There are two kinds of CRPS: type 1 and type 2. Type 1 occurs without a direct injury to a nerve. Many people with type 1 CRPS do not know why their symptoms have started. Type 2 CRPS, formerly known as causalgia, occurs after a direct injury to a nerve causes some degree of damage.

Regardless of whether someone had type 1 or type 2, the general course of the disease is similar. Most people experience a burning, stabbing, shocking, gnawing, crushing, throbbing, and cold pain. Every person is different, so these are just a few ways someone with CRPS might describe their pain.

Some other symptoms of CRPS include:

  • allodynia: hypersensitivity to light touch
  • hyperalgesia: extreme hypersensitivity to pain
  • changes in hair and nail growth
  • skin color changes
  • skin texture changes
  • temperature changes
  • changes to sweating patterns
  • stiffness in joints
  • temporary paralysis
  • delayed wound healing
  • hypersensitivity to sounds and light
  • irritability
  • edema
  • depression
  • insomnia
  • fatigue
  • dystonia: involuntary muscle spasms causing a fixed contracture of a single extremity or multiple extremities
  • myoclonus/tremors: the quick random  jerking movements
  • muscle atrophy
  • osteopenia/osteoporosis: bone density loss due to reduced blood flow
  • gastrointestinal problems
  • failure to thrive
  • weight gain/loss

The CRPS community must band together to get us the cure we so desperately deserve. Remission is possible, but we need a cure. It all starts with awareness. Join us on November 4, 2019to “Color the World Orange.” Simply wear an article of orange clothing, snap a picture and post it to social media! Until then, “Keep your chin up and charge the mountain!”

Please visit the following website to original article to learn more about RSD/CRPS

https://themighty.com/2016/11/life-with-rsdcrps-one-of-the-most-painful-conditions/?utm_source=engagement_bar&utm_medium=link&utm_campaign=topic_feed.story_feed.story_preview_card.engagement_bar/