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.

“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/

WHY?!

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?

#MakeItPossible

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.