Meg's Miracles

But you know what? SPS hasn’t and won’t win. The grit, determination, love, desire to explore our amazing earth, and the joy of the Lord are what define you. I don’t know why God chose Gardasil to damage me. To change me. To hurt me. However, I do know that God chose me as his daughter, adopted me into the family, and is preparing a place for me after my time here on Earth ends. I pray that my story has protected just one person. One person and this is worth it. Although, I think it was more than one. I think it was my family through the pandemic.

I’ve always thought about my hearing loss. God sent me over the bridge 13 years ago to get the bilateral cochlear implants and do all the therapies. I doubt my dad will ever use them, but someday, my brother is going to look at me and ask me to help him walk across that shaky rope bridge that can be terrifying. It is a privilege to be invited into someone’s life like that. And the best part is because I have been there and done that three times? I can help him too. I believe there are a lot of people I can help. If only I have enough time.

10 years, kid. That might as well be a lifetime for a young person, but keep on going, swimming, and pushing. Your Father in Heaven is watching.

Another warrior reached out to me and asked me to write a very raw and real article on SPS. I do some of my best more emotional writing when I’m most presently feeling the emotions or the aftermath of a spasm. So until I have the chance to write that article, I found this one to be one of the best articles from The Mighty I’ve read in a while.
https://themighty.com/2018/07/what-to-remember-if-you-are-facing-illness-and-comparing-to-peers/?utm_source=cordial&utm_medium=email&utm_campaign=segment_hot_daily_article_recommendation

I felt deeply compelled to write a post on the National Day of Prayer. I realize this is not everyone’s belief or cup of tea, but it has been mine and I feel called to briefly touch on the matter, especially because the inspiration behind the organization came from Psalms 73.

Growing up, my parents preached that we serve God by serving others. It is arguably the most important lesson they taught me. I grew up in schools where we prayed before every day, every class, and even in multiple languages as I wrapped up high school. Prayer and specifically, a relationship with Jesus Christ are important to me. I wish I could show you through my eyes and through my body what the Holy Spirit has done, because honestly, the strength I have been given is not of this world. If you could be in my shoes, I swear you would believe.

I survived Mayo, because there were more people praying for me on every continent than ever before. It was not my time to return to the Father. I dug deep in 2017, not believed by the world that something was seriously wrong with me, but I prayed I would find the light at the end of the tunnel. I did in the form of an SPS diagnosis on January 23, 2019; over two years since I had started praying and over seven years since the symptoms began. By science standards, my story reads “I shouldn’t be alive, but here I am.” I recently found myself in a situation, where I got a bad feeling in my gut, I leaned over to my mom and I said “I have a gut and a God and something is telling me not to do this.” My mom, in her constant support, reminded me it was my decision and that I could say no. I am thankful I did, because God fought some battle for me so I didn’t have to fight it myself.
(Continued in the comments)

May is National Mental Health Awareness Month! According to Medicine, 52.9 million Americans live with a diagnosable mental health disorder! That’s approximately 1 in 5 individuals! Mental health disorders in patients and those with other chronic illnesses are often increased due to , , and secondary to having a . Symptoms of SPS can include anxiety, depression, and even some ; including as individuals with mobility impairments from SPS may fear open spaces. Treatments for are varied and can include cognitive behavioral therapy/talk therapy and medications to name some common treatments. There is no shame in getting help and now, with the increase in , getting treatment from the comfort of your home has never been easier. Did you know that the United States just launched 988, an emergency number dedicated to and recently? Common medications used to treat mental health disorders have been shown to worsen SPS symptoms in some patients. Talk to your or to see what options are best for you. How do you optimize your mental health? I personally love working out, doing school, or having a good chat with a family member or friend.

There’s something so harsh about seeing the words “disability” and “indefinitely” on my clinic notes referencing SPS. As I study more and more patient stories for my research/master’s thesis, I am finding a lot of similarities (and they aren’t necessarily ‘good’). With each newly diagnosed person I speak with, I feel a renewed sense of urgency to help create change and educate the world on this condition. As my dear friend and warrior always reminded me, “Be the wheelchair cruising, feeding tube pumping, fluid running rare and chronic disease patient advocate you needed.” I think of you everyday bud! Time’s not on our side here, but I am working hard to make the most of each day. Whether you have SPS or not, a lot of the rare and chronic illness communities are chasing their cures. Keep at it! I am so proud of you for keeping on keeping on. I know it can be hard to do.

A giant “Thank you!” to everyone that read the “The Power” article. I’m thankful that many people found it relatable, & I pray that it will be a blessing to someone, somewhere. Not every day is easy & indeed, today’s one of those days, but there’s a little whisper that says “You’ll get ‘em tomorrow.” And I will. So will you. Tomorrow’s a new day…

Edited April 11th, 2022: Meg’s Miracles Diversity, Equity, and Inclusion Statement

“Meg’s Miracles is committed to fostering, cultivating and preserving a culture of diversity, equity and inclusion for all individuals. The most valuable asset we have as an organization is all of the wonderful individuals that we work with and support.

As the Founder and President, I have found tremendous strength in hearing the feedback, life experiences, knowledge, talent, and innovation offered by all the individuals that interact with this organization. Diversity, equity, and inclusion remain at the foundation of all endeavors of Meg’s Miracles.

Meg’s Miracles embraces and encourages our supporters’ differences in age, color, disability, ethnicity, marital status, language, national origin, physical and mental ability, political affiliation, race, religion, socio-economic status, veteran status, and other characteristics that make our supporters’ unique.”

Well, it’s 7am EDT/12pm BST, so… I am honored to be named the Rare Revolution Magazine Spring 2022 RARE Inspiration! This is a section of Rare Rev Magazine that has inspired me with the resiliency, drive, and determination of the “movers and shakers” of the rare disease world! ♥️ I never thought I would be one of the four individuals a year with this incredible privilege as a result of the Rock Hill Herald/The State, Columbia newspaper articles I did last year around Thanksgiving to promote SPS awareness, but you never know how God will use these opportunities! As hard as it is to run a non-profit organization without a marketing budget, God has richly blessed me and put my Communications degree to use! As an update to this article from the time it was written, we are up over $7500 total raised in less than a year and half. 😇💕

Meg’s Miracles has had media coverage in the United States & Canada/North America (to the best of my knowledge), but now, we get to add the U.K./Europe too! This article is up there as one of my favorites, because it is written for the scientists, pharma industry, physicians, the clinical & bench researchers, & the people that could change the trajectory. I have been trying to breakthrough beyond the patient advocacy groups to the physicians & scientists that need to study the condition & make the diagnosis! If one person is diagnosed earlier, mission accomplished. 👍

I’m thankful that every media opportunity I’ve had spoke openly about my faith & the role of faith in my life & the life of this organization. I’m waiting on a answer from God right now, so in the conjunction with the launch of the Spring 2022 Edition, I’ve decided that, while I wait for the university to grant me a graduate social work research mentorship, I’m doing to be writing another research proposal (over my break hopefully) on (general) rare disease patients and their networks of expertise. Because this is “public domain research,” it’s exempt from the IRB, unlike the research I hope to conduct for my master’s thesis on peds SPS. That proposal will require expedited-IRB approval, as I want to directly interview patients.

This is a beautiful article & I was legitimately shocked that they made it a 4 page spread, because I know they talked about having it on 1-2 pages! Thank you especially to Becky Pender from Rare Revolution Magazine and this edition’s sponsor, Alynlam!

https://edition.pagesuite-professional.co.uk/html5/reader/production/default.aspx?pubname=Rare%20Revolution&edid=a0df629d-177b-4b86-a029-4794d6fb895d&pnum=5

Rare Revolution Rare Revolution - Spring 2022

During church, we were reminded we should be trying for justice. As cliché as this is: WWJD? They slapped him across the face in front of the high priests & all he asked was “Why?” He was on a mission to save humanity. My heart has been heavy when I think of the long journey with SPS & Co. my family & I’ve walked. While we have been blessed with many amazing friends, I know I’ve fought alone; for a time, not a soul on this earth believed there was something wrong with me. There are no words to explain the barbaric, dismissive, & demeaning situations we’ve faced. I know that that the single dose of Gardasil has changed my body as I knew it in August 2012 forever. Gardasil didn’t just enter my muscle; it clings to my brain tissue as amorphous aluminum hydroxyphosphate sulfate (AAHS). The AAHS remains in my body 10 yrs later; not as antibodies, but as a neurotoxin. I have been asked about suing Merck. I don’t want Merck’s money. Money is not going to fix my body or heal my maimed friends and bring back my dead friends. Healthy girls don’t conveniently die of cardiac arrest or unknown causes less than 2 hours afterwards. Healthy boys don’t coincidentally have severe autoimmune reactions 15 minutes to 24 hours post-Gardasil. Money doesn’t fix everything & Merck, the FDA, & the CDC ruined all faith I had in public health experts, pharma scientists, & research integrity. It’s not fair & I present the facts to those that will listen, but either way, people will do what they want, as is their right. Research ethics need to come back. I know that “justice” will never be served for me, but I will be justified by God’s truth. Stay tuned for tomorrow for some exciting SPS & Meg’s Miracles coverage! 🙂⭐️☺️🎉🐣

I am so incredibly humbled to be featured in the Winthrop University Magazine for Spring 2022. I am very thankful to my family, my friends near & far, my amazing medical teams across the United States, my classmates, professors, & my ATA Martial Arts family worldwide. I am astounded by the graphics in this article! Here is “One in a Million Meg!” ❤️🤍💙

It is a tremendous honor to speak up about SPS, share my research, my life experiences, martial arts, & to show that life does not end with a rare disease diagnosis. My conditions have catapulted me to where I am today, an unlikely blessing in disguise. 🖤🤍🖤

I am where I am today, because of God's Mighty Plan & all the people in my village. Thank you all so much for being my people through the storms & the fair weather. Even when I am struggling to find the energy for the next daunting task, I remember all the people I have met across this world that push me to the next level. 💕

God willing, in a few years, I will be Dr. Meghan L. Bayer, Ph.D, LMSW, EMT-B. Although I will not be an MD like my dad, Dr. Bayer has always been the goal & I keep that EMT-B certification alive, because that is a part of the family legacy & my story. 🧸

🤜"Difficult doesn't mean impossible. It just means that you have to work hard."🤛



https://content.yudu.com/web/3s0lu/0A3thkp/S2022/html/index.html?page=7&origin=reader

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