You can call me "Meg"
My personal story
Life, Faith, Confidence
Welcome to Meg’s Miracles! My real name is Meghan, but everyone calls me Meg, and to be completely honest, I prefer it over Meghan. Meghan is just so formal and I am so… laid back as you’ll soon find out. I blog about a number of things; most notably my numerous medical conditions, but you will also find posts about “normal” college student shenanigans and adventures. Oh, and let’s get this out of the way. “Normal” is completely overrated and best describes a setting on the washing machine. There are crazy things that make the world think #OnlyMeghanBayer. It’s true. You just can’t make this stuff up.
My inspiration for starting Meg's Miracles is a deeply personal one and arose from my desperation as I laid in an ICU bed in December 2020 in the midst of an incredible, once-in-a-century pandemic. I remember laying in that bed desperate for relief from having my left knee twisted like a pretzel behind my back (my foot often touching my scapula/shoulder), both of my ankles dislocated by spasms and digging into the bed until numerous pressure ulcers formed, a partially dislocated left hip added to my pain, my back and abdomen spasmed so hard at the same time I thought something would tear, and my right knee was fighting my metal, surgical knee brace to go behind my back as well until it broke the hinge! My chest was tight as I fought for every breath I could get; even on the high flow of oxygen blowing through my nose while I passed out from pain from time to time. My face spasmed and contorted while my jaw locked up. Even my tongue twisted up. I was due for my biannual rituximab infusions, but those would take at least 6 weeks to work. I was maxed out on massive doses of benzodiazepines and other muscle relaxers that would stop a 300 pound man from breathing. Probably the worst part about it is that it has happened before and will happen again at some point because that is just life with SPS. My best shot is to find a better treatment and cure. As I progress, the damage to my body worsens and there is nothing we can do about it currently.
Occasionally, the night doctor would be merciful and allow a dose of Tylenol or ibuprofen to attempt to ease my muscle, joint, and nerve pain via my surgical GJ feeding tube with little effect to no effect. I was maxed out on a Precedex drip, but the pain was just too far ahead. I spasmed non-stop for 3 days violently and my left leg has remained in contracture since then. Full sensation has not returned to my legs and I am not sure how long or if the sensation will come back completely since I was literally twisted up for so long. It wasn't my first spasm and I would be a fool to think it will be my last, but I always hope for the day my legs will stop spasming 24/7/365. Unlike a lot of SPS patients, I do not stop spasming while asleep or even when placed on a ventilator. This disease is crazy sometimes!
I draw my strength from my faith in God and His Master Plan. I can calm myself by listening to Psalm 73 and significantly lower my pain. I know that God has called me to live an extraordinary life to glorify His Kingdom, as His hands and feet and I hope I can do that by helping to stop this devastating disease for myself and others. One day, newly diagnosed people won't be told this disease is "progressive and incurable". It will be more treatable and curable if we all do our parts to help out!
While my nickname is a part of the organization name, I recognize that this is all about God. Not me. Him. As a Christian, I believe I am called to live a life of faith and trust in Him. If I do that, pray, and study His Word daily, one day this won't another one of those chronic conditions with little to no hope of a cure. God willing, in my lifetime, we will find a cure. In that way, we can all do our part as God's Children to share experiences, raise awareness, and fundraise for the Johns Hopkins Stiff Person Syndrome Center, the only outpatient treatment center for SPS in the world. As one of my favorite bands Casting Crowns says, "I don't care if they remember me. Only Jesus."
Pediatric onset SPS rocked my world at the end of August 2012. My immune system has managed to "slowly destroy" my body at any time over and over. Most recently, I was diagnosed as a Type 1 diabetic (which is the autoimmune form of the disease). I wear a Dexcom G6 CGM (continuous glucose monitor) to tell me what my blood sugar is 24/7. When I go extremely high (hyperglycemia) or extremely low (hypoglycemia), it lets my receiver or phone know to check my blood sugar. It is especially helpful in keeping me safe and healthy from potential long term complications.