“God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
enjoying one moment at a time;
accepting hardships as the pathway to peace; taking, as He did, this sinful world
as it is, not as I would have it;
trusting that He will make all things right
if I surrender to His Will;
that I may be reasonably happy in this life
and supremely happy with Him
forever in the next.”
I’m going to be open up the struggle that I try so hard to hide from my friends and my family. I hide the pain. It’s an immense burden of how this has hurt my family and the many friends I have lost all the times. I have nearly died (multiple times)has left with them with severe medical PTSD.
You are a fantastic neurologist and who really wants to help me, so we are trying a new medication combo (which is good.) At least until we get the plasmapheresis started. However, medication takes time to build up and work so I would be going a few days without any effective treatment. This would leave me bedbound, unable to attend classes, go to taekwondb, go to my internship that or otherwise be a productive member of society. I wouldn’t be able to propel my wheelchair or write out my homework. I would lose everything that makes me met that I have fought hard to retain over the last five years.
It takes every bit out of me to do what I do each day. But every day I hit that alarm clock and get my day started, I know that there will be challenges and pain most people could never imagine along the way and that I will be fighting my body every step of the way. I’m not a quitter and I never have been. In fact, that’s what we joke has kept me alive.
I just don’t want to be discharge and then ending up having my parents or peers call for an ambulance because I’m not breathing again. Pain doesn’t scare me but that does. It’s not about me. It’s never been about me. It’s about everyone else. As long as I go through the motions of life, everything is “fine”.
I’m at a loss about what to do about my increasingly severe migraine. Treatment for my migraine was delayed over 12 hours which makes it much harder to treat. I know you said you aren’t a fan of DHE, but combined with IV depakote, IV Phenergan, it completely aborts my migraines in 48-72 hours with meds every 8 hours. I have zero side effects from it,
I know that I probably frustrate you as a patient, because I’ve heard that from every doctor I’ve had in the last 5 years except me one and they’ve said it to my face.
Please know that I am also coming to terms with being in a wheelchair 100% of the time for a year on November 12. Every day when I wake up, I attempt to wiggle my toes, even just a twitch, and try to move my ankles.
It’s taken me 25 neurologist and dozens of doctors all over the country to find out how to treat me and you, and my you are one in 1 millionare in 1 million and I appreciate the work you do for me, i’m sorry if I acted out of line yesterday I am just very concerned about the next two weeks especially and I hope you can understand why.
Can we agree to find a middle ground? I’m on a roll right now taking for gold medals at the national taekwondo championships in Orlando, Florida two weeks ago and taking another 4 gold medals at this past weekend’s regional tournament. I’m preparing to get my level 2 taekwondo Instructor certification. I’m about to get a promotion at work. I’ll going to be a senior in college in five weeks and I’ve just scored the internship of my dreams. I know you won’t find any of this in my chart, but I really try to make the best of life even when it’s not really fair, because life isn’t fair. I wish I could show you the Meghan Bayer that excels in life and not the Meghan Bayer that struggles to move, but that takes time.
I hear and understand your concerns but I hope you can see mine too.
With all due respect,
Meghan Bayer aka “kiddo”