1 year. 12 months. 365 days. 8,760 hours. 575,600 minutes. 31,536,000 seconds. In May 2016, my mom traveled to the Mayo Clinic in search of answers to my complex and mysterious medical issues. Upon arriving to Mayo, I was in bad shape. My weight was at an all-time low in the time I've been my adult height and I vomited my feeding tube, so no supplemental nutrition. So basically, my GI system completely shut down. Sitting in my wheelchair was extremely painful, because I was so thin, but what choice did I have? I was constantly drained of energy from the malnutrition and was deemed as failure to thrive. Regular headaches and migraines were a regular occurrence, often at the same time. That's a weird feeling, let me tell you. And the pain.... absolutely everywhere and so intense. Throw in the two seizures I had in the 2 weeks prior to leaving and you have a fiasco. There was a ton of other stuff going on too, but if I wrote that all out, I'd be here all night.
Neurologically, I was having the most severe and concerning symptoms I'd ever had, but I kept my mouth shut, because it was "all in my head". There was nothing wrong with me. Rightttt. No. After hearing that from the doctor, I flipped out on my mom and literally screamed that I wouldn't do any of the tests if he was going to go with the theory that nothing was going on with me. I don't know why, but I went through with all the tests. Little did I know that decision would be one that ultimately saved my life. One test that would have saved me that would have been done if it wasn't "all in my head". A CT scan would have potentially saved me from disaster by detecting the brain swelling, but it was never done until after I went into the coma. Too late. May 12, 2016, the world would learn just how stubborn I am.
Backtrack for a second. I almost didn't go through with the tests. If I hadn't done the tests, we would have flown back to Baltimore and driven home that Wednesday night. I would have been "sleeping in" on that Thursday morning. I probably wouldn't have made it to 10AM. See where this everything happens for a reason come in? Funny how that works sometimes.
My last memory from the period of May 12, 2016-May 23, 2016 are the fact that I was flaring horribly after all the tests, so I was watched Bones on Netflix all night and into the morning. I remember that I couldn't sleep because I was in so much pain. 3:30AM CST is roughly the point at which I don't remember anything for the next 11 days.
I'll continue this over the next couple of days. Let's just say there's no manual on how I'm supposed to feel one year post-Mayo "nap".
The post below showed up in my "On This Day" feed. I actually said that the night before. Famous last words.
To Be Continued...
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!