In a surge of enthusiasm, I uploaded my first post without much consideration of the fact that it has no real introduction to the blog or myself. Since I have always jokingly said that I should tattoo “OUT OF ORDER” to my forehead anyway, I guess this is as good a way to begin getting to know me as any.
OUT OF ORDER — Part One
The concept of an “Out of Order” tattoo really stems from the mess that is the state of my general well-being…or lack of well-being. I’m pretty poor off to be honest. My body and overall health have been out of order for as long as I can remember, coming to a real head when I hit middle school and could no longer complete an entire week of school attendance due to debilitating pain and hours spent on the toilet. We had known forever that something in my guts was off, but my pediatrician assured my mother when she asked him about it quite specifically that “kids don’t get Crohn’s.” When I was diagnosed with Crohn’s Disease the summer before I started high school, I tried really hard to forgive that man for the years I spent missing out on baseball trophy ceremonies and shitting my pants at friends’ houses.
After that, the diagnoses kind of just kept coming. We got my Crohn’s under control only for my joints to begin causing problems followed in close order by my muscles. The next diagnosis to come was chronic migraines. I had also always struggled with my period, so it was no surprise that my ovarian cysts were paired with Endometriosis. Then, the summer between my Junior and Senior years of high school, the doctors noticed that my resting heart rate was between 140 and 160 beats per minute and would spike to over 200 when I stood. I was quickly diagnosed with Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia. Around that time, I started having pseudoseizures in addition to everything else, and I was getting infections in my body that only people dying of AIDs should have despite the fact that my immune system is stronger than everyone else’s due to all of my diseases being auto-immune. Anyway. I was a medical mystery. None of my doctors knew what to do with me. So they sent me to the Mayo Clinic in Rochester, MN.
That was quite the experience. My mom and I were at the hospital up there for a month, and we learned a lot but not anything life changing. They told me that I have an asymmetrical hippocampus, which explains some of my memory, concentration, and communication difficulties. They also told me that I have Fibromyalgia and explained that Fibromyalgia is a real thing that they’re doing real research on now–not something that doctors tell their patients when they need to validate pain but can’t find anything wrong with them. We did a class on managing life with Fibromyalgia–or Central Sensitization Disorder–and we came home.
I went off to college (more about that later), and I was doing really well for a long time. My joints started popping out of socket at some point last year, leading to a clinical diagnosis of Ehlers-Danlos Syndrome, but shit really hit the fan again when I ended up in the hospital last April. The hospital I went to was incompetent, didn’t know my medical history, and gave me a lidocane patch for a pulled muscle in my back. It’s fine. I didn’t die. I now know that what really happened was I went into adrenal crisis because it happened again in October of this year–still a very sore subject, not ready to talk about it, stay tuned for a post later. While I was in the hospital in October for adrenal failure, I was also diagnosed with three different types of migraines because I’m just that cool: Hemiplegic, Ocular, and good old fashioned chronic migraines.
All of this is to say–I’m totally Out of Order, but it’s all good. I’m doing the damn thing anyway.
Diagnosis Be Damned 