* TW:// suicide.
About three years ago, at 24 years old, I had my first anaphylactic reaction to food. Then the next day, it happened again. Two weeks later, it was happening every single day to absolutely everything I had consumed. The reactions began to leave me in the emergency room and my coworkers were constantly watching what I was eating. My body began to have adverse reactions to things I could smell, the water from my shower and anything that would come in contact with me some way or the other. Doctors didn't know what was going on. One physician refused to see me in the office and sent me away to the emergency room, even though it wasn't a life or death situation. I was lost and no longer had control over my own body. This led me down a really dark path of mental health issues and depression. What do you do after you lose control over the one thing that is solely yours? If I didn't have my own body, what was the point of living? People doubted my reactions until I had just so happened to stop breathing in front of them. Their doubts became mine and I struggled with the thought of everything happening not being real. Not only did I have no clue what would cause my body to go into attack mode, I don't even know what's real and what I'm manifesting in my head. Of course I knew these things that were happening were reality, sometimes. Kind of.
After years of tests and procedures, multiple doctors and enormous bills, I finally got a diagnosis. Actually, I got a lot of diagnosis' and still on the path of testing for more. Even though it feels like a book that has no end, my medical journey is something I feel like sharing with everyone. I had searched the internet looking for stories and people to relate to, research to bring to my doctors, and I barely found anything. If I couldn't find anyone or anything, I was going to become someone's resource myself. Fuck this, because if you're going through anything, I will hold your hand. Nobody deserves to go through life like I had alone.
At this moment in time, I have gotten diagnosed with the following:
Polycystic Ovarian Syndrome (PCOS)
Premenstrual Dysphoric Disorder (PMDD)
Small Fiber Neuropathy
Postural Orthostatic Tachycardia Syndrome (POTS)
Idiopathic Environmental Intolerance
Eosinophilic Esophagitis (EoE)
+ a variety of food, medication and fabric allergies
I've adapted to using Notion to keep everything organized in my life, including my health journey. If I didn't digitalize this, I'd be carrying a binder to each appointment. - If anyone would like to see how I keep it altogether, just let me know!
The things that I can keep routine is how I keep a handle on all of it. Although, I have "lost control" over my body, taking control over the little things in life has made life a little more bearable for me.
Essential oils are nice to keep in a diffuser and my dog loves them. The scent is never strong enough to trigger anything for me, but I keep it in another room just in case.
Since shaving my head, I've had less fainting spells in my shower trying to wash my hair.
Yoga has helped the pain I feel in my body, but my fingers and feet still tend to lock up on occasion.
I keep a cane next to my front door for the days that I barely have balance.
On a daily basis, I always have at least one reaction that results in hives on my body and becoming itchy, I have a joint that locks up, I lose my balance and fall, at least one migraine (usually first thing in the morning or around lunch), I become too dizzy and fall, something touches my skin and it becomes an intense pain that I need to take medication for, intrusive thoughts are taking over, a noise or something visual leads me into sensory overload, I stumble over all of my words, and I usually forget what I'm saying in the middle of saying it.
Flare ups do happen every so often, more so than I'd like. On those days, I tend to stay in bed, if possible, and sleep as much as I can. The heating pad becomes my best friend and the only time I can manage to get out bed is to let my dog, Daisy, outside. Those are the times my reactions are consistent and more intense than usual. The flare ups could mean intense cramping, joints locking up, vomiting, fainting, etc, basically anything my body wants to do that day.
I get really uncomfortable if I'm having a bad flare up when I'm with people, though. Since having so many people doubt my illnesses, I don't want to draw attention to myself. I'm constantly questioning myself and trying to "fake it" better, if that makes sense. So I know that if I were to be doubted by anyone else during those days, it would lead me into another depression. Because I promise you, nobody ever wants any of this to happen them. If I could make it all stop, I would.
There are many more symptoms and things that I deal with that I plan on sharing. I just wanted to give a brief overview on everything, as I know this is already a lot.