I don’t like to go into detail here very often when it comes to my health. You’re here for cool adventures and nerdy goodness, not to read about the fact that my body is broken. Aside from the unavoidable mention of it in my post about meeting Kevin Smith for the first time, I don’t think I really talk about it all that much here.
But I think it’s time I take a minute to explain my chronic illnesses and how my mortality brought about Wandering NerdGirl.
“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.”
In early 2012, my body decided it was time to die.
That sounds really dramatic and I like to agree and say “Yeah, and my body was being really dramatic” – but, it is what it is. One day I was fine. The next I was very, very mysteriously unwell.
Long story short: it took a year of tests and doctors and a complete change of how life as I knew it to figure out I had an autoimmune disease, and it had wreaked absolute havoc on me. One condition led to multiple conditions, including pain conditions.
A few months into being sick, while we were still unsure what was wrong, my mom and I decided to go to Florida to see Disney for the first time since I was a kid, and for our first trip to Universal to see the Hogwarts/Hogsmead area of Islands of Adventure. After all – I was very unwell, and we weren’t entirely sure that what I had wasn’t going to kill me. So we wanted to cross something big off the bucket list, ya know?
Some time later, after I had a diagnosis, the rheumatologist encouraged making sure I enjoy my life now, before everything gets worse. Be happy and do the best I can to have a good quality of life while young.
I started going to cons in 2013. I kept going on adventures. I tried to learn how to cope with the new limitations on my body.
But more often then not, every trip leads to some sort of problem. Like the 2015 con that I met Kevin Smith at – I passed out. My oxygen and blood pressure dropped. I vomited and fainted. I was taken out by paramedics.
More recently, in September, after coming home from Orlando, I was on bed rest for days because my body was wrecked. I have a condition where the tissue in my feet gets irritated and swells – it ended up swelling so bad halfway through the trip, the bottoms of both feet burst open. I had to bandage them and try to keep going. I have blood soaked into the bottoms of BOTH of my new pairs of converse. But not only that, I got ridiculously sick on the way home. I pretty much slept for days.
My years are marked by two things: what cool things I’ve gotten to do, and what hell my body has put me through.
I remember the cool movie premieres, adventures, restaurants, haunted houses.
And I also remember screaming from Trigeminal Neuralgia flares, imaging and blood work, biopsies, doctor’s appointments, surgeries, ER trips, being so brutally betrayed by my own body that all I can do is cry and beg those around me for help that they cannot offer.
Unfortunately, the state of my health has resulted in disability more recently. Because most jobs just do not care or understand that sometimes I spend weeks unable to eat, sleep, or talk. They don’t care that my immune system doesn’t work correctly. They don’t understand that a pain you are going through regularly would send them to the ER. Fatigue and brain fog and hands so swollen and stiff from joint pain and feet bleeding through bandages aren’t their problem.
But then that leads to people being judgemental about the things I try to do with my time, while not grasping the price I pay for my good moments. As I type this, I just came home from a short trip to Orlando for Christmas stuff with my mom. I am on the couch, one bandaged foot propped up, drinking Gatorade to replenish my electrolytes and napping off and on, trying to recover my body from just three days.
The medicine and precautions and self care required to do everything is never talked about. So, I think I’ll be doing a chronic illness travel tips and tricks post soon to better help people grasp what preparation is really like, along with hopefully helping others in a similar situation find ways to help themselves enjoy some adventures.
Just try to remember that people don’t always project all the bad they’re going through. They may post things are great every few weeks, and they days between could be nothing but struggle.
“In the face of such hopelessness as our eventual, unavoidable death, there is little sense in not at least trying to accomplish all of your wildest dreams in life.”
– Kevin Smith
Until next time, friends.