I am ticked off. Why, you ask? I have Chronic Lyme disease. Note, the pun was intended. And yes, despite your doubts and the ignorant scrutiny of the majority of the medical community, it does exist. And as as if this one demon was not enough for one person to handle, I have two co-infections, Babesia and Bartonella, creating a terrible trio. They are waging a coordinated battle against my body and despite the warrior I try to be, they’ve been winning.
Can you understand why this has taken over my life? Do you realize that I am existing in a fragile battleground that is damaged further with every passing day?
I don’t know exactly when this horrid disease entered my body. Believe me, I’ve wracked my brain trying to find it, to pinpoint the moment it all began. Replaying my decisions, remembering every jump in the leaves, every hike in the woods. I ask myself, was there something I did wrong. But there isn’t.
I was just living my life. And what could be wrong with that?
I went from a budding college student just beginning to discover the world and feeling like I might possibly somewhat have a little bit of control over my life. And then Life said, “Fuck you,” and tossed a shit ton of angry spirochetes in my face.
The disease is so underestimated and misunderstood, even I didn’t realize the painful and long
lasting effect it can have, how far its reach extends. So many myths, misconceptions and stereotypes, it can be hard to establish the truth. Not everyone gets a bullseye, it is really fucking difficult to test positive (thanks a lot CDC), and two weeks is not long enough to rid you of this illness.
And so when the pain reaches unimaginable heights and the symptoms continue to appear, you realize you have entered into this battle unarmed. No one tells you how much this disease will destroy you, the moments you think this is what death must feel like. You aren’t ready for the isolation or the dark storm cloud that will become a permanent fixture above your head. The nights you will cry yourself to sleep and scream at the heavens, “What the hell did I ever do wrong?”
And soon you become part of this vast community that suffer in silence, quieted by other’s doubt. We fight hard enough for our health and our lives, and won’t waste what little energy we have left on the skeptics.
Some call us liars, say we are making it all up. But who would choose this life? Why would I want to do battle against my body? Why would I want to swap college courses for doctors visits? Do you think it’s easy to know that I will have to face this monster for the rest of my life? It’s embarrassing that I can’t shower without assistance and binge watching House Hunters gets old very fast.
I’ve been wary about posting, sharing my diagnosis and my fight with the world, afraid you would not understand my intentions. I’m not looking for your sympathy. I’m not hoping for pages of comments that read, “get better soon”. Because I won’t. I’m looking for awareness. I’m demanding that the whole story be told. That those two weeks of antibiotics are actually 5 months and counting and that I haven’t eaten sugar in 6.
You want the truth? Here are some numbers:
- 8.5- months with symptoms, the length of time I have spent feeling like I’m on a boat for the entirety of everyday
- 10- blood draws in the same amount of time and since I get tested twice a month, this number is sure to grow
- 3- trips to the emergency room, during which I was put on a heart monitor and was once offered psychiatric evaluation and treatment
- 4- times I have tested negative on the Western blot
- 40- pills I swallow in a day (of which 11 are prescription)
Lyme disease has led me to things and treatments I never would have considered before. I take baths to help detox even though I can’t stand soaking tubs. I once had an aversion to needles. This fear has since been thrown out the window as I attempted acupuncture and now have a constant IV in my arm. The point being, Lyme changes everything. You become a person you don’t recognize and kick and punch and throw everything but the kitchen sink as this thing, just hoping something will stick.
I guess I was inspired to write something now because I didn’t want you to get the wrong impression of my diagnosis or current life. That it’s so insignificant that I would just casually mention it in a Facebook post. That contrary to what some have inferred, I am not just living in my parent’s basement unsure of what to do with my life.
Yes, on Tuesday, I forced myself from the couch to the polling station to cast my vote. I did so with extreme anxiety, in my pajamas, with a wheelchair in the car just in case. Because as I mentioned, I have missed out on much of life for the past 8 months. And I’ll be damned if this was going to be another event I let go by. But it was not as easy as 1, 2, 3 and by advertising that I went, I was not trying to minimize the strength it took to leave the comfort of my house and the magnitude of the battle I am facing. It is far from over.
Here I am again letting my voice be heard. And I’ve decided that as long as I can, I will continue to speak from this hell I’m in and attempt, in some way, to help you understand the place I’m in, the difficulty of the fight and remind you to treat us Lymies with respect and love.
The truth is, you will never understand until you have fought this battle for yourself. And I hope to God that day never comes.
No comments:
Post a Comment