Every once in a while I pause for a moment, take a step back, and look around me. After five years of illness and three years of living the life of a late stage lyme patient, the routine that I call “life” has come to be so familiar that I don’t often stop to think about how obscure it may seem to an outsider looking in. A few days ago, after arriving home from my weekly six hour jaunt to the doctor, I found myself unloading my bag of over 25 medications and supplements onto my designated medicine shelf in the kitchen. My eye caught a glimpse of one of the ingredient labels, which boldly asserted that whatever supplement it happened to be was a proprietary blend of bovine liver and ovine spleen, amongst other typically repulsive ingredients. Another sported a bright red label warning that it caused severe drowsiness and the user should not operate any heavy machinery, and that it may or may not cause kidney related complications. I didn’t even blink.
When I was finished unloading, I stepped back and peered around my kitchen. There were medications strewn all over the counters, and a cabinet sitting in front of me specially constructed to shelf my many bottles of pills. Purple “seizure-proof” glasses sat beside an overused blender on the counter, a spot that was often shared with a vegetable juicer. I knew the fridge beside me housed more produce than most people use in three months, and the cupboards around me were full of products all stamped with “gluten free” labels. Most folks my age would now run off to call up their friends to see if they wanted to meet up after class for a yogurt and a chat session. Me, I needed to lay down on the couch before I got back up to make a pot of quinoa. It’s been over ten months since I’ve been able to leave the house to do anything besides go to the doctor. I shook my head as I sunk into the couch, absorbing all of this. I sighed. “My life is weird.”
At this point, I could have had a pity party. Instead though, I smiled. I thought about how cool some of my experiences have been, despite how weird they truly are, and how proud I’ve been of myself for making it through some of the outlandish, yet astonishingly horrific things that have happened to me and to my body. I decided that this all doesn’t make me weird. I think it makes me a badass.
One of the coolest (and possibly weirdest, to some) things about this disease is that it has lead me to meet other patients from around the country that are fighting their own off-the-wall, but intensely treacherous battles themselves. I’ve heard some pretty harrowing stories that have left me reeling in both astonishment and admiration. Lyme patients are pretty badass.
While laying on the couch, reflecting on my journey thus far, I began compiling a list that illustrates why.
25 Reasons Why Being a Lyme Patient May Automatically Make You a Badass
1. While some people have a comic book collection or collect rare stamps, you collect infections, and happen to have more than a loaded petri dish.
2. You take more than 55 pills in one day, and can swallow 6-10 at one time.
3. When you fill out a “symptom survey” at the doctor’s office, you begrudgingly check off 47 of the 60 symptoms listed. If you were being completely honest with yourself, you’d probably check off 52.
4. You’ve opted to have a portacatheter surgically placed in your chest…while you were awake.
5. You’ve given so much blood at one given time that the nurse had to switch veins because the one in use “dried up”.
6. A surgeon has said “Oops” while performing surgery on you…and you were awake to hear it.
7. You’ve swallowed a camera, drank radioactive dye or have been injected with something that temporarily made you glow.
8. It has been proven that your stomach attempts to digest backwards, and food magically travels upward rather than down.
9. You’ve been able to fill an entire day with meals despite having more food allergies than you can count on your fingers and toes….and your mom’s fingers and toes.
10. You’ve peed just about every color of the rainbow, except blue.
11. You’ve juiced more than seven vegetables at a time, and drank it. You have the tomato seeds on your ceiling to prove it.
12. Your spleen and/or liver has blown up, much like an inflated balloon.
13. Most girls don’t leave the house without making sure their lip gloss is safely tucked into their purse. In your purse, you’ve got an epipen resting next to your lip balm and a mask folded up by your sunglasses.
14. Your liver enzymes have elevated to ten times what was considered within the “normal” range, and you never once puked.
15. You’ve had a head to toe rash which elicited a “whoa” from a doctor.
16. You’ve been diagnosed with a condition that nurses actually have to ask you how to spell.
17. You followed orders without question when you were told to shoot ozone in places where you never imagined it’d belong, or when you were informed to use coffee in a way that is rather unconventional, to say the least.
18. You find yourself tapping your finger to the beat of your heart palpitations.
19. You’ve had injections of liquid thicker than maple syrup shot into your stomach, thigh, lower back, or in regions you’d rather not disclose, and you didn’t even cry…or receive a lollypop.
20. You’ve blacked out in the bathtub or in the shower, and you didn’t drown.
21. You had your first colonoscopy before your grandparents had their first colonoscopy.
22. You’ve had an IV bag full of something that an average person would never even consider injecting into their veins, nor will they ever have to.
23. While watching Grey’s Anatomy, you realize that you have the same blood pressure as the patient who’s excessively bleeding on the screen.
24. Your heart rate has either been half of what it should be, or double what’s considered safe, but you still managed to get up and make lunch.
25. You’ve been sick every day of your life for more than four years and still manage to be optimistic enough, and brave enough, to wake up every morning and do it all again.
So if you ever find yourself feeling like an outcast, or “weird”, or as though your life belongs in a sci-fi movie, just remember that what you endure and the way that you have to live your life makes you both strong and courageous. And if you ever start to feel scared or unsure if you’re able to do this, just remember that you’re a badass, and that you can.
Candice — I’ve been there, too. And I have three simple words for you: Traditional Chinese Medicine. Really. We’re just guinea pigs to Western docs — the Chinese have been dealing with exotic infections, inflammation, parasites — you name it — for thousands of years. I hope you might consider trying it. ‘I got a guy’ in LA who’s making me well. Whatever you do, I wish you all the best.
Great article! I’m sending it to a friend of mine
Hi Candice,
wow, i’m impressed! i’ve been “sick” for over eleven years
after i got the *motherload* of Lyme and Babs on top of Mt. Tamalpais up in Marin County(i live in NYC- i was there visiting family).
unlike you, i was too shy and afraid(paranoid?) to blog about my illness. i even was asked to be a subject in Under Our Skin (my Dr. is in the film) and i turned it down. i was just too afraid. now, i regret that decision.
what you are doing is brave and inspiring.
hang in there. stay positive. you are a Star!
Tara
Your list made me proud of you and all other Lyme sufferers (especially my 14 yr old daughter!) and it made me cry at the same time. My dd has been bedridden for 17 months now.
CHARACTER is what you have and can be proud of. Suffering builds character. It’s the last thing you care about when you are suffering, but it’s true, nontheless.
:o)
Thank you for this! It’s the first time I laughed in a few days :)