Thanks for stopping by! I’m Tisheena. I live in Las Vegas. I’m a bookaholic, outdoor fanatic, mom to a four-year-old with a shoe problem. (I have the shoe problem, not the four-year-old.) My greatest loves (besides the two I live with) are backpacking – any form of camping really – and running. And horseback riding. And canyoneering. I’ll stop. I’m also an alien. Okay, not reeeally, but most days I do feel like some kind of extraterrestrial being not biologically equipped to survive on this planet.
I have chronic Lyme disease. Lyme happens when tiny bacteria from a tick bite infiltrate your body. They can decide to live in your joints, your muscles, your heart, your brain… Good times. Lyme bacteria are super stealthy and can change shape (sound similar to another sneaky attacker you know?) to avoid antibiotics. So even though I was diagnosed and treated when I was 6 years old, mine stuck around for the long haul.
Fast-forward 28 years, countless doctors and specialists, probably twice my total blood volume in lab work, a plethora of EKGs, two brain MRIs, and a wicked tremor in my left hand… to this past November. I was spending my Thanksgiving camping! (My boyfriend’s family tradition. Seriously, why hadn’t I thought of this before?? I knew he was a keeper.) I was also hooked up to an IV for two hours a day, taking antibiotics directly into my heart through a PICC (peripherally inserted central catheter) line. In the middle of Death Valley. Feeling like an alien who needs a special serum pumped straight to the heart every 12 hours in order to survive on this planet.
That right there tells you a few things about me.
- Not even Lyme disease can stop me from camping.
- I might actually be an alien.
I have the most awesome support system in the entire world. It is no small feat to take your girlfriend camping in the middle of nowhere (my favorite place to be) when she needs an IV rig, bags upon bags of liquid medicine, saline, heparin, syringes, gloves, and alcohol wipes. And coffee. Don’t forget that. I have family and friends who, over those 28 years, have written notes for me during class when my hands weren’t working, listened day after day when everything HURT and I felt like all my bones would shatter, gone with me to doctors’ appointments, driven me to infusion appointments, sat with me for hours during treatment, knitted me PICC line covers, done research with me on alternative therapies, brought me groceries, done my dishes, played with my kid. I would not be here without them.
That last part might sound dramatic, but it hits at the terrible truth of this disease. More awful than anything I’ve told you so far is the fact that even with a positive diagnosis (and I’m lucky in that regard; because current testing methods are unreliable – something we hope to change with your help – something like 30% to 50% of people who actually have Lyme can’t even get a positive diagnosis that’s acceptable to insurance companies), it took 24 of those 28 years to get treatment for my chronic symptoms. It wasn’t until those little bacteria ninjas decided my brain was a good place to check out, until my heart started trying to jackhammer out of my chest to find better accommodations, until my hand started shaking so bad that I couldn’t hide it anymore. It wasn’t until then that I was finally able to get medical help. Twenty-four YEARS. While the disease itself is not exactly a day at the beach, it’s the unreliable testing, the controversy over treatment protocols, and the limited research funding allocated to Lyme that are the bigger issues. This disease is not well understood and patients can endure years or decades of agony before receiving any type of treatment, if they ever do. Sometimes they don’t make it at all.
Since I had my PICC removed in December, I’ve turned back into a human been in remission. #fingerscrossed #notaboutthatalienlife
My story is full of struggle. There is no possible way to convey the enormity of it in the brief (obviously we’re beyond the brief at this point, but I’m trying to wrap it up, promise) space I have here. One reason I love running (and backpacking) is because of the parallels I see between those challenges and my own life. I won’t get in too deep; that’s a whole other (brief not brief) post for another day. What I’m trying to say is that (I mean, I don’t know about you guys, but…) running is also full of struggle. But it takes you some pretty fantastic places. And you meet beyond amazing people who are with you all the way. And from that struggle comes strength. Strength to do things you thought you couldn’t. Strength to find a way when you thought there wasn’t one.
I just love that idea. The idea that a group of people can be greater than the sum of their parts. That together our impact can be exponential. That’s what this event is.
I’m calling all Lymies, Lymie lovers, people who don’t know what the heck Lyme is, runners, walkers, hikers, bikers, tricyclers, you name it. Get your body (or request another body to do so in your honor if you’re not well enough) through a 5K by any means necessary during May for Lyme Awareness Month. Are you on some kind of team? Even better! Get everybody out there! Are you already registered for a race in May? Feel free to double dip! Our goal is to get people talking about Lyme disease by being creative, having an awesome time, and looking good while doing it (that means wearing green)! And in the process, we want to raise funding for the National Capital Lyme Disease Association so they can continue to provide grant money for research and be our voice for Lyme. What are you waiting for?! Let’s put the squeeze on Lyme!