My story starts back when I was thirteen and I was diagnosed with Lyme disease. I was a healthy, athletic child who suddenly found herself in a wheelchair and in constant body-wide pain. For the next three years I couldn’t walk, and much of that time was spent in bed, out of school, and desperately fighting for my health. But this blog isn’t about that. During that time I had my parents to rely on. It was my mom who counted out my pills. Who spoke to my doctors. Who figured out my treatment protocol. I just went along for the ride. However, if you’re interested in learning more about that time of my life, check out my mom’s book When Your Child Has Lyme Disease: A Parent’s Survival Guide.
(Also, Here’s a video I made for MyLymeData. It shows more of my early Lyme journey.)
This blog is about now. See, after I started walking again at seventeen years old, my health significantly improved. I still had Lyme, and kept being treated for it, but I was able to graduate from high school, go to college, and graduate with high honors. Then I started grad school in a building that contained toxic black mold. Within four weeks of the program’s start, I had dropped out and found myself in a downward spiral. My Lyme flared up, and all these scary symptoms from the mold started appearing. I came back home for a while, and with the help of a mold specialist, got my health going in the right direction again.
That’s when I stumbled upon an unexpected job opportunity. I became the aide to a Deaf boy in a behavior classroom. I loved it. I got to put my many years of learning American Sign Language to good use, and it was a really wonderful experience. Unfortunately, there was also mold at the elementary school, and since I was still in the middle of my mold treatment, it rapidly switched from being a good thing to a bad thing. By the end of the school year I was so weak I could barely lift my arms. Signing was nearly impossible. My boyfriend had to put my hair up in a ponytail for me and do all the cooking and cleaning.
A few days after school let out for the summer, I was on a plane home to see my parents. We all went to my mold specialist together and it was then we learned just how drastically things were about to change.
My doctor explained how being exposed to mold, any mold, while on treatment, will completely derail it. (As I witnessed first hand) He said that if I wanted to truly get better, to the point where I could go back to my job, I’d have to stay completely out of any building that could possibly have mold. He said 9 months would be the very earliest I could return to work, if everything went as planned. This meant that for a good portion of the next year I wouldn’t see the inside of a grocery store, pharmacy, restaurant, or anywhere we hadn’t gotten tested.
This came as a real shock, but I had seen for myself how dire the situation was. I decided to do whatever it took to get my life back, even if it meant putting it on hold for a year. And that’s exactly what I did.
For those who prefer audio over text, I’ve recorded myself reading this post here:
July 20, 2016 at 7:45 am
TO my new found friend. I love life and the gifts it brings!
This is so awesome! Rachel I am so proud of you! Keep on blogging, you have a heart of gold and a story to share!
December 2, 2016 at 5:14 pm
I just got the same directive last week. I have to find a safe enough place to live, though. A million years ago I was briefly a teacher of the hearing impaired. So I’m curious how or why you had learned sign language?
December 2, 2016 at 6:33 pm
I started learning ASL in elementary school, and then did college ASL courses in high school. It’s just always been something I’m interested in. 🙂 I’ve worked at a few Deaf programs, and I love working with Deaf children.
January 2, 2017 at 6:22 pm
What a small world, I also have Lyme/Mold and am a speech/language pathologist (currently on medical leave). I wonder if there is Mold in my schools, probably…
January 2, 2017 at 6:34 pm
It’s worth checking the building you spend the most time in at work. My mold specialist always has me do a test through Mycometrics when I’m going to spend a lot of time in a new place. This is the website: https://www.mycometrics.com/ Sorry to hear you’re currently on medical leave while dealing with all this craziness.