*Originally published 1/28/14*
The holidays are always crazy in my family, with Christmas and 6 birthdays within a week of each other, but this year was a little more crazy due to my sister getting engaged, my 16th birthday and our first Christmas without my grandma.
Throughout my whole winter break I was feeling pretty good. I was able to hang out with my friends and goof around and not feel bad later. Towards the end of my break my off week from medicines started.
The last time I had gone to my doctor she decided that I would do 6 weeks on antibiotics then do an off week, trying to see if I would respond better in the off week this time and I did. I almost forgot I had a disease for a little. I was sleeping better and able to do things, I was still in pain, but not a lot. However, towards the end of the off week, things took a turn for the worst.
It started with really bad insomnia. I took several different sleep prescriptions and it still took hours to fall asleep. Then the pain worsened. This happened to be right as the last week before exams started. I missed Tuesday and Wednesday that week. On Wednesday, I did not make it out of bed until 4p.m.
On that Tuesday though, I went to my appointment with my Llmd. She could see that I was definitely not feeling well, but she also said she could tell I was doing way better than I had been doing. After telling her how good I did on my off week she offered up that o try IV Rocephin to try to push me over this last little hill, but that would be $900 a week. After that was knocked off the list, the head doctor and her sat down for 20 minutes, mapping out what to do with me next. They are keeping me on my same antibiotics, just upping some of the dosage. They also took me off Ambien and put me on another muscle relaxer to help me sleep. I am doing the 6 straight weeks of antibiotics then the off week, then going back to see how I am doing.
The Monday after my appointment was the start of my exam week. Luckily, I was able to receive special accommodations on my exams. I took one exam each day and they didn’t start until 10 a.m. so I was able to sleep in. Out of my 4 classes, I ended the semester with 3 A’s and 1 B. I’m just glad that I only have one more semester left of this school year.
I’m lucky I finished my exams when I did, because I have not been doing well at all. Last Friday, my voice was gone and my stomach hurt so bad I couldn’t eat anything. I ended up getting sick in the middle of the night. By the following Wednesday, my stomach still hurt and I could barely eat anything without crying out in pain. On top of my stomach pain, my nose was stuffy and my throat was sore, too. It looked like I had a common cold, but I don’t; it’s just because I am toxic due to my Lyme. When the medicines kill off the spirochetes, toxins are released, but they have nowhere to go so they get stuck in my body. It’s very aggravating not being able to breathe all the time.
I know that there are many people who are worse off than I am and that everyone is trying to help me as much as they can. Many of my Lyme friends can’t actually go to school; they have to do homebound or no school at all. Many have to deal with people not believing they are sick and telling them they are crazy all the time. That’s hard for anyone to hear, but especially teenagers.
If I had gotten Lyme later in my life, my experience would be so different. For teenagers with a chronic illness, you have to deal with ordinary teenage things like boys and friends, on top of illness things like doctor bills and constant pain. As an adult, I imagine Lyme is still hard because you have to deal with parenting and work, on top of fighting a chronic illness.
No matter how you look at it, Lyme is horrible. But 2014 is the year that the Lyme war, both inside of and outside of me, change for the better! It all starts with a little faith. I have to have faith that I will get over these last obstacles and find remission. I also have to have faith that people will stop pretending that Lyme disease does not exist.
Lyme disease does exist. I am living proof, along with my 300,000 other Lymies. If people keep looking the other way, that number will just keep growing and growing. It’s time for people to face the facts that Lyme is out there. In your front yard, on your pet, your favorite trail and maybe, you.
Lymies are the strongest people I know. Every day is torture, yet we keep fighting on. Like Winston Churchill said “’If you’re going through hell, keep going.” And that’s what we intend to do.
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