*Originally published 10/30/13*
This last month has been full of ups and downs. I will admit that at the beginning of the month, I was feeling better than I have been. I was actually getting good sleep and making it to most of my classes. I also managed to dress up and participate in my homecoming week, but I didn’t go to the dance. Each year during our homecoming week there is a powder-puff football game. I did it when I was in 9th grade, and had so much fun. Last year I just stood on the sidelines and watched because I wasn’t healthy enough to play, and sadly, that’s what
I did this year. Hopefully I will be able to play next year.
2 weeks ago I went to my LLMD to get blood drawn so the results would be back for my appointment. While I was there we decided to try IV glutathione. Glutathione is an antioxidant that is known to give people energy and make them feel better. We did the drip but it took a few days to kick in. That Friday, however, I took a turn for the worse.
While I was at my high school’s football game I started getting really tired and the pain I was feeling was excruciating. I ended up having to leave the game early and spent my weekend in my living room with my heating pad and remote. That Monday, I started my off week from my medicines and I was unable to get up and go to school. I ended up sleeping for 15 hours, only waking up once to eat breakfast. That night I had horrible insomnia, didn't fall asleep until 2 a.m., and was unable to go to school Tuseday either. On Tuesday, I had my doctor's appointment to see how my first month of treatment went.
We told my doctor how bad I was doing, and she decided that I needed to skip my off week and go back on my antibiotics. She said that I was supposed to feel better on my off week not worse which meant that I wasn’t on the right dose of medicine. So, she traded one of my old antibiotics for a new one and also added an herb and some other supplements. While we were there, we did another glutathione drip and I think truly it helped.
Last Friday I was able to go to the football game and make it through the whole game. On Saturday, I went to my grandparents’ house with my cousins. I was able to help make dinner and still be able to function afterwards. My Grammy, my cousin and I had a girls' night and watched movies, and I felt fine. I ended up having to sleep with my Grammy because I had bad insomnia and kept having horrid coughing attacks. But when I woke up the next day, I was perfectly fine. My cousin drove me home and on our way we put down the windows, turned the radio up and belted out songs. It was the most fun I’ve had in a long time; the Old Cassidy was almost there. Monday, the feeling good continued. When I got home from my full day of school, I did all my homework (which rarely ever happens), cleaned my room and played the piano, which I haven’t done in a while. Sadly, though, the feeling good had to end.
Yesterday, I had 3 tests and by the time I was finished the first I was done for the day. I managed to make it through my other 2 tests, but had to leave right after I finished the last one. I’m hoping I feel better today and that I can make it to school since this week is the last week of the quarter and I want to make sure all my grades are good. I also am hoping to feel better since Halloween is tomorrow.
We always have a haunted house in my garage every year for Halloween, and my friends and I are in charge of it this year. They are coming over today to help set up and then are sleeping over tomorrow night. I want to be able to have fun with my friends and not have to be the sick girl on the sidelines. With Halloween comes candy, and because I'm on a sugar-free diet, it's my worst nightmare. Being sugar-free is probably the hardest thing I have ever had to do. You don’t realize it, but pretty much everything has sugar in it. I want some grapes. Nope, they have sugar. I want some spaghetti sauce. Nope, has sugar. I want some regular dressing on my salad. Nope, has sugar. It’s terrible! But what’s worse is not being able to have my ice cream and chocolate. It is almost impossible to find sugar-free ice cream and the closest place around here that has it is closed for the season. Just to add to it, you can’t get sugar free hot chocolate anywhere either. BUt even though the sugar-free diet is hard, I know it will help me get better quicker, so I have to keep storming on.
We all have to keep storming on.
The past couple of weeks have not been easy on most of the Lymies I know. 3 of my Lymie friends were in the hospital over the weekend because they were doing so poorly. Everyone I talk to is in so much pain and so tired and just wants to give up. Sometimes I want to give up. But I know I can’t. If I give up it’s letting the CDC, insurance companies and the Lyme win. None of those things should ever be allowed to win. The only people who should win this war are us Lymies. We should win this battle that is going on inside our bodies. We should win the battle that is going on outside our bodies as well.
I still find it hard to believe that people still don’t know the truth about Lyme. I know it is scary to think, but Lyme disease is the next big epidemic that is going to hit the world. It has already started. And if people keep ignoring it, it is just going to keep spreading and more people are going to fall victim to this life-altering disease. Doctors need to stop lying to their patients, and themselves. Almost every Lymie I know was misdiagnosed at least once before they finally foudn out they had Lyme. Many of us were diagnosed with Fibromyalgia, or Chronic Fatigue Syndrome. In my opinion, it seems that these are the easiest diagnoses to decide on, because doctors don't always know what to do with Lyme Disease. People, including medical professionals, are afraid of the unknown, so they don't bother to try and learn more. Many doctors keep saying that Lyme is only spread by tick bite, which is not the case. Many of my Lyme friends got Lyme from their mom during pregnancy. Symptoms do not always start within a week of having been bit, and don’t always start with a bull’s eye rash. I could have been bit anywhere from 5-10 years ago, and didn't show symptoms until April 2011. The truth about Lyme disease is scary; I know because I am living it.
So even though we are tired and feel like this war will never end, we have to remember that someday the world will realize we exist and fight alongside us. Awareness is the key to winning. The more people know the better. Lyme has taken my life and changed it so drastically that I don’t think it will ever get back to how it used to be, but if I can help it, I will help others so that less and less people have to suffer from this disease.
*This is the link to my sister's blog in our local paper. She wrote about chronic illness. She is the best sister in the world and I love her with all my heart! Please read and see how wonderful she is. http://blog.fredericknewspost.com/blog/2013/theres-no-place-like-maryland/chronically-caring/
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