*Originally published 3/4/13*
This last month hasn't been very good. After the last cycle of treatment I just haven't been able to get back to feeling good. I've been in a lot more pain and all of my other symptoms have heightened as well. My tremors, which seemed to be getting better, have come back in full swing. Randomly my hands will just start shaking and I can't do anything about it. It's sad that I've gotten used to it. My head pain, which is what started my whole Lyme journey, has come back making it hard for me to lay my head on a pillow and even wear my hair in a pony tail. My other joints have also started to hurt more. My elbows, fingers, knees all hurt and swell everyday.
The people around me don't really know that this has been happening because I've gotten so used to it I just don't even care to tell anyone. When things are really bad I tell my parents and my Lyme friends. I feel bad burdening my parents with my pain but I just need them to know so they can see if I am getting worse or better. A few weeks ago I had a breakdown. My sister came in my room and asked why I was crying and I said: "I keep climbing this mountain and every time I get to the top, I trip and fall and have to start all over." Since November, I have cycles where I will feel really good for a little while, but then I just herx and I can't really bounce back from the herx. When I went to my LLMD a few weeks ago, I told her my mountain scenario. She agreed that I hadn't progressed since I last saw her. She decided that the next step was to fully detox me and start up fresh with a harsh course of antibiotics to get me over the mountain. So I started the detox week. She told me that the new detox medicine would make me herx. I thought I could handle it but I couldn't. After just 2 days I was begging my mom to put me back on my antibiotics. She emailed my doctor and they gave us the go ahead. The major issue is I need to detox for the medicine to help me, but I can't because the herx makes it impossible for me to function. I need to be able to function, especially for school.
Within the last month I have noticed that my memory loss has gotten worse. I will be mid sentence and stop and have no clue what I was talking about. This is not helping me in school. Last week I was writing an essay and realized that I was not even answering the question and I couldn't remember what I was supposed to be doing. Then I had to take a science test which I ended up getting an E on. I stayed home on Wednesday last week because I didn't feel good and I tried to study for my test but I couldn't get the information to stick in my brain. I'm also getting worried about how my brain issues are affecting my future. I am a junior in high school and I need to take my SATs. I don't think I would be able to get a good score on the test because of how long it is and because I won't be able to focus and remember things. I am also learning to drive but sometimes I forget things, like right of ways and blinkers. I still haven't taken drivers ed, but I don't know when I will do it. I keep pushing it back because I'm afraid I won't be able to make it through the classes. I could do it in the summer, but my summer will probably have to be spent in bed trying to beat this awful disease.
I've learned not to get my hopes up with Lyme. I keep thinking about all the things I can do when I'm healthy again. But each time I feel bad it makes me more depressed about how far away those things are for me. At the beginning of the school year we didn't think I would have I do an abbreviated schedule for the second semester, now I think I'm going to have to have one next year as well. When I was diagnosed I didn't imagine it taking this long to reach remission. I can't believe that I have been battling this for almost 2 years and have had this blog for a year. I never would have imagined it taking so long. I would not be able to get through this if it weren't for this blog and my lymies. My Teens with Lyme Facebook group has 131 members and counting. We are all part of this family and we rely on each other for love and support. When I'm having a rough day, I talk to my lymies and they make my day better. We help each other with Lyme related things but also normal teenage things as well. My lymie girls and I have had our group message for 7 months now and we still continue with it everyday. You don't know true friendship until you've been having a conversation with someone for 7 months straight. These girls know more about me than anyone in the world. They can relate to me in a way that no one else will ever understand. They are my rocks and I love them with all my heart.
Tonight we watched Dallas Buyers Club. Watching this movie really put into perspective how awful the world is for chronically sick people. It shows how corrupt the FDA and the CDC are. In the movie, which takes place 30 years ago, the man has AIDS and like lymies, can't get legal treatment. He obtains treatment illegally, which is pretty much what lymies have to do, just to stay alive. The FDA doesn't listen to the AIDS patients when they say they have treatment that is helping, which is a feeling all lymies can relate to. The CDC has been killing people with chronic diseases for over 30 years and they will keep doing it until they are stopped. The CDC stands for Center for Disease Control but what it should really stand for is Center for Death Certificates. If people don't take a stand, more innocent people will die. We should be able to get the treatment we deserve without having to waste what little energy we have fighting for it. #biteback
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