*Originally published 7/23/13*
It's been a few days since I've posted, so pardon the subject jumping!
Feeling good was pretty regular until recently. I got back from New Jersey and had one bad day, then I was fine. The past 4 days I have been in Pennsylvania with my friend and we did a lot of activities. Last summer I wouldn't have been able to do things we did like canoe but I did it this summer! That shows that I am getting better. But today I got home and automatically just started feeling terrible. My joint pain, shaking, heart palpitations, and extreme fatigue all hit at once. Good thing I was going to the doctor. Or at least I thought.
Last time I went to my doctor, he decided he wanted me to have a sleep study, so I had one lat week. I don't know how much I actually slept with all the electrodes hooked on me, but I got my results today. My results said that my sleep architecture is bad; I wake up a lot and I do not go into REM sleep. The good news is, I don't have sleep apnea, but we don't know why I don't go into REM sleep and wake up all the time. My doctor is sending me for a second opinion because he thinks the Lyme is in my brain. If the Lyme is in my brain, I have to start IV antibiotics. So now I have to go to another doctor who doesn't take insurance. It's sad that the people that want to help and can help also hurt us because the insurance companies won't pay them.
Which brings me to my next topic: Lyme politics. Recently I was awarded an Official Citation for my work with Lyme Disease through social media. Along with this, I was asked to walk in my town's parade with the delegate who awarded it to me. While at the parade, I walked with him and a fellow senator for my region. She talked to me about my Lyme and said she is very interested in the Lyme debate, especially in Maryland. I read something today that said that Maryland has one of the highest percentages of reported cases of Lyme. If they can admit that there are actual cases found how can they say its not a real disease?
There's one finaly topic that has been on my mind lately. Recently, a number of Lymies have passed away. As a fellow Lymie, it gets me thinking about death. I know I am not near as bad as those who have passed, but still, it gets you thinking about the fact that you have a disease that is fatal for some.
Lyme has made me realize how you are supposed to live your life. Life is not about who's the prettiest, or the fastest, or the strongest. It's not about if you win or lose. Life is about being remembered after you're gone. Life is about living teh way you want to. People often say "live your life for you, not for others." Well, I disagree. I want to live my life for my fellow Lymies who can't live theirs anymore. I want to live my life and make sure no one else falls victim to this disease.
We can't keep letting them look the other way as we die off, slowly, but surely. The time for change is now. No more will die. No more will feel the pain in their body. No more will be affected by Lyme Disease. Open your eyes to what's in front of you.
Love to all my Lymies.
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