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Story 11

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How has Lyme Disease affected your life?

I have had Lyme Disease for around 3-4 years. It started with aches, pains, inexplicable weight loss, anxiety and migraines. I was diagnosed 15 months ago, at 5’8″ and 82 lbs and have been in treatment for 14 months. Treatment for me has involved removing gluten from my diet (along with half a dozen other staple foods) over 9 months of oral antibiotics, 6 months of IV antibiotics via PICC line, and 40-50 pills a day of vitamins, herbs, mushrooms, etc. Treatment is rough, but much better than being told “there’s nothing wrong” and “it’s fibromyalgia- deal with it” or my favorite “you have an eating disorder.”

What inspires you?

The thought of life beyond Lyme. I have a very clear picture in my head. It’s sunny and warm. It’s the summer so I don’t have to work because I’m a professor. I’m with my boyfriend (my rock and motivation when I’ve got nothing left inside me) and our dog is running in the yard. I can get up and chase the dog. I can go for long walks at sunset. There’s no barf bucket in sight and I’m not constantly checking my watch to see when I have to take pills again. It’s simple but it’s inspiring.

I don’t do a lot of heartfelt motivation. We approach everything with humor, from midnight emergency PICC dressing changes, to fighting over the bathroom because my enema just can’t wait any longer. So my quote would have to be how I approach dealing with everyone who doesn’t understand Lyme: “God, grant me the serenity to not shank a fool today.” – Anonymous

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