Tag Archives: Infectious Diseases

Living with Lyme: Walking Meditation

Walking barefoot in the quiet of a Spring day.

Walking barefoot in the quiet of a Spring day.

Last night I had to explain to someone close to me how my body works. How, after having had Lyme Disease off and on for almost twenty years, it’s harder to do simple things that I can no longer afford to ignore. I’m not debilitated. Not by any means. But sometimes walking up stairs makes me scream inside. Sometimes holding onto a conversation takes an obscene amount of concentration. Sometimes I realize that no one around me is aware that I’m loaded with small but consistent amounts of pain medication to make it through the job and that I may have blacked out when no one was around only hours before. When I plan any work or social events on back-to-back days, I have to plan precious hours between them or know that it’s going to take a few days to catch up afterwards. I count my blessings – this isn’t about a sob story or a cry for a solution. It’s about the little things that keep it all in check.

Today my dearest friend, whom I will forevermore call Muffin on here, told me I’d made a brave decision in leaving the well-paid cooking job that I loved but that completely depleted my limited stores of energy. Since that time my days have been a weird crucible of covering events, interviewing chefs, working on a book pitch for me and Brent, working on a chef’s book pitch, and keeping my family business in check. I make up for the lost income by cooking at photo shoots or stepping in at my prior job – both which require those small but consistent doses of prescribed pain killers and muscle relaxers. Some days, like yesterday, the consistent amount of work it takes to prevent a flare up feels like too much. I don’t look sick, and for that I am thankful. And the work I do in my private time is enough to ensure that most people don’t see me at a weakened state. Again, I count myself lucky for that.

But it takes work, and being completely aware of a restorative moment.

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My Life with Lyme: Gluten, Blogging, and Fresh Starts

Found at asliceoflyme.blogspot.com
Found at asliceoflyme.blogspot.com

Hi, my name is Jacqueline, and I have been battling Lyme Disease since I was 12. I am now 31, and still have to consider my body daily in ways many people don’t. And I’m okay with that.

I read up a lot about what’s going on in the gluten-free world, and as of late have been taking my place as someone who does not have Celiac disease in it more seriously.

See, I’ve been off of gluten since my first diagnosis of Lyme disease, when nothing was really working to make me better. In a rather progressive move (remember, this was the early nineties), my mother brought me to a “different kind of doctor”. In some ways I hated him – he took me off wheat, milk, eggs, beef, soy, sugar, corn, tomatoes, green peppers, citrus… I would sit in his office for hours while vitamins were injected intravenously. It was a really boring way to spend time as a kid.

But… within a few months… I could walk again.

Because that’s how badly Lyme hit me. For a while I could walk with crutches. Then I was wheelchair-bound. Then crutches again. I would go to school for a few hours a day, swim at the YMCA to get my joints moving, and spent most of my time in bed. I remember during one summer trip to see my sister at camp, my mom would hang my IV bag from a hook in the car to give me my doses of antibiotics. It was a mess, and as a kid it was hard to process.

Which is why I haven’t eaten gluten or milk since, and watch those other buggers in moderation. Oh, except for a bout in college my freshmen year, which kicked my ass into another flare my sophomore year which brought a whole new slew of lingering symptoms and set me on a 6-month cycle of driving the 90 minutes from class to weekly bicillin injects and picking up lots more vitamins again.

So, yeah, Lyme has stuck with me.

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