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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Onion and Thyme Soup and Living with Lyme Disease

Lyme Disease is a bacterial infection. I got it when I was around 12 years old. We don’t exactly know when I got it, because it was months after I started feeling ill that we got a diagnosis. This was in the early nineties, when Lyme’s existence in the medical field was only about 20 years old and not nearly as quantifiable as it is today (though many aspects of it are still incredibly difficult and under-researched). I’ve had serious flares 3 times (meaning periods when I’ve been so ill I’ve been unable to work and merely “waited” out courses of antibiotics and immune building until my list of symptoms abated). During my “recessive” periods, I still battle digestive issues, joint pain, feelings of paralysis on one side of my face, sleep problems… symptoms that come and go and can be light or severe, depending on many factors.

Since my last serious flare, which ended around 3 years ago, I’ve had a good run.

But now things are changing again, I can feel it. And it’s scary. My body hurts, on a daily basis. Lights seem harsher, sounds seem louder, the world seems to be pulsing at a higher speed.

I can feel my body screaming, “stop, pause, rest, be still. And I’m trying to slow it down. But when you have a day-job that pays so well you can actually see yourself clearing up that medical debt (I’m definitely pro Obamacare) and writing work that is soclose to being enough to sustain you financially, it’s hard to know what to give up. I work in a kitchen. I interview chefs for a weekly column. I review food events. I’ve got a crazy/awesome month of giveaways and features set for the Easy Eats blog. I go to CT to help out in my family office. I (attempt to) keep this blog going because I enjoy it. I love what I get to do. But once again I’m worried that my body can’t keep up with the “if you can make it there…” pace in the city I love so much.

This post may seem gratuitous the week of Thanksgiving, but it’s because of giving thanks and the joy of the holidays (that I adore and which give me so much inspiration) that I wanted to express this. This blog was inspired by my history with Lyme, but the past few years my symptoms have been a regular but manageable part of my life, so Lyme’s presence here has been relatively absent. Now it’s taking a bit more of my thoughts. I am so thankful for my health, especially for my ability to walk from A to B after not having been able to during my first bout as a child. But there are so many symptoms and ins-and-outs of living for so long with an intricate, changeable and painful illness. I want people to talk with about it. Because when we talk we process, and share ways to help, and ways to move forward.

Saturday I spent 7 beautiful hours talking through things with a good friend with Crohn’s. Yesterday I got a wonderful/heartbreaking email from someone reaching out about her 19-year old son dealing with his third year of Lyme. It’s important that those of us with chronic but not overtly visible illnesses have people to talk with. So please, if you know someone with Lyme, R.A., Crohn’s or similar immune illnesses and they need an ear, send em my way.

This soup I made at work a few weeks ago, in love with the idea of making something simple and warming with only a few ingredients. It’s incredibly basic: yellow onions, chicken broth, garlic, thyme, garlic, salt and pepper. I love it. I made it at home again recently as it doesn’t threaten the stomach and got my body warm again, inside and out.

Stay warm, and thankful.

Thanks for reading,

- Jacqueline

Onion and Thyme Soup

Feeds 4-6

The key to this soup is slicing the onions into thin strips and cooking them low and slow until they practically melt. Then just fill with broth and season with some fresh thyme and salt and pepper!

3 large yellow or Spanish onions
4 tbsp unsalted butter
3 cloves garlic, minced
4 cups chicken stock or broth, or more to desired liquid level
salt and pepper to taste
1 tbsp chopped fresh thyme, plus more for garnish
Cut the onions into quarters and then thinly slice.

In a large pot over medium heat, melt butter. Add onions and toss to coat. Add around 1 tsp salt, garlic and thyme, a toss to coat. Reduce heat to low, cover, and let cook until soft (stirring occasionally), about 30 minutes or more, until they practically melt with pressure from a spatula.

Fill with broth until it just covers the onions. Bring up to a simmer and simmer around 30 minutes, until the onions have softened into the soup completely. Taste and season with salt, pepper and more thyme as desired.

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