Tag Archives: Lyme Disease

How Do You Dine Out with Your Allergies or Illness?

My favorite t-shirt... even though I haven't eaten gluten in 20 years.

My favorite t-shirt… even though I haven’t eaten gluten in 20 years.

My favorite t-shirt has “Gluten is not the Devil” blazed on it in Italian. It’s soft, and the curvy cut is quite perfect, and the pig on it looks like there’s nothing that will bring him more happiness than the bowl of gnocchi he’s about to devour. Flavour Gallery sent it to me after a chef-friend saw it on Twitter and alerted them that I had to have one.

I’ve been on a gluten-free diet for twenty years.

Contrary to popular opinion of many gluten-less, I still don’t think it’s the devil.

My story is rooted in Lyme disease, which means that while I don’t have a life-threatening reaction to gluten like someone with Celiac does, any eating of it (and some other things) will make me relapse. Hard. Like, I was in a wheelchair as a kid, in college I blacked out regularly in class and had violent anxiety attacks, and the last flair had me out of work and home bound for a year. Using food as one way to control illness is a serious thing for me and many, many eaters out there. And gluten is one part of my diet.

Yet while more people know what gluten is now (which, trust me, almost no one did ten years ago) and though we can get a multitude of allergy-free, dynamic ingredients much more easily, that doesn’t equate to easy dining for those with food intolerance. Yes, more restaurants understand food allergies and take them seriously. But there are also a lot of people who claim to have allergies and intolerance yet don’t seem to quite understand what they mean, or how ordering habits affect kitchens and others with serious problems. And, yes, there are those who go “gluten free” for a week or five that challenge the patience of many a server or line cook, inspiring others to question the credibility of gluten intolerance in general. Continue reading

Gluten and Dairy-Free Olive Oil Blueberry Muffins

2013-08-13 19.15.09

No fancy camera out here – this is all I got!

In the past week, two chefs in separate interviews have brought up how they note trends and movements in the food world – the ebbing and flowing of ingredients, techniques and ideas – and that those movement have strongly affected the menus they put out at their restaurants today.

I look at the movements of my own life in various ways.

Ten years ago today I signed my first lease in New York, and moved into a 10 x 30 foot apartment on the Upper East Side with three of my closest guy friends from college. Yep, three of us in 300 square feet. Then Brooklyn, then Astoria, then Washington Heights. I have some sharp memories of those places, punctuated by hot summer nights with the boys on the emptied streets of Manhattan, the coffee shops and Italian Ice in Brooklyn, my melting pot of European neighbors and food in Queens, and now the somewhat more subdued, sunlit place I call home.

Ten years ago I was dating Ruark, and we continued dating until four years ago. Now we’re still close friends, and he just moved in with his current girlfriend, which I think is wonderful. In Ohio I dated a man named Adam for a while, and he was sweet and gentle and the kind of man you should date when you’re newly out of a 10-year relationship and need some comfort. He’s now engaged and just bought a house with his fiance, and I couldn’t be happier that he found the kind of love and relationship he deserves. And then there was Aaron, who turned my world upside down by telling me he loved me, and then again when he let me go. I have no idea what he’s doing right now, but hope he’s finding what he needs to feel whole.

Continue reading

Gluten-Free French Lemon Madeleines (and a boost of blogging confidence)

Lemon Madeleines - TheDustyBakerI am a mess of many things.

I bake. I write about famous people who make food. I research articles. I develop recipes. I review events. I take photos in professional people’s kitchens. I blog. I manage my family business’ books. I walk hundreds of miles for breast cancer awareness. I don’t eat gluten. I used to write plays. I grew up with Lyme Disease. Sometimes now that stays hidden. Sometimes it doesn’t.

I’ve been having a hard time figuring out how that all comes together here.

I used to feel like I had a “voice” on this blog, one that was quirky and fun and so focused around the joy that is throwing flour in the air and making a mess and being all scrappy in NYC and not letting the whole gluten-free thing be the thing that stops someone from baking and being all dusty in the kitchen. And then two things happened; I started getting a lot more writing/cooking work and my Lyme Disease-related symptoms started making me not feel well again.

Bare honesty here: I don’t feel well a lot, nowadays. I do a lot of things through an incredible doc who does intensely focused plant-forward immune supporting regimens. I also take a combo of pain killers regulated through a pain management doctor I’ve trusted for over ten years. I also meditate, and work with a life coach, and keep a positive attitude, and sometimes let myself cry in the bathtub because in certain moments none of that seems to make a difference.

Sometimes I don’t know how to express this person I am in this body, at this point in my life.  I have a good life. I love my work, value my relationships and have a home that I adore. But I have a history, and even as I’ve tried to start sharing the reason why I’ve been on a gluten-free diet for twenty years, I’ve worried about how it will translate on here.

But then I had a conversation I really needed yesterday. Continue reading

Living With Lyme: Staying In My Body, and Advice from a Petite Pilates Princess

A resting place when not feeling ill during a training walk last week.

A resting place when feeling ill during a training walk last week.

Something’s off.

Even after 20 years of living with chronic Lyme disease, I can tell that something’s not right. Symptoms are not lessening like they should have, after I drastically reduced my work load  by leaving my private chef position in February and adopting a much gentler lifestyle. And new ones have returned from dormancy, which Muffin reminds me existed years ago and were signals that I was entering another period of active Lyme that needed serious treatment.

I’m not jumping to the conclusion that I’m on that path now.

But something’s offAnd because of that, my defenses are down.

Last week was particularly rough, and I got to a point where I felt very vulnerable, and scared, and anxious. It was a physical feeling, and for days I was in a cloud, and shaky, and extremely low. And so I kept breathing, kept working through the brain fogs and shakes, and tried some shadier methods to get everything back on track, to no avail.

So I sat to meditate – my unquestionable source of calm amongst any storm.

And as I sat, breathing slowly, calming my mind, things got worse. Instead of feeling more in control, I felt extremely more exposed. Things I had never worried about before flooded my chest. I was petrified. I talked (out loud) through that fear: “I’m going to stop doing this now, and turn on the lights, and read in bed until I fall asleep, okay, whatever’s out there?” And that’s what I did. It was very creepy. I wouldn’t have been the bit surprised if all my electronics turned on automatically and Mitra’s head spun in a 360.

So, what do you do when you can’t separate your mind from the sensations of your body? Continue reading

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.

Continue reading

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