Tag Archives: Lyme Disease

Updates from a very Dusty Baker!

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Hi there!

You may have noticed a very long absence in the “this is a baking blog” sphere here. In truth, I haven’t had the capability or interest in a long while for several reasons, some better than others.

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How Do You Dine Out with Your Allergies or Illness?

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

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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.

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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.

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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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60 More Miles to Beat Breast Cancer – And Pink Sweets to Come!

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My mother Doris and I in the Twin Cities in 2011.

I say the word “walk” a lot. To my dog, several times a day. To myself when I’m cranky at how slowly some people move on the streets of NYC. As a curse when my joints really hurt (yeah, this Nemo character isn’t helping today). And within my family as we talk about if we should do a “walk” or not this year.

The joy of the word and its meaning is not lost on me, since there was a time as a child Lyme Disease made it not possible for me to walk.

Over the past 20 years, this ability has ebbed and flowed in regards to ease. And in 2004 I first put my capabilities to the test in what was to be the last of the Susan G. Komen for the Cure New York City Breast Cancer 3-days. I walked 60 miles from Bear Mountain through the Bronx and on the Triboro into Queens, then again down into Brooklyn, over the Williamsburg Bridge into Manhattan, ferried it over to Staten Island, and then finished off the Bayone to Jersey. I made every step, and was so moved that I vowed to walk every city the Komen organization sponsor. I walked every step in 7 cities after that, recruiting family members and friends over the years. My illnesses challenged the “every mile” goal I’d had after I dealt with another bout of illness in 2008, but I still tackled two more cities in 2010 and 2011, first celebrating my father’s 60th birthday by walking with him in Phoenix and then with my mom and sisters in the Twin Cities.

My first walk, in 2004

My first walk, in 2004

This year my mother and I will once again walk, “60 Miles for 60 Years” being our motto as we celebrate her significant 60th birthday.

She’s the reason why I picked this walk. Seeing her support her friends and loved ones as they battled breast cancer over the years made me so thankful – both for my health and for the attention she’s given me as I’ve needed her support maybe more than most kids should. To this day she’s one of my strongest advocates, and walking with her is one of my greatest joys.

So together we’ll walk Seattle this coming September, with my siblings all on various crew teams in celebration. We’ll walk in laughter and tears for those we’ve loved, those we’ve lost, and those we’re walking to save before they need saving. We’ll celebrate her birthday, our friendship, and the thousands of people we’ll walk with. I’ll make as many steps as I can, and be cheering for her as she pounds miles I can’t. We’ll keep working hard to raise more than money – to raise awareness, unity, and solidarity.

I so can’t wait to walk.

If you feel so moved, please donate to help us achieve the $2,300 fundraising minimum we need to meet on top of our own personal travel funds to get to the starting line by clicking HERE or on the widget to the right. And check out our website, Walking for Udders, to see pictures and read stories from our last 9 walks.

And expect lots of pink sweet things to come in the next 7 months.

Happy Friday, stay warm east coasters,

– Jacqueline

(Werking Woman’s Meat)Balls Deep in Resolutions

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This is gonna get personal, today, people. But it’s my blog, and that’s why blogs are blogs.

(If you’re looking for a recipe for light and fluffy meatballs that the kid I work for gobbles up, just skip the tirade and scroll down to the next picture, please and thanks).

I am so over “New Years resolutions”. I’m tired of reading them, joking about them, and them being taken so fricken seriously.

Because, one thing about living with a chronic illness is: you make resolutions every day. Every day is New Years Day as far as resolutions go.

  • I will “say no first” and really have to convince myself to say “yes”.
  • I will not work after 8pm.
  • I will drink more water, less tea, and reserve alcohol for worthy social events.
  • I will eat breakfast, lunch, dinner and two snacks and take my meds before and after as prescribed.
  • I will not wear shoes that look seriously awesome but affect my walking so that I later have to take a percoset to be able to walk at all.
  • I will avoid people who require too much energy, though the healthier version of myself simply adores and cannot get enough of them.
  • I will work less at my jobs and work more on the job of keeping a relative level of health.

Here’s the thing: I have a good life. I love my jobs, my family, my friends, my dog, my roommate, my apartment, my car, my city… they’re all fine and dandy and I count my blessings daily. But I’ve had Lyme Disease for over half my time on this planet, now. Some people I share this with – others I do not. Many people in my life know nothing about it, because I’m fortunate that, for the most part, I can avoid looking ill and only see certain people when a limp, hunched back or drugged-up gaze aren’t present.

At my healthiest, I can convince myself that I don’t even have an illness. There are awesome periods where I can eat, drink, dance and be merry, and wake up without a life hangover the next morning, moving into the next thing I want to do.

But that’s not the norm, and it doesn’t last long. And it’s a flat-out lie that I tell myself, sadly. Because when I get by with a few weeks, months or even year of that, I inevitably make poor decisions and my health declines to the point that there’s no lying or covering up that I got bitten by a bug when I was 12 and it’s affected almost every day of my life since then.

I don’t think resolutions are bad. As is obvious in the fact that I admit to making them constantly. I just don’t think that we should give so much attention to making them once a year. July 6th can be the day I make a resolution that is going to change my life drastically for the better. Every day we get a chance to say, “I’m going to choose the healthier, happier option”.

Healthy people should be doing this as well as those who have to deal with their bodies a bit more. You said you were going to go running three times a week to lose that little extra weight and you “failed” in week four? Screw it; make the resolution again. Trying to quit smoking but light up when something goes bad? Throw the pack out and try again tomorrow. Made a resolution to “do more of this” and find out that it adds way too much onto your already full schedule? Make your next resolution “do less of that“.

Here’s what I’m going to work with now:

I’m going to make specific resolutions. I’m going to ponder them fully, discuss my options with those closest to me, and draft out a plan on how I’m going to carry them through. For example: I’m going to blog more is too general. What will really serve me best is I’m going to blog with more honesty, with more integrity, and when I truly feel I have something to express, not just because I should keep up with a certain schedule for social media purposes and targeted numbers of views. (This is actually something I started a few months ago, and I can tell you I enjoy blogging so much more right now).

I’m going to develop recipes that mean something to me and connect me with people on the interweb of food shakers and makers that I respect. Rather than throw a “it’s the holidays so I need to make five holiday cookie recipes because that’s what you do when you blog” I posted one: Triple Chocolate Gluten and Dairy-Free Biscotti, which was part of the Great Food Blogger Cookie Swap benefiting Cookies for Kids Cancer and connected me with blogger Jody at The Hobbyroom Diaries. It was a joy, not a job, and felt more in the spirit of Christmas than those five other cookie recipes probably would have. This year that makes sticking with my Milk Bar Mondays ladies, adapting more Cooks Illustrated recipes, tackling my mom’s favorites and starting a new seasonal swap with some lovely blogging ladies I miss.

I’m going to cut back on work so that when I plan to go out to a friend’s party, a food event, or even just for drinks and ridiculous food at a restaurant I drool for, I can with energy and confidence. This is the hardest one: my natural inclination is to burn the candle at both ends, and I like to work hard and party. Right now if I do something social it takes about two days to recoup. But it’s happening…

I was chewing on what resulted in this tirade today because (a) I’m way burnt out, even after a 10-day break from my cooking job, (b) my Muffin sent me this piece on chronic illness explained in spoons (it’s a great read and my next piece will be on it, (c) I found a similarly frustrated writer with a great expression of it at Mouth from the South (d) with all my self-reflection and self-analysis sometimes I want my brain to shut up about resolutions and this time of year is not helping in that and (e) I was making meatballs at work today, and I find making meatballs calming.

This is my official Happy New Year post. I’ll resolve to write another one tomorrow.

My dog is being too cute – I have to stop this now.

And enough of that anyway… onto meatballs.

– Jacqueline

Meatballs4-TheDustyBakerUntil I started my current cooking position I would tell you that I’m much more Portuguese than I am Italian. But for some reason my meatballs, lasagna, bolognese… those are what my bosses latched onto in the beginning. And since I can’t do the gluten or dairy thing, it’s fun to get to use these types of ingredients again through work.

I now make meatballs weekly. My boss family likes their meatballs extremely fluffy. So to accomplish that I came upon a combo of ideas stolen from various sources:

  • From a friend (the chef before me), I learned finely chopped mushrooms almost dissolve in flavor but provide fluff.
  • From Chef Daniel Holzman (of the Meatball Shops) I added ricotta cheese (he made a recipe for me for Easy Eats that was gluten-free and used ricotta).
  • From my brain I decided to mix pork in with the beef (I hope they don’t read this, because I don’t think they’ve realized there’s more pork than beef in the ones they like the most).
  • From everyone good at rolling meatballs I’ve ever talked to I’ve learned over handling is a very bad thing!, so these require loose tosses and a light touch.

Everyone’s got their opinions on meatballs. These ones have been specifically crafted for the people I work for. I can’t eat them, and have to go by smell and touch to know if they need more of something. But they’re a real deal, promise. If you’re looking for a gluten-free one, check out Chef Holzman’s in Easy Eats, and come back here for the gluten- and dairy-free ones I make for myself when I’ve made a resolution to blog them.

Meatballs1-TheDustyBaker

Werkin Woman’s Meatballs

The way I roll em, this makes around 34- 2″ meatballs.

Ingredients:

  • 10oz Baby Bella brown mushrooms
  • 1 small onion
  • 6 cloves garlic
  • 3lbs ground meat – I go with around 2lbs ground pork and a pound of either ground chuck or sirloin, whichever is looking better that day.
  • 15oz ricotta cheese (around 1 1/2 cups, methinks)
  • 2 large eggs
  • 1/2 cup breadcrumbs (Progresso Italian works just dandy in this)
  • Around 2 tsp salt (your call)
  • 1 Tbsp dried basil
  • 2 tsp dried oregano
  • Around 5 cups tomato sauce (note below)

Preheat oven to 425°. Grease a very large baking dish with olive oil or cooking spray (this is the fullest batch I do, which requires a 9×13 and sometimes also 8×8).

If you don’t have a food processor, chop de-stem the mushrooms and chop them into very tiny bits. Do the same with the onion and the garlic. If you do have a food processor, rock it: de-stem the mushrooms, break them with your hands and toss them in, then pulse in short bursts until they break into as tiny pieces as possible with becoming mush (this picture shows them at the perfect time – a few more pulses and they’d be a mass of mushroom):

Meatballs2-TheDustyBakerToss them into a large bowl, and repeat with the onion and garlic.

Add the ground meat, ricotta, breadcrumbs, eggs and seasonings. Lightly mix them together with your hands, until everything is fully incorporated. Roll them with a gentle touch, sort of tossing them between your hands, into about 2″ balls (or whatever size you like, really). Place side-by-side, touching, in greased tray.

Bake for 20-25 minutes, until they’re nice and browned. Gently tilt dish over sink to pour off access grease (this amount will depend on your meat choice). Cover in sauce, return to oven (I put a rimmed cookie tray below to catch flying tomato), and bake around 20 minutes more.

Note on sauce: Use what you like. My current standard at work is also made for the family I work for specifically, which is basically this: in around 1/4 cup olive oil, soften 1 medium yellow onion that has been finely chopped and 4 smashed cloves of garlic. Add 3 large cans of peeled tomatoes (I’ve landed upon Nina’s as the house favorite… for now). Bring up to a simmer and cook down for at least 3 hours. Smash tomatoes with a potato masher, and blend until really smooth with a hand blender. Add salt and pepper to taste, and a few pinches of sugar if desired. I wish I could say I do more fun things with this, but you have to cook for your clients, and this is the way she likes it.

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, major fatigue, sensory overload, 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

  • Servings: 4-6
  • Difficulty: easy
  • Print

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!

Ingredients:

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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