The soup that helps me survive winter

I have never enjoyed cooking food. Maybe it’s because most food hurts me. Maybe it’s because standing in the kitchen makes me dizzy and exhausted. Maybe it’s because during my first cooking lesson, my mother told me that my great grandmother died in a cooking fire.

However, my body demands home cooked meals. Soy, garlic, onion, corn syrup, lactose, and high-fiber foods make me feel like I’ve swallowed a demon. High histamine foods, basically all the remaining foods, make me puke within 20 minutes of ingestion. It’s easier to explain what I can eat: fresh, plain meat; potatoes; rice; bread; and butter.

This makes lunch at work incredibly difficult. I cannot breathe in restaurants, and there are no safe takeout foods. I cannot eat refrigerated food, which increases histamine, but frozen is okay.

My friend encouraged me to make soup, which sounded tasty. However, when I learned her recipe involves roasting a chicken and simmer the bones, I abandoned the idea. The only thing I roast are bad healthcare providers.

I don’t appreciate food enough to spend hours of my precious energy preparing it. I often remind myself that in the event of a zombie apocalypse I will die because I don’t know how to roast a squirrel. But let’s be honest, I probably can’t catch a squirrel and I’d probably die from running out of my medications first. I’d be lucky if I lived long enough for a zombie to eat me.

This year, when Minnesota’s windchill dropped to -50F, my body demanded soup. I scoured Whole Foods for a gastronomic compromise. To my delight, I discovered the nectar I’d been longing for: a chicken broth made without garlic or onions. From then on, it was surprisingly easy to develop low-energy soup recipes.

Here’s my recipe for chicken noodle soup:

  1. Think about making chicken noodle soup. Eat air sandwiches for lunch and sleep through dinner time until you are so hungry that you can’t feel your joint pain anymore.
  2. Eat cereal for energy to go to the store.
  3. Go to Whole Foods at 5 pm, because that’s when the rotisserie chickens are fresh. Buy one plain rotisserie chicken, celery, carrots, green onions, and 48 oz of 365 Everyday Value® Organic Chicken Broth. Pray that you still have basil, thyme, and pasta at home.
  4. Eat part of the chicken and take a nap.
  5. Maim the celery and carrots. I hate celery and carrots. They taste shit and aren’t going to cure me. But I eat them just in case.
  6. Sauté the vegetables in garlic oil if you feel fancy.
  7. Squirt the box of chicken broth into a pot over the vegetables, emulating the sights and sounds of colonoscopy prep. This is my favorite part.
  8. Dump basil, thyme, and pepper into the pot until it looks pretty and bring the broth to a boil.
  9. Add 2 cups of tri-color rotini because curls have more fun. Boil for 7 minutes.
  10. Remove from heat, add chopped chicken and green onions, and stir until you get tired or bored.
  11. Spoon into Pyrex bowls and freeze.
  12. Tell the poodles to do the dishes.

Why I made an encouragement board instead of a vision board

Every January, I make a vision board. To be honest, I enjoy the craft portion of the project most. A vision board is basically a pretentious collage that makes me sound like I have my shit together. It’s supposed to convey your dreams and leverage the law of attraction to make them happen. Yet, I never put a hospital on my vision board, but I can’t seem to stay out of one.

This year I am forgoing the traditional vision board for three reasons:

1. I am overly ambitious; my body is not

Before vision boards, I wrote resolutions. For example, here are my New Year’s resolutions from when I was 15 years old:

  • No chocolate except for special occasions
  • Find a volunteer job
  • Fix my many social problems or just shut up when necessary
  • Save $150 a month
  • Journal 3 times a week
  • Keep my face clear
  • Do all the other stuff I can’t think of right now

Well, that pretty much covers it. I was not a cool 15-year-old and I did not get more reasonable about my goals with age. I still eat chocolate every day and my face is usually dotted with hives. Let’s not even discuss the social problems. For the record, I did get the volunteer job… AT A HOSPITAL. These days I’m lucky if I can even keep my paying job. Vision boards and resolutions alike are loaded with guilt and regret.

2. The universe misinterprets my visions

In case you missed it, read last year’s warning about vision boards.

3. My friend refused to participate in our vision board tradition this year

Technically, we’ve only made them together once, but since my mast cells forbid all of my other traditions, it’s officially our thing. Maybe she refused this year because last year she was a little too scissor-happy with the yoga magazines and now feels guilty. Or maybe it’s because when we craft, I try to work “modge podge” and “she shed” into the conversation every 10 minutes, because I think it’s hilarious. She reminds me it’s actually called “mod podge” and I become more persistent. MODGE PODGE.

*****

This year, I decided I am making an encouragement board instead. Yes, that does sound even more nauseating than a vision board. Yes, a unvision board would be way more fun to make. (A unvision board is a collage of things you wish you could unsee. Yes, I totally made that up.) But after another year of pursuing the same dreams, getting knocked down and beat up, and feeling totally out of control, I need an encouragement board.

This past year, my friends and readers have kept me going. When I was in the hospital, your encouragement gave me strength to keep fighting and hope that I would recover. Oftentimes, I didn’t feel like writing, but the messages of support reminded me my writing helps people laugh and feel less alone. I dug up these messages time and time again when I felt low. Finally, it occurred to me to print these messages and make a collage.

Here’s what else my encouragement board entails:

  • A 11”x14” foam board
  • Scrapbook paper for the background
  • Inspirational quotes
  • Magazine clippings
  • MODGE PODGE (use doubled sided tape if you react)

Chances are you don’t have a blog and dozens of comments feeding your ego. However, I bet if you shared your dreams on social media, you’d also receive encouragement. Maybe from people you didn’t expect. And you can always print this out:

I BELIEVE IN YOU! YOU ARE AWESOME! – Hell’s Bells and Mast Cells

The Christmas cards are stacked against me

I’m not feeling the holiday spirit this year. Maybe it’s because the hospital almost killed me last month and still gifted me a $2k bill. Maybe it’s because my head is a ticking CSF leak time bomb and my neurologist says I will probably need brain surgery. Maybe it’s because my right kidney is still angry from last month’s contrast dye and throws a tantrum every time I drink water.

Or maybe it’s because Shutterfly sent me envelopes that smell like butt.

For the past decade, I’ve sent at least 50 Christmas cards each year. In the hospital, I swore I was taking this year off. However, a week later, I was invited to participate in a holiday card exchange for people with mast cell disease. I’m a sucker for fellow MCAS warriors, so I loaded up on steroids, put sweaters on my dogs, and trekked outside in the snow. The photos were adorable, so I ended up ordering 50 cards per usual.

As soon as my cards arrived in the mail, I set up my workshop: pens, stickers, and stamps. I was admiring my new cards, when it hit me. Not a chemical smell, nor a poop smell, but a foul butt smell. I put an envelope to my nose, and one whiff confirmed these envelopes had been stored in a sweaty butt warehouse for the past year. Unfortunately, by the time I moved them outside, my lungs were burning.

The only thing worse than getting sick from your own Christmas cards is getting all your chronically ill friends sick from your Christmas cards. I want to be known in the MCAS community as a great blogger, not the Christmas card killer. Again, I have ordered cards for over a decade, and I’ve never had this problem. Why this year?

Not even the Minnesota winter air could refresh the butt envelopes sitting on my patio. I waited two weeks for Shutterfly to send replacement envelopes. In past years, I would have been more patient. However, as a chronically ill person, I cannot crank out cards like I used to. Everything takes longer.

I considered sending the butt envelopes to my friends and family without mast cell disease anyway. I could just add “This is what my 2018 smelled like. Merry Christmas!” However, I usually I can smell things normal people can’t. So, my message would probably add further confusion and evidence that I am the most awkward person in their life.

As the Christmas deadline grew near, the pressure to finish my cards and my crabbiness increased. I began publicly proclaiming everyone would be receiving scent free deodorant for Christmas, because I am sick of trying and suffocating.

I was at the precipice of a Grinch-like meltdown, when I began receiving cards in my mailbox. Half of the cards came from cities I’ve never heard of, homes of other mast cell warriors. One of the cards contained a sticker that read, “Thank you for being.”

My shrunken kidney, two centimeters too small, did not grow when I read that, but I did feel a moment of comfort. The holidays have become painful reminders that everything is difficult or impossible for me: shopping, decorating, eating; socializing. The sticker gently reminded me I still matter, even if I can’t send Christmas cards on time anymore.

I considered putting an end to my shopping stress by just giving everyone on my list one of these stickers for Christmas. Then they would probably wish I had given them scent free deodorant. Holiday expectations are ridiculous.

Texts from the hospital

I’m recovering from a five-day hospital stay for a CSF leak. After two weeks of agony, adrenaline, and vomiting, a neurologist ordered a blind blood patch, and luckily it worked. Luckily, it’s still working. However, the leak, the MRIs, and the dye really pissed off my mast cells. And two doctors refused to give me mast cell medications.

I feel like I’ve been to hell and back, and I need to rest before I process the trauma.

I checked into the emergency room alone, per usual. I am my own best advocate and I hate asking for help. However, I underestimated the sedating power of Diluadid, Ativan, and Benadryl. I remember trying to text a single word to a friend for several minutes before giving up. Another friend suggested I dictate my texts and I thought that was a brilliant idea. Then I promptly forgot that idea.

My Facebook posts quickly devolved from official updates into a stream of consciousness.

“I hope Sancho visits me.”

Sancho is my toy poodle service dog. Instead of asking for someone to get him for me, I simply hoped aloud Sancho would make that choice himself – as if Sancho drives himself to the hospital. Luckily, my friends brought him to the hospital soon after my post. He woke me up at 3 am, when I pulled my IV out in my sleep. So. Much. Blood.

“At least I have corner room now. I’ve been watching humans park add snow all day”

I think this was the point in which my friends realized I probably shouldn’t be alone. On the 7th floor, I could see a nearby ski hill making snow. I watched it for hours, my own personal snow globe. Nobody else seemed to think it was as wonderful as I did.

My friends made sure I had everything I needed, making several trips to my condo. They even let me think I was still being helpful and orchestrating the details via text message.

“Ok but my mekhjnkr will have just to let you in”

Amidst all the cognitive impairment, I managed to purchase an Audible subscription and download several audiobooks. However, I listen for one minute before realizing I could not concentrate on a whole sentence.

On the fourth day, I became really pissed.

“Kidney swelled shit and cutie wouldn’t believe me… almost left crying”

 I have a couple names for the doctor that refused to administer mast cell medications when my kidney went into hydronephrosis. Cutie is not one of them. And by “almost left crying,” I really meant threatened to rip out my IV and flee the hospital screaming.

Without a doubt, I would not have survived this hospital stay without my friends. Perhaps the cognitive impairment was the blessing I needed to accept help. My friends reminded me that we all deserve help and we all struggle with autocorrect.

“She’s been through a lot this afternoon. But they finally have things almost under control. Her murder is fantastic.”

I have a lot to process: a leaking brain sack, a shrinking kidney, and a health care system that failed me. But my murder is fantastic. I don’t know what that means, but somehow I am comforted.

Candy WAS dandy

“Are you sure you don’t want to come with us?” my mom asked, standing in my bedroom doorway, alongside a petite, but bloody vampire.

“Nah,” I said, barely looking up from my book. I was thirteen, officially too old to tour the neighborhood with my mom and little brother, and all of my friends had retired from trick-or-treating.

As soon I heard the door slam, I dropped my book and sprinted to the living room window. Behind the curtain, I watched them turn right at the end of the driveway and disappear into the darkness. The silence of the house filled me with anticipation.

Back in my bedroom, I changed my clothes: black leggings and a black sweatshirt. I ripped the pillowcase off my pillow, grabbed the cat mask I had dug out of storage a few hours earlier, and laced up my running shoes. I snuck out the front door, undetected by my dad. At the end of the driveway, I turned left and burst into a full sprint.

The purpose of Halloween is candy. It’s not about visiting with your neighbors, or spending time with your friends; it’s about collecting the most candy. That year, I decided I was going to collect the most candy ever. Goodbye pokey family and doorstep chitchats. My mask would give me the anonymity I needed to speed up my hustle. I did not walk door to door. I ran.

I ran like a thief in night. Literally. I took more than my fair share of those unattended bowls of candy left on doorsteps. I learned to time my approaches perfectly, sliding into other groups just as the homeowner opened their door and the kids held out their bags. I rarely had to press the doorbell and wait. Sometimes I didn’t even say trick-or-treat.

Only the weight of the pillowcase could stop me. I returned home cradling my 20-pound pillowcase in both arms. I dumped its contents on my bed, admired the assortment, and congratulated myself. I rewarded myself with my favorite kinds first, but it didn’t really matter. I was going to eat it all anyway. It was just a matter of time.

Thirty minutes later, my mom and brother returned home. When my mom opened my bedroom door to tell me how I had missed out, she found me grinning wickedly surrounded by wrappers.

******

Skittles were one of my favorite candies. Particularly the purple Skittles. I think I started buying them from the office vending machine to try to beat the afternoon slump. This was four years ago, when my digestive issues were beginning to get severe. I was avoiding dairy and soy, so Starbucks was no longer an option. I had cut out gluten, and was resorting to all fruit smoothies for lunch, but my gut and butt were still angry.

A bag of Skittles seemed harmless given my current state. At least it would help my mental health, I justified. I spread the tiny spheres out on my desk, admiring their bright colors, as if it would slow my consumption. As soon as they were gone, I wanted more. My coworker caught me with the second bag and warned me I was going to be sorry. Maybe, I said, but I was going to be happy first.

One hour later, the Skittles started punching me in the stomach. I continued to work at my desk, accepting my punishment and accustomed to digestive pain. Suddenly, a sharp, overwhelming urge rushed me to the bathroom. I pooped the entire rainbow for the next 30 minutes.

If you know me well, you know this did not discourage me. In fact, they next day, I ate two more bags of Skittles and again, pooped my guts out. I wasn’t surprised by my belly ache, but the ferocity of the Skittles shooting through my system was terrifying.

I googled my symptoms and discovered fructose intolerance. People with fructose intolerance can’t digest foods like corn syrup, which is in everything! I refused to believe I could no longer eat my beloved candy, so I keep eating the Skittles for a full week. I spent a lot of time in the bathroom that week.

Eventually, I realized not only were the Skittles making me sick, but my lunchtime smoothies too! I thought all fruit smoothies were the ultimate health food, but I was wrong. It turns out a lot of supposed healthy foods make me sick. Soon after, I discovered the low FODMAP diet and have stuck with it ever since. My hypothesis is mast cell disease destroyed my body’s ability to create many enzymes necessary for digestion.

Now I binge on corn syrup free jelly beans. Sometimes by the package. You can take the fructose out of the candy, but you can’t take the candy out of me.

Death, and feeling like death, by chocolate

Three years ago, before my diagnosis, on a chilly fall night much like this one, I decided to warm my condo by baking. I cracked a couple eggs in a large bowl, stirring in water, oil, and my favorite brownie mix. The thick batter rippled into the square pan as I scraped the bottom for every drop of chocolate. For 30 minutes, I tried to occupy myself as the heavenly aroma taunted me.

I live alone, so you can guess how this story ends.

Yes, I ate the whole pan. What was I supposed to do? Share with my coworkers the next day? Don’t be silly. The brownies wouldn’t even be warm and gooey by then, which is the best part. So what if I tried to reframe the situation as an act of empowerment? Again, I live alone, so only my poodles were judging me.

And then I threw up the entire pan of brownies.

Turns out warm and gooey vomit is also less painful, but I couldn’t believe how my body was forsaking me. Chocolate is my solace, or so I thought. Maybe I had just eaten too much?

So a few months later, when I baked my next batch of brownies, I only ate half the pan. Surprisingly, I puked those up too. The next day, I tried a very conservative 2”x 3” piece, promptly vomited, and lost my desire for brownies. I have not had one since.

*****

My disease has forced me to give up a lot: sunshine, sports, and social events to name a few – but I’ve accepted the adjustments without much complaining. However, when I first read chocolate, specifically cocoa, is high histamine, I denied it. After all, chocolate always brought me joy and eased the tough days.I have fond memories of devouring rows of Oreos after a long day of school. I assumed chocolate was going to help me cope with this disease too.

I spent a full year in the “bargaining” stage of grief. First, I realized dark chocolate made me puke much quicker than milk chocolate because of the cocoa content. Luckily, I always have preferred the less dignified milk chocolate, and willingly gave up dark.

Next, I decided if I ate tiny portions of milk chocolate throughout the day, instead of a whole bar in one sitting, my stomach would be okay. I bought individually wrapped Dove Promises to help me ration. (Plus, I am fructose intolerant and Dove Promises don’t contain corn syrup.)

I wanted to ensure I received my regular daily serving of chocolate, so I usually began my doses at about 8 am every morning. My little reward for going to work, I told myself. Before lunch and after lunch, I’d have a couple more pieces. Then, almost every day, around 2 pm, I’d mindless demolish half the bag. I wouldn’t even pause to read the little promises in the wrappers. When the nausea and cramping began, I didn’t even feel regret. I took Benadryl and awaited my punishment.

One week, I was so tired, I ran out of chocolate. The craving gnawed at my concentration, but I noticed my belly felt remarkably more comfortable. I was spending fewer HOURS in the bathroom. A reasonable person would have stopped eating chocolate at this point, but I am not reasonable when it comes to chocolate. Instead, I decided the culprit was the soy.

Yes, I am ridiculous, but I was actually right. My chocolate addiction uncovered a severe soy intolerance. I had already cut most soy out of my diet, but of course I never considered eliminating chocolate.

Do you have any idea how hard it to find soy free, corn syrup free, milk chocolate? And how expensive it is? Soy free, milk chocolate also seems to have a higher cocoa content, so I settled on Theo’s Milk Chocolate Peanut Butter Cups as my preferred poison. Besides, peanut butter is protein, so basically, it’s a health food.

…which leads me to my current predicament. My local Whole Foods is out of my peanut butter cups. I guess I bought the entire stock. Then I went to Minneapolis, and bought their entire stock. I don’t know where I’m going to get it from next, but I’m certain nothing will stand in the way of my love for chocolate.

*****

P.S. Hell’s Bells and Mast Cells is now on Patreon! Please consider becoming a patron of this blog for as little as $1 per month to help me cover hosting costs. Plus you’ll get get exclusive writing and health updates from me! You can find more information about becoming a patron at www.patreon.com/hellsbellsandmastcells. Thank you for your support!

Brain juice is leaking out my ear

Day 23: I’m stranded on an island of pillows and sheets. I think the leak has stopped, but to be safe, I must stay here for a few more days.

While most Minnesotans are floating on lakes, here I lie on bedrest for a cerebrospinal fluid (CSF) leak that started last month.

Day 1: My right ear is taking on fluid. Just the one ear. No sneezing, no coughing, but maybe the start of a headache.

 Day 2: I pooped, then fainted. At least, I was able to pull able my pants before I fainted. I do not want to die like Elvis. 

Over the next two weeks, the pain at the base of my skull and behind my right ear became more severe, like someone had swung a bat at the back of my head. None of my mast cell medications provided relief. As an experienced medical detective, I retraced my steps and remembered, the day before my symptoms started, I had a chiropractic adjustment. The chiropractor had used her activator, a small metal device, on right side of my neck, just below my skull, the same spot as my headache.

My chiropractor specializes in Ehlers-Danlos syndrome (EDS), a connective tissue disorder associated with mast cell disease. Over the past year, I’ve experienced more joint subluxations and my chiropractor gentle guides my bones back in place. However, I know neck adjustments, even gentle ones, can be risky for EDS patients.

Day 13: I think my brain is leaking, I’m just not sure how to tell anyone.

Fully aware nobody likes a self-diagnosing patient, I emailed the facts to my primary care doctor without my hypothesis. She responded, “I have no recommendations at this time. Try more [mast cell medications].” At this point, the pain was causing me to vomit. I only felt relief after laying down. Classic symptoms of a CSF leak.

Day 14: The ER doctor is pretty sure I won’t die tonight. 

In ER, my doctor was concerned about a stroke or vascular dissection. When I suggested a CSF leak, he said that wasn’t a possibility, because I hadn’t experienced a head trauma. When I told him about my chiropractic adjustment and EDS, he paused and then left room, I think to Google. My MRI and bloodwork came back normal, and he sent me home. I really should have asked to see the neurologist on call.

Day 16: I yelled, “Brainjuice! Brainjuice! BRAINJUICE!” But the pain did not stop.

I instituted my own bedrest until I could see a neurologist. It’s not like I really had a choice. The ER doctor prescribed pain medication, but laying down was the most effective way to relieve the pain. My friends with EDS were also convinced I had a CSF leak, while the rest of the world considered I may be losing my sanity.

Day 21: The neurologist says I probably have a CSF leak.

The neurologist believes my CSF leak will heal on its own with more bedrest. It is nice to be validated, but mainly I am tired of enduring this medical circus. My healthy friends aren’t sure what to say, and neither am I. I’ve accepted becoming allergic to the sun, delicious food, and most people. But now if I poop too hard my brain may come through my ear? That’s where I draw the line, folks.

So, I’ll be in bed for the next few days, trying to focus on my gratitude for the Internet. The Internet that provides me with unlimited movies, TV shows, and books without having to lift my head. The Internet that allow me to share my jokes on social media, so I don’t have to laugh alone and continue to question my sanity. The Internet that provides me with research papers and fellow patients who urge me to advocate for myself when my brain juice leaks.