Mac and cheese and other drugs: why ingredients matter

Macaroni and cheese is my one true love. It always has been.

When I was seven and it was socially acceptable for me to eat neon noodles every day for lunch, I’d stick my head in laundry chute and yell, “DAAAAAAAAD!”

“What?” he’d shout from the basement. (We use cell phones these days.)

“I’m so hungrryyyyy. I’m starrrrrrving. Feed me. Feed me. Feed me,” I’d chant, while stomping on the floor until I heard him coming up the stairs.

In the kitchen, I’d hand my dad the box of pasta and assume my supervisory chair at the table. I imagined the best thing about being an adult was knowing how to make macaroni and cheese. I had tried on my own, of course, but noodles, water, and the magic powder were surprisingly disappointing. I watched my dad carefully, trying to learn, but the counter was too high. I begged him to teach me.

“What comes next?” I asked, while he poured the cooked noodles back into the steaming pot.

“It’s top secret,” he said.

“Tell me!” I cried.

“Secret ingredients. That’s why it tastes better than mom’s,” he said. (Years later, I would learn mom skimped on the butter, but I would never understand why.)

“C’mon!” I demanded.

“All of your favorite things,” he said.

“Like what?” I asked.

“Peanut butter, “ he said.

“You’re lying,” I accused him. It didn’t taste like peanut butter.

“Well, what do you think makes it taste so good?” he replied.

I didn’t have an answer. I stood on my chair, trying to see for myself.

“Now the ice cream,” he said.

“Stop lying!” I cried. “Tell me how to make it!”

He went to the refrigerator, retrieved a half of gallon of vanilla ice cream, and set it on the counter next to the noodles. Turning his back to me, I saw him scoop the ice cream. I contemplated everything I knew about food. I had never tried this. Maybe he was right. My mouth watered imagining the peanut butter and ice cream mixing together.

“How much ice cream?” I asked hesitantly.

“Two cups,” he said.

I believed him.

*****

Fours years later, I finally was old enough to babysit. I was certified by the Red Cross, and eager to earn money. Unfortunately, my parents still hadn’t taught me the most important skill of babysitting: how to make macaroni and cheese.

“Do you know how to make macaroni and cheese?” my first client asked.

“I think so,” I said. “You mix the box with peanut butter.”

And yet they still let me watch their child.

*****

Today, my macaroni and cheese is no longer neon orange. I buy organic, although still boxed, and use lactose free milk. Making it whenever I want is one of the best things about being an adult.

Gone are the days of blissful unawareness of the ingredients in my food and medicine. As digestion became increasingly painful in my 20s, I began vigilantly reading labels in grocery stores. However, I never thought to read the all ingredients in my medications.

One of the first lessons my mast cell specialist taught me was many patients react to the inactive ingredients in medications. These ingredients (also called excipients) can include fillers, dyes, binders, and preservatives – not the actual medicine itself. I used to think brand name and generic drugs were the same, yet I had awful experiences when my pharmacy changed my prescription. While the active ingredients are the same, the inactive ingredients can vary greatly. Now I only use dye free medications, and have memorized a list of manufacturers my body tolerates.

The same applies to supplements. I learned this the hard way two years ago when I tried quercetin, a mast cell stabilizer. The brand I chose used the least ingredients: just quercetin and cellulose, a common binder made from plants. I even checked it out on their website: “hypoallergenic plant cellulose.” Sounds great, right?

Three days of flu-like lethargy and one seizure later, I discovered the plant they used was Southern Pine. Pine is one of my most severe allergies. Why the hell would you put a Christmas tree in medicine?

Know what’s in your pills. It’s not sunshine and happiness. Or peanut butter and ice cream.

Happy first birthday, kidney stone

Yes, that’s right. I am celebrating the one year anniversary of passing my first kidney stone. Why would I want to celebrate such an excruciating memory?

Because it taught me I’m a badass.

Maybe a naïve badass. Initially, I tried to meditate through the pain, but couldn’t shake the fear that maybe one of my organs was about to explode. So I went to the ER and was diagnosed with a 5mm stone and a few smaller ones. Begrudgingly, I began pain medication around the clock. I started to feel pretty good. So naturally, I flew to Nashville for a work conference.

And then that f’er decided to move. Good thing “kidney stone” is free ride to the hospital from strangers. (“Oh, bless your soul, my daddy used to get those. A grown man, and he’d be on the floor crying.”)

To say I was a badass does not also mean I was a peach throughout the experience. I quickly surpassed the ugly cry. Every time the pain medication wore off, I became a werewolf, growling and clawing in my hospital bed, restrained only by the IV that became my lifeline. I was admitted for surgery, but sure enough I passed that f’er as the sun rose.

And I didn’t even get a gold star. Or card. As if nothing happened, I had to submit a summary of the work conference that I half missed.

Our society struggles to recognize the sour milestones of our lives. I celebrated my MCAS diagnosis with donuts. And it made everyone uncomfortable. One guy even tried to put a donut back once he realized the occasion. Although bittersweet, my diagnosis was a more memorable and life-changing milestone than any of my birthdays.

The internet says passing a kidney stone can be more painful than child birth. I abandoned the 1-10 pain scale long ago, but find the kidney stone pain comparison very useful nowadays. Instant credibility.

So today I’m celebrating that little stone that now resides in a laboratory in Tennessee. And the absence of any siblings since. Sometimes pain is inevitable and there is nothing to do but endure it. With MCAS, pain is a daily visitor. I suggest you celebrate when you escape it.

Happy Rare Disease Day!

Happy Rare Disease Day! Please wear jeans today to raise awareness.

Because I can’t. I cannot fit in any of my jeans at the moment, thanks to prednisone. Even if I could fit, it’s unclear if my skin would tolerate it. Yes, I am now “allergic” to many of my clothes.

On my first post-diagnosis Rare Disease Day, this is what it means to me to be one of the rarities:

I am a guinea pig. It is scary, isolating, and frustrating.rdd-logo

I am a research participant in pioneer studies – that are underfunded, primarily with philanthropy.

I don’t have adequate medical care. It’s typical to wait three to six months to see a doctor who understands my disease. And money always is a factor.

I carry emergency protocol with me at all times, because most ERs are unfamiliar with my disease and how to treat the life-threatening reactions it causes.

I am one of the lucky ones. I have a diagnosis. I am fortunate to have ping-ponged my way to a world-renowned specialist after decades of suffering. My diagnosis unlocked years of validation.

Today is hard and tomorrow will be hard. Everyday, I try to adjust to this purgatory, as I wait for better understanding of the disease and treatments.

However, I have hope that someday it will get a little easier. In the meantime, I am thankful for the support I receive at home and through the rare disease community.