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.

Going to the bathroom with a service dog

I have a service dog named Sancho. He helps keep me alive.

People often see him and say, “I wish I had a service dog!”

I want to ask, “Do you wish you were disabled too?”

I would gladly leave my dog at home in exchange for a life free of fainting and suffocating. People tend to forget I have a service dog because of my disability, and while I can bring my service dog most places, I can’t go most places because of my disability.

Furthermore, there is nothing glamourous about being leashed to a service dog all day. I receive constant unwanted attention. Sancho wears a large “DO NOT PET” patch to ward off inappropriate touching. Nevertheless, every single person within a 50-foot radius wants to start a conversation about my dog. At best, they smile and say, “Cute.”

I refrain from saying, “I know he is, but what am I?”

Sancho is basically my shadow. Again, this sounds great until you’re sitting on the toilet willfully ignoring the stare of a poodle. (To be fair, I do stare at him while he potties. Maybe I should be grateful he doesn’t command me to “go poo-poo.”)

19025060_10109949467239830_204313425496703351_o

Sancho

When I started bringing Sancho to work, we had to learn how to cram ourselves into the bathroom stall without stepping on each other. (No accessible bathrooms on my floor.) Once inside, I had to teach him that peering underneath the stall was rude, no matter what you see, hear, or smell.

I believe public bathrooms should be a refuge of anonymity. I believe coworkers who start conversations while I’m in the stall should be fired. When I go to the bathroom, I want privacy.

In other words, I don’t want anyone to hear me fart and know it was me.

To my horror, I quickly realized Sancho’s furry butt revealed my identity in the stall. At first, I froze whenever someone entered the bathroom, refusing to make any noise whatsoever. Sensing the awkwardness, that person would then hesitate to make any noise whatsoever, creating a bathroom standoff. I waited them out every damn time. Soon I began to worry people would call me “the woman with the dog who hangs out on the toilet.”

To alleviate my anxiety, I came up with a more practical solution. I taught Sancho to tuck beside the toilet, completely hidden view. Now, after several months of practice, we enter the stall with the grace of Olympic ice dancers, and I rejoice in my dog’s ability to conceal himself.

Last week, I dropped Sancho’s leash on the floor, which is totally disgusting. (Another peril of having a service dog.) Within a split-second, Sancho picked it up, and I exclaimed, “Good job!”

Toilet paper rustled in the stall two doors down. I tried not to laugh.

Apparently, there’s a woman in our building who says good job to herself in the bathroom. Good thing no one thinks it’s me.

This is why I don’t go to urgent care

This week, I got normal people sick.

Luckily, I noticed the second my lymph nodes started to swell, because I am hyper aware of my body. I took a Benadryl right away.

Then I sat on the couch and contemplated if I was dying, because last time I got the flu I legitimately almost died from anaphylaxis.

However, I know catastrophic thinking is bad, so I decided to distract my thoughts by cleaning my condo. (Also, because I like to return to a clean home after near death experiences.)

Unfortunately, I started shaking from a low-grade fever and bronchospasms started stabbing me in the chest. I knew I should probably go to the emergency room to be tested for the flu, but sometimes I have to argue with the doctor just to receive fluids. The only certainty is the $100 copay.

I checked the wait time at my urgent care. None. Only a $25 copay. So, I drove to urgent care, which is literally one block away.

When I told the urgent care doctor that I was worried I had the flu and I have mast cell disease, she googled mast cell disease and told me I have a rare disease.

Fortunately, I held my tongue.

Unfortunately, my skin began to prickle.

So, I took another Benadryl.

I realized the doctor was terrified of me when, for the third time, she asked, “But you’ll know if you need to go the emergency room, right?”

I convinced her to order the flu swab test.

When she left the room, I looked in the mirror. Deep purple, bruise-like hives covered my face, neck, and chest. My lungs spasmed and I gasped for air. I needed to go to the emergency room.

Luckily, there was an emergency room across the street.

So, I ditched the urgent care and heaved myself through the darkness, snow, and winter air.

Although, it kind of felt good to be outside, because my entire body was burning.

Once I was in the hospital, I was totally disoriented and had to ask for help getting to the ER. The walk seemed a mile long, and I considered laying down on the floor until someone brought me a wheelchair or bed.

When I got to the ER, the staff was extremely nice. They escorted me to a bed, placed an IV, and gave me medicine right away.

Unfortunately, that medicine included steroids.

After several hours, my reaction went away, and I went home.

And now I owe $125.

The following day was Pi Day, and because I was pumped full of steroids, I was able to eat pie.

Because I was pumped full of steroids, I ate a concerning amount of pie.

Rare(ly diagnosed)

Today is Rare Disease Day and I started the day feeling like a fraud.

Kind of how I feel like a fraud when I have appointments at The Cancer Clinic. In the waiting room, I wonder if all the other patients know I don’t have cancer. Can they tell by my thick hair and rosy cheeks? Do they know I haven’t even tried chemotherapy? I feel sorry for myself sitting alone at The Cancer Clinic, yet I don’t even have cancer!

The truth is mast cell activation syndrome is likely not a rare disease. Some researchers believe up to 5% of people suffer from it! It is, however, rarely diagnosed for two reasons. First, it’s a newly recognized and very complex disease. It is the most confusing thing I’ve ever tried to learn. For reference, I’ve also tried to learn Russian, tax increment financing, and Twitter.

Second, diagnosis often depends a cold piss relay race across the country. You have to collect 24 hours’ worth of your pee in your refrigerator, pack it in a cooler, and bring it to a lab. The lab then ships it across the country and you pray it stays cool the whole time. For reference, I can barely give a urine sample in the ER without spilling it on myself.

This year, I teetered back and forth about celebrating Rare Disease Day. I don’t want to be the woman who cried “rare” only to inform everyone that in fact naughty mast cells are lurking everywhere. Yet MCAS patients face the same obstacles any rare disease patient faces: lack of information; few experts; inadequate treatments; and little to no research funding. So where do we fit in?

It’s kind of like when the check-in nurse at The Cancer Clinic learns I have MCAS and insinuates that cancer would probably be easier. And then I have no idea how to feel.

The truth is they all suck: cancer, rare diseases, and MCAS.

Rare Disease Day raises awareness about patients’ lives and advocates for research funding for treatments and cures. MCAS taught me about Rare Disease Day, but I don’t need MCAS to celebrate it. I’ve decided, rare or not, I’m crashing this party (via the Internet (because my mast cells don’t like actual parties)).

Learn more about Rare Disease Day at http://www.rarediseaseday.org.

I’m allergic to my own hormones

“Are you in pain today?” the nurse asks looking up from the computer screen.

“A four,” I say, anticipating her request to “rate the pain on a scale of 1-10”.

She reads the next question, “Do you feel safe at home?

“Well, I live alone with my poodles, so yes… except when one of them farts and I think I’m going to die of asphyxiation.” I laugh at my own joke. The nurse does not. Had she heard that one before?

The nurse continues, “When was the last day of your first period?”

“2013,” I grin. This time I’m not joking.

“Are you on some kind of treatment?” the nurse asks.

I consider telling her I have a five-year-old fetus growing inside of me, but I’m too tired to explain what humor is. The truth is hard enough to believe anyway. “Yes. I’m allergic to my periods.”

She takes my blood pressure and then flees the room.

*****

Five years ago, I didn’t believe anyone could be allergic to their own hormones. How can you be allergic to yourself? Doesn’t an allergic reaction entail hives and sneezing? I did, however, understand that hormone fluctuations could ruin a woman’s life. With the help of the internet, I realized I was experiencing premenstrual dysphoric disorder (PMDD).

PMDD was my most severe mast cell activation symptom from age 15 (when I got my first period) to age 27 (when I started taking continuous hormone pills). In fact, aside from my reactions to hormones, I felt healthy. Like MCAS, at that time, PMDD was relatively unheard of and provoked a lot of skepticism. No lab test can diagnose PMDD. Women with PMDD have the same levels of hormones as women without PMDD.

I wish I had a heartwarmingly funny way of describing PMDD to you, but the truth is it is living hell. Imagine a panic attack that lasts several days every month. Imagine being overwhelmed by impending doom, even though nothing has happened. Thoughts of hopelessness and paranoia cloud your mind, as your body becomes heavy and exhausted from crying. Your mind suggests death as a better option, while you try to pretend you’re okay for your job and your relationships.

For twelve years, I sought relief from this torture. I tried antidepressants, therapy, and supplements. Finally, a compassionate midwife worked with me to find a hormone pill that my body tolerated continuously. I learned no hormone fluctuations equaled no PMDD. The curse was over.

When I met my mast cell specialist several years later, he asked me to list my medical history. I told him that I was on continuous hormones for PMDD.

“Premenstrual dysphoric disorder,” I explained. He nodded, knowingly. His familiarity was curious, so I added, “I attempted suicide a couple times.”

He nodded again, completely unfazed. Had he heard me correctly?

Soon after, I learned that hormones can trigger mast cell reactions and many women with MCAS use medication to suppress hormone fluctuations. I learned doom is a hallmark sign of a severe allergic reaction. These days, when I’m anxious, I try Benadryl and it often helps.

Is mast cell activation the cause of all PMDD? I do not know, but I am suspicious. Am I insinuating women with PMDD also have MCAS? No, although it’s possible. Mast cell activation is not the same as MCAS. However, I wish I had known about MCAS sooner and gotten tested. Perhaps, I may have been able to stop the progression of my disease.

*****

As a final note, I’d like to share my biggest pet peeve of all time: women calling all birth control pills “the pill.”

When women tell me “the pill” made their PMDD worse, I want to ask, “Which fucking pill?”

The truth is some kinds of birth control pills absolutely make PMDD worse, while others, if taken continuously, can suppress PMDD completely.

Here are my tips for finding the right hormone medication to suppress PMDD:

  • Monophasic, not multiphasic
  • Avoid ultra-low dose
  • Continuous use (no inactive pills), not regular use
  • Take it at the exact same time every day
  • Be patient as your body adjusts to the new medication
  • Try another one if the first doesn’t work

As always, talk to your doctor about any concerns.

Beware of vision boards

In January 2015, I was full of ambition. I had just finished a master’s degree, my city council campaign, and a cruise to the Bahamas. I was ready to carpe diem the shit out of the new year.

On TV, I heard a bestselling author tell Oprah how she attributed her success to a vision board. I wanted to publish a book. I wanted to meet Oprah. I wanted to use modge podge.

I riffled through magazines and scrapbook paper, selecting the quotes and colors that would best represent my future self. As I cut out my favorite images, I imagined the vacations I would take, and the memories I would make.

What else did I wanted to accomplish? What else should I accomplish?

I recalled my recent book club meeting. The average age of the group is 70, but they kindly adopted me. These ladies are everything but old. Over brunch, they shared their recent adventures: political activism, concerts in the park, and tours through other countries. I listened silently, counting the years until my retirement. The truth is I never could keep up with these ladies.

I don’t remember which books we talked about that day, but I’ll never forget when the hostess mentioned she did yoga every morning before her walk around the lake. And every morning, her routine included a headstand.

Now I’ve tried to learn how to do a headstand in yoga class, but I was thwarted by my fears of falling and farting. In the security of my own home, my dogs dodged my flailing limbs. The blood rushing to my head felt less cool without the company of hipsters. But now that I knew that a 70-something could do it, so should I.

I carefully cut out the silhouette of a woman standing perfectly on her head and added it to my vision board.

***

Unfortunately, my body had other plans that year. Three weeks later, my legs weakened and I fell down the stairs. I quit yoga, suspecting I had over done it, but as months passed, even walking became a challenge. I spent most of the year fighting to hold on to what I had, instead on building upon it. I tucked away my vision board, hoping to regain control of my life.

***

This January, I stumbled across my vision board once again. I picked up it hesitantly, not wanting to stir feelings of disappointment or grief. As I studied the images, I realized I had unintentionally accomplished most of my vision for that year. For example, I read a surprising number of books as a result being stuck on the couch. When I had been given a burst of prednisone, I drove wide-eyed across the entire state to visit parks with my dogs. It was a terrible year, but there were moments of resilience.

However, in the middle of the board, I sensed the woman in the headstand laughing at me.

Oh my god. I was that woman, I realized. My world turned upside down that year. I had learned to stand on my head. How the hell was I supposed to know vision boards could be interpreted as metaphors?

I modge podged a prophecy.

***

So this year, I made another vision board. Much. More. Carefully.

I probably should have glued pictures of money and the Nobel Peace Prize to the board, but I try to be reasonable with the universe.

This year’s vision board features images of self-care, a quote from Mr. Rogers, and zero crazy yoga poses. There is one image that may be misinterpreted for me turning into a marshmallow, but prednisone has already accomplished that.

IMG_5724

My 2015 vision board

IMG_5723

My 2018 vision board

I’m allergic to the cold and my dog won’t poop

As a Minnesotan, I try not to complain about cold weather. All November, I tell myself winter teaches us how to fully appreciate the warmer things in life. However, when the wind chill drops below -30F and I have to put a second pair of pants, my attitude gets icy.

I don’t want to wear any pants.

Winter is especially hard for me, because I am legitimately allergic to the cold. (Yes, I know this makes me sound like an idiot for living in Minnesota.) Discomfort and frostbite are the least of my worries, because if I get too cold, my mast cells induce temporary paralysis. Yes, temporary paralysis, as in I lose the ability to move for several hours.

Like any Minnesotan, I am prepared for winter. I have a remote car starter, two attached parking garages, a face mask, and a grocery delivery guy who wonders why a single lady needs 24 rolls of toilet paper.

But I also have two toy poodles, one of which shows no concern for my well-being.

So last week, when the morning air was so cold it hurt healthy people to breathe, I thrust my poodles out my patio door. “Go poop!” I whispered as authoritatively as possible without waking my condo neighbors. The dogs trotted like two wind-up toys about three feet before freezing mid-step, each holding one paw in air. I ran out to retrieve my poodle statues.

As I untangled eight Velcro booties, I wondered if I was going to be late for work and if this was an acceptable excuse. I’m sure you’re not supposed to wrap the straps as tight as tourniquets around their paws, but I’ve played enough rounds of “Find The Dog Boot” to last a lifetime. Once again, this time with boots, I shooed the dogs outside. They high stepped halfway across the patio. One poodle pooped, but the other glared at me.

“I don’t poop in boots.”

“How about socks?” I negotiated.

If you think securing eight dog boots is a feat, try stuffing four paws into socks the size of a thumb. As I unsnagged each toenail from the knit, I tried to recall why the hell I bought dog socks in the first place. Since when does my dog have his choice of footwear?

IMG_5423

The dog socks

He clearly preferred the socks as he romped around the patio. However, no poop – unless you count the rabbit dropping he ate with gusto.

The poop boycott continued for several days. Yet, dieting was not part of his New Years’ resolutions and he did not consider limiting his food intake. One night, I felt sorry for his discomfort, but mainly anxious about the impending spaghetti factory explosion, so I put on my coat, hat, boots, gloves, scarf, mask, and his socks. I took him to the other end of my condo building, where I could demand him to poop as loudly as I wanted. We walked concentric circles in the snow until he finally popped a squat and I squealed victoriously. Although most of my skin was covered, the cold permeated my bones as I waited for him to unload.

Twenty minutes later, in the warmth of my condo, I felt a wave of heaviness and doom, the funny feeling I get when my mast cells are about to wreak havoc. Quickly, I made a pot of organic mac and cheese, the obvious first step in triaging most of life’s problems. As my arms got harder to lift, I knew I had stood outside too long. I grabbed my bowl of pasta and phone, and settled into a nest of blankets on the couch.

I used to panic from these reactions, assuming I was having a stroke. When I realized I wasn’t dying, I’d channel my inner Jillian Michaels, “Unless you faint, puke or die… keep walking!” But my limbs refused to move. I tried to make the best of the situation and meditate, but instead I’d ruminate on everything I needed to, but couldn’t currently, do. In the process, I’d forget my paralysis and try to get up again, refueling my frustration and determination to will my body to move. Eventually, I’d fall asleep.

This time though, I scarfed down my macaroni (hunger and paralysis are a bad combination), turned on a podcast, and prepared for nap time. My poodle approached the couch slowly, requesting permission.

“Don’t you dare ask me to play ball,” I warned him. He jumped onto my lap and curled into ball.

I stopped keeping score of my poodle’s bowel movements, focusing on surviving the workweek with angry mast cells. The cold-induced fatigue forced me to skip dinners and resign myself to early nights in bed. By Friday afternoon, I was eager to go home and collapse.

However, when I opened the door, I was greeted by a pungent smell. My poodle was suspiciously waiting for me in the doorway.

“Where did you poop?” I demanded. He knew exactly what I was referring to, but remained committed to his belief that silence is the best defensive. So I began my Friday night with a turd hunt.

I tried to imagine where I would hide a poop. Behind the couch? Below the dining room table? In the closet, among my shoes? The smell was powerfully misleading. As I searched, I estimate how much of my damage this would cost me. In the end, I found it in the most unexpected room. And then I wasn’t even mad.

IMG_5327

The deliberate accident

“Did you try to poop in the toilet?” I asked, trying not to giggle.

He wagged his tail.