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.

The Haunted Laundry Room

I wait until the building becomes quiet before opening my door. With a basket on my right hip and a jug in my left hand, I carefully lumber down the empty hall, doing my best not to rouse anyone. I never know if I’ll have enough time.

At the end of the corridor, I set down the jug and unlock a door. The automatic light flickers on and I peer inside. Along the wall, the mouths of two machines gape open and empty. The table is bare. A familiar, putrid smell lingers in the windowless room.

I close the door behind me and begin cleaning the first machine. I spray the inside of the metal drum and scrub around each of the tiny drain holes. I work quickly, yet thoroughly, until the tub gleams and my nostrils sting from vinegar. I insert my quarters, load my laundry, and pour clear detergent and more vinegar into the machine. The machine jolts awake as I press start and I scurry back to my condo.

Thirty-four minutes later, I unlock the door and scan the laundry room again. I am still alone. I am safer alone. I quickly move the damp clothes to the dryer and refill the washer with more laundry. I toss six wool balls into the dryer and press start on both machines. The rumbling grows louder. Perhaps, this time everything will go as planned.

An hour later, I return to the laundry room. The machines are quiet, and the air is warm. I open the dryer door and scream. On top of my clothes lays a translucent white square. I stare in disbelief at this miniature ghost. I know I checked the dryer before loading my clothes. I always check. I seize the dryer sheet by its very corner and fling it into the nearby trash can.

With both hands, I draw a warm ball of clothes to my face. A sweet scent fills my sinuses. For a split second, I am transported back to my childhood bedroom, to my yellow blanket my mom used to wash. Suddenly, an invisible force begins to choke my neck. My skin prickles and burns.

I rewash the clothes, but still the scent haunts me. When I return to the laundry room for the fourth time, tired and swollen, a second basket looms on the table. Unfamiliar colors swirl inside the clear door of the washing machine. On top of the machine, a bottle of detergent drips with blue slime.

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.