I suck at four day weekends

I haven’t blogged in a bit, because I’ve been feeling sorry for myself. I squandered a four day weekend. Woe is me.

I rarely get vacation days, because all of my paid time off is used toward sick time. I think it’s mighty unfair that chronically ill people can’t afford vacation days because they spend their time on trips to Pain Island and Brain Fog Beach.

Yes, I’m in a sad and bitter mood, because I was given the rare opportunity of four days of rest and I completely overcommitted. I decided would compete in an AKC agility trial all four days. I would like to remind you that I am allergic to exercise. And also dogs.

Agility is the dog sport with the tunnels, weave poles, and other obstacles. Each run lasts about 50 seconds, so with premedication my body can tolerate a couple. But not TWELVE. I told myself all the pain would be offset by an armful of ribbons and maybe a new title. Instead, I came home with zero ribbons and a few embarrassing videos.

It turns out almost everyone who signed up for all four days regretted it. Why do we do this to ourselves? Why do I forget my limitations around others? Do I enjoy the disapproving looks from my poodle?

I struggled with overcommittment before I was diagnosed, which certainly contributed to the severity of my disease. However, now I face violent and serious consequences.

Like alien nightmares.

It was a short dream on Sunday night. I heard a siren and instinctively began running, trying to find somewhere to hide. Suddenly, the floor I was standing on started to rise toward the sky. The sides of the floor folded up like a box and then a spaceship, and I realized I had been captured by aliens.

I awoke sickened with terror, only to realize I couldn’t move at all. Bursts of hot pain began shooting down my arms and legs. I watched helplessly as my limbs shook from spasms. In reality, I had been captured by my mast cells in the dead of the night.

The attack left me exhausted physically and emotionally. I felt anxious about returning to work unrefreshed, but forced myself to attend the remaining day of the competition. When would I feel refreshed again? Weeks? Months? I came home and cried irrationally at the possibility of never enjoying a vacation again.

Then I ate a chicken quesadilla. I watched Season Five of Girls and read David Sedaris’ “Naked.” My mast cells settled down too. Self care isn’t hard. The hard part is saying no.

I bought some pictures at the trial to cheer me up. Because I look super athletic. (They cropped out my moon face.) I guess people usually buy the pictures for the images of the dogs.

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Photo credit: GreatDanePhotos

Perfume is the new cigarette smoke

It’s National Fragrance Day. I can’t think of a stupider occasion.

Conversely, it’s World Poetry Day. So, I wrote a poem.

Your smell

Makes me swell

And feel like

I’m burning in hell.

To be honest, I used to scoff at others’ fragrance sensitivities. I thought people complained because they didn’t like a particular smell. I didn’t understand it was a medical issue with serious consequences.

Here are few of my MCAS symptoms that are triggered just from 10 seconds of exposure:

  • Throat swelling: feels like someone is choking your neck
  • Nausea, diarrhea, and cramping: feels like food poisoning
  • Liver swelling: feels like being punched in the stomach
  • Hives: feels like mosquito bites on top of sunburn
  • Tachycardia: feels like running a marathon you never trained for

Recently, Dior came out with a perfume campaign that I can support. It’s called Poison Girl. In the commercial, a woman with no pants crawls across the screen and says, “I am not a girl; I am poison.” Yazzzz, that is what you are! But poison is not sexy.

I truly believe perfume is the new cigarette smoke. Our grandkids will think we were idiots for polluting our lungs with chemicals and destroying our immune systems. I predict over the next few decades legislation will ban fragrances in public places. In the meantime, stay the hell away from me, poison girl.

Spoonies are all around us

I signed up for a blog conference without considering how I’d actually attend. My challenges began with registration. Was my lunch preference vegetarian, vegan, gluten free, or no special dietary needs? I totally would have sent a snotty gram to the event organizers about food allergy awareness, but my dietary needs are hard for even me to understand (low histamine, low FODMAP WITH gluten – don’t you dare deny me a donut). When your list of allergies includes most brands of water, seeking accommodations often seems unrealistic.

I showed up not knowing how I would survive the first session, let alone the whole day. Conferences are high energy networking opportunities. I don’t have much energy and I’m allergic to people. One person’s perfume can send me to the ER. So I snuck into the back of the auditorium and sat among the guys. Pro-tip: men tend to be less fragrant. Unless you mean body odor. But I’m not allergic to body odor because this disease is cruel and ironic.

By the second session, I was feeling a little more confident. I had decided my disheveled appearance was actually “on brand” for my blog. I started thinking, “Maybe I can do this people thing!” Then a guy sat down next to me and fear swept in. I thought, “Maybe I don’t want to do this people thing!”

Of course, he said hi. I replied with a convincing smile, because my Minnesota Nice upbringing overrides my social anxiety. “What do you blog about?” he asked.

You don’t want to know, beauty and fashion, and my dog were responses I considered. Up until this point, I had fooled everyone into thinking I’m was a functional human. But I figured I might as well be honest, since chances were high I’d be leaving this conference by ambulance anyway.

“I have a rare disease that causes me to be allergic to most things. So I write about chronic illness and disability. I am trying spread awareness and help others with mast cell disease,” I said.

“That’s cool. I have Crohn’s disease,” he replied.

“I’ve had two colonoscopies!” I blurted out. Yes, I said that. “I mean that was one of my misdiagnoses – ulcerative colitis, actually. I have a bunch of mast cells in my intestine. My doctor didn’t know what was going on, and I actually had to have butt surgery.”

Protip: Do not affectionately call your past procedure butt surgery, even if it is anatomically accurate. Especially around people you’ve just met. Even if they have Crohn’s disease.

But I was still convinced humor could save me. “They screwed up my first colonoscopy, so they gave me a two for one deal on the second,” I joked. He stared without the slightest detection of sarcasm. “I mean, not really. My deductible was met.”

In that moment, I realized I am still learning how to convey empathy. I desperately wanted to express my understanding. That I had undergone all of the procedures that inflammatory bowel disease patients endure. That I spent countless hours in the bathroom telling myself poop jokes to soothe the excruciating pain. That I felt a rare connection, and that I was grateful because I knew he understood a part of my experience too.

After my torrential overshare, he told me that Crohn’s had forced him to get a colostomy. I’d like to think my candidness encouraged him to share this. I wholeheartedly listened to him tell his story of recovery and remission. Someday, I hope to tell my story with as much grace.

With that bit of inspiration, I survived the whole conference, aside from resting at home over lunch. The day ended with a professional audit of my blog. Again, my confidence wavered. My blog was not the caliber of the other blogs. I didn’t want to embarrass myself or waste anyone’s time.

I began trivializing my blog as soon as I sat down with the auditor, which launched into another anxious soliloquy about my inexplicable disease. At least it was the end of the conference and I knew I could flee from the embarrassment. To my surprise, she said, “I think your blog is great. It is well designed and the content is engaging. My daughter has fought leukemia twice and I know how important the blogging community is for people suffering from medical issues.”

She completely understood my audience, commended my goals, and offered valuable advice. There were tears in my eyes. (Thank goodness did not share that I too see a hematologist and know all about bone marrow biopsies. Blood is way less funny than poop.) I left the conference without a better understanding of SEO, plugins, or analytics. Instead, I left full of inspiration and a sense of belonging. Spoonies are all around us, despite the challenges, quietly listening with stories of their own.

P.S. Are you still confused what spoonie means? Read “The Spoon Theory” by Christine Miserandino.

P.P.S. Thank you to Allie, Ann, and Ashley for supporting my blog. Wow, people with “A” names are super generous. (Just kidding, you non-A-named people who helped me in other ways this month even though I resisted it because I’m still learning to accept help and warm fuzzies.) If you too would like to overwhelm me with feelings of loving gratitude, or if you find sadistic amusement in my attempts to survive a world I’m allergic to, please consider supporting my blog.

So this is how the Grinch felt

Every year, I receive a free Christmas tree from my realtor. I have always been allergic to evergreens, so I place them on my patio and wrap them in lights. To me, the trees twinkle more beautifully under a fresh layer of snow.


This year, between an allergy to the cold, an allergy to the tree, and tendency to dislocate my joints, I accepted I would need help. I am always reluctant to ask for help, and rarely do, but I thought the tree might lift my spirits and distract me from pain as I rest on the couch every night. So I asked four of my closest friends and family for help. Four people should be enough to deliver and set up a Christmas tree, right?

This is what I got.


A giant pipe cleaner.

You see, one of my “helpers” threw the tree on my patio, but did not set it up. So the tree lay bound and freezing on my patio. For a week. Until the next “helper” set it in the stand, shrugged their shoulders, and left.

Heart pounding with anger, I stared at the tree. “Put it in your condo to thaw,” the “helpers” said. I can’t. Another insult to injury. I’m allergic. That’s the point. Never mind, the bag of lights sitting untouched by the door. I forced myself to sleep to stop the angry ruminations.

I woke up at 5 am, enjoying 3 treeless minutes, before I open patio blinds to let the dogs out. There lay the tree, impossibly more pitiful than before.


Adrenaline surged as the last year of disappointments spun in my head – holidays spent alone, nights without dinner, and weeks without calls or texts. For months, I had ignored the pain of inadequate support, but here was a visual reminder, demanding to be seen, indisputably pathetic.

Maybe this time was different, because my adrenals are finally recovering after a year of prednisone. Maybe I’ve moved on from the first stage of grief to anger. What I know for sure is I had enough adrenaline to shove the tree over a four-foot patio wall and drag it half a block. (Of course, I put on protective gloves first.)

My intention was to throw it in a dumpster, treestand and all, never to be seen again, but my rage ran out quicker than I expected. So I dropped the tree and scurried away in the darkness of the early morning. I spent the rest of the day nursing a dislocated disc in my back.

For several days, I cautiously spied on the abandoned tree, fearful someone would connect my interest with ownership. I was certain someone would adopt it, but no one did. I began to feel guilty. The tree was just a victim of heartless humans. What if I was the tree?

And then it snowed. Five inches that would inevitably last until spring. The tree was dead and buried. Or so I thought.

Three days later, driving home and caroling along with the radio, I screamed and stomped on the brakes.


It was back. From the dead. My zombie Christmas tree.

It snowed other five inches, cementing the treestand in snow for the coming months. Oh Christmas tree, oh Christmas tree…

Letting go of holiday traditions

A couple weeks ago, my brother texted me, “What can you eat?”

“Plain turkey and plain mashed potatoes made with lactose free milk,” I replied.

“Well, I want to make this,” he wrote and sent me a link to a recipe.

…for a maple-chilli-mustard turkey.

If my disease was cured tomorrow, I still would not eat a maple-chilli-mustard turkey. I’m not sure why he bothered to ask about my food allergies when he had his heart set on making a digestive bomb for any eater. Clearly, this was a warning, not an accommodation.

Before my diagnosis, I clung to traditions, even though the holidays were becoming increasingly painful. I do not recommend stuffing your body with Thanksgiving dinner despite knowing your intestines have already shut down. I definitely do not recommend following that up with Black Friday shopping. There is no joy in trying clothes on a bloated, cramping body at 3 a.m, in an ice storm.

At least now I know which foods to avoid. However, my triggers have grown to include scents, the cold, and stress. So this year, I’m letting go of holiday traditions where my mast cells can’t be accommodated and taking more time to rest.

I am going to try to attend Thanksgiving dinner today. I won’t be eating much, but I will enjoy watching my parents pretend to enjoy that maple-chilli-mustard turkey.

WTF Target

Shopping is NOT cheaper than therapy – but it’s pretty effective. Target was my place of healing for many years. I swear I could feel the endorphins and dopamine pump into my bloodstream as I filled my cart.

Today, Target is a grueling excursion, because my bloodstream is loaded with debilitating amounts of mast cell mediators. For many months, I was insecure about my disability parking certificate. Then I realized I was giving myself pep talks in the parking lot just to get from the car to the store. I put off my errands as long as possible, but everyone runs out of toilet paper and prednisone eventually.

Recently, I was hobbling through Target, when a canvas grabbed my attention. The bold, white text stated, “It doesn’t get better than this.”

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I read it again wondering if there was a typo or if the Benadryl was interfering with my ability to read. Nope.

I tried to think of who this half-glass empty mantra is intended for. Maybe new parents drunk on baby love hormones? Maybe the baby? I suppose not much is better than around-the-clock room service and some to wipe your butt. A baby’s only expectation is to live. But what happens when the kid grows? And learns to read? Sorry, Timmy, you’ve peaked.

Naturally, I posted this picture on my Facebook. Kudos to Ryan for demanding I go back to the store and place Eeyore next to it. I contemplated going back and buying it at the pharmacy, along with my nine prescriptions. Then I would strap it to the back of my service dog, so that when I go to hospital for reactions, I will have something to hang on the wall.

The truth is it usually gets better than this. And if it doesn’t, I don’t want to know. I try to make the best of each moment with the help of Big Pharma.

What mantra gets you through the day?

P.S. In case you missed it, for actual inspiration, check out my latest post on The Mighty, “Three truths to remember when defending your health”.

It’s my party and my mast cells will react if they want to

If I go to the ER today, will they give me a free birthday IV? How do spoonies celebrate their birthdays?

Today is my birthday, the first since my MCAS diagnosis. My mom kept pestering me to tell her “what I want” for my birthday until I snapped “a fecal transplant”, because I don’t know what I want anymore and I’ve learned that mentioning poop is an effective way to end a conversation. (Although, I’m not certain fecal transplants are promising for MCAS.)

I know what I don’t want. Surprises. I suppose, like many people, I’ve been saying this for years, but this time it’s medically necessary. I am “allergic” to surprises. It doesn’t matter if they are good or bad surprises. If my heart rate increases, I start to react. Here’s an example:

It was a typical, weekday morning commute – sipping coffee, sleepy-eyed behind sunglasses, transitioning to wakefulness in traffic. Per usual, I was daydreaming about writing a bestseller, while listening to my favorite podcast, So You Want To Be a Writer. I like to think of the co-hosts, Val and Al, as my long-distance Australian friends, but really I’m just an adoring fan.

Several weeks before, I had submitted a listener question on Facebook, but it was never discussed. I assumed it was deemed stupid, because I am an insecure pipsqueak in the world of writing. (I still have normal people problems, too.)

So I was rolling alongside dozens other half-awake Minnesotans, when I hear an ominous, “Hello, Keeya Steel.” I swallow air in fear Al may jump straight through my car stereo next. Val echoes, “Yes, hello, Keeya!” For a second, I was convinced a direct line of communication between my car and Australia had been established. As they went on to address my (not stupid) question, I realized I was not in the Twilight Zone and my fear turned to my pounding heart.

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Although FitBits aren’t always accurate, mine helps me stay out of trouble.

Sure enough, what should have been a lovely surprise, triggered a reaction. I anxiously monitored my heart rate on my FitBit, chewed some Benadryl liquid gels (yes, disgusting), and prayed I would not need to be rescued on the highway. Thankfully, I made it to work, still breathing, albeit covered in hives.

***

So my wish is for an uneventful birthday.

I should mention, today is my 30th. This milestone compounds the pressure to celebrate. The truth is these “milestones” are a crock of fecal transplants. They don’t define how you feel or who you are.

This year has taught me to celebrate each day, whether I’m 29 or 30, well or unwell. I am grateful for my time in this wild world and for the crazy people who help me to be here.