The Hellness Assessment

Every November, I feel compelled to smash my computer and light the room on fire while completing my employer’s wellness assessment. The supposed purpose of the assessment is “to support your overall health and wellbeing”. In actuality, it raises my blood pressure and triggers hives and emotional instability. Nonetheless, I submit myself to its faceless insults in order to save $500 on my health insurance premium each year.

The assessment’s 50+ questions remind me that every aspect of my health sucks. As if I’ve forgotten. The “right answers” are obvious, but I am committed to living my authentic life and answer with unabashed honesty. Here’s an example:

Pain assessment

The assessment should have ended right there. They should have sent me a gift basket and left me alone.

But it continued:

  • Have you had a flu vaccine in the past year?
  • How much rigorous activity do you do in a week?
  • Do you eat high fiber foods?

I do not do any of these things, because they tend to send me to the ER. If the goal of this assessment is to lower my health costs, then I should be congratulated for not doing these things. Instead, the assessment ridicules me. “Eating healthy is like medicine – and you may want to try some of that medicine. Work more fruits, veggies, and whole grains into your diet to refuel your body and brain.” As if I shoved two colonoscopy tubes up my butt without trying eating healthy first? I bet these are the same people that think beans are a magical fruit.

At the end, the assessment tells me I am “going in the right direction” while simultaneously displaying a chart that shows I am “well below average”. Well, thank you for reminding me I’m merely surviving. My list of weaknesses includes nutrition, physical activity, pain and stress. Do you know what would lower my stress? Eliminating this damn assessment.

Finally, the assessment recommends a list of activities, or in my case, ways to die. At first, I was encouraged that this year’s assessment included a box to indicate a disability that limits physical activity. However, apparently it had no bearing on my results and the recommendations included biking to work every day.

There are two recommended activities that don’t threaten my physical health. However, one of them almost crushed my mental health: coaching from a certified nurse. Last year, I signed up for phone coaching with the hope of venting my frustration and holding someone accountable. On the first phone call, the nurse related what she learned about mast cell disease on Google. On the second phone call, she suggested more activities and I explained how each one would kill me. On the third phone call, she recommended I keep reading library books for pleasure and wished me luck. That was three hours of napping potential that I can never get back.

The other activity recommended by the wellness assessment, the one activity I am able and willing to do, is write an advance care directive. As if I wasn’t in a foul mood already.

Listen here, wellness assessment people:

I am enough despite your ableist assessment. Do not compare me to other people. Do not waste my time with your insulting questions and recommendations, while I fight bigger battles like ADA accommodations and access to medical care. I see more than a dozen doctors a year; it’s best to let the specialists make recommendations. I am a fabulous medical unicorn. I deserve infinite gold stars. And a gift basket.

Operation Crazy Straw Part Two: Delayed Reaction

“I don’t hate you,” I told my urologist when I return to his office for my stent removal.

“Not yet,” he smiled.

I don’t usually tell my doctors whether I do or don’t hate them, but my urologist warned me multiple times that I would probably hate him for placing a stent. Strangely, I had opposite experience, little to no discomfort for five days. At worst, I yelped when I bent over the straw poked me in the bladder. I took prednisone and Benadryl religiously to suppress any mast cell reactions.

I was most anxious for the grand finale: pulling the 8” crazy straw out of kidney via my pee hole without sedation. Fellow kidney stone suffers warned me that I might scream, but the pain would only last a few seconds. Before surgery, I told my doctor that I was most worried about the barbaric stent removal, not the pain itself, but a mast cell reaction to the pain.

I set my bright yellow EpiPen in front of my urologist, a subtle threat that I was to be taken seriously.

“You know how to use one of these, right?” he joked uneasily to the nurse.

“I’ll handle the EpiPen,” I asserted. “I premedicated an hour ago. Here’s my emergency protocol.”

I lay down on the exam table wondering if I should be more uncomfortable about my nakedness. Sometimes, it just feels good to lie down.

“So, how is work?” my doctor asked.

“Well…” I said, as I caught a glimmer in his eye and felt a sharp tug in my bladder that shot to my kidney. A confusing mix of nausea and relief rendered me silent as the plastic stent dragged slowly out of my kidney, ureter, and finally bladder. Yup, it definitely was over 8 inches.

“That was easy,” I said, sitting up bewildered.

At noon, I returned to work feeling like a badass with the urge to hula. I announced to my coworkers I had no pain for the first time in six months! Furthermore, I tolerated that crazy straw better than anyone! Better than a mother serving her kids milk! I updated my Facebook: “Stent removed. No anaphylaxis. No more pain!”

Around 2 pm, my badassery wore off and I needed a nap, so I drove home. Halfway through Despacito and my commute, I felt a sharp twinge in my ureter. The pain struck again and again, and I felt the prickly burn of hives erupting on my neck. By the time, I got home I was shaking in tears and I staggering to the emergency room. (Yes, I live next to a hospital. It’s weird and serendipitous.)

The pain in my ureter became so bad I prayed to lose consciousness. When my friend rushed in the door, I reached for her hand (a sure sign I’m in level 10 pain) only to realize I barely had the strength to grasp it. All of my muscles braced against the pain. I worried I would lose control of my bowels as I shook from exhaustion. I tried to muffle my sobs and slow my breathing to no avail. I would have rather given birth to twins. Naturally.

I believe I have (unwillingly) become an expert on the pain scale. MCAS can cause daily bone pain, neuropathy, cramping, and spasms. While I have not given birth to a child, I have birthed a 6mm kidney stone.

This was worse than passing any stone, the worst pain of my life. My CT scan showed right hydronephrosis and hydroureter. My mast cells had swelled my ureter shut and my kidney was backing up with urine. The nurse gave me IV Solumedrol, Benadryl, and Fentanyl. The Fentanyl allowed me to tolerate the pain until the Benadryl reduced the swelling (and hives all over my body).

With the pain and swelling under control, I went home to manage the reaction on my own with pills. BIG MISTAKE. About one hour later, I rebounded and blubbered my way back to the hospital on foot. (This is how rumors get started among watchful neighbors.) I knew I wasn’t going to die from my reaction, but for a few milliseconds I considered death better than the hell I was experiencing.

I learned two very painful mast cell lessons that day.

#1: Expect the unexpected.

Although I anticipated a reaction, the timing and intensity blindsided me. It would have been unsurprisingly if my mast cells had reacted to the surgical lasers or the stent. However, it’s incredibly rare (maybe unheard of) to react hours AFTER a ureteral stent is removed. Thank goodness I was close to a hospital.

#2: Do not feel silly for taking precautions. 

My anxiety about the stent removal was completely validated! In fact, I was not cautious enough! Retrospectively, I realized I let my Benadryl wear off right after the removal, because I felt okay. However, my mast cells needed continuous Benadryl.

So I asked to be admitted – my first hospitalization with mast cell disease.

To be continued…

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.