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.

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.

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?

Instead, 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…