Coloring is hard, friendships are harder

“When can I come over?” she messaged me.

I panicked. Does she know I am boring, feeble, and can’t offer anything except Fiji water?

For months, I had been writing the saddest story of abandonment (starring ME) in my head. None of my friends had visited me since my diagnosis. Unable to leave my house, I wished for movie nights and home cooked meals. When wishing proved futile, I alluded to my chronic illness fantasies on Facebook to no avail.

What if we have nothing to talk about and she decides I’m a total loser? Do you know what’s worse than no friends? Rejection. I hope she forgets me entirely. 

“Wednesday?” she messaged me.

Either I would have to accept her offer or wither alone in my hypocrisy. I reminded myself that she used to work in home care, and therefore was professionally trained to deal with my awkwardness. “Okay,” I said.

She did not arrive alone. Behind her, she pulled a suitcase full of coloring books, pens, and markers. We spread them across the table and began coloring our respective pages. I don’t usually enjoy coloring, but I was thankful to have company and something to focus on other than my 43,295 allergies.

Over the next several months, she continued to visit and even gave me a poodle coloring book. I warmed up to these visits. Maybe a bit too much.

Damnit, I wrecked the best poodle in this book. I couldn’t have picked an uglier color. Now I’m going to burn the whole book. I growled with frustration and showed my friend.

“Well you don’t have to sell it!” she exclaimed. I was stunned by her frankness, and then I laughed. A true friend doesn’t sugar coat your ugly poodle.

I’m so grateful my belly button exploded

To clarify, I wasn’t so full of gratitude that it caused my belly button burst. Rather, my belly button exploded, and I am really glad it did.

Yes, it really exploded.

I was innocently typing on my laptop, when I felt an itch on my stomach. Assuming it was a mast cell induced rash, I lifted my shirt and pushed on my abdomen to survey my skin. Just as I noticed a strange bulge in my belly button, IT EXPLODED. “I’ve been shot!” I yelled, but my poodles did not flinch.

I wiped the blood off my forehead, and looked down again to find an inner innie oozing pus. I immediately recalled my recent umbilical hernia diagnosis, which no one explained to me. I thought, “Oh shit, my intestines are coming out my belly button! I’m going to die like they do on Game of Thrones!” One poodle yawned.

Finally, I calmed down and decided it was a small infection related to the belly piercing I had ten years ago. Likely, it wasn’t even mast cell related. How did an infection get under my skin that healed many years ago? I don’t know. I don’t really care. I have exploding body part fatigue.

The only thing that kept bothering me was my late grandpa’s warning, “You know what happens if you unscrew your belly button? Your butt falls off.” So, I decided maybe an antibiotic would be a good idea.

I try to avoid primary care like the plague. If I had the plague, I probably wouldn’t go to primary care. In my experience, primary care is a waste of time, because the doctors tend to ignore my concerns or send me to the ER. For years, I searched for a competent primary care doctor to manage my unique symptoms, but I scared all the smart ones. (The not so smart ones were just annoyed.)

But I went anyway, haunted by the image of my butt falling off. The doctor entered the room and I stated the facts “My belly button exploded. I’m concerned it may be infected and I may need antibiotics. Also, I have mast cell disease.”

She examined my belly and said, “Wow, it really did erupt. Do you have MCAS? I have a patient with MCAS. I’ve learned quite a bit.”

She listed her patient’s MCAS triggers, and I listed mine. I presented her with a list of MCAS friendly antibiotics and we picked one together. She also gave me a prescription for a topical antibiotic to try first in order to further avoid a MCAS reaction.

She let out a deep sigh and said, “I just feel so terrible for anyone dealing with MCAS. Can I keep this list?”

“Yes.” I squeaked like a high school boy asking a girl to prom, “Will you be my primary care doctor?”

They say you’ll find your perfect match when you least expect it. I never expected my belly button to explode, nor to be so grateful it happened. I never considered giving this doctor a second chance.

You see, I saw this same doctor two years ago. She listened and was smart, but she didn’t have the answers. She diagnosed me with fibromyalgia. I knew intuitively that something else was ravaging my body, but I couldn’t prove it, so I moved on to a new doctor. Two years ago, neither of us had heard of MCAS.

So today I’m feeling hopeful about my health, my diagnosis, and MCAS awareness. My belly button is healing and my mast cells are behaving. And now I have a primary doctor in case my butt falls off.

Third grade Valentine’s Day lessons

My best Valentine’s Day memories are not romantic. In fact, my fondest memory was the result of a lot of puke. In third grade, I woke up with the flu on Valentine’s Day. I tried to get ready for school anyway, determined to pass out the valentines I painstakingly crafted the night before, but I vomit-blasted the hallway with such ferocity that I quickly retreated back to bed. All day, I lay in bed, brokenhearted and feverish, with only an empty bucket to console me. (Okay, I’m pretty sure my mom was around too, but we remember what we feel, even if it is a little dramatic.) My valentine mailbox, a shoebox covered in construction paper, sat empty on my dresser.

That day I learned:

  • How to control vomit
  • Sometimes illness forces you to stay home, no matter what day it is
  • Valentine’s Day sucks when you’re all alone

Then, at 3:30, the doorbell rang. I heard my mom invite the visitor inside. A few seconds later, my bedroom door opened. My third grade teacher entered the room.

“AHHHHH, she in my house!” I thought, sitting in my pajamas, but feeling completely naked. “She is breaking the rules! How did she find me?”

“I brought you this,” she said, handing me a shoebox covered with red and pink hearts. “I hope you feel better soon.”

After she left and I recovered from the realization that teachers can leave school, I opened the box. Inside were 22 handcrafted valentines from my classmates, and one from my teacher.

I wish you a healthy Valentine’s Day, full of thoughtful surprises. And if that’s not possible, please don’t wait for your third grade teacher to show up at your door. Sometimes self-care is the best valentine of all.

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.

“P” is for pain and prostaglandins

My accomplishment this week was learning to say “prostaglandins”. When you have a rare disease, you have to learn all the big words. It’s not particularly helpful to tell a doctor, “I have excessive proglasta-thingies.” Trust me; I tried it three times. Luckily, my medical file is more convincing than my pronunciation. I miss the days when “rheumatology” was my greatest spelling challenge.

Prostaglandins are one of the dozens of kinds of sh*t (okay, mediators) my mast cells pump into my bloodstream. I have double the normal amount of prostaglandins in my body– on a good day. What does this feel like? A heart attack or childbirth depending on the time of day.

I am not exaggerating. Prostaglandins are used to induce labor.

For the past year, my uterus has jolted me awake almost every night to give birth to an imaginary baby. The contractions literally paralyze me with pain ­– far worse than passing a 5mm kidney stone. As if the pain isn’t enough, the sleep deprivation is torture. Some days, I am reduced to the emotional stability of a two-year-old at naptime.

The chest pain is less painful, but more concerning. When I say less painful, I mean – when my dog presses his paw on my ribs, I scream and the pain feels as permanent as a handprint in concrete. I only stopped worrying (aloud) about heart attacks, because I’m pretty sure they don’t last several weeks.

And then everything changed last week. I tried a new medicine* and it worked. Immediately. I’ve been free of fake heart attacks and childbirth for a week. I sleep so soundly I wake up wondering if I’m dead.

For almost a year, I have diligently tried new medications each month. MCAS patients are allergic to the fillers in many medications. My last two trials almost killed me. My mom had to peel me off the bathroom floor from a supplement reaction that left me unable to lift my arms.

So this feels like an overdue miracle.

One mediator down; dozens more to go.

*Baby aspirin – it’s a prostaglandin inhibitor. But do not try it without doctor guidance. I do not want you to bleed to death. I’m trying to increase readership here.

My summer without sunshine

I’ve never been so happy for summer to end, happier than any eager student or pumpkin spice aficionado.

This summer, I was sent to mast cell disease boot camp. And the rules were strict. Here is a sampler:

  • No swimming.
  • No boating.
  • No bonfires.
  • No barbeques.
  • No ice cream.
  • No beer.

(Although, I’m unaware of any summer camp that provides beer. Don’t tell me if there is one. That would just increase my resentment.)

Basically, I was trapped inside my condo for three months, because I react to both the sun and heat. Like, instantaneous, severe reactions. My only escape was work; in the safety of my car, I tunneled from one attached garage to another. Grocery shopping and dog walking were perpetual struggles. There were nights I didn’t eat and the dogs didn’t poop.

(Full disclosure: this occasionally happened before my diagnosis, before my beer allergy. I suppose there are some benefits to alcohol intolerance.)

So on top of the logistical challenges, I grappled with deprivation. There was nothing left to love about summer. I banned myself counting the missed memories and dissolving friendships.

(Okay, I sometimes I caught myself tearfully singing The Little Mermaid’s “Part of Your World”.)

Towards the end, I developed a very Minnesotan coping mechanism. Whenever the meteorologist forecasted a heat wave, I pretended a blizzard was coming. Because in the winter, it’s okay to cancel plans and stay home. In the winter, a weekend surrounded by books, blankets, and dogs is cozy, not sad or weird. In the winter, you find ways to live, not just survive. Sometimes, I even shut the shades to ignore the cruel, taunting sun. No more FOMO.

Today, it is 67F and cloudy, my definition of a Top Ten Weather Day. I’m going to enjoy my errands and walk my dogs. And I might even get cozy, too.

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This is what heat does to my skin. It hurts, but not as much as the internal swelling that goes with it.

Trials and triumphs

Last week, I had my three-month mast cell check up. Here are my top four accomplishments/signs of progress since my last visit:

  1. No ER visits. Technically, I broke this streak three days after my checkup. I am quickly learning what my triggers are (lemon cupcakes, Cascade detergent, stupidity…) and how to pound Benadryl at the first sign of a reaction.
  2. I can sing Adele without triggering anaphylaxis anymore. Also technically, not true. I TRY to sing Adele, and my lungs and dogs hate me for it.
  3. I can shower without turning into a red blimp and passing out, which is not a fun way to start any day, but especially workdays. The alternative, not showering, is frowned upon.
  4. I found pants that I’m not allergic to. Like not showering, the alternative is frowned upon.

When I was diagnosed, my doctor said it usually takes 4-5 years of prescription and supplement trials for an MCAS patient to discover their optimal treatment plan. Every patient’s response is different, which compounds the frustration and isolation.

Version 2

This is what a good day looks like.

This is the point where I have to remind people even the best treatment won’t make me normal. It’s okay; I made peace with this reality in kindergarten.

My goal is a more stable, comfortable quality of life. I try to remind myself that progress is not linear, but patience is hard. I worry about my family and friends losing patience too. And then, I remind myself not to worry. Because, for all we know, the zombie apocalypse could happen tomorrow.

So, what accomplishments are you celebrating this month?