I’m allergic to my own hormones

“Are you in pain today?” the nurse asks looking up from the computer screen.

“A four,” I say, anticipating her request to “rate the pain on a scale of 1-10”.

She reads the next question, “Do you feel safe at home?

“Well, I live alone with my poodles, so yes… except when one of them farts and I think I’m going to die of asphyxiation.” I laugh at my own joke. The nurse does not. Had she heard that one before?

The nurse continues, “When was the last day of your first period?”

“2013,” I grin. This time I’m not joking.

“Are you on some kind of treatment?” the nurse asks.

I consider telling her I have a five-year-old fetus growing inside of me, but I’m too tired to explain what humor is. The truth is hard enough to believe anyway. “Yes. I’m allergic to my periods.”

She takes my blood pressure and then flees the room.

*****

Five years ago, I didn’t believe anyone could be allergic to their own hormones. How can you be allergic to yourself? Doesn’t an allergic reaction entail hives and sneezing? I did, however, understand that hormone fluctuations could ruin a woman’s life. With the help of the internet, I realized I was experiencing premenstrual dysphoric disorder (PMDD).

PMDD was my most severe mast cell activation symptom from age 15 (when I got my first period) to age 27 (when I started taking continuous hormone pills). In fact, aside from my reactions to hormones, I felt healthy. Like MCAS, at that time, PMDD was relatively unheard of and provoked a lot of skepticism. No lab test can diagnose PMDD. Women with PMDD have the same levels of hormones as women without PMDD.

I wish I had a heartwarmingly funny way of describing PMDD to you, but the truth is it is living hell. Imagine a panic attack that lasts several days every month. Imagine being overwhelmed by impending doom, even though nothing has happened. Thoughts of hopelessness and paranoia cloud your mind, as your body becomes heavy and exhausted from crying. Your mind suggests death as a better option, while you try to pretend you’re okay for your job and your relationships.

For twelve years, I sought relief from this torture. I tried antidepressants, therapy, and supplements. Finally, a compassionate midwife worked with me to find a hormone pill that my body tolerated continuously. I learned no hormone fluctuations equaled no PMDD. The curse was over.

When I met my mast cell specialist several years later, he asked me to list my medical history. I told him that I was on continuous hormones for PMDD.

“Premenstrual dysphoric disorder,” I explained. He nodded, knowingly. His familiarity was curious, so I added, “I attempted suicide a couple times.”

He nodded again, completely unfazed. Had he heard me correctly?

Soon after, I learned that hormones can trigger mast cell reactions and many women with MCAS use medication to suppress hormone fluctuations. I learned doom is a hallmark sign of a severe allergic reaction. These days, when I’m anxious, I try Benadryl and it often helps.

Is mast cell activation the cause of all PMDD? I do not know, but I am suspicious. Am I insinuating women with PMDD also have MCAS? No, although it’s possible. Mast cell activation is not the same as MCAS. However, I wish I had known about MCAS sooner and gotten tested. Perhaps, I may have been able to stop the progression of my disease.

*****

As a final note, I’d like to share my biggest pet peeve of all time: women calling all birth control pills “the pill.”

When women tell me “the pill” made their PMDD worse, I want to ask, “Which fucking pill?”

The truth is some kinds of birth control pills absolutely make PMDD worse, while others, if taken continuously, can suppress PMDD completely.

Here are my tips for finding the right hormone medication to suppress PMDD:

  • Monophasic, not multiphasic
  • Avoid ultra-low dose
  • Continuous use (no inactive pills), not regular use
  • Take it at the exact same time every day
  • Be patient as your body adjusts to the new medication
  • Try another one if the first doesn’t work

As always, talk to your doctor about any concerns.

Beware of vision boards

In January 2015, I was full of ambition. I had just finished a master’s degree, my city council campaign, and a cruise to the Bahamas. I was ready to carpe diem the shit out of the new year.

On TV, I heard a bestselling author tell Oprah how she attributed her success to a vision board. I wanted to publish a book. I wanted to meet Oprah. I wanted to use modge podge.

I riffled through magazines and scrapbook paper, selecting the quotes and colors that would best represent my future self. As I cut out my favorite images, I imagined the vacations I would take, and the memories I would make.

What else did I wanted to accomplish? What else should I accomplish?

I recalled my recent book club meeting. The average age of the group is 70, but they kindly adopted me. These ladies are everything but old. Over brunch, they shared their recent adventures: political activism, concerts in the park, and tours through other countries. I listened silently, counting the years until my retirement. The truth is I never could keep up with these ladies.

I don’t remember which books we talked about that day, but I’ll never forget when the hostess mentioned she did yoga every morning before her walk around the lake. And every morning, her routine included a headstand.

Now I’ve tried to learn how to do a headstand in yoga class, but I was thwarted by my fears of falling and farting. In the security of my own home, my dogs dodged my flailing limbs. The blood rushing to my head felt less cool without the company of hipsters. But now that I knew that a 70-something could do it, so should I.

I carefully cut out the silhouette of a woman standing perfectly on her head and added it to my vision board.

***

Unfortunately, my body had other plans that year. Three weeks later, my legs weakened and I fell down the stairs. I quit yoga, suspecting I had over done it, but as months passed, even walking became a challenge. I spent most of the year fighting to hold on to what I had, instead on building upon it. I tucked away my vision board, hoping to regain control of my life.

***

This January, I stumbled across my vision board once again. I picked up it hesitantly, not wanting to stir feelings of disappointment or grief. As I studied the images, I realized I had unintentionally accomplished most of my vision for that year. For example, I read a surprising number of books as a result being stuck on the couch. When I had been given a burst of prednisone, I drove wide-eyed across the entire state to visit parks with my dogs. It was a terrible year, but there were moments of resilience.

However, in the middle of the board, I sensed the woman in the headstand laughing at me.

Oh my god. I was that woman, I realized. My world turned upside down that year. I had learned to stand on my head. How the hell was I supposed to know vision boards could be interpreted as metaphors?

I modge podged a prophecy.

***

So this year, I made another vision board. Much. More. Carefully.

I probably should have glued pictures of money and the Nobel Peace Prize to the board, but I try to be reasonable with the universe.

This year’s vision board features images of self-care, a quote from Mr. Rogers, and zero crazy yoga poses. There is one image that may be misinterpreted for me turning into a marshmallow, but prednisone has already accomplished that.

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My 2015 vision board

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My 2018 vision board

I’m allergic to the cold and my dog won’t poop

As a Minnesotan, I try not to complain about cold weather. All November, I tell myself winter teaches us how to fully appreciate the warmer things in life. However, when the wind chill drops below -30F and I have to put a second pair of pants, my attitude gets icy.

I don’t want to wear any pants.

Winter is especially hard for me, because I am legitimately allergic to the cold. (Yes, I know this makes me sound like an idiot for living in Minnesota.) Discomfort and frostbite are the least of my worries, because if I get too cold, my mast cells induce temporary paralysis. Yes, temporary paralysis, as in I lose the ability to move for several hours.

Like any Minnesotan, I am prepared for winter. I have a remote car starter, two attached parking garages, a face mask, and a grocery delivery guy who wonders why a single lady needs 24 rolls of toilet paper.

But I also have two toy poodles, one of which shows no concern for my well-being.

So last week, when the morning air was so cold it hurt healthy people to breathe, I thrust my poodles out my patio door. “Go poop!” I whispered as authoritatively as possible without waking my condo neighbors. The dogs trotted like two wind-up toys about three feet before freezing mid-step, each holding one paw in air. I ran out to retrieve my poodle statues.

As I untangled eight Velcro booties, I wondered if I was going to be late for work and if this was an acceptable excuse. I’m sure you’re not supposed to wrap the straps as tight as tourniquets around their paws, but I’ve played enough rounds of “Find The Dog Boot” to last a lifetime. Once again, this time with boots, I shooed the dogs outside. They high stepped halfway across the patio. One poodle pooped, but the other glared at me.

“I don’t poop in boots.”

“How about socks?” I negotiated.

If you think securing eight dog boots is a feat, try stuffing four paws into socks the size of a thumb. As I unsnagged each toenail from the knit, I tried to recall why the hell I bought dog socks in the first place. Since when does my dog have his choice of footwear?

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The dog socks

He clearly preferred the socks as he romped around the patio. However, no poop – unless you count the rabbit dropping he ate with gusto.

The poop boycott continued for several days. Yet, dieting was not part of his New Years’ resolutions and he did not consider limiting his food intake. One night, I felt sorry for his discomfort, but mainly anxious about the impending spaghetti factory explosion, so I put on my coat, hat, boots, gloves, scarf, mask, and his socks. I took him to the other end of my condo building, where I could demand him to poop as loudly as I wanted. We walked concentric circles in the snow until he finally popped a squat and I squealed victoriously. Although most of my skin was covered, the cold permeated my bones as I waited for him to unload.

Twenty minutes later, in the warmth of my condo, I felt a wave of heaviness and doom, the funny feeling I get when my mast cells are about to wreak havoc. Quickly, I made a pot of organic mac and cheese, the obvious first step in triaging most of life’s problems. As my arms got harder to lift, I knew I had stood outside too long. I grabbed my bowl of pasta and phone, and settled into a nest of blankets on the couch.

I used to panic from these reactions, assuming I was having a stroke. When I realized I wasn’t dying, I’d channel my inner Jillian Michaels, “Unless you faint, puke or die… keep walking!” But my limbs refused to move. I tried to make the best of the situation and meditate, but instead I’d ruminate on everything I needed to, but couldn’t currently, do. In the process, I’d forget my paralysis and try to get up again, refueling my frustration and determination to will my body to move. Eventually, I’d fall asleep.

This time though, I scarfed down my macaroni (hunger and paralysis are a bad combination), turned on a podcast, and prepared for nap time. My poodle approached the couch slowly, requesting permission.

“Don’t you dare ask me to play ball,” I warned him. He jumped onto my lap and curled into ball.

I stopped keeping score of my poodle’s bowel movements, focusing on surviving the workweek with angry mast cells. The cold-induced fatigue forced me to skip dinners and resign myself to early nights in bed. By Friday afternoon, I was eager to go home and collapse.

However, when I opened the door, I was greeted by a pungent smell. My poodle was suspiciously waiting for me in the doorway.

“Where did you poop?” I demanded. He knew exactly what I was referring to, but remained committed to his belief that silence is the best defensive. So I began my Friday night with a turd hunt.

I tried to imagine where I would hide a poop. Behind the couch? Below the dining room table? In the closet, among my shoes? The smell was powerfully misleading. As I searched, I estimate how much of my damage this would cost me. In the end, I found it in the most unexpected room. And then I wasn’t even mad.

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The deliberate accident

“Did you try to poop in the toilet?” I asked, trying not to giggle.

He wagged his tail.

My top 4 most surprising triggers of 2017

One of the most frustrating aspects of mast cell disease is every patient has different triggers. The only way to learn is trial and error – it’s less like learning to ride a bike, and more like trying to run through a minefield. Oftentimes, success is measured by how many days in a row you’ve managed to stay out of the hospital.

Last week marked the two-year anniversary of my diagnosis. I’ve learned more about mast cells than most doctors, and yet, every day feels like a narrow escape. Even when I feel fully prepared and hyper vigilant, my mast cells surprise me – less like someone jumping out and shouting boo, and more like a coup d’état. My mast cells are ungrateful haters with a questionably dry sense of humor.

Here are the top four triggers that blindsided me this year:

#1. Eyeglasses

This year, I discovered my mast cells hate plastic – clamps of IVs tubes; the shell of my FitBit; hospital wristbands. While they are not life threatening reactions, the rashes are painful and unsightly. Now I’m reacting to the nose pads of my glasses, even though I’ve worn them for the last four year. Of course, I have contacts… but those are plastic too.

#2 Ureteral stent removal

Need I remind you of my most painful reaction of the year? Of my life? I’ve already covered this in detail, but in short, my mast cells revolted against my ureteral stent REMOVAL. While I had prepared for a reaction to the 8” plastic stent being shoved up my pee hole, my mast cells decided to protest four hours AFTER its removal. And now I’m a urology legend.

#3 Wall art

Leading up to my kidney surgery, I was feeling a bit down, so I ordered a large canvas painting of birch trees to enjoy while I recovered. When it arrived, I unpacked it from its box and leaned it against the wall to admire the vibrant colors. As if I was in the forest myself, the scent of pine filled my lungs and I broke out in hives. The frame was made of pine, my most severe IgE allergy.

#4 Pumpkin scone

Every fall for as long as I can remember, I have stuffed myself with pumpkin bread and pie. This is why it took me two weeks and three pumpkin scones to realize why I was losing my vision and passing out in my office. What is fall without pumpkin spice?

Did your mast cells pull a fast one on your this year? I’d be surprised if they didn’t. Share your story in the comments below.

I deserve all the gifts

HOLIDAY PUBLIC SERVICE ANNOUNCEMENT:

Do not use my illness as an excuse to not give me a gift!

In the first year of my diagnosis, holidays were sad and lonely. On my birthday, I received only one card and no visitors. I couldn’t figure out why everyone would let me down on the hardest year of my life. “I don’t want to make you sick,” they said. “I don’t know what you’re not allergic to.”

I cried and accepted my fate. My disease was too complicated to understand. Gifts were just another casualty of my illness.

…until this year, when I created a new support system of compassionate and somewhat quirky friends (more on that later (you can do this too!))…

…and they gave me ALL THE GIFTS.

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The smorgasbord I received after surgery this year

This year, my friends lavished me with mast cell friendly gifts: Fiji water, Vanicream, books, homemade food, and even dog poop bags! I literally broke out in hives at their generosity (and that’s okay!). They cared enough to get to know me and the challenges I face each day. They taught me I am deserving not only of gifts, but loving friends.

Now I know we can’t all be as generous as my friends. But truly anyone can give and receive a gift. Some of my most cherished gifts are handmade cards telling me I’m a badass. A little thoughtfulness goes a long way and when in doubt, just ask! It’s really that simple.

In case you missed it last year, check out my gift guide for mast cell disease.

Happy gifting!

P.S. I’ve created a store for my blog! Check out these great mast cell gift ideas. All proceeds go towards my blogging costs – thank you for your support!

 

When mast cells commit the perfect crime

A new pain became the center of my universe last week. Well, it’s not really new, but I avoided telling you about it, hoping it would go away. I haven’t been able to sleep on my right side for weeks. I ignored it until last Monday when I threw up in my office and burst into tears in front of my boss.

That’s when I decided to go to the ER. I worried my gallbladder was about to rupture, but all of my labs and imaging were normal. At first I declined pain medication, but my pain became all consuming. Every time Twinkle Twinkle Little Star announced the birth of a baby on the hospital intercom, I could only think of pain. “Another ripped vagina,” I thought.

On Wednesday, I was injected was radioactive material to check the functioning of my gallbladder. For two hours, I lay strapped to the scanning bed as my right side stung and throbbed. The radiologist informed me the results were normal. I cried the whole way home, aching and hopeless.

As I pulled into my condo’s driveway, I noticed a woman walking a small, white dog. Its tail bobbed with each springy step. I wiped my tears and smiled for a brief moment, distracted by the dog’s contentment.

As I drove closer, I realized it was my dog. I forgot my neighbor had offered to walk my dog.

On Thursday, I met with a surgeon about removing my apparently healthy gallbladder. We both agreed my mast cells are likely to blame, but there is no evidence. My mast cells are committing another perfect crime. It’s possible gallbladder removal could relieve my pain, but there’s no way to know for sure. Meanwhile, I am losing my sanity (and weight).

I don’t know what I am going to do. Today, the pain is shooting up my back and into my jaw. The holiday season is compounding my hopelessness. Right now, my only consoling thought is imagining giving my gallbladder at my office’s white elephant gift exchange. Luckily for my coworkers, my gallbladder (if removed) will need to sent to pathology. Bah humbug.

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.