Summer essentials for MCAS and EDS warriors

Blog post: The Histamine Bucket and other MCAS analogies

Minnesotans have a deep appreciation of summer. It is the reward for surviving blizzards and subzero mornings. As soon as the trees begin to bloom, we magnetize to our celebrated lakes for barbeques, swimming, and boating.

Too bad my mast cells hate summer.

Specifically, my mast cells hate the sun, the heat, and humidity. Fifteen minutes in the sun can trigger six hours of fever and vomiting. My mast cells hate the winter too, but that was easier to accept. The only fun aspect of living like a vampire is being able to say you live like a vampire. And to be honest, that hasn’t made me many friends.

This summer, overall my health is more stable, but my joints are not. It seems now that I’m less inflammed, my hypermobility is more noticeable. Like many MCAS patients, I also struggle with Ehlers-Danlos Syndrome (EDS). My mast cells are tolerating a more active lifestyle, but now my joints, especially my ribs, are slipping all over.

This year, I am determined to enjoy my summer anyway, even if that means getting up before sunrise. I’ve even assembled a survival kit of sorts. Here are the top five essentials I rely on to enjoy summer despite MCAS and EDS:

A cute hat

Emphasis on cute, because you should love your hat enough to wear it at all times. I have a huge head, so I’m a fan of straw, bucket hats, but UV protection hats are best. I am also a big fan of having multiple cute hats.

A fanny pack

Fanny packs are back! This is great for two reasons. First, they are perfect for carrying Epi Pens. I no longer fear a severe reaction when I walk my dogs, but I know one pissed off bee could put me in instant danger. Second, fanny packs easier to carry than most bags, meaning less joint problems . I’ve been eyeing this Lululemon bag.

Birkenstock insoles

Everyone has heard of Birkenstocks, but people rarely know about Birkenstock’s insoles. I actually find the insoles more comfortable. They provide both arch and metatarsal support and slide easily into any shoes. I can’t imagine my walks around lakes without them!

Zero gravity chair

When I asked other EDS warriors about patio furniture, the response was unanimous. I got mine from Target and it’s amazing. When my friend tried it, I worried she’d never leave. Perfect for outdoor reading, recovering, or wasting time on Facebook.

Signature (non-alcoholic) cocktail

Okay, it’s not really a cocktail at all, but this summer I’m observing happy hour. Every afternoon, when I slurpy my icy, mast cell stabilizing drink, I feel more summery. Your drink can be whatever you want. Here’s what’s in mine:

½ cup frozen blueberries
¼ cup raspberries
¼ cup pomegranate juice (mast cell stabilizer)
¼ cup lactose free Organic Valley 2% milk (easy to substitute)

Wishing you an enjoyable summer! What’s your favorite summer essential?

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 say, getting bored.

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

“2012,” 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 react to yourself? Doesn’t an allergic reaction entail hives and sneezing? I did, however, understand that hormone fluctuations could ruin a woman’s life.

I wish I had a heartwarmingly funny way of describing PMDD to you, but the truth is, it is one of my worst nightmares. As my hormones dropped every month, feelings of doom clouded my mind, while my body became heavy and exhausted. Like clockwork, I succumbed to a multi-day panic attack for no tangible reason. My mind suggested death as a better option, while I tried to pretend I was okay at work and around loved ones.

For twelve years, I sought relief from this torture. There was (and still is) no lab test to measure my suffering. I tried antidepressants, therapy, and supplements. My symptoms persisted as my fear of my body grew.

Finally, a compassionate midwife worked with me to trial hormone pills. One of my biggest pet peeve of all time: women calling all birth control pills “the pill.” Some birth control pills absolutely made my PMDD worse. We discovered after a short adjustment period my body did best on a low (not ultra-low) dose, monophasic pill taken continuously at the same time every day.

For me, no hormone fluctuations equaled no PMDD. The curse was over. Kinda.

*****

When I met my mast cell specialist several years later, he asked me to list my medications. 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, “It was life-threatening.”

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

In my appointment, I learned PMDD can be a symptom of mast cell activation syndrome (MCAS). Normal hormone fluctuations can directly trigger mast cell reactions and many women with MCAS use medication to suppress hormone fluctuations. I also learned doom is a hallmark sign of a severe mast cell reaction. These days, when I’m anxious, I increase my antihistamines and/or reduce my exposure to mast cell triggers.

I experienced PMDD long before I experienced rashes or throat swelling. I often wonder if I could have accessed MCAS treatment sooner, at the onset of PMDD, I could have avoided worsening of my symptoms over time. While many women worry about “Aunt Flo coming to town,” I hope they are also aware of her connection to Anna, Phil, and Axis.

Update

I have successfully stopped taking hormone pills in MCAS remission in order to prioritize muscle growth. I had a normal period! As I approach perimenopause, I have realized how important a MCAS-aware gynecologist will be to protect my mast cells as my hormones inevitably fluctuate.

I have also been diagnosed with DHEA deficiency. Read more about my DHEA journey on Patreon. I hope someday researchers study the relationship between DHEA, PMDD, and MCAS!

Disclaimer

The number one rule of MCAS is: every patient is different. What works for my body may be dangerous for your body. Learn more about trial and error with MCAS.

As always, this is not medical advice. Please talk to your doctor about any concerns or questions you may have. Working with a MCAS specialist may be especially helpful.

Resources

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.