A wrinkle in my remission

Three baby bunnies

Last summer, I got my fillers removed. 

Not the gel type, of course. I would never threaten my mast cells like that. 

After nine years of prednisone, I successfully tapered off and watch my face deflate. Corticosteroids don’t just cause appearance changes with dreadful names like “moon face” and “buffalo hump;” the redistribution of fat, particularly around joints, can be painful. Although my skin lost its prednisone glow, I was thrilled I could slip my arms into clothes and bend my knees without discomfort. 

One of the very few perks of mast cell activation syndrome (MCAS) can be looking younger. Overactive mast cells can plump tissue, boost circulation, and remodel connective tissue, all while training humans to evade sunshine like a vampire. I wrecked my flawless skin no more than two weeks into MCAS remission when I flew to Florida before remembering beach vacations require sunscreen.

For five years, my skin care routine included Benadryl cream and cromolyn squirted into lotion to combat allergic shiners and facial flushing. Now I am using Tretinoin, which literally increases the number of mast cells in the skin, to fight wrinkles and boost collagen. Yes, my mast cells are so stable that I have a prescription to recruit more.  

Soon after stopping prednisone, I developed a prominent wrinkle anyway. Rather than feel disappointed, I was perplexed. The wrinkle is on the bridge of nose, a horizontal line between my eyes. Who gets their first wrinkle on their nose? 

When my mom informed me it’s called a “bunny line” I dismissed it as some kind of maternal euphemism. So, I Googled it and learned not only is that the terminology, but it can be caused by smelling something repulsive.

DID MCAS GIVE ME A WRINKLE? All this time I’d been holding onto the fact at least my mutated mast cells made me younger, when really, they were engraving my face.

Every time I entered a bathroom with an air freshener.

Every time a coworker entered a meeting wearing perfume (despite being told not to).

Every time laundry fumes wafted over the sidewalk.

Every time I scoured a new room like a blood hound hunting VOCs.

Every scented trash bag and Amazon package.

Every freshly sanitized room.

Maybe wrinkles should merely indicate where the smiles have been, but in my case, they indicate every MCAS ambush I fought to survive. I certainly have earned this wrinkle and I will wear it with pride–mostly because Botox seems like a terrible way to protect my remission. 

Or maybe, I’m just overly expressive. And cute as a bunny?

Thank you patrons for supporting this blog post!

I can eat anything… kinda

Table of food

I have become an enthusiastic eater. I would say a foodie, but I still am learning basic knowledge about foods and flavor. Yes, I did try to eat the whole edamame pod.

When my MCAS symptoms went into remission in 2021, I could suddenly eat and exercise without worrying about a life-threatening MCAS reaction. Embracing my new freedom, I decided to simultaneously taper off my steroids, play all the sports, and become a vegetarian. Well, technically, I became a pescatarian, but when you live in Minnesota–same thing.

Why would someone who just experienced severe food restrictions for 5 years CHOOSE to limit their foods?!?

First of all, I never wanted to see chicken again. From 2016-2021, plain chicken was one of about 15 foods that my mast cells could usually tolerate if prepared correctly. No pepper, no oil, and definitely no garlic. Fresh or frozen, but never refrigerated. My work lunch, hospital meal, and birthday dinner was plain chicken with a side of plain white rice. 

(Note: I don’t call it a “safe food,” because any food can trigger a MCAS reaction if your digestive system isn’t working. Chicken was easier to digest, but there were plenty of times I just had to skip meals because fragrance, heat, or other stress rendered my digestive tract useless.)

Second, I was scared of eating meat. If you recall, I was bitten by a lone star tick in April 2021, an insect notorious for carrying alpha-gal, which can cause severe allergic reactions to red meat and other mammal products (e.g. beef, pork, lamb). After coming so far, I refused to live in fear of anaphylaxis. So I decided to stop eating meat until I could get tested. (It takes awhile for the body to produce IgE antibodies.) 

At the same time, I knew I needed protein to play sports. Although I could finally digest soy, I never dreamed of MCAS remission for the sake of eating tofu. Gross. I did my best to find alternative protein sources, but was so relieved when I tested negative for Alpha Gal in October 2021. I slowly resumed eating meat, and felt better than ever. I assumed my protein deficiency days were behind me.

Meanwhile, my attempt to taper steroids on my own did not go well. An endocrinologist informed me that my decision to become a competitive athlete at the same time was a bad, if not impossible, idea. When I increased my strength training and experienced symptoms more severe than my endocrinologist could explain, she blamed my mast cells. 

“Maybe you don’t know you’re having a mast cell reaction,” she said.

“Maybe you don’t know how to help me,” I thought, as I did my best not to rage burn all my cortisol on her ignorance.

No one would have blamed me for stopped that doctor, but I did some research instead and asked, “Could I get a prescription for a continuous glucose monitor? My blood sugar seems to be tanking in conjunction with my cortisol and a Freestyle Libre 3 could help me stay safer. And then I would have more information for the upcoming appointment.”

My doctor had never informed me that cortisol regulates blood sugar or suggested I test my blood sugar when feeling low cortisol symptoms, but she did prescribe the continuous glucose monitor. At 3 AM on the first night, the alarm screeched as my blood sugar plummeted. It continued to document my lows in the middle of the night and after my workouts. Suddenly, my endocrinologist was not concerned about my mast cells.

Of course, I invested in juice boxes, but I also became more curious about protein, which can help stabilize blood sugar. My life changed when I asked my fellow competitive skaters how much protein they eat. In disbelief, I Google my recommended amount. My jaw dropped and then I shoveled yogurt into my mouth.

Over the years, I have learned the intricacies of mast cell disease including dozens of mast cell mediators and the NDCs of particular medications, but I never learned how much protein my individual body needs. Unlike these skaters, I had limited experience with sports as a kid. I was too busy being sidelined by illness or injury to learn how to build muscle.

When my MCAS symptoms became more severe, nutrition took a permanent back seat. I was simply trying to survive. Eating was often dangerous. Right before remission, my stomach began bleeding, a life-threatening complication. However, I can’t help but wonder how understanding my protein needs then might have helped me. 

With this new information, I downloaded a protein tracker on my phone, started hitting my goal, and began feeling better. I still struggled with low cortisol, but it became more manageable. I joined a gym with a body scanner to track my muscle growth and ensure I was correctly fueling my body. (This also helped me pace my steroid tapers.) To this day, it angers me that a doctor with no training in MCAS blamed my mast cells before asking about my nutrition. 

A few weeks ago, I celebrated four years of MCAS remission. I no longer take medication for MCAS and I can eat anything… but I choose to prioritize protein. I’ve even rekindled my love for chicken, as long as it’s smothered in sauce or spices. Protein has allowed me to continue to heal and thrive as an athlete. High FODMAPs, salicylates, and histamine foods are all good now–low protein not so much.

Thank you patrons for supporting this blog post!

MCAS, AI, and the signed emergency protocol

Stethoscope, pen and paper

I didn’t immediately go to an endocrinologist, because I thought I could manage secondary adrenal insufficiency on my own. After all, I’d conquered living with mast cell activation syndrome (MCAS), arguably one of the most complex health conditions in existence.

I assumed that because secondary adrenal insufficiency has been studied since the 1950s and could be treated with one daily medication, it would be easier to manage than MCAS. I knew low cortisol could be life-threatening, but surely, it was better than drowning in hundreds of mast cell chemicals, right?

In December 2021, I passed out five hours after a skin cancer biopsy. Retrospectively, I believe the epinephrine in the lidocaine shots tanked my cortisol in addition to the bleeding and stress. I felt nauseous, confused, and overwhelmingly sad. My head also hurt, but I had no rashes or flushing, so I knew my mast cells were likely not to blame. (MCAS and AI symptoms are SO similar!) I took prednisone and waited an hour for it to kick in, but I was still getting worse. When I began vomiting, I knew I needed medical help.

I told the emergency room nurse at the check-in desk that I had adrenal insufficiency and my cortisol was low. I assumed I would be taken to a room immediately for IV steroids. Instead, she told me to take a seat as if I was just constipated. 

As the room faded in and out, I wobbled back to the desk and begged for an IV. “My cortisol is really low,” I said. “I’m going to pass out.”

*crickets*

“I need steroids.”

*crickets*

“I am going to go into adrenal crisis if I don’t get medication soon.”

The nurse finally looked at me, “Oh, you have Addison’s? Get her a room.”

Was this a medical facility or a speakeasy? Apparently, “Addison’s” was the passcode to treatment, even though it’s a more rare form of adrenal insufficiency that I don’t have. Before MCAS gained awareness, I often had to refer to mastocytosis, a rare type of mast cell disease that I also didn’t have, for doctors to feel more comfortable treating me.

Same shit, different health condition.

“I need a signed emergency protocol,” I told my endocrinologist, who wasn’t the least surprised by the emergency room’s ignorance. 

At first, my endocrinologist handed me an unsigned note. I explained it would be dismissed without a signature. Most emergency room doctors care more about protecting themselves from liability than following peer-reviewed treatment protocols or notes in medical charts.

In 2018, I was hospitalized when a doctor refused my mast cell treatment because I presented her with a MCAS protocol that wasn’t signed. Instead, she attempted to administer morphine, which my protocol clearly indicated I was deathly allergic to. I reported the trauma to patient relations and the Board of Medical Practice, and of course, I got my protocol signed. Now every time a medical professional opens my chart, a threatening pop-up that requires them to read and acknowledge my signed MCAS protocol. 

… which is awesome… until you go into MCAS remission and suddenly your life depends on a different piece of paper.

I thought MCAS remission would entail healing from trauma, not experiencing new horrors. For me, adrenal insufficiency is scarier than MCAS because crises are harder to recognize and can escalate more quickly. At least with MCAS, I always had an EpiPen as backup. There is no auto-injector for adrenal insufficiency! On top of that, epinephrine works fast, but steroids take time to kick in. Adrenal crisis can accelerate into a full body shutdown if the steroids are too little, too late. 

In the end, I got my new permission slip to receive medical treatment signed and added to my medical chart, but I sure as hell wasn’t going to rely on the ER. I vowed to myself that I would do everything to avoid an adrenal crisis. And so began my Boundary Era.

Tips for emergency protocols

  • Customize your protocol to fit your body’s needs. If your doctor signs off on a protocol that your body doesn’t tolerate, your protocol could make your situation worse.
  • Carry physical copies of your protocol, especially when traveling. Doctors outside of the patients’ health system often ask to keep a copy.
  • Save a photo or copy of the signed protocol on your phone.
  • Keep your protocol up to date. Ideally, have your doctor sign a new copy annually (even if nothing has changed) to demonstrate your protocol is current.

Update: In June 2024, I successfully tapered off prednisone and regained function of my adrenal glands and HPA axis. However, I still must monitor for symptoms of low cortisol. 

Related posts

My adrenals didn’t RSVP to my MCAS remission party

Interested in re-reading my remission journey? Read the posts.

Want to learn more about my experiences and help others by supporting this blog? Become a Patreon.