Rare(ly diagnosed)

Today is Rare Disease Day and I started the day feeling like a fraud.

Kind of how I feel like a fraud when I have appointments at The Cancer Clinic. In the waiting room, I wonder if all the other patients know I don’t have cancer. Can they tell by my thick hair and rosy cheeks? Do they know I haven’t even tried chemotherapy? I feel sorry for myself sitting alone at The Cancer Clinic, yet I don’t even have cancer!

The truth is mast cell activation syndrome is likely not a rare disease. Some researchers believe up to 5% of people suffer from it! It is, however, rarely diagnosed for two reasons. First, it’s a newly recognized and very complex disease. It is the most confusing thing I’ve ever tried to learn. For reference, I’ve also tried to learn Russian, tax increment financing, and Twitter.

Second, diagnosis often depends a cold piss relay race across the country. You have to collect 24 hours’ worth of your pee in your refrigerator, pack it in a cooler, and bring it to a lab. The lab then ships it across the country and you pray it stays cool the whole time. For reference, I can barely give a urine sample in the ER without spilling it on myself.

This year, I teetered back and forth about celebrating Rare Disease Day. I don’t want to be the woman who cried “rare” only to inform everyone that in fact naughty mast cells are lurking everywhere. Yet MCAS patients face the same obstacles any rare disease patient faces: lack of information; few experts; inadequate treatments; and little to no research funding. So where do we fit in?

It’s kind of like when the check-in nurse at The Cancer Clinic learns I have MCAS and insinuates that cancer would probably be easier. And then I have no idea how to feel.

The truth is they all suck: cancer, rare diseases, and MCAS.

Rare Disease Day raises awareness about patients’ lives and advocates for research funding for treatments and cures. MCAS taught me about Rare Disease Day, but I don’t need MCAS to celebrate it. I’ve decided, rare or not, I’m crashing this party (via the Internet (because my mast cells don’t like actual parties)).

Learn more about Rare Disease Day at http://www.rarediseaseday.org.

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.

My mast cells have made a nest

Over the past week, I’ve been a dizzy, nauseous, painful mess. A relentless ache over my right kidney kept telling me I was dying, but I’ve felt this before and my CT scan was normal.

By the time I asked for an appointment, my emotions were as unstable as my mast cells. My specialist kindly lectured me on the importance of pain management. Pain can amplify allergic reactions. I tried to argue with her at first, but then I almost projectile vomited in her lap.

This time, my ultrasound was normal. Blood and urine were also normal. I was unsurprised, yet reassured to know I was not pregnant with what felt like Rosemary’s baby. All signs pointed to my mast cells as the culprits.

“Some MCAS patients call it a nest,” my specialist said.

I quickly went through the five stages of grief.

  1. This is not real life.
  2. I just wanted a damn kidney infection and some antibiotics. Why can’t I have normal problems that normal people can understand?!
  3. Maybe it would be easier to be pregnant with the spawn of the devil. At least then, it eventually comes out? Is that still a possibility?
  4. I’m never going to feel joy again, because all I can feel is this nest.
  5. I have a nest in my abdomen. It’s a thing.

Basically, I have a bunch of angry mast cells congregating on my right side and using my kidney as a piñata. Last time, I endured the pain for a week and half, and then it resolved on its own. I try not to think about living with these flares for rest of my life. As you can imagine, there’s no real treatment for a nest.

So today, I’m resting, taking pain pills, and lathering my back with Benadryl cream. And telling jokes to my nest.

Why didn’t the mast cell get invited to the birthday party?

 He’s too mean.


Get it… his-ta-mine.

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.

4 facts you should know about MCAS

Some days, I feel like a walking public service announcement for mast cell disease. I want to save people from the suffering I have endured! I truly believe that if I had known about mast cell disease earlier, I could have avoided a lot of damage to my body. The problem is MCAS is generally unknown or at best misunderstood by doctors. Here are four basic facts that I wish more people knew about MCAS.

You don’t have to look like a tomato to have MCAS

My mast cells have wreaked havoc on my body my whole life, but I didn’t start flushing or getting hives until I was 29 years old. (And then they told me it was anxiety. Jerks.) For me, flushing and hives were the final sirens indicating my mast cell disease was out of control. A few months later, I started to have life-threatening, anaphylactic reactions. MCAS affects every part of the body and symptoms can include IBS, bone pain, tachycardia, migraines, and fatigue. Also, hives and flushing do not occur in 20% of anaphylaxis cases!

EDS and POTS are linked to MCAS

Do have EDS or POTS? Get tested for MCAS! There’s a good chance some of your symptoms are caused by misbehaving mast cells. I used to have to call in sick to work because I was too dizzy to stand up, let alone drive. On top of that, I was plagued with seemingly random injuries to my joints and tendons. MCAS treatment resolved my POTS symptoms and decreased my EDS related injuries. Wohoo!

Tryptase is usually normal in MCAS patients

When someone tells me their MCAS test was negative, I ask them, “Did you pee in the jug?” A tryptase blood test is just one of several MCAS tests, and the result is usually normal for MCAS patients. Mine was.

The 24-hour urine test is a MCAS rite of passage. It requires skill, because you have to keep your pee cold AT ALL TIMES*. This entails racing your urine to the refrigerator each time you pee and packing it in a cooler to bring to the lab. Mast cells release dozens of chemicals (not just tryptase or histamine) and the 24-urine test measures several of them. Unfortunately, even a minute of heat can destroy the chemicals, so many people have to repeat the test.

*There may be a 24 hour urine test that does not require refrigeration because it includes a preservative. Tests are evolving!

Pink pills can cause a MCAS reaction

Although the bright pink Benadryl tablets are fun images for blog post, don’t eat them! MCAS patients react to many inactive ingredients in medications, especially dye. Always check to make sure your medication is dye free. Even if the pill looks white, check for dye before purchasing!

When things fall apart and you want to throw things

Last week, I picked up When Things Fall Apart by Pema Chöndrön, because things fell apart during my recent flare. Namely, my false sense of security.

Over the last year, I’ve rebuilt my life to accommodate MCAS and avoid triggers. My steady progress boosted my confidence in my ability to manage this disease. I thought I had woven my own safety net with a series of daily precautions.

But this last major reaction sliced that safety net in half and I plummeted without knowing how far I would fall. Overnight, I lost my ability to work, eat, or sleep. I reached for help but the hospital wasn’t safe and the emergency doctors were reluctant to do anything for fear it would make me worse. No one, not even one of the world’s leading MCAS specialists, could tell me for certain what was happening or how to fix it.

I was terrified.

So I read  When Things Fall Apart in search of peace. I found comfort in Pema’s wise words, but the funny thing is I don’t remember any of them. The only thing I distinctly remember is that she threw a rock at her husband when he told her he was having an affair and he wanted a divorce.

I never scored well on reading comprehension.

Upon further reflection, I realized that’s how I felt when I lost my sense of security. I wanted to throw things too. Specifically, I wanted to whip a full set of ceramic dinner plates against a wall like frisbees. The pain was too much, the situation was too scary, and I wanted to protest its unfairness.

I think I’m supposed to just acknowledge these feelings. However, I’m still holding out for a box of plates and a sturdy wall. My second takeaway from the book is I think I’m still eligible to become a Buddhist nun.

I probably should re-read the book.

Long story short


That moment you’re so bored in another exam room that you realize your outfit matches the table and you probably need more color in your life.

One year ago, I fell down the rabbit hole that is chronic illness. Well, literally, I fell down the stairs. I had been ignoring the pain and weakness in my legs for a couple weeks, attributing it to too much yoga. The embarrassment of falling finally prompted me to acknowledge “this isn’t normal”.  I scheduled a primary care appointment, assuming I was vitamin deficient in some area. [Insert laughter followed by sigh of resignation here.]

For the next twelve months, I was ambushed by new, debilitating symptoms each week. Sensations I couldn’t previously fathom. I am still haunted by memories of March, when I temporarily lost my ability to walk, and consequently, my ability to care for myself. I was 28 and otherwise, at the height of my independence. I acquired eight specialists and drained my savings account riding the appointment merry-go-round. Although my doctors documented my suffering, they were reluctant to provide any treatment, since my symptoms didn’t align with any disease in their specialties. Some of my symptoms were described in my chart as “subjective”.

The day after the Labor Day, I received an unprompted phone call from one of my doctors. He had used the extra time from the three-day weekend to review my chart, and among other suggestions, he recommended I make an appointment with a mast cell specialist. I scheduled the appointment, but suppressed my hopes, especially since I would have to wait months to be seen.

On December 22, I was formally diagnosed with mast cell activation syndrome. In order to meet the criteria for MCAS, you need two abnormal lab results. I had five. (I have always been an overachiever.) I was overcome by a wave of validation. Countless extraordinary experiences dismissed by other doctors now had scientific explanations. My diagnosis has allowed me to shift my precious energy from pleading for help to healing myself.

I have spent the last few months not only fighting the disease, but also recovering from the damage of my journey. I lacked adequate medical care for too long, exhausting all my resources in the process. Until now, I subconsciously stifled all reflection, because I didn’t want undermine my fight for survival.

That’s my long story short. Thank you for reading my first post! What is your long story short? More entertaining posts to come.