Celebrating 5 years since my MCAS diagnosis

Five years ago, on December 22, I was diagnosed with mast cell activation syndrome.

As I entered the university’s cancer clinic, greeted by Christmas decorations and a volunteer dressed as an elf, I braced for a possible death sentence. For better or worse, my pain and exhaustion numbed my fear. I had spent the entire year unsuccessfully pleading with doctors to help me as I lost my ability to eat, move, think, and sleep. All I knew for sure was my lab work was positive and something was wrong with my mast cells.

Of course, I had never heard of a mast cell and I had to wait for an appointment. One lab test noted, “Systemic mast cell disease is a heterogeneous disorder.” So I googled “systemic mast cell disease.” After reading Mayo Clinic’s page several times, I surmised I had two diagnostic possibilities: systemic mastocytosis or mast cell leukemia. The median survival rate of mast cell leukemia after diagnosis was 6 months. I joined Facebook groups for mastocytosis, where some people briefly mentioned “a newer condition called MCAS,” but nobody could tell me if I was going to die.

Spoiler alert: I’m not dead yet.

While I felt like the most tragic soul on the planet sitting in that cancer clinic waiting room and glaring at the cheerful elf, I know now my diagnosis was arguably a Christmas miracle. I had walked a mere 5 blocks across campus and paid a $35 copay with no awareness that I was seeing a world-leading specialist. I had no idea my diagnosis would explain a lifetime of health challenges literally starting from birth (e.g. anemia, food intolerances, interstitial cystitis).

Thankfully, I also had no idea the ridiculous amounts of science and policy I would need to learn to stay alive. On the five-year anniversary of my MCAS diagnosis, I would like a damn degree.

To my fellow MCAS badasses, I want to say MCAS gets easier. To everyone else, I want you to know every day is a painful nightmare. It is really a combination of both. You collect tools and learn how to adapt.

How I describe the past five years:

Year 1: Total destruction and despair
Year 2: Renovating my life
Year 3: Building a support system
Year 4: Survival and self-advocacy
Year 5: Dreaming again

For me, 2015 was much harder than 2020. Although MCAS wasn’t a death sentence, it did feel like torture. Every day was painful and treacherous. It felt like no one was willing or able to help me. Isolating wasn’t enough. While I know how lucky I was for receiving a diagnosis, I am certain an earlier diagnosis could have prevented the worst year of my life. This is why I get so upset that affordable MCAS testing and evaluation is no longer available at the university, let alone in Minnesota. At least, there’s a lot more information and support online today.

Today, I celebrate my diagnosis and the healing it has provided through treatments and accommodations. Tomorrow, I continue fighting for access to MCAS testing and treatment.

How to use FMLA leave for chronic illness

In the U.S., the Family and Medical Leave Act (FMLA) provides certain employees with up to 12 weeks of unpaid, job-protected leave per year. Approximately 20% of Americans use FMLA to nurture new spawn (maternity or paternity leave), but most of Americans use FMLA because of health problems.

I prefer to call FMLA the “F*ck My Life Act.”

I applied for FMLA almost a year before my MCAS diagnosis. In April 2015, I was struggling to walk, lift my arms, and digest food. I asked my human resources manager about FMLA and she emailed me a form to be filled out by my doctor. The form asked for a description of my medical condition and the expected duration of the condition, treatment, and recovery.

I wanted to write:

No damn clue. I think I am dying. Please keep paying me though.

My rheumatologist recommended I take two weeks of FMLA to rest and recover, but I refused. Somehow, I knew I would not recover. I knew would need to budget my FMLA time, because once FMLA time runs out, you can be fired if you miss work.

My rheumatologist wrote:

“3 days per episode, every 2 weeks. Needing monthly doctor visits. Expecting to get symptoms controlled in 3 months.”

HAHAHAHAHAHA.

Instead, I only took 78 hours, almost 2 weeks, of FMLA time over the next 3 months. I endured two colonoscopies and two MRIs, and I cried most nights from pain and fatigue.

In July, my primary care doctor filled out a new FMLA form:

“Possible autoimmune disease. Expected duration unknown at this time, possibly lifelong. Unknown, intermittent, unpredictable treatment schedule at this time. 4-8 hours at 1-5 episodes per week for 12 months.”

Over the next year, I took 295 hours, more than 7 weeks, of FMLA time. During this time, I was diagnosed with MCAS and began treatment. For a while, I scheduled FMLA time on Wednesdays to recover, while I tried to learn about my disease and try new medications.

In 2016, it was much easier to describe my medical condition. My mast cell specialist wrote:

“Diagnosed with mast cell activation syndrome. Lifetime duration. Intermittent, unpredictable physical limitations. Anaphylaxis, tachycardia, nausea, and vomiting.”

However, the duration of treatment, recovery, and flare-ups was still impossible to predict. I wanted to write:

My mast cells do what they want when they want, okay? I have no control over this nightmare. Be nice to me.

Instead my mast cell specialist wrote:

“1-8 hours per day, 1-5 days per week, 12 weeks.”

… which is basically the professional way of saying, “No damn clue.”

Since 2015, I have taken an average of 200 hours, or 5 weeks, of FMLA time per year. On average, I use about 5 hours of FMLA time per week. FMLA provides up to 12 weeks, but I use my time as sparingly as my body can tolerate, in case I need a major surgery or have a complication.

The best part of FMLA, aside from not losing my job, is not having to explain myself when MCAS makes me sick. I don’t have to take a picture of my rash for proof or contemplate telling my boss that I am late because I am pooping my guts out. My paperwork allows me to skip the details. I just email my boss, “I need to use FMLA time for the remainder of the day.”

The worst part is nobody seems to understand the terror of having to budget your FMLA time for an unpredictable condition. If I run out of FMLA time, I can lose my job. If I lose my job, I lose my health care, and likely my home. My mast cells don’t give a shit. Sometimes doctors don’t even give a shit. Remember how it took months for doctors to agree to an epidural blood patch for my CSF leak? I went to work with a hole in my head, because I couldn’t afford to use three months of FMLA time. I hate when my FMLA time is wasted because of bad medical care.

I also limit my FMLA time, because I have bills to pay. FMLA provides 12 weeks of unpaid leave. While I can use my paid time (sick and vacation) when I take unpaid FMLA time, my paid time is constantly running out. This is why I rarely take a day off of work for fun.

Although working with MCAS often feels like physical torture, I love my job and the benefits outweigh the negatives. I know I am lucky that FMLA and ADA accommodations allowed me to keep my job after my diagnosis.

Tips for using FMLA leave for chronic illness:

Read about FMLA eligibility. Unfortunately, not everyone qualifies.
Notify your employer (usually an HR manager) as soon as you realize you need FMLA leave.
Schedule an appointment with your doctor just to complete the FMLA paperwork. It usually takes the whole appointment. You will need to fill out this paperwork every year.
Draft responses to the paperwork to bring to your doctor appointment to ensure all vital information is included and to save time.
Emphasize the unpredictability of your chronic illness, if applicable.
Track your FMLA leave time.
Don’t call it “F*ck My Life leave” around your HR manager.

3 tips for MCAS warriors

#1. Never underestimate your mast cells

Everyone has mast cells. Mast cells are part of our immunes systems; they help keep us alive. For most people, mast cells are occasionally annoying – a runny nose in the spring, a bug bite in the summer, or perhaps eczema in the winter.

However, mast cells can also destroy us, especially in the case of mast cell disease. Basically, overactive mast cells incessantly dump dozens of chemicals into our bodies and we suffer in a million different ways. My mast cells have given me a black eye, temporary deafness, paralysis, and adhesions to name a few uncommon symptoms. Reactions can affect every organ of the body, causing symptoms and complications beyond most doctors’ imaginations. Always consider mast cells as the culprit.

#2. Do not ignore or argue with your mast cells

You will not win. Mast cells have strong opinions and rarely compromise. If you continue to disregard your mast cells, they will probably try to suffocate you. I really regret ignoring my mast cells’ warnings and continuing to expose myself common triggers (e.g. heat, high histamine food, fragrance). As a result, instead of just flushing and nausea, my throat started swelling all the time. After my first ER visit, I vowed to listen to my mast cells, but it was too late. They could not calm down. It took a full year of avoiding triggers to decrease the severity of my reactions. Others are not as lucky.

If a trigger is absolutely unavoidable, consider pre-medicating. If you’re undiagnosed and suspect MCAS, pursue blood and urine testing ASAP – don’t ignore it!

#3. When in doubt try Benadryl*

*Unless you’re allergic to Benadryl. Or the doctor says you shouldn’t. I am not a doctor. Please talk to your doctor.

BENADRYL IS MAGIC.

Like most people, I thought Benadryl was just for rashes and sinuses, until I started using it like duct tape for mast cell disease. Dye-free, of course.

Vomiting, dizziness, IBS – Benadryl!

Muscle pain, bone pain, migraine – Benadryl!

Rage, anxiety, doom – yes, can you believe it?! Benadryl!

Please remember, mast cells release many more chemicals other than histamine. That being said, histamine is most notorious for a reason. Again, it can affect every organ of the body. Learning about histamine is a great starting point and nothing taught me more about the effects of histamine than Benadryl. Every time I got relief from taking Benadryl, I knew I could attribute the symptom to histamine.

Of course, the goal is to identify and avoid the trigger in the first place, not pop Benadryl like Tic Tacs. In fact, I try to take Benadryl as sparingly as possible to avoid rebounding and losing effectiveness. There often are better antihistamine options than Benadryl for daily treatment. However, Benadryl can be incredibly helpful in understanding mast cell disease.