I’m allergic to pain

For the last two weeks, while waiting for kidney surgery, I’ve been stuck in a lose-lose situation. I’m allergic to pain and I’m allergic to my pain pills.

When I say “I’m allergic to pain,” almost no one takes me seriously. After all, isn’t everybody averse to pain? I have to explain to my nurses that pain can trigger my mast cells to release loads of chemicals and cause severe, sometimes life-threatening, reactions. When severe pain strikes, my whole body swells and burns. In other words, adequate pain management is essential to avoid MCAS complications.

So pain pills seem like an easy answer, right? Wrong. Mast cells generally hate pain medication. I am one of the lucky few that can tolerate NSAIDs and some opioids. However, this week I wasn’t so lucky.

An ER doctor prescribed me a new narcotic to manage the kidney stone pain. I was both grateful and reluctant. I am always scared to take a new medication, but the only path to relief is trial and error. My reluctance was validated 24 hours after taking the first dose with a severe, two-day MCAS reaction.

My reactions to medications are distinct from other MCAS reactions. In addition to typical symptoms, a migraine with aura renders me bed bound for 1-2 days as the medication leaves my body. I take the maximize amount of Benadryl in order to keep food, fluids, and medication down.

So basically, I traded my pain for vertigo and vision loss. I think I prefer pain after realizing how heavily I rely on screens for comfort. Social media is a great source of support, but in this instance, it was also my enemy. I also tried blogging, but only managed a few desperate sentences before I vomited and proclaimed my life was over. The future seems bleak in an MCAS flare.

Despite knowledge and planning, I often feel like I can’t win at all with MCAS. Sometimes this disease is overwhelmingly unfair. But this too will pass, right? Like a 7mm, laser-blasted kidney stone, right?

A sad day for Minnesota mast cells

Today, I lose my mast cell care team. My MCAS specialist is moving across the country. This is upsetting, but not unexpected. I knew I was extremely lucky to have easy access to (arguably) the world’s best MCAS doctor. I was grateful for every minute of care I received. He truly saved my life.

This is what I did not expect:
  • The university did not notify me, cancel my appointments, refill my prescriptions, or recommend new doctors until eight days ago – after I contacted them. They knew my doctor was leaving in May.
  • I found out on Facebook that my physician assistant, who has treated me for two years and has a valuable understanding of MCAS, is no longer allowed to see me, because…
  • The university will no longer treat MCAS.
I also did not expect:
  • Fellow MCAS patients to call Minnesota MCAS patients “whiners” for sharing their concerns about losing their care.
  • Fellow MCAS patients to accuse me of “doctor bashing” for expressing my outrage at the university’s mismanagement.

Amidst this turmoil, my kidney pain continued to gnaw at my body. I called the university, almost in tears, asking where I was supposed to get help. They recommended two allergists. I asked if they were kidding. I told them I’ll likely end up in the ER. So they offered me a final appointment with my MCAS doctor the following day.

My doctor and I discussed my pain, my kidney stones, and the possibility of kidney disease. I was stunned. On one hand, MCAS may be destroying my organs, and on the other, the university doesn’t believe my disease is serious enough to provide continuity of care. My doctor recommended I follow up with a urologist about surgery.

And then we said goodbye. I tried to maintain my professional composure while expressing my utter gratitude. I told him I am excited for him to advance MCAS education and research. His final notes in my chart read, “I thanked her for the privilege of having been involved in her care, and she thanked me for the care I’ve provided.”

For now, I am putting the turmoil aside. My kidney demands my full attention. I’m preparing for a painful surgery, gathering documents and praying the doctors will adhere to the mast cell protocol.

“What’s the disease called?” my new urologist asked.

“Mast cell activation syndrome,” I said slowly, as he wrote it down.

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.

The Histamine Bucket (and Mickey Mouse)

You may have heard of the Spoon Theory to explain chronic illness. Spoons symbolize energy used on everyday tasks. Healthy people have an unlimited number of spoons to spend throughout the day. However, chronically ill people only have a limited number of spoons each day, because chronic illness zaps our energy. We learn to spend spoons more carefully, but never have enough.

MCAS has its own metaphor: The Histamine Bucket. Imagine your body is an empty bucket. Now imagine adding histamine to the bucket every time you did something. Here’s a list of examples that add histamine to the bucket:

  • Showering
  • Cleaning
  • Eating
  • Shopping
  • Walking outside

Some activities fill the bucket quicker:

  • Smelling perfume
  • Sitting in the sun
  • Drinking alcohol
  • Getting stung by a bee

Avoid an overflowing bucket at all costs. Too much histamine can cause life-threatening anaphylaxis. At the very least, an overflowing bucket could require Epi Pens and an ambulance ride (which is zero fun when your suffocating).

The emptier your bucket, the better you’ll feel. I don’t mean build a blanket fort and never leave. I mean prioritize your activities and rest in between. Of course, daily medications help too.

So, that’s The Histamine Bucket metaphor.

I relate best to a third, more animated analogy. It also involves buckets, and Mickey Mouse. Yes, I’m talking about the Sorcerer’s Apprentice.

In this analogy, I’m Mickey and my mast cells are those naughty brooms. At first, my mast cells seem competent at their job. They empty their small buckets of mediators slowly and steadily. Pleased, I start daydreaming about doing All The Things. That’s when my mast cells go rogue. They turn their job into an incessant nightmare, filling my body with chemicals. Before I realize what has happened, I’m swimming in histamine, prostaglandins, and leukotrienes. I try to end the chaos with Benadryl, but those dang mast cells won’t be stopped. I’m in over my head. Am I going to die?

Finally, the sorcerer bursts in and gives Mickey an Epi. Okay, the end is a bit of a stretch. EMTs are generally way more friendly than that sorcerer.

Which analogy do you prefer?

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!

I’m allergic to exercise

I finally went to the gym!

…in order to cancel my membership…

…for the sake of my health.

“Can I help you?” the manager asked.

“I want to cancel my membership,” I said. Please don’t ask why! I know you have to ask why, but please don’t. I just want to have a normal human interaction for once.

“What’s the reason for canceling?” he asked.

“Health issues,” I said. Go me! That’s what normal people would have said. Brief, sufficient, no oversharing. Maybe I have a future in subtly after all!

“Well, there is the option to freeze you account if you would like…”he said.

“I am allergic to exercise,” I interrupted and then gave him my serious face. No, buddy, this is not a punch line.

“Like actually allergic?” he asked.

“Yep, I’ve got my Epi Pen right here, “ I said, patting my purse, ready to whip it out à la Annie Oakley at the first sign of disbelief.

“I guess I know someone who is allergic to water,” he said or asked. I’m not sure.

“Yep, allergic to that too. I can only drink Fiji water,” I said. He tapped on his computer and I squirmed from the self-inflicted awkward silence. “I mean I do try to exercise. I just can’t do this stuff. There’s like a sweet spot of adrenaline ­– about 30 seconds. I can only run for a minute or two.”

“I guess I should feel lucky I’m just allergic nuts,” he said.

“Yep.” Okay, he kind of gets it.

***

I hadn’t gone to the gym in two years, but I clung to my membership and the belief that one day I could return. Because an allergy to exercise sounds like the greatest excuse, right?

The truth is I can barely even get to the gym. Most weeks, I struggle to get to the grocery store because I’m allergic to the weather (sun, humidity, cold, pollen) or I don’t have any energy left. Some weeks, I am nursing injuries related to my hypermobility. If the journey to the gym isn’t exhausting enough, once I’m there, I risk exposure to fragrances, cleaning chemicals, and germs.

When I exercise too much, bad things happen. Simultaneously, I need to lay down, puke, and poop. I struggle to breathe and think, while my organs continue to burn, swell, and spasm. And you thought your workout was hard.

The benefits of regular exercise do not outweigh the consequences of a mast cell reaction. Sometimes my reaction lasts for days, affecting my ability to do basic activities like eat or work.

However, I’ve found ways to exercise at home in small doses when I am feeling up to it. Any exercise starts with Benadryl (in addition to the eight antihistamine pills I take daily). I stretch gently, walk on my treadmill, lift light weights, or run for a couple minutes. I also have two toy poodles that are pretty demanding. Some days going to work, taking care of my dogs, and making meals is a workout in itself.

Breaking up with my gym was hard, but necessary. They say you’re supposed to work on your revenge body after a break up. I’m guessing that doesn’t apply here.