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.

Coloring is hard, friendships are harder

“When can I come over?” she messaged me.

I panicked. Does she know I am boring, feeble, and can’t offer anything except Fiji water?

For months, I had been writing the saddest story of abandonment (starring ME) in my head. None of my friends had visited me since my diagnosis. Unable to leave my house, I wished for movie nights and home cooked meals. When wishing proved futile, I alluded to my chronic illness fantasies on Facebook to no avail.

What if we have nothing to talk about and she decides I’m a total loser? Do you know what’s worse than no friends? Rejection. I hope she forgets me entirely. 

“Wednesday?” she messaged me.

Either I would have to accept her offer or wither alone in my hypocrisy. I reminded myself that she used to work in home care, and therefore was professionally trained to deal with my awkwardness. “Okay,” I said.

She did not arrive alone. Behind her, she pulled a suitcase full of coloring books, pens, and markers. We spread them across the table and began coloring our respective pages. I don’t usually enjoy coloring, but I was thankful to have company and something to focus on other than my 43,295 allergies.

Over the next several months, she continued to visit and even gave me a poodle coloring book. I warmed up to these visits. Maybe a bit too much.

Damnit, I wrecked the best poodle in this book. I couldn’t have picked an uglier color. Now I’m going to burn the whole book. I growled with frustration and showed my friend.

“Well you don’t have to sell it!” she exclaimed. I was stunned by her frankness, and then I laughed. A true friend doesn’t sugar coat your ugly poodle.

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.

Me vs. my dog after anesthesia

Last week, Sancho, my toy poodle, had mouth surgery to remove three teeth and a tumor. (The biopsy was negative. Yay!) The vet arranged for me to pick him up as soon as he regained consciousness, because last time didn’t go so well.

Last time, he had a dental cleaning and as I was driving home him home, he began to shoot blood all over my car. From his butt. He stressed out so much recovering at the vet that his bowels inflamed and created a murder scene in my car.

So this time, I picked up a heavily sedated dog. I carried his floppy, 9-pound body to the parking lot like a newborn and carefully tucked him into his car seat. As I doted on him, I realized how weird it was to be the caretaker, not the patient, for once. I stroked Sancho’s hair remembering how scared and vulnerable I felt undergoing anesthesia.

And then I started feeling jealous that nobody carried me everywhere after my surgery. Or showered me with high pitched affirmations like “who’s a good girl?” I was probably just as cute, right?

Maybe not. Here’s a comparison.

Talking after anesthesia

 ME: About 30 seconds after being rolled into the recovery room, I demanded a selfie. Specifically, I demanded a selfie while wearing a hat. Here it is.

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I apparently found this incredibly funny and demanded more selfies wearing hats.

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Totally adorable… for a BABY in the MATERNITY WARD. Where did these hats come from? Why would I pack three hats for butt surgery?!

MY DOG: Sancho’s cuteness was quickly diminished by a disturbing, strained noise. On a toy poodle, this sounds similar to a whistling teapot. It can be interpreted as, “I am dying and I hate you.”

Walking after anesthesia

ME: After a year of continuous pain, anesthesia felt pretty good. So I went on a walk I don’t remember. I remember leaving my house, but I don’t remember returning. I assume it was a good walk.

MY DOG: Sancho forgot how to walk. I set him down in the grass, and he tipped like a cow while peeing. Wherever I set him down, he stayed frozen like a statue. This was an informative experience, since I once briefly considered taxidermy for my dog post mortem. The live version was creepy enough.

Eating after anesthesia

ME: Shortly after I demanded a selfie, I demanded a cheeseburger. Instead, I was handed packets of crackers which I devoured as if they were a cheeseburger. Then I vomited everywhere. And blacked out.

MY DOG: After several hours of recovery, I served Sancho a plate of wet dog food, as recommended by the vet. He immediately begin nosing and licking the food. An hour later, I noticed him standing with his jaw slightly open. Worried his mouth hurt, I investigated, only to find a ball of wet dog food. Two hours later, I found a different ball of wet dog food in my bathroom. Three hours later, I found it in my couch and in his dog bed. He hid that nasty meat paste everywhere. I really hope I found it all.

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See the meat ball?

So, who wore it best? What’s your anesthesia story?

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.

I survived the salt cave

When my friend invited me to the salt cave, I was excited. Retrospectively, I’ve realized that’s because I was on oxycodone.

On the day of the event, I contemplated skipping it. I am not a woo woo person, but I am trying to be more positive (without the help of narcotics, which I should mention I was only taking for my epic flare). I thought, okay I’ll show up for the nap.

My biggest concern was that someone would fart in the tiny room and I would giggle or gag. My second biggest concern was that I would die from a mast cell reaction. In that order. Because some farts are more miserable than death.

The staff had assured me the salt cave was scent free, but when I walked into the waiting room I was assaulted by a pungent smell. My friend sprang to greet me and, after a year of not seeing her, I replied, “Hi, I might die.” I sat in a corner and focused on breathing deeply, until I realized my throat wasn’t swelling and mast cells didn’t care about the salty smell.

Just as I was starting to calm down, we were ushered into “the cave,” a small room dimly lit by salt lamps. The pink and yellow glow illuminated the walls plastered in white salt. Some sections were stacked with salt bricks, others seemingly dripped down the walls. Everyone trampled across the salt covered floor as if it were a gravel playground. Suddenly, the taste of salt hit me, the door to the room slammed shut, and I panicked.

I wasn’t aware that salt therapy involves aerosoling salt, but suddenly I was anxious for air. To be clear, I’m not claustrophobic. I can enjoy an MRI (not the one that requires a full bladder), but a small room of strange people and substances is terrifying if you have mast cell disease. Again, I signed up when I was on narcotics.

I committed to sitting, refusing to lay down like everyone else, in order to be vigilant. I had a moment of regret when I realized the salt floor was heated, and likely felt like a beach vacation when laying down. But then the singing bowls started.

As it turns out, I didn’t just sign up for the salt cave, but also a “sound bath”. A woman sat cross-legged in the middle of the room and began tapping on three large bowls. Unfortunately, singing bowls remind me of air raid sirens and the book, 1984. I was sort of hoping the vibrations might disturb my mast cells and then I would have avoid my singing bowl allergy for life. But they didn’t, so I resorted to trying to relax.

As the ringing ebbed and flowed, I envisioned myself riding a roller coaster, swooping in circles and losing momentum just to drop again. Like one of those roller coasters that you realize it not so scary and a little fun, but you still want to get off as soon as possible. I don’t like rollercoasters either. So I diverted my attention from the singing bowls.

I looked around the hazy room. I tried to imagine being on a beach. I would definitely be drinking something fancy. I missed being able to drink alcohol. I wondered how many margaritas I could make with all of this salt.

I realized I’m probably not allergic to salt. My favorite kind of chocolate is sprinkled in visible granules of salt. And I remembered the first time I tried salt on watermelon. So good.

I missed normal yoga classes, in which the biggest threat was losing balance. I wondered if I was subconsciously punishing myself. Why couldn’t I just take a normal meditation class? I promised myself I would sign up for a normal meditation class.

Eventually, the bowls stopped humming and they let me out. I hugged my friend. She thought it was because I was grateful for the experience. Mainly, I was just happy to be alive.

In sum, I didn’t die and all farts were masked by salt. I’m actually stunned I didn’t react at all. The next day, I noticed my eczema wasn’t searing anymore. Apparently, salt therapy can do wonders for allergies and asthma, but I’m unwilling to further test that claim.

New experiences are emotionally exhausting when you have a chronic illness, but I’m glad I went.

I’m flaring like pants in the 70s

Sorry I’ve neglected you, reader. I’ve been very sick, because nobody warned me about the noxious tar fumes at work. For the last two weeks, I’ve been fainting, puking, rocking myself in the fetal position, and praying the following:

Dear God,

Please let me sleep through the night without pain or pain-induced nightmares about becoming the hobbit or a pregnant war bride.

Please don’t let my coworkers kill me.

Thank you for helping my dog not to shit all over my condo while I was in the hospital.

And thank you for oxy and Lily Tomlin.

Amen.

I haven’t forgotten you, reader, but I’ve learned I’m pretty rotten to be around when I’m in pain. This is the most inspiring post I could muster. Although I only used one swear, which happens to be biologically accurate. I must be getting better.