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.

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 suck at four day weekends

I haven’t blogged in a bit, because I’ve been feeling sorry for myself. I squandered a four day weekend. Woe is me.

I rarely get vacation days, because all of my paid time off is used toward sick time. I think it’s mighty unfair that chronically ill people can’t afford vacation days because they spend their time on trips to Pain Island and Brain Fog Beach.

Yes, I’m in a sad and bitter mood, because I was given the rare opportunity of four days of rest and I completely overcommitted. I decided would compete in an AKC agility trial all four days. I would like to remind you that I am allergic to exercise. And also dogs.

Agility is the dog sport with the tunnels, weave poles, and other obstacles. Each run lasts about 50 seconds, so with premedication my body can tolerate a couple. But not TWELVE. I told myself all the pain would be offset by an armful of ribbons and maybe a new title. Instead, I came home with zero ribbons and a few embarrassing videos.

It turns out almost everyone who signed up for all four days regretted it. Why do we do this to ourselves? Why do I forget my limitations around others? Do I enjoy the disapproving looks from my poodle?

I struggled with overcommittment before I was diagnosed, which certainly contributed to the severity of my disease. However, now I face violent and serious consequences.

Like alien nightmares.

It was a short dream on Sunday night. I heard a siren and instinctively began running, trying to find somewhere to hide. Suddenly, the floor I was standing on started to rise toward the sky. The sides of the floor folded up like a box and then a spaceship, and I realized I had been captured by aliens.

I awoke sickened with terror, only to realize I couldn’t move at all. Bursts of hot pain began shooting down my arms and legs. I watched helplessly as my limbs shook from spasms. In reality, I had been captured by my mast cells in the dead of the night.

The attack left me exhausted physically and emotionally. I felt anxious about returning to work unrefreshed, but forced myself to attend the remaining day of the competition. When would I feel refreshed again? Weeks? Months? I came home and cried irrationally at the possibility of never enjoying a vacation again.

Then I ate a chicken quesadilla. I watched Season Five of Girls and read David Sedaris’ “Naked.” My mast cells settled down too. Self care isn’t hard. The hard part is saying no.

I bought some pictures at the trial to cheer me up. Because I look super athletic. (They cropped out my moon face.) I guess people usually buy the pictures for the images of the dogs.

CD_23844_446922_quixoteSteel_1aj17052715_0375_DL.jpg

Photo credit: GreatDanePhotos

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!

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.

IMG_5792

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

IMG_5804

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.

IMG_8778

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.