A tale of two kidneys

You know how in movies sometimes a devil and angel sit on the protagonist’s shoulders? I, too, have good and evil tempting me these days. Except my devil and angel are my kidneys.

My bad kidney, the one that hoards stones, chides me every waking hour, “You can’t work; you’re in pain. Go back to bed and never drink water again.”

Good Kidney reassures me, “Don’t worry, you still have me.”

I tell Good Kidney that doesn’t really help the pain. Or the fact that I need surgery and a stent shoved up my pee hole.

Good Kidney retorts, “At least, you don’t have a penis.”

I can’t argue with that. So, I carry on and I ignore Bad Kidney.

However, on Monday, Good Kidney suddenly whimpered, “I don’t feel so good. We should go to the ER.”

I considered ignoring both kidneys, but the internet told me that doesn’t usually turn out well. By the time I got to the ER, Good Kidney was crying, Bad Kidney was screaming, and I was asking for a wheelchair.

The nurse offered pain medication, and I initially refused for fear of a mast cell reaction. However, Bad Kidney was insistent, “Pain meds! Pain meds! Now, now, now!”

So the nurse came back with Diluadid. I’ve had it before, also for kidney stones, but I couldn’t remember how it felt. (That’s probably because I was passing a 5mm stone and blacked out.) As soon as the nurse pushed the medicine, pressure rushed through my body, filling me like an overinflated balloon.

I braced for anaphylaxis, certain my mast cells had been activated. Nothing. I am led to believe my mast cells are Team Bad Kidney.

I tried to relax, despite the overwhelming desire to burst out of my skin. I took a deep breath. I wondered if this is how gingerbread men feel when they are cut with a cookie cutter? Do they mourn their leftover body on the cookie sheet?

Are we all one big cookie?

The medication wasn’t worth the hangover. I could still feel Bad Kidney, although it was more tolerable. The doctor recommended surgery sooner. Feeling defeated, I left the ER, made cookies (?!), and went to bed.

Doodling is easy, right?

Lately, I’ve found comfort and inspiration in doodles. These are my favorites on Twitter:

After finishing a delightful Sarah’s Scribbles book, I decided doodling would become my new hobby. Doodling will give me joy and purpose! I will spread laughter and cheer!

So I watched a few YouTube videos on Adobe Illustrator. I can totally do this!

I realized I could make an amazing infographic to help explain The Histamine Bucket metaphor for mast cell disease. I’ll doodle an infographic that is so informative that everyone in the world will understand MCAS!

I opened my laptop and got to work. I love new projects!

A hour passed. THIS PROGRAM DOESN’T MAKE ANY SENSE!

 The result:

First doodle

I don’t think I’ll be educating the world about MCAS by doodles any time soon. That squiggle in the upper left is just spite.

But I didn’t give up. Because failing at doodling is embarrassing.

I figured out how to use the shape tool, but only the shape tool. I am a brilliant shape wizard!

The result:

Poodle doodle

That’s actually a fairly cute poodle. Unless you have a phobia of poodle and spider crossbreeds. 

 My quest for a new hobby continues.

MCAS Crossword Challenge

My grandma was the first chronically ill person I ever met. She suffered from emphysema and was confined to a couch and bed for the last 7 years of her life. I slept over at her house often. She was desperate for company, and I, less than nine years old, was desperate for attention. We were best friends.

At night, we’d share a full-sized bed and recite the Lord’s Prayer together. “Amen,” she would say as she pulled the covers over my head.

And then she’d fart. Purposefully. You can guess where I got my sense of humor.

Although grandma’s body was failing, her mind was sharp. She spent her days watching “Murder, She Wrote”, playing handheld electronic poker, and completing crossword puzzles.

I can’t imagine seven years of confinement WITHOUT INTERNET. (It was a big deal when she got a cordless phone.) I wish I could ask her how she kept her sanity. Did she really like crosswords or did she just need to keep her mind busy?

Yesterday, I created a crossword puzzle. I don’t even like crosswords. Of course, I’m also terrible at them. However, I needed something to do, something to distract me from feeling sorry for myself for missing out on summer.

Sometimes, we just need to keep busy. So here’s a crossword puzzle for you to enjoy:

Hell’s Bells and Mast Cells Crossword Challenge

…unless you don’t have mast cell disease. Then you won’t enjoy it, because it’s full of ridiculous MCAS terms that no average person should know.

If you complete the crossword, please let me know in the comments below!

 

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.

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.

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See the meat ball?

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