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 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.

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.

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.