I have a lot of problems right now

So, inevitably, I tapered off prednisone and fainted all over my condo for three days. Then I decided to be brave and try a new treatment: quercetin, a mast cell stabilizer. At first, it felt amazing. My kidney inflammation completely disappeared. Two days later, I lost my vision and feeling in the right side of my body.

After I stopped the quercetin and my vision came back, I lost hearing in my right ear. I have no idea why my mast cells decided to trap a bunch of fluid in my ear. I tried to tough it out, but vertigo forced me to crawl like a baby. Sudafed opened up my ear tubes, but now the decongestant is pissing off my pee tubes.

And no one wants to hear about these problems.

So, here’s another.

A young guy moved into the condo next to me. This is significant because until now I was the token young person in the building. It’s nice to live next to another person with a job and other priorities besides monitoring me, my dogs, and my garden. (Stop looking in my window, Susan!)

As soon as he bought the place, he started tearing down the walls. I think it’s admirable when someone renovates their own place, so I didn’t even mind the noise. Although I did get nervous when my bathtub shook as his sledgehammer blasted the adjoining wall.

The following day, as he continued to work on his bathroom, I learned my shower wall provides practically no sound barrier. Even with my inflamed ear tubes, I could hear every word of his TED Talk podcast… in my living room. Of course, at that moment my pee tubes declared it was time to relieve myself. Reluctantly, I sat down on the toilet. This episode was about gender and genetics. So, he’s a handyman and an intellectual. And yeah, of course, he’s attractive. After all, one does not remodel without muscles!

First impressions are everything, and the sound of my tinkle is reserved for my closest friends. I held my bladder and wished I had to do another 24-hour urine analysis, so I could pee in a bucket in the privacy of my bedroom. Maybe I need to go to the hospital to get my problems sorted out. Or at least until my neighbor puts a bathroom wall up.

What goes up must come down

When I was seven years old, I took my first plane ride to California. I was technically visiting my aunt, but we all know I was really there for Disneyland. My parents promised me the Happiest Place on Earth and I believed them.

My aunt had the honor of taking me. Holding my hand, she led me around the theme park, as I marveled at the attractions. The first item we bought was an autograph book, commencing the hunt for Disney characters. As the morning progressed, I became braver at approaching princesses. I even procured my own princess hat.

So, when my aunt suggested Splash Mountain, I was excited. I love water. She asked me if I was sure, and I said yes. To be certain, we watched several boats drop down the waterfall, as the photo kiosk captured gleeful riders.

I hopped into the seat next to my aunt and boat continued to glide forward through the towering rock walls. I grasped my aunt’s hand on one side and the handrail on the other. The first dip, a few feet, made me giggle and my hands relaxed. We drifted along the outside of mountain, and re-entered the dark cavern, this time surrounded by ducks, alligators, and bears. At each turn, new creatures sang and danced along to the catchy big band music vibrating throughout the mountain.

I snapped back to vigilance as we approached the first big conveyor belt. The boat tipped backward and I tried to determine how high we were climbing, but it was dark. I simultaneously wanted the rumbling of the boat to stop and to not stop. Finally, a small circle of daylight appeared at the top of the lift.

My aunt squeezed my hand and whispered in my ear, “What goes up must come down.”

I tried to pull my hand away. My aunt snickered. I tried to reckon with her warning. I imagined throwing a ball in the air. The ball fell. I didn’t want to fall. I was only seven years old, but I knew gravity always won. Why would my aunt do this to me?

My panic was interrupted by the sight of the tree line. I’m pretty sure I wasn’t touching the boat as we dropped down side of the mountain. The boat began to climb another conveyor belt and my aunt taunted, “What goes up must come down.”

“I don’t want to go up anymore!” I screamed.

*****

My mast cells are beating up my right kidney again. The pain got so bad I swore I’d never drink water again, but I need water to live, so I decided to try a prednisone burst instead.

I FEEL GREAT!

If you’ve never been on prednisone, it’s sort of like 3 shots of espresso, except the buzz lasts from 8 am to 4 am every day. In fact, I forgot to drink coffee this morning, as if coffee is optional. I was too distracted by overwhelming feelings of hope, determination, and joy. I spent the morning scanning documents, mending clothes, and vacuuming air ducts. I’ve eviscerated every miscellaneous pile lurking in my condo.

From there, I moved on to shopping, online AND in stores. My FitBit battery can barely keep up. I take breaks for eating, of course. Food tastes great and prednisone allows me to digest many MCAS forbidden foods like spaghetti and chocolate. It’s impossible to cook a meal without dancing.

I’ve got my ducks in a row. I’ve got my poodles in a row. I am the best version of myself.

Of course, I wish I could feel this way every day, but prednisone is black magic. The main side effect is total destruction of your body. It eats your muscles and bones, while you swell into a bulbous blob. After a few months, your can-do attitude is offset by atrophy and disfigurement. My body is still recovering from 2015, when I took prednisone for a full year.

I know what’s coming. I have already begun to taper my dose. In a few days, my heart will pound, my head will swirl, and I will struggle to sit up on the couch. I will want to sleep from 8 am to 4 am every day. I will tell my friends I feel like I am dying.

What goes up must come down, but I’m sure as hell going to enjoy this ride while it lasts.

Disneyland

Seven year old me trying to hold it together after a long day at Disneyland.

Operation Crazy Straw Part Two: Delayed Reaction

“I don’t hate you,” I told my urologist when I return to his office for my stent removal.

“Not yet,” he smiled.

I don’t usually tell my doctors whether I do or don’t hate them, but my urologist warned me multiple times that I would probably hate him for placing a stent. Strangely, I had opposite experience, little to no discomfort for five days. At worst, I yelped when I bent over the straw poked me in the bladder. I took prednisone and Benadryl religiously to suppress any mast cell reactions.

I was most anxious for the grand finale: pulling the 8” crazy straw out of kidney via my pee hole without sedation. Fellow kidney stone suffers warned me that I might scream, but the pain would only last a few seconds. Before surgery, I told my doctor that I was most worried about the barbaric stent removal, not the pain itself, but a mast cell reaction to the pain.

I set my bright yellow EpiPen in front of my urologist, a subtle threat that I was to be taken seriously.

“You know how to use one of these, right?” he joked uneasily to the nurse.

“I’ll handle the EpiPen,” I asserted. “I premedicated an hour ago. Here’s my emergency protocol.”

I lay down on the exam table wondering if I should be more uncomfortable about my nakedness. Sometimes, it just feels good to lie down.

“So, how is work?” my doctor asked.

“Well…” I said, as I caught a glimmer in his eye and felt a sharp tug in my bladder that shot to my kidney. A confusing mix of nausea and relief rendered me silent as the plastic stent dragged slowly out of my kidney, ureter, and finally bladder. Yup, it definitely was over 8 inches.

“That was easy,” I said, sitting up bewildered.

At noon, I returned to work feeling like a badass with the urge to hula. I announced to my coworkers I had no pain for the first time in six months! Furthermore, I tolerated that crazy straw better than anyone! Better than a mother serving her kids milk! I updated my Facebook: “Stent removed. No anaphylaxis. No more pain!”

Around 2 pm, my badassery wore off and I needed a nap, so I drove home. Halfway through Despacito and my commute, I felt a sharp twinge in my ureter. The pain struck again and again, and I felt the prickly burn of hives erupting on my neck. By the time, I got home I was shaking in tears and I staggering to the emergency room. (Yes, I live next to a hospital. It’s weird and serendipitous.)

The pain in my ureter became so bad I prayed to lose consciousness. When my friend rushed in the door, I reached for her hand (a sure sign I’m in level 10 pain) only to realize I barely had the strength to grasp it. All of my muscles braced against the pain. I worried I would lose control of my bowels as I shook from exhaustion. I tried to muffle my sobs and slow my breathing to no avail. I would have rather given birth to twins. Naturally.

I believe I have (unwillingly) become an expert on the pain scale. MCAS can cause daily bone pain, neuropathy, cramping, and spasms. While I have not given birth to a child, I have birthed a 6mm kidney stone.

This was worse than passing any stone, the worst pain of my life. My CT scan showed right hydronephrosis and hydroureter. My mast cells had swelled my ureter shut and my kidney was backing up with urine. The nurse gave me IV Solumedrol, Benadryl, and Fentanyl. The Fentanyl allowed me to tolerate the pain until the Benadryl reduced the swelling (and hives all over my body).

With the pain and swelling under control, I went home to manage the reaction on my own with pills. BIG MISTAKE. About one hour later, I rebounded and blubbered my way back to the hospital on foot. (This is how rumors get started among watchful neighbors.) I knew I wasn’t going to die from my reaction, but for a few milliseconds I considered death better than the hell I was experiencing.

I learned two very painful mast cell lessons that day.

#1: Expect the unexpected.

Although I anticipated a reaction, the timing and intensity blindsided me. It would have been unsurprisingly if my mast cells had reacted to the surgical lasers or the stent. However, it’s incredibly rare (maybe unheard of) to react hours AFTER a ureteral stent is removed. Thank goodness I was close to a hospital.

#2: Do not feel silly for taking precautions. 

My anxiety about the stent removal was completely validated! In fact, I was not cautious enough! Retrospectively, I realized I let my Benadryl wear off right after the removal, because I felt okay. However, my mast cells needed continuous Benadryl.

So I asked to be admitted – my first hospitalization with mast cell disease.

To be continued…

Operation Crazy Straw

I made the mistake of googling my procedure.

When you hear “stent,” what comes to mind?

Maybe a tiny coil, smaller than a thimble? Maybe a micro sized umbrella, like a cocktail decoration for a fairy garden?

Okay, so maybe I didn’t have a reasonable understanding of stents going into this, but I’m pretty sure my doctor didn’t elaborate on purpose.

Because Google revealed ureteral stents are over EIGHT INCHES LONG with curlicues at each end.

In other words, I was electing to have a crazy straw shoved all the way up my pee tube and into my kidney for FIVE DAYS.

I was equally worried about mast cell reactions to the surgery and stent. This was my first procedure since my mast cell disease diagnosis and I had no idea how I would react to some medications such as anesthesia.

However, I needed the procedure. My kidney stones were aggravating my mast cells. My kidney was constantly aching and the pain was spurring low grade fevers.

I shared all my fears with my surgeon. He listened to me, and agreed to follow the pre-op and emergency mast cell disease protocol. He tried to reassure me.

“I will leave a string, so if the stent become unbearable, you can always pull it out,” he said smiling. “Like a tampon!”

This is when I realized we would never quite be on the same page. I’m pretty sure ripping out my own eight-inch stent would be a ticket to the Anaphylaxis Express. I also questioned his familiarity with tampons. Again, I am not a medical professional, but there is a significant difference between a pee tube and a baby tunnel.

*****

My first sentence out of the operating room was, “Why did you wake me up? I was in Fiji.”

And then, “I need to pee.”

This is less curious when you realize I can only drink Fiji water.

The nurse assured me that I didn’t actually have to pee. They had drain my bladder with a catheter and I was feeling irritation from the procedure. After a quick assessment, I realized I felt quite good! My fever and kidney pain was gone! I proceeded to chat with everyone with the recovery room that was conscious. I have a suspicion that my mast cells loved the sedative.

My surgeon reported that he removed 5-10 stones, most of which were too big to pass! I basically had a quarry in my kidney!

Everyone told me the stent would be awful. They warned me that I would scream when I peed. So I emotionally prepared for death. Instead, I burst out of the bathroom, “I PEED! IT WAS FINE! I CAN DO THIS!”

The remainder of the day was awesome. For the first time in months, I had no pain. I bounced around my condo, confusing and concerning my caretaker. Thanks to prednisone, I bid her adieu at 10 pm and pulled all-night creative extravaganza. My poodle pulled a blanket over his head.

Unfortunately, the story doesn’t end here. After all, it’s a mast cell story. Part two… coming soon..

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.

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.

Happy first birthday, kidney stone

Yes, that’s right. I am celebrating the one year anniversary of passing my first kidney stone. Why would I want to celebrate such an excruciating memory?

Because it taught me I’m a badass.

Maybe a naïve badass. Initially, I tried to meditate through the pain, but couldn’t shake the fear that maybe one of my organs was about to explode. So I went to the ER and was diagnosed with a 5mm stone and a few smaller ones. Begrudgingly, I began pain medication around the clock. I started to feel pretty good. So naturally, I flew to Nashville for a work conference.

And then that f’er decided to move. Good thing “kidney stone” is free ride to the hospital from strangers. (“Oh, bless your soul, my daddy used to get those. A grown man, and he’d be on the floor crying.”)

To say I was a badass does not also mean I was a peach throughout the experience. I quickly surpassed the ugly cry. Every time the pain medication wore off, I became a werewolf, growling and clawing in my hospital bed, restrained only by the IV that became my lifeline. I was admitted for surgery, but sure enough I passed that f’er as the sun rose.

And I didn’t even get a gold star. Or card. As if nothing happened, I had to submit a summary of the work conference that I half missed.

Our society struggles to recognize the sour milestones of our lives. I celebrated my MCAS diagnosis with donuts. And it made everyone uncomfortable. One guy even tried to put a donut back once he realized the occasion. Although bittersweet, my diagnosis was a more memorable and life-changing milestone than any of my birthdays.

The internet says passing a kidney stone can be more painful than child birth. I abandoned the 1-10 pain scale long ago, but find the kidney stone pain comparison very useful nowadays. Instant credibility.

So today I’m celebrating that little stone that now resides in a laboratory in Tennessee. And the absence of any siblings since. Sometimes pain is inevitable and there is nothing to do but endure it. With MCAS, pain is a daily visitor. I suggest you celebrate when you escape it.