When mast cells commit the perfect crime

A new pain became the center of my universe last week. Well, it’s not really new, but I avoided telling you about it, hoping it would go away. I haven’t been able to sleep on my right side for weeks. I ignored it until last Monday when I threw up in my office and burst into tears in front of my boss.

That’s when I decided to go to the ER. I worried my gallbladder was about to rupture, but all of my labs and imaging were normal. At first I declined pain medication, but my pain became all consuming. Every time Twinkle Twinkle Little Star announced the birth of a baby on the hospital intercom, I could only think of pain. “Another ripped vagina,” I thought.

On Wednesday, I was injected was radioactive material to check the functioning of my gallbladder. For two hours, I lay strapped to the scanning bed as my right side stung and throbbed. The radiologist informed me the results were normal. I cried the whole way home, aching and hopeless.

As I pulled into my condo’s driveway, I noticed a woman walking a small, white dog. Its tail bobbed with each springy step. I wiped my tears and smiled for a brief moment, distracted by the dog’s contentment.

As I drove closer, I realized it was my dog. I forgot my neighbor had offered to walk my dog.

On Thursday, I met with a surgeon about removing my apparently healthy gallbladder. We both agreed my mast cells are likely to blame, but there is no evidence. My mast cells are committing another perfect crime. It’s possible gallbladder removal could relieve my pain, but there’s no way to know for sure. Meanwhile, I am losing my sanity (and weight).

I don’t know what I am going to do. Today, the pain is shooting up my back and into my jaw. The holiday season is compounding my hopelessness. Right now, my only consoling thought is imagining giving my gallbladder at my office’s white elephant gift exchange. Luckily for my coworkers, my gallbladder (if removed) will need to sent to pathology. Bah humbug.

The Hellness Assessment

Every November, I feel compelled to smash my computer and light the room on fire while completing my employer’s wellness assessment. The supposed purpose of the assessment is “to support your overall health and wellbeing”. In actuality, it raises my blood pressure and triggers hives and emotional instability. Nonetheless, I submit myself to its faceless insults in order to save $500 on my health insurance premium each year.

The assessment’s 50+ questions remind me that every aspect of my health sucks. As if I’ve forgotten. The “right answers” are obvious, but I am committed to living my authentic life and answer with unabashed honesty. Here’s an example:

Pain assessment

The assessment should have ended right there. They should have sent me a gift basket and left me alone.

But it continued:

  • Have you had a flu vaccine in the past year?
  • How much rigorous activity do you do in a week?
  • Do you eat high fiber foods?

I do not do any of these things, because they tend to send me to the ER. If the goal of this assessment is to lower my health costs, then I should be congratulated for not doing these things. Instead, the assessment ridicules me. “Eating healthy is like medicine – and you may want to try some of that medicine. Work more fruits, veggies, and whole grains into your diet to refuel your body and brain.” As if I shoved two colonoscopy tubes up my butt without trying eating healthy first? I bet these are the same people that think beans are a magical fruit.

At the end, the assessment tells me I am “going in the right direction” while simultaneously displaying a chart that shows I am “well below average”. Well, thank you for reminding me I’m merely surviving. My list of weaknesses includes nutrition, physical activity, pain and stress. Do you know what would lower my stress? Eliminating this damn assessment.

Finally, the assessment recommends a list of activities, or in my case, ways to die. At first, I was encouraged that this year’s assessment included a box to indicate a disability that limits physical activity. However, apparently it had no bearing on my results and the recommendations included biking to work every day.

There are two recommended activities that don’t threaten my physical health. However, one of them almost crushed my mental health: coaching from a certified nurse. Last year, I signed up for phone coaching with the hope of venting my frustration and holding someone accountable. On the first phone call, the nurse related what she learned about mast cell disease on Google. On the second phone call, she suggested more activities and I explained how each one would kill me. On the third phone call, she recommended I keep reading library books for pleasure and wished me luck. That was three hours of napping potential that I can never get back.

The other activity recommended by the wellness assessment, the one activity I am able and willing to do, is write an advance care directive. As if I wasn’t in a foul mood already.

Listen here, wellness assessment people:

I am enough despite your ableist assessment. Do not compare me to other people. Do not waste my time with your insulting questions and recommendations, while I fight bigger battles like ADA accommodations and access to medical care. I see more than a dozen doctors a year; it’s best to let the specialists make recommendations. I am a fabulous medical unicorn. I deserve infinite gold stars. And a gift basket.

In the Hall of the Mast Cell Queen

A narrow path of light gleams on the red marble tile, inviting me into the hall. I pass seven pairs of large, oak doors guarding both sides of the corridor. At the 15th door, I look over my shoulder. The hall is silent except for my steady breath. I unlock the door, enter the room, and wait for the click of the latch behind me.

The room is small and plain: white walls, dark carpet, and no windows. A desk consumes the majority of the space. They say I will be safe in here, but they don’t fully understand. I set to work anyway. Work is my reprieve these days. When I can focus, I can forget my loneliness, and my curse.

At first, I had hoped I just needed more sleep. When that didn’t help, I tried positive self-talk, but my heart pounded so furiously I could no longer hear my thoughts. Anxiety, the doctors suggested at first. However, the more I shared, the more uneasy the doctors became. They told me they could not help me. They did not believe me. I knew better than to tell them everything.

Shadows pass along the ½ inch gap between the red marble tile and the large, oak door. I am not alone in the building anymore. I wonder if I should seal the gap to protect myself. They don’t mean to harm me, I am told, but I know they will if let them get too close.

Before the curse, I walked the building freely at all hours, unaware of the dangers floating through the hall. Perhaps, if someone had warned me, I could have avoided it. Perhaps, someone did warn me, and I didn’t believe them.

Another shadow glides along the gap and stops. Three raps against the oak door jolt me out of my chair. There’s no way to know what is waiting for me on the other side, but I must answer. I slowly open the door a few inches and peer into the corridor. A familiar face, a safe one, smiles and asks, “How are you?”

As I push the door further open to invite my visitor in, a draft cuts into my room. At first it is sweet, like a rose, but then it burns as tunnels down my throat. I back away, but it wraps around me like a snake, crushing my chest. With every gasp for fresh air, the poison travels deeper into body.

The smiling face, unaware of the danger lurking behind them, notices my alarm. Clutching my throat, I declare my curse, “I smell living people.”

Happy Halloween!

More mast cell grievances from Minnesota

My kidney still hurts. Removing the stones relieved the severe pain, but my mast cells are still spiteful from the surgery. I asked my urologist if I could try a mast cell stabilizer that targets the urinary tract. My hypothesis is it would decrease my kidney and ureter inflammation and consequently, I would collect less stones. My urologist said he hasn’t read any research supporting my claims.

Of course not. I taught him almost everything he knows about MCAS. Furthermore, I AM THE RESEARCH. Literally, I am a MCAS research participant. Am I supposed to jeopardize my body while I wait years for research to be published?

He asked me if anyone was managing my MCAS, which is the Minnesota way of telling me to seek help elsewhere. No, no one wants to manage my MCAS since my specialist left the state.

And then my urologist told me to piss off.

Okay, he actually told me to complete a 24-hour urine analysis. Another repeat test, another waste of time.

My desperation compounded when I learned Selena Gomez got a kidney transplant. If Selena, a multi-platinum singer, can’t save her kidney, I fear mine is also doomed.

Additionally, Selena’s friend gave her the kidney. I don’t even know how to ask my friends to bring me dinner. So doomed.

Find a new doctor, one might suggest. Unfortunately, the MCAS situation in Minnesota has gotten worse. As you may recall, the university stopped treating MCAS patients after my specialist left. The university recommended three doctors in other networks. Since then, all three doctors have closed their doors to mast cell patients. That sounds horrendous until you hear Mayo Clinic also refuses to see new MCAS patients. Apparently, Mayo Clinic is currently considering if they will see legitimate MCAS patients. Whatever that means.

Yesterday, I received a $500 hospital bill and a letter from the university, which will no longer treat me, requesting a donation to support its medical research. It’s a miracle I did not spontaneously combust.

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.