Texts from the hospital

I’m recovering from a five-day hospital stay for a CSF leak. After two weeks of agony, adrenaline, and vomiting, a neurologist ordered a blind blood patch, and luckily it worked. Luckily, it’s still working. However, the leak, the MRIs, and the dye really pissed off my mast cells. And two doctors refused to give me mast cell medications.

I feel like I’ve been to hell and back, and I need to rest before I process the trauma.

I checked into the emergency room alone, per usual. I am my own best advocate and I hate asking for help. However, I underestimated the sedating power of Diluadid, Ativan, and Benadryl. I remember trying to text a single word to a friend for several minutes before giving up. Another friend suggested I dictate my texts and I thought that was a brilliant idea. Then I promptly forgot that idea.

My Facebook posts quickly devolved from official updates into a stream of consciousness.

“I hope Sancho visits me.”

Sancho is my toy poodle service dog. Instead of asking for someone to get him for me, I simply hoped aloud Sancho would make that choice himself – as if Sancho drives himself to the hospital. Luckily, my friends brought him to the hospital soon after my post. He woke me up at 3 am, when I pulled my IV out in my sleep. So. Much. Blood.

“At least I have corner room now. I’ve been watching humans park add snow all day”

I think this was the point in which my friends realized I probably shouldn’t be alone. On the 7th floor, I could see a nearby ski hill making snow. I watched it for hours, my own personal snow globe. Nobody else seemed to think it was as wonderful as I did.

My friends made sure I had everything I needed, making several trips to my condo. They even let me think I was still being helpful and orchestrating the details via text message.

“Ok but my mekhjnkr will have just to let you in”

Amidst all the cognitive impairment, I managed to purchase an Audible subscription and download several audiobooks. However, I listen for one minute before realizing I could not concentrate on a whole sentence.

On the fourth day, I became really pissed.

“Kidney swelled shit and cutie wouldn’t believe me… almost left crying”

 I have a couple names for the doctor that refused to administer mast cell medications when my kidney went into hydronephrosis. Cutie is not one of them. And by “almost left crying,” I really meant threatened to rip out my IV and flee the hospital screaming.

Without a doubt, I would not have survived this hospital stay without my friends. Perhaps the cognitive impairment was the blessing I needed to accept help. My friends reminded me that we all deserve help and we all struggle with autocorrect.

“She’s been through a lot this afternoon. But they finally have things almost under control. Her murder is fantastic.”

I have a lot to process: a leaking brain sack, a shrinking kidney, and a health care system that failed me. But my murder is fantastic. I don’t know what that means, but somehow I am comforted.

The Haunted Laundry Room

I wait until the building becomes quiet before opening my door. With a basket on my right hip and a jug in my left hand, I carefully lumber down the empty hall, doing my best not to rouse anyone. I never know if I’ll have enough time.

At the end of the corridor, I set down the jug and unlock a door. The automatic light flickers on and I peer inside. Along the wall, the mouths of two machines gape open and empty. The table is bare. A familiar, putrid smell lingers in the windowless room.

I close the door behind me and begin cleaning the first machine. I spray the inside of the metal drum and scrub around each of the tiny drain holes. I work quickly, yet thoroughly, until the tub gleams and my nostrils sting from vinegar. I insert my quarters, load my laundry, and pour clear detergent and more vinegar into the machine. The machine jolts awake as I press start and I scurry back to my condo.

Thirty-four minutes later, I unlock the door and scan the laundry room again. I am still alone. I am safer alone. I quickly move the damp clothes to the dryer and refill the washer with more laundry. I toss six wool balls into the dryer and press start on both machines. The rumbling grows louder. Perhaps, this time everything will go as planned.

An hour later, I return to the laundry room. The machines are quiet, and the air is warm. I open the dryer door and scream. On top of my clothes lays a translucent white square. I stare in disbelief at this miniature ghost. I know I checked the dryer before loading my clothes. I always check. I seize the dryer sheet by its very corner and fling it into the nearby trash can.

With both hands, I draw a warm ball of clothes to my face. A sweet scent fills my sinuses. For a split second, I am transported back to my childhood bedroom, to my yellow blanket my mom used to wash. Suddenly, an invisible force begins to choke my neck. My skin prickles and burns.

I rewash the clothes, but still the scent haunts me. When I return to the laundry room for the fourth time, tired and swollen, a second basket looms on the table. Unfamiliar colors swirl inside the clear door of the washing machine. On top of the machine, a bottle of detergent drips with blue slime.

Candy WAS dandy

“Are you sure you don’t want to come with us?” my mom asked, standing in my bedroom doorway, alongside a petite, but bloody vampire.

“Nah,” I said, barely looking up from my book. I was thirteen, officially too old to tour the neighborhood with my mom and little brother, and all of my friends had retired from trick-or-treating.

As soon I heard the door slam, I dropped my book and sprinted to the living room window. Behind the curtain, I watched them turn right at the end of the driveway and disappear into the darkness. The silence of the house filled me with anticipation.

Back in my bedroom, I changed my clothes: black leggings and a black sweatshirt. I ripped the pillowcase off my pillow, grabbed the cat mask I had dug out of storage a few hours earlier, and laced up my running shoes. I snuck out the front door, undetected by my dad. At the end of the driveway, I turned left and burst into a full sprint.

The purpose of Halloween is candy. It’s not about visiting with your neighbors, or spending time with your friends; it’s about collecting the most candy. That year, I decided I was going to collect the most candy ever. Goodbye pokey family and doorstep chitchats. My mask would give me the anonymity I needed to speed up my hustle. I did not walk door to door. I ran.

I ran like a thief in night. Literally. I took more than my fair share of those unattended bowls of candy left on doorsteps. I learned to time my approaches perfectly, sliding into other groups just as the homeowner opened their door and the kids held out their bags. I rarely had to press the doorbell and wait. Sometimes I didn’t even say trick-or-treat.

Only the weight of the pillowcase could stop me. I returned home cradling my 20-pound pillowcase in both arms. I dumped its contents on my bed, admired the assortment, and congratulated myself. I rewarded myself with my favorite kinds first, but it didn’t really matter. I was going to eat it all anyway. It was just a matter of time.

Thirty minutes later, my mom and brother returned home. When my mom opened my bedroom door to tell me how I had missed out, she found me grinning wickedly surrounded by wrappers.

******

Skittles were one of my favorite candies. Particularly the purple Skittles. I think I started buying them from the office vending machine to try to beat the afternoon slump. This was four years ago, when my digestive issues were beginning to get severe. I was avoiding dairy and soy, so Starbucks was no longer an option. I had cut out gluten, and was resorting to all fruit smoothies for lunch, but my gut and butt were still angry.

A bag of Skittles seemed harmless given my current state. At least it would help my mental health, I justified. I spread the tiny spheres out on my desk, admiring their bright colors, as if it would slow my consumption. As soon as they were gone, I wanted more. My coworker caught me with the second bag and warned me I was going to be sorry. Maybe, I said, but I was going to be happy first.

One hour later, the Skittles started punching me in the stomach. I continued to work at my desk, accepting my punishment and accustomed to digestive pain. Suddenly, a sharp, overwhelming urge rushed me to the bathroom. I pooped the entire rainbow for the next 30 minutes.

If you know me well, you know this did not discourage me. In fact, they next day, I ate two more bags of Skittles and again, pooped my guts out. I wasn’t surprised by my belly ache, but the ferocity of the Skittles shooting through my system was terrifying.

I googled my symptoms and discovered fructose intolerance. People with fructose intolerance can’t digest foods like corn syrup, which is in everything! I refused to believe I could no longer eat my beloved candy, so I keep eating the Skittles for a full week. I spent a lot of time in the bathroom that week.

Eventually, I realized not only were the Skittles making me sick, but my lunchtime smoothies too! I thought all fruit smoothies were the ultimate health food, but I was wrong. It turns out a lot of supposed healthy foods make me sick. Soon after, I discovered the low FODMAP diet and have stuck with it ever since. My hypothesis is mast cell disease destroyed my body’s ability to create many enzymes necessary for digestion.

Now I binge on corn syrup free jelly beans. Sometimes by the package. You can take the fructose out of the candy, but you can’t take the candy out of me.

Death, and feeling like death, by chocolate

Three years ago, before my diagnosis, on a chilly fall night much like this one, I decided to warm my condo by baking. I cracked a couple eggs in a large bowl, stirring in water, oil, and my favorite brownie mix. The thick batter rippled into the square pan as I scraped the bottom for every drop of chocolate. For 30 minutes, I tried to occupy myself as the heavenly aroma taunted me.

I live alone, so you can guess how this story ends.

Yes, I ate the whole pan. What was I supposed to do? Share with my coworkers the next day? Don’t be silly. The brownies wouldn’t even be warm and gooey by then, which is the best part. So what if I tried to reframe the situation as an act of empowerment? Again, I live alone, so only my poodles were judging me.

And then I threw up the entire pan of brownies.

Turns out warm and gooey vomit is also less painful, but I couldn’t believe how my body was forsaking me. Chocolate is my solace, or so I thought. Maybe I had just eaten too much?

So a few months later, when I baked my next batch of brownies, I only ate half the pan. Surprisingly, I puked those up too. The next day, I tried a very conservative 2”x 3” piece, promptly vomited, and lost my desire for brownies. I have not had one since.

*****

My disease has forced me to give up a lot: sunshine, sports, and social events to name a few – but I’ve accepted the adjustments without much complaining. However, when I first read chocolate, specifically cocoa, is high histamine, I denied it. After all, chocolate always brought me joy and eased the tough days.I have fond memories of devouring rows of Oreos after a long day of school. I assumed chocolate was going to help me cope with this disease too.

I spent a full year in the “bargaining” stage of grief. First, I realized dark chocolate made me puke much quicker than milk chocolate because of the cocoa content. Luckily, I always have preferred the less dignified milk chocolate, and willingly gave up dark.

Next, I decided if I ate tiny portions of milk chocolate throughout the day, instead of a whole bar in one sitting, my stomach would be okay. I bought individually wrapped Dove Promises to help me ration. (Plus, I am fructose intolerant and Dove Promises don’t contain corn syrup.)

I wanted to ensure I received my regular daily serving of chocolate, so I usually began my doses at about 8 am every morning. My little reward for going to work, I told myself. Before lunch and after lunch, I’d have a couple more pieces. Then, almost every day, around 2 pm, I’d mindless demolish half the bag. I wouldn’t even pause to read the little promises in the wrappers. When the nausea and cramping began, I didn’t even feel regret. I took Benadryl and awaited my punishment.

One week, I was so tired, I ran out of chocolate. The craving gnawed at my concentration, but I noticed my belly felt remarkably more comfortable. I was spending fewer HOURS in the bathroom. A reasonable person would have stopped eating chocolate at this point, but I am not reasonable when it comes to chocolate. Instead, I decided the culprit was the soy.

Yes, I am ridiculous, but I was actually right. My chocolate addiction uncovered a severe soy intolerance. I had already cut most soy out of my diet, but of course I never considered eliminating chocolate.

Do you have any idea how hard it to find soy free, corn syrup free, milk chocolate? And how expensive it is? Soy free, milk chocolate also seems to have a higher cocoa content, so I settled on Theo’s Milk Chocolate Peanut Butter Cups as my preferred poison. Besides, peanut butter is protein, so basically, it’s a health food.

…which leads me to my current predicament. My local Whole Foods is out of my peanut butter cups. I guess I bought the entire stock. Then I went to Minneapolis, and bought their entire stock. I don’t know where I’m going to get it from next, but I’m certain nothing will stand in the way of my love for chocolate.

*****

P.S. Hell’s Bells and Mast Cells is now on Patreon! Please consider becoming a patron of this blog for as little as $1 per month to help me cover hosting costs. Plus you’ll get get exclusive writing and health updates from me! You can find more information about becoming a patron at www.patreon.com/hellsbellsandmastcells. Thank you for your support!

3 tips for MCAS warriors

#1. Never underestimate your mast cells

Everyone has mast cells. Mast cells are part of our immunes systems; they help keep us alive. For most people, mast cells are occasionally annoying – a runny nose in the spring, a bug bite in the summer, or perhaps eczema in the winter.

However, mast cells can also destroy us, especially in the case of mast cell disease. Basically, overactive mast cells incessantly dump dozens of chemicals into our bodies and we suffer in a million different ways. My mast cells have given me a black eye, temporary deafness, paralysis, and adhesions to name a few uncommon symptoms. Reactions can affect every organ of the body, causing symptoms and complications beyond most doctors’ imaginations. Always consider mast cells as the culprit.

#2. Do not ignore or argue with your mast cells

You will not win. Mast cells have strong opinions and rarely compromise. If you continue to disregard your mast cells, they will probably try to suffocate you. I really regret ignoring my mast cells’ warnings and continuing to expose myself common triggers (e.g. heat, high histamine food, fragrance). As a result, instead of just flushing and nausea, my throat started swelling all the time. After my first ER visit, I vowed to listen to my mast cells, but it was too late. They could not calm down. It took a full year of avoiding triggers to decrease the severity of my reactions. Others are not as lucky.

If a trigger is absolutely unavoidable, consider pre-medicating. If you’re undiagnosed and suspect MCAS, pursue blood and urine testing ASAP – don’t ignore it!

#3. When in doubt try Benadryl*

*Unless you’re allergic to Benadryl. Or the doctor says you shouldn’t. I am not a doctor.

BENADRYL IS MAGIC.

Like most people, I thought Benadryl was just for rashes and sinuses, until I started using it like duct tape for mast cell disease. Dye-free, of course.

Vomiting, dizziness, IBS – Benadryl!

Muscle pain, bone pain, migraine – Benadryl!

Rage, anxiety, doom – yes, can you believe it?! Benadryl!

Please remember, mast cells release many more chemicals other than histamine. That being said, histamine is most notorious for a reason. Again, it can affect every organ of the body. Learning about histamine is a great starting point and nothing taught me more about the effects of histamine than Benadryl. Every time I got relief from taking Benadryl, I knew I could attribute the symptom to histamine.

Of course, the goal is to identify and avoid the trigger in the first place, not pop Benadryl like Tic Tacs. In fact, I try to take Benadryl as sparingly as possible to avoid rebounding and losing effectiveness. However, Benadryl can be incredibly helpful in understanding mast cell disease.

When healing takes forever

Brain juice leaks are a real pain in the neck. Literally.

You know that feeling when you think you’ve recovered from an illness or injury, and then all of a sudden you projectile vomit? That’s how I felt two weeks ago when I stood up and realized my headache was gone. Hooray, no more bedrest! I leaped around my condo tackling all the things I hadn’t been able to do. Less than ten minutes later, a web of pain shot up my neck and into my skull. I paused, rolled my neck, yelped, and puked.

Although the CSF leak had healed, the injury severely strained the right side of my neck. Searing pain sent me back to bed. I cursed my luck – I can accept a sports injury, but a muscle strain while on bedrest?!

I know I should be grateful that I am healing, but honestly, I feel empty and trapped. I’ve mastered the Zen of kidney stones and anaphylaxis, but 38 days of pain and isolation are wearing on me.

Some people are graceful about pain and bedrest. Good for them. I turn into a monster. Constant pain induces desperation and bedrest invites me to ruminate about my mortality. Books and movies are temporary distractions at best. Nothing brings me joy, not even prednisone. I tried practicing gratitude, but acknowledging “at least I’m not a giraffe” did not make me feel better.

Over the last few years, I’ve learned three things about my shitty feelings:

  • Pain and mast cell reactions can induce shitty feelings.
  • Fighting shitty feelings is futile.
  • Shitty feelings are temporary.

I know this pain and these feelings will go away, even though it’s hard to be patient with recovery when I’ve already faced a shitstorm of health issues. So tonight, I will pop my muscle relaxant, wrap myself in a blanket, and embrace my shitty feelings.

“Simply be present with your own shifting energies and with the unpredictability of life as it unfolds.” – Pema Chödrön

“Acknowledge your shitty feelings when shitty things happen.” – Hell’s Bells and Mast Cells

P.S. Pain also makes me swear more. Not sorry. It’s a natural form of pain relief.

Brain juice is leaking out my ear

Day 23: I’m stranded on an island of pillows and sheets. I think the leak has stopped, but to be safe, I must stay here for a few more days.

While most Minnesotans are floating on lakes, here I lie on bedrest for a cerebrospinal fluid (CSF) leak that started last month.

Day 1: My right ear is taking on fluid. Just the one ear. No sneezing, no coughing, but maybe the start of a headache.

 Day 2: I pooped, then fainted. At least, I was able to pull able my pants before I fainted. I do not want to die like Elvis. 

Over the next two weeks, the pain at the base of my skull and behind my right ear became more severe, like someone had swung a bat at the back of my head. None of my mast cell medications provided relief. As an experienced medical detective, I retraced my steps and remembered, the day before my symptoms started, I had a chiropractic adjustment. The chiropractor had used her activator, a small metal device, on right side of my neck, just below my skull, the same spot as my headache.

My chiropractor specializes in Ehlers-Danlos syndrome (EDS), a connective tissue disorder associated with mast cell disease. Over the past year, I’ve experienced more joint subluxations and my chiropractor gentle guides my bones back in place. However, I know neck adjustments, even gentle ones, can be risky for EDS patients.

Day 13: I think my brain is leaking, I’m just not sure how to tell anyone.

Fully aware nobody likes a self-diagnosing patient, I emailed the facts to my primary care doctor without my hypothesis. She responded, “I have no recommendations at this time. Try more [mast cell medications].” At this point, the pain was causing me to vomit. I only felt relief after laying down. Classic symptoms of a CSF leak.

Day 14: The ER doctor is pretty sure I won’t die tonight. 

In ER, my doctor was concerned about a stroke or vascular dissection. When I suggested a CSF leak, he said that wasn’t a possibility, because I hadn’t experienced a head trauma. When I told him about my chiropractic adjustment and EDS, he paused and then left room, I think to Google. My MRI and bloodwork came back normal, and he sent me home. I really should have asked to see the neurologist on call.

Day 16: I yelled, “Brainjuice! Brainjuice! BRAINJUICE!” But the pain did not stop.

I instituted my own bedrest until I could see a neurologist. It’s not like I really had a choice. The ER doctor prescribed pain medication, but laying down was the most effective way to relieve the pain. My friends with EDS were also convinced I had a CSF leak, while the rest of the world considered I may be losing my sanity.

Day 21: The neurologist says I probably have a CSF leak.

The neurologist believes my CSF leak will heal on its own with more bedrest. It is nice to be validated, but mainly I am tired of enduring this medical circus. My healthy friends aren’t sure what to say, and neither am I. I’ve accepted becoming allergic to the sun, delicious food, and most people. But now if I poop too hard my brain may come through my ear? That’s where I draw the line, folks.

So, I’ll be in bed for the next few days, trying to focus on my gratitude for the Internet. The Internet that provides me with unlimited movies, TV shows, and books without having to lift my head. The Internet that allow me to share my jokes on social media, so I don’t have to laugh alone and continue to question my sanity. The Internet that provides me with research papers and fellow patients who urge me to advocate for myself when my brain juice leaks.