I’ll dance at your wedding.

Two of my favorite people in the world married each other last night in Philadelphia.

Kimpel-Philadelphia-Loews-Wedding-Photographer-046

The occasion brought together a collection of loved ones from different points in life. We met on the dance floor in sweaty, joyous circles. Time had passed but for a few hours, none at all.

A few times, I nipped up to my room for extra glucose tablets, and to check my blood sugar. I didn’t eat the cake. I switched to water after a glass of whiskey.

One of the best parts was replaying it all today. The couple’s vows to each other, and the warmth of reconnecting to love I’d never lost. Reopening to friends I hadn’t seen.

It looks a little different now, than when it all began. It is a little different now, than when it started. But the essence remains the same.

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What to do when your pancreas is an *sshole – a guide

Make two lists.

The first: All the people you don’t want to talk to.

It should include, but not be limited to:

  • the bro whose grandma has had diabetes foreverrrrr and she’s like, fine dude
  • anyone using the combination of “journey”, “healing” or “embrace” in a single sentence
  • the colleague prepping for vacation by sharing photos across social media of her #fitlife
  • the LinkedIn contact who wants to get drinks and catch up for real
  • Gwyneth Paltrow

The second: All the people you do.

I started this blog because I thought it’d be funny. Not autoimmune disease necessarily, but my perspective on it. At the time, I had one condition (grave’s) and a few weeks of dealing with it by name. I thought if I could figure out the parts to make light of, I would rise above the mediocrity of its existing literature and become its sardonic, witty authority. This was an inaccurate assumption.

Two years shy of that original diagnosis and I have two others to add – Type 1 diabetes and celiac. I’ll freely admit the celiac bit is almost funny, if only because I’ve spent so much time scowling at consumers of the gluten-free lifestyle. In the case of diabetes, the challenge of my wannabe humor becomes quite clear.

I’m uncomfortable.

It doesn’t feel funny, or fine. It doesn’t feel tragic, or fatal or profound. It feels tiring and disappointing and ongoing. It is a chronic narrative with occasional crises. It feels empty and boring and viceless. I feel empty, and boring and viceless. My day revolves around a little meter and the numbers it sends to the screen.

Sometimes I pretend it doesn’t exist. Occasionally it is all I can think about.

It is so much, and also so little, at the same time.

There’s Insulin In My Refrigerator

And I have to use it.

Didn’t see that one coming!

Sometimes, when you have one autoimmune disease, there’s a likelihood of adding another. Like with tattoos. Or children.

Where I had one, I now have two.

Like this:large

But instead of souls, think “diseases.” And instead of heart, think “Caira!”

Latent Autoimmune Diabetes in Adults (LADA, if you will) is Type 1 Diabetes’ slow-creeping, over 30 cousin. My doctor told me she sees one LADA case per year, and it looks like 2016 was My Time. To me this suggests I should be compensated. In reality, it means there are insulin injections and a drastic reduction of: carbohydrates, happiness sugar & alcohol.

It means I look at my *Luna & Larry So-Co No Dairy Delicious ice cream bars and think, “you’re stupid.”

It means I scowl as I walk through the grocery store, judging everyone in the gluten-free section. Fucking hipsters. Fucking health-conscious hacks drinking black pomegranate juice out of a mason jar, working on their craft.

Because here I am. Stockpiling glass bottles. Blending shit and taking about it. The only thing worse than someone who drinks kale smoothies is someone who previously complained about people who drink meadows for breakfasts and now has to do it.

It means I’m occasionally just a melancholy, grouchy,  Vitamix-wielding diabetic.

It means I am hungry.

It means the first time I inject myself I see the person in the mirror, pinching her belly flap, shirt tail in between teeth, holding an insulin pen in her right hand. How the fuck did this happen? I can’t do it. I pace around the apartment. Everything is saying this needle DOES NOT BELONG HERE. I saw Requiem for a Dream. I know where needles go, and where they do not.

It means I am overwhelmed.

It means, also, there is more to be written on the subject of abnormal immunity.

*No offense to you, Luna. And Larry.

Not it.

On a class trip in the 7th grade, * Nathan * and I started dating. Of course, it was never referred to as dating, and the entire 36 hour cohesion unfolded through a series of conversations between our respective comms managers, or, as they were known in 1997, friends. At some point in our relationship, I was gifted a heavy chain necklace, purchased from the lone souvenir shop on the Florida Key to where we’d been bussed to learn about The Environment.

Perhaps it was due to our fumbled attempts at in-person communication, or the fact that we never really liked each other before we became a couple – but shortly after the necklace was delivered, Nathan and I broke up.

That evening, a member of my PR team, Courtney, advised me to destroy the necklace.

“Throw it into the fire,” she suggested. And there was a fire. A big one, blazing in the middle of the tropics, for all us adolescents to sit around and discuss the sexual experience we didn’t have.

The gesture seemed a little much, to rid of a perfectly good choker into a bonfire just because * Ben * couriered over news and a smirk that Nathan and I were no more. Plus, 45 minutes earlier marked the first time I’d ever received a gift from a male non-relative.

“I just – I don’t know. Do I have to?” I asked. It was all happening so fast. Life! Love!

“Yes. This is it.” Courtney’s chin dropped and she fixed her steely eyes on me.

And that was it, because I chucked the jewelry into the blaze and had nothing else to do. It was too dark to see it burn and I flopped my arms in the air.

“Welp!”

I flopped my arms above my head on an August morning in 2014, once. I was standing outside the endocrine association of the West Village (confusingly located in Chelsea) and I was sweating in the heat. I’d just been told I had Grave’s Disease.

“Welp!”

I had an answer now and that was it. In the afternoon I began swallowing pills to treat a disease I’d learned about that week.

Courtney and the gang dismantled and as I headed back to my bunk I saw another of the class couples, sitting on a log together, giggling in each others’ faces. Something in my heart pinched. I was suddenly aware I was missing something that I didn’t know how to explain.

Those floppy-armed, stricken versions of reality cried to sleep both nights, bittersweetly unaware that wasn’t it. Not even a little bit. Not at all.

99 theories but the truth ain’t one

A few things I’ve known to be true, over the last 18 months or 32 years:

Those charges on my credit card are identity theft

Grave’s Disease has made me crazier

I should go gluten free

I will go gluten free, and it will be life changing

That croissant was delicious

Grave’s had made my anxiety worse

Perhaps it’s been Grave’s the entire time

No one gives a fuck about gluten

Everything that’s gone wrong in life is related to my inherent autoimmune dysfunction

I am dysfunctional

There is such a thing as Graves-related dating choices

Missy Elliot and I should walk for the cure

Inspiration will strike and when it does, I’ll write a novel about Grave’s Disease

Inspiration will strike eventually

My doctor doesn’t understand me

I should send her some of the articles I’ve been reading on the Internet

I don’t feel like working because I have Grave’s Disease

Grave’s Disease is the gluten-free non-Celiac of its disease friend group. Boring and anti-climatic.

Maybe I can win an award for Grave’s Disease

That’s definitely a thing

**

h/t to the fabulous @feministabulous for this post’s headline + relentless support

 

 

My Theory of Everything

Now that I feel mostly well, the times that I don’t mean that I, along with that trusty, timeless text on human anatomy, wikipedia.com, are up until 2am “diagnosing” the autoimmune epistemology of critical conditions like “rash”, “indigestion” or “groggy”.

In the early days of December, I returned to my beloved New York after five weeks traipsing through Madrid, Hong Kong, Tokyo and Seoul. I was delighted to be home. I was overjoyed to almost need a winter coat.  I was acutely aware something was amiss.

IMG_2324

Seoul does offer a nice view, however

 

A comprehensive, after-midnight Google investigation gave me the answer I was looking for. At the tenuous age of almost 32, I’d obviously developed lactose intolerance. It obviously stemmed in part from my Grave’s Disease, and in response I would adjust my diet accordingly and start living my best life. Happy new year!

Several days of non-improved misery later, I went to the real doctor – a gastroenterologist with degrees – and he said, “This isn’t your fault. It’s likely a bug you picked up somewhere. Have you been traveling lately?”

“Yes.”

Oh.

Oopsie.

 

Inside Out

What you probably know about this blog is that it documents my experience with Grave’s Disease. What you probably don’t know about this blog is that the idea for it came to me while I was in the bathroom.

A year ago, on sick leave and at my cousin’s house in the suburbs, I was freshly diagnosed and 100% miserable. Kind of like 100% Diesel, but the exact opposite. My cousin was kind enough to let me wallow around in her house for a week and do very little, except sweatily watch movies and drink decaffeinated coffee.

It was on the third day, sometime in between the First Nap Of The Afternoon and Googling the chances of my hair falling out, that I padded into the Torrey household hall bathroom, looked at my hollowed face in the mirror and shouted Eureka!

I would write about this. I would share this story and see if it resonated with anyone else. I would live it, and write it, and it would be the way to make sense of it all. There was something there, something below the sad surface, that knew this was going to be OK. Something that knew, a year later, I’d be back in my cousin’s bathroom, staring into the mirror with full cheeks and a stabilized metabolism. (Who doesn’t dream of such things?)

I was scrolling through old photographs on my phone and arrived to ones taken in June of 2014. It’s my face, but the red rims around the eyes give it away. I see a sick person now, in those photos. I see the watery, staring eyeballs, glazed and huge, and remember what was going on behind them. I doubt a stranger glancing through the pictures would notice the difference. But I do.

Also, I spend a lot of time in my cousin’s bathroom.

Head Case

I have a nightly habit of writing in a journal whatever I’m feeling at that time. It doubles as a process to pen through the stuff and write some kind of resolution to what’s going on in my head.  Sometimes I read through old entries and my thoughts sound poetic. Mostly they are just embarrassing and after I cringe and put the notebook away, I vow to never go back and reread entries. From July 14, 2014, in scrawling green pen, is this question:

Why don’t I feel well?

The words are printed in bold, whiny letters and the ink bleeds through to the next page. When I run my finger over the lines, I feel it dented three pages deep.  I remember the day I wrote it because I remember ripping the drawer from its track to take the pen out.  I didn’t have the answer.

There are some 50 million Americans with autoimmune diseases and most of them begin their illness in the dark, fumbling through protracted bouts of insomnia or depression or nerve pain, until finally, a lab comes back or an infection lasts too long and a diagnosis is pronounced.

The early signs of autoimmune disease are more subjective – they can be described as an overheated 30 year-old lamenting to her journal that she doesn’t feel well, plagued by obscure joint aches. Sometimes it’s nothing you can SEE. It’s nothing you can measure. You’re presenting yourself as a classification of person where there’s vaguely something wrong with you but you’re also kind of OK. Like Nicholas Cage.

(Sorry, Nicholas Cage).

I don’t know what happens next.

What It’s Like.

I hadn’t heard of Grave’s Disease until the morning I began drug therapy to treat it, so I don’t mind when people ask me what it’s like or what it is. The issue becomes when I have their full attention and I see the light go out of their eyes because I’m not delivering the goods. A Grave’s overview doesn’t exactly bring the heat.

“Well, one night last year, as summer was really getting going, I had trouble falling asleep,” I’ll begin. “And then, I noticed an odd tremor in my right shoulder, followed by increased headaches.”

By the time I launch into when the anxiety was full-blown and I was sweating all the time, the crowd has mysteriously dispersed to the bar for another round. Or to check their phone. Or to wait what were you saying again?

So, Grave’s Disease is an autoimmune disease that affects the thyroid and causes it to over-produce. When the thyroid is in overdrive, the body goes berserk – it causes your heart to beat too fast, your thoughts to race. It causes insomnia, sweating and tremors, your eyes to bulge out. Before I knew I had the disease, I actually thought I was going insane. At first, the symptoms are easy to rationalize away – Oh, I live in New York, of course I can’t sleep and am anxious. Oh, it’s summertime, no wonder I’m having hot flashes…at age 30. Eventually, the symptoms culminate in such irrational thoughts and behaviors, you wind up at the doctor or in the emergency room. That was my experience. I’ve talked to a number of wide-eyed folks who share the same. (Yes we know, our eyes are huge).

What There Is:

Dizziness, fogginess, anxiousness

Wondering if it counts as illness when you feel OK. Wondering if this is the best it will ever be when you don’t

Occasionally wearing sunglasses at night to use the computer

Frequent eye drops. More ibuprofen. Less booze. Sweating with caffeine

Knowing the location of every public restroom near the 4/5 train stops on your commute to work

Waiting for Missy Elliot to agree to a Walk for the Cure, for godssake

Occasional growth of things where they don’t belong, like nodules. Occasional loss of things where you’d prefer they stay, like hair

An entry point of conversation with Sia

What There Isn’t:

Bleeding, dying, smoking

General clinging to life

Things falling out, or off

Consistent information on what not to eat (or wear, for that matter)

A cure

Better answers

Certainty

At present, I don’t look sick. Today, thankfully, I do not feel sick. When I explain that I am being treated, there is the collective and conclusive urge to wrap it all up, to proclaim “You’re well at last!” And for me to say “Yes, it’s OK!” so we can end our conversation and move on.  To discuss an ongoing and incurable disease is to agree to a narrative without climax. My particular illness moves in fits and starts. One morning early last winter I woke up with an odd feeling in my head, and blacked out mid hallway shuffle to the bathroom. Other days I shell out exorbitant amounts of money for New York spinning class and feel like a tigress.

This is what it’s like.

There Is No Safe Housing

It happened when I hung up the phone with the insurance company. My ear was warm and sore from holding the phone too close while the voice on the other end droned on about claims I needed to process. The call ended and in the silence I saw the piles of wet clothes and the soggy plaster bits from the ceiling were still there, and something inside cracked. My face contorted and I cried into my blanket. There is no bigger, better purpose to any of this. I was alone, and it was wet. A flip neighbor went out the previous night, New York’s coldest night in 20 years, and left her window open. A pipe froze, burst and drained into my apartment walls.  If the neighbor was home now, she’d hear the drooling, empty howl coming up through her floor.

After several minutes, I stood up to get a tissue and kicked the giant trashcan in front of my bed. It barely moved. It was full of dirty ceiling water, some of which feebly sloshed over the sides when I kicked it again. Suddenly I wanted WRECKAGE. I wanted to hurl that stupid, rubber immovable bin out the window and chuck the pieces of window glass across the room. The pitiful stack of damp sweaters were not enough. I would shred them and throw them into the garbage before I would wear any of them again. I wanted visceral damage. I wanted my apartment to bleed. I wanted to call that dry, even-voiced insurance adjuster back up and tell him there was internal studio hemorrhaging and no amount of placid pressure could stop it.

I blew my nose and had to lay back against my damp pillow. The thumping in my ears subsided and mid afternoon shadows came in through the window, the room darker and quieter now without electricity. Three low hoots from an invisible owl came in too. Every couple of minutes, a piece of ceiling plopped when it hit the floor. It was my 31st birthday.

In the last 8 months, I’ve noticed that on a given day, I can walk down the sidewalk and smile at strangers who smile back. There are chirps and honks and evidence of the city’s changing seasons. On the inside I wonder if I would feel ashamed to walk down the sidewalk with great, bulging eyes. I think about what it’d be like to wear my thyroid on the outside of my neck, dangling in a little plastic bag at the base of my throat, like a necklace. I could point to it when people asked how I was. “My thyroid overacts,” I’d say with a knowing look. “Sometimes I take it out and cool it off so the rest of me can take a breather. Look here.” It is on the sidewalk sometimes, on a perfectly reasonable afternoon, that the desire to explain what is happening overwhelms me.

The morning my ceiling collapsed, my last as a 30-year-old, I awoke with a headache. Light greeted me through the window. It was snowing. My room was silent.

“Look,” I said to myself. “Can we just go easy, today? I know you want to go all existential today because of your birthday tomorrow, but what if…what if we just take it easy? Let’s just take a break and let it be quiet, let us move across floors and rooms with ease today and stop wondering what it all means.”

I sighed and rolled over. Something behind me began to hiss.

Who is taking a shower in my closet?

I turned my head around and squinted one eye, to hear properly. “Someone must be washing the roof.” The sound of liquid rushed against the windows, at first like it was raining, and then like the roof drain had been overturned. My ceiling light flickered. I got out of bed and pulled back the curtain.  Black water pooled onto the ledge. My feet were wet.

“What?”

On the other side of the room the closet door opened on its own. A single stream of water spat from top to bottom – an invisible cherub statued atop my pile of sweaters, pissing directly onto the floor. Behind me, the ceiling light coughed, almost politely, before it too began spitting up water. A warning belch. I leapt across the room and hit the lights.

Pop goes the weasel

Pop goes the weasel

 

 

 

 

 

 

 

I moved quietly through the rest of the day, collecting wet belongings from the floor, pushing furniture into dry corners and emptying pots and bowls when they were full, so they could start again.  It was the next day I cried, when I returned to an apartment that reeked of mildew and saw what had once been my stuff for what it now was – piles of wet shit.

A week later, I was back in the building and in a new apartment. Each night after work, I stopped by old Apartment 3 to see if the door was locked. It never was. The ceiling was gutted, and its insides were still on the floor. It looked smaller, and smelled like a locker room. I’d walk in and set my purse down on the floor. One night, I tiptoed into the middle of what was my living room and sat down. Something began to ache. This just wasn’t my home anymore.

My friend Sam saw the connection before I did. In a letter she wrote, “I suspect that the missing link here, what has not made it onto paper, is that just as your apartment, your housing, let you down, so too did your fleshly housing become unreliable. Caira. There is no safe housing.”

Oh.

The good news is, I don’t smell like mold.