autoimmune disease

On Motherhood, Kind Of

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Like all useful information, I found it on the Internet.

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“Well, look at that,” I thought. I can’t be pregnant on these drugs I’ve just swallowed without reading the warning label, and I may not be able to get pregnant with the disease I’ve just been told I have.

This was not discussed during the diagnosis. My doctor, a kindly chap with hearing aids and patience for the times I’ve since asked about the weight I’ll lose or gain when he *adjusts my dosage, needed barely 20 minutes to declare Grave’s Disease. “The staring quality of your eyes – I noticed it as soon as you stood up in the lobby.” I was wired that first day. I was damp, I was uncomfortable and I was shaking my foot the entire physical exam.  “I just need to know what’s wrong so I can go back to work,” I explained in the little room they take you in to ask boring questions. I jiggled my knee in rhythm with my pulse. He shuffled around the room doing bizarre little things -measuring protrusion of orbital structures, stenciling goiter onto paper.

You mean this staring quality?

**Disclaimer #1** I have gained exactly 1lb since beginning drug therapy for Grave’s Disease.

I hadn’t been able to sit at my desk, but I figured as soon as I knew what was wrong, I’d be able to go in and sit down, finally. Like a normal person. I am so over this sweaty bullshit, I thought, flipping hair off my face.

It was mid-August, the sun as unforgiving as the thumping in my chest.

**Trouble conceiving was not mentioned during the diagnosis. And why would it be? I’m single. I say “omg” in texts. The idea of coming home at the end of the workday and something requiring more attention than what I give to the coffee grounds I spilled on my way out that morning is unimaginable. No one said that if I wanted to get pregnant over the next year, the drugs I’d put into my body occasionally cause fetuses to develop without nipples. No one said anything about the miscarriage rate in Grave’s women post medication. No one suggested I reconsider family planning, period.

**Disclaimer # 2** I am not trying to get pregnant right now.

But. Oh yes, and with this shit, you can say you won’t go there, but yes you will – What. If. What if I were ready? What if I weren’t single, and didn’t live in New York and had more than $14 dollars in my “savings” account? What if I didn’t want to dedicate my life exclusively to the pursuit of my career goals?

Guess which of the above is not like the other.

I lived in Chile for a good while, and used to look up places I wanted to live and jobs I could do – separate from the job I had and place was living. Sometime in between that second and third year in Santiago, a coworker and I were chatting about the occasional strangeness of our lives, and that from time to time we forgot we were the ones who’d chosen to live them this way.

He said, ” I want to escape a lot and run away, but then I remember I already am away.” The look on his face when he said it – there we were, longing for anything else right smack in the middle of what we used to look for.

I don’t want to spend the rest of my life hot after my own agenda.  I’m lucky to have a job I like to do, in a city I want to do it. I’m glad it came after years of restlessness and navel-gazing 20s wallowing and wandering. I’m thrilled I indulged a bunch of peculiar, reckless (sorry, Mom) curious ideas when I could afford the luxury. It’s not that I’ve lost the urge to travel or try new things, it’s that I’ve given up on the idea that a particular adventure will make sense of who I am. I’ve been here the entire time.

I used to think that if I made it into a relationship, it said something positive about me – that I’d overcome pre-existing deficiencies in character, childhood. It used to be why I feared but also clung to the idea of a partnership, of motherhood – the inevitability of being tied to something you couldn’t control, but that it was somehow right or better to be part of someone else’s story. See above re: 20s wallowing.

Fortunately, I let that nonsense go.

For my what ifs, I presently have 0/100th of the answers, which suits fine in Month 3 of medication.

But I sure can and will stare at you.

From California, With Love

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I’ve said from the beginning – or August – that Grave’s includes a few perks, one being its perfunctory litmus test of human character. When I told a gentleman caller I’d been diagnosed and he opted for “Sorry you’re not feeling well” before reverting communication back to the (questionable) stress of his job, I could almost see my text screen turning blue. Grave’s Disease. Not A Cold.

Because I choose to live in New York, where things like sublets and leases and extortion get in the way of living in the same place for extended periods of time, I moved out of my apartment at the end of August.

It wasn’t a tragedy. My room didn’t have windows or a closet, and ventilation was tentative at best. With Grave’s my new body temperature was scorching, at least. I didn’t have the energy to deal with procuring a new residence but I did have relatives willing to take me in for a month while I did my best to kind of feel better and feebly make my way through Craigslist. I saw one, two, then seven apartments on a scale of Meh to Terrifying.  I almost put down a deposit on one closer to the Meh side of things but something weird, gut-level stopped me. It was Thursday afternoon, fall light setting in – I walked along the Brooklyn sidewalks, past rows of houses that reminded me of the Midwestern suburb where I was born. Am I supposed to be here, I asked, to no one.

The next morning, a Friday, my boss called me in for a meeting. “We need to see you’re willing to make performance improvements.” Or Else.

Seriously, am I supposed to be here?

I was now dangerously close to not having a job, a place to live, but one hell of an insurance-dependent, hormone excessive medical condition. Oh, no. And try as I might the monologue from Dumb & Dumber refused to stop popping up.

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I cried. I considered quitting, everything. Maybe it’s time to move, anywhere. I didn’t move. Or quit. But I did rant about moving and quitting.

Then a piece of mail showed up.

It came from my friend Sam, who’s prone to showing up and reminding me of what it’s time to do (write) when I’m too busy lamenting the fact that I don’t do it enough.

Her words:

“A very big change has happened in your life, and I commend you for trying to take it in stride the best you can, for using even illness as a way to move toward a future Caira you desire. But though it is brave of you to pick up and begin again – to try to see things as “adventures” to the extent that you can – I hope you know that you don’t need to do that unless you want to. One thing I notice in your writing, often, is your desire to explain what something meant, why it had to happen that way, what it taught you. That’s all well and good, but not everything teaches you anything. Sometimes, things are just hard. And if you triumph, despite things being hard – which I know you will – it’s not because you needed things to be hard in order to triumph. It’s because you would have triumphed anyway. And it’s OK to admit a wish that things could have been less hard.”

Spoiler alert – I cried again.

It’s true that another perk of illness brings out the best, in your friends, in your relationships. There’s something about really needing something – and by something I mean help – advice or input or a couch to sleep in or the name of a doctor, that forces you to just stop amidst all the bullshit and say thank you.  Because when you’re crazy and Gravesy and don’t have a place to sleep and you might lose your job, you’ll know who you can call, just as you are. It’s humbling and uncomfortable but it puts it in perspective.

But Sam has a point. And what she said to me, so beautifully, is what I’d wanted to say to myself, and hadn’t. It is hard. Sometimes the silver lining of seeing bad dates and good friends for who they are dims behind the mundane reality of muscle atrophy and mood swings. Sometimes I don’t feel like making sense of it.

Sometimes a friend shows up and I don’t have to.

The Good News Is, There’s Something Wrong

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At first I thought I was crazy. The feeling crept in, tiptoed for a bit and started hammering the walls. I didn’t know what to do. It was small things. I’d be awake at night, on my back and aware of my heart beat. “I can’t sleep, that’s why I feel terrible.” The next day wired, eyelids twitching, alert and unpresent. At 20 I’d been diagnosed with Obsessive Compulsive Disorder. I figured I was just having a bad spell with it – it came and went as an adult, anyway. Work is stressful. I live in New York. It will calm down, eventually. In the meantime I paced the confines of my apartment – from bed to bathroom to bed to check the freezer to bathroom to bed to kick the sheets in frustration. I was hot. I have to pee. There’s never enough water in my glass. The anger festered.

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I stopped calling my mom after work. I looked down at the floor to text. But I stare at a screen all day so no wonder my eyes hurt. I’ll use homeopathic drops and take ibuprofen. Tomorrow will be better, I just need to exercise and get some rest. As soon as my headache is gone. The headache. It greeted me with the day, not quite in the middle of my head, but deep, in the low center. I started to twitch. First a small pulse in my right rotator cuff, then a jerk, from my elbow. When I did talk to my mom it would be to tell her that I hated everyone. I still have to pee. My neck went out. Do I have laryngitis?

On a Wednesday afternoon I walked out of work and into an urgent care. If they can’t fix it, I can’t make it. The next day I saw a Russian Primary Care Physician who ordered bloodwork and watched me cry. He wanted me to pick up my records from another hospital. “Fuck you I can’t walk around.” He handed me the card of an endocrinologist and I didn’t apologize. It was the first weekend since my mid 20s I wanted to drink on both weekend nights. The whiskey cooled off my central nervous system. It did not help me sleep. By Monday afternoon, I had an 82 year-old doctor, two pill bottles of drugs to be taken in timed increments and something resembling a sense of relief. I have Grave’s Disease.

Maybe I can make it funnier than it sounds.

Nobody Puts Baby in a Coffin

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“What is this?” you may be asking (Hi Mom!). Well, here’s the thing. A recent Grave’s Disease diagnosis and an older, suffers-no-fools endocrinologist left me combing the Internet for nutrition tips, for articles, for something that explained how it would be OK – I kept redirecting to the same sites with Very Uninspiring Names and conflicting advice on whether you can eat soy. Woof. In my opinion, (and this blog will have a lot of those), there’s not much out there, digitally speaking, that’s funny, wry or interesting for young people dealing with autoimmune illness. There are however, a wealth of chat room evangelists waiting to terrify you.

Grave’s disease, like the bulk of its enigmatic cousins, won’t kill you. But it will increase the risk of coworker heartbreak, when you can no longer pretend to not smoke with them, or order a round of tequila shots for yourself at the company happy hour.

It also means that when you tell a friend your hair might  fall out, you’ll receive styling tips like this.

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Seeing as I won’t be doing any smoking, drinking, carousing, caffeine-ing or iodized salting for the foreseeable future, I’m going to have some time on my hands – to write, to research, and to collect interesting stories on what this illness is and is not. I wanted to create something that I’d want to read, going through this, and my hope is that I’ll create something you’ll want to read too.

I already know the disease sucks. I didn’t need the Internet to remind me. What I did need was something a little more inspiring, a little lighter – Because if I’m going to be sweating and shaking and not getting to eat seaweed, then I at least need to be able to laugh at myself.

Because it can be kind of funny. At least, there was a moment where I realized, this isn’t the worst, and if I’m thoughtful and careful about it, there’s more than one thing I could actually learn here.

So, that’s what this is.

Thanks to Sophie Kleeman for headline inspiration on this post.