FAQ: The Health Stuff

Processed with VSCOcam with f2 presetOne of my favorite hashtags to use on Instagram is “never leaving bed,” because that’s often how I feel, like never leaving bed. Or like I’ll never be able to leave bed. I’m sick, and I get sicker with colds often. This has lead to a lot of questions. In the interest of transparency, I suppose it’s time I finally answer some of them.

But you don’t look sick.

Thanks. I appreciate that. But I am. I am a stubborn jerk of a person and I refuse to look or act like things are wrong when they are.

You have what now?

Takayasu’s Arteritis is my official diagnosis. There are a few fun resources to explain it, though it’s still listed as not having a known cause. All of the articles can get a bit science-y though, since it’s not an everyman disease.

I don’t present with normal symptoms for TAK since my inflammation is concentrated in my left carotid and not my heart, liver, or lungs. I’ve been, and fallen asleep, in a few fair MRI machines to know that it’s just the one spot.

You have arthritis? 

No.

I’ve never heard of it. Why? 

Because “Takayasu’s is rare with only about 2 to 3 cases per million people annually.”

How did you know something was wrong?

Neck pain. It’s that simple. My neck and jaw hurt. I thought I had been grinding my teeth in my sleep, or hurt myself at the gym, or done something just to anger my body. I only realized something must be really wrong when I noticed a little bump, which was visible to the naked eye, show up on my neck. I thought maybe something was wrong with my thyroid or lymph nodes, but after getting a CT scan, there was no denying that my left carotid artery was inflamed. Looking at my MRA results is both fun and terrifying. It’s interesting to see just how different one side of your body can be from the other, but it’s also not fun to know that one side of your body looks totally different from the other on the inside.

Note: This is usually when people start feeling their neck in front of me without realizing that they’re doing it. Trust me, you most likely don’t have TAK, and if you do, you don’t know. Most patients are asymptomatic, so don’t go running to your doctor. It’s more likely you’re having a heart attack.

IMG_6940How do you treat it?

There is no known cure for TAK, but there’s a treatment schedule that seems to work. It means you take an insane amount of steroids and immunosuppressants, regular blood tests, and lots of MRIs.

I started out in July 2014 on 50mg of prednisone a day, which is an exceptionally high dose. Within hours, my pain was gone, and I felt euphoric (that’s a side effect of steroids — euphoria.. and then a super fun emotional crash). I had every imaginable common side effect from the steroids — the stomach problems, the weight gain, intense hunger, puffy face, acne, exhaustion, insomnia, joint pain, depression, anger, and mood swings. I’m pretty low on the steroids, 11mg, but still having a fair few of the side effects (I’m sorry for my crabbiness, everyone I love).

This March, I started on my immunosuppressants to try and wean me off steroids as soon as possible. Longterm use of steroids is real, real bad. I’ve had all the common side effects of immunosuppressants — Everything makes me nauseous, and I mean EVERYTHING, I get a cold every month, walking up a flight of stairs makes winded (which it never used to), drying my hair in the morning is exhausting, loss of appetite, and it goes on.

The fun part, for me, is being on one drug that makes me endlessly hungry and another that makes me so nauseous that I can’t even think about food. I’ve countered this by eating like a bird, which means small and frequent meals. I typically eat brown rice, broccoli, and some sort of meat substitute. I’ve gotten to the point where I add in other things without issue, and can stomach beans, rice, and some sort of veggie. A lot of people thought this would lead to rapid weight loss, and I can’t blame them for being hopeful, but the fun part about prednisone is that it loves to keep you fat.

How long do you have to be on the drugs?

As long as it takes, I guess. Maybe 9 months, maybe forever.

IMG_0162If you’re so exhausted, how do you travel all the time?

I make up for it with a lot of sleep. And I mean A LOT. When I hit a wall, I listen to my body and go to bed. I lay down. I don’t move. I take photos of my breakfast in bed and post it on instagram with the hashtag “never leaving bed.” I travel for work and then when I get home I cuddle my cat and watch bad TV.

As with everything in life, it’s about balance.

What else has changed?

I can’t drink alcohol. It’s not that I’m a teetotaler, although I kind of am, but it’s just not advised with my medicine. I didn’t know this last year and it led to some… questionable decisions and embarrassing stories.

I can’t work out, at least not high intensity. This wrecks me. In 2014, I had started going to the gym regularly. I did yoga. I felt better than I had ever felt, except for my neck pain… And then I found out what was wrong and realized that I couldn’t do anything that makes my blood pump too hard or too fast. I’m at an increased risk of stroke and some other fun things, so I have to be careful. Sitting still ruins me. I hate it.

I’m not supposed to eat too many sweets, but if you try and keep me from donuts, I WILL CUT YOU.

What are you doing right now?

Sitting at the airport, feeling like I needed to write this.

Who cares?

Probably no one, but I feel better having somewhere to point people from now on.

What’s your favorite moment from the Nicolas Cage classic Wicker Man?

I’m so glad you asked!

Sad Sack Status, or Demolition Man Saved My Life

The problem with writing about something that’s close to your heart is that it feels like the words are never right. You start to overthink every letter of every word until it seems like there’s no point. There’s never any point, is there?

This is how my brain works all the time. I find a point, I start to think, and then I think it down to “what’s the use?”

Every. Single. Time.

When I was in therapy, my therapist told me that this is a type of catastrophizing that I do to cope with… I don’t really know what. But it’s a problem. (I’m sure you could have guessed by now that I’m also exceptionally good at plain ol’ catastrophizing as well. I can turn the happiest of occasions into a potential inferno of death and destruction. It’s a skill, just… not a good one.)

I’ve learned a lot of coping skills over the years. When I start to feel down, I remove myself from my feelings. If I’m sitting around getting sad, I get up and get moving. I go somewhere. I get a coffee. I call my mother. I listen to happy music and dance around and read books. I keep my brain distracted (1). It’s better for me, and everyone involved, if I dance my way through feelings of negativity when those feelings have no root in reality. If I dwell, if I keep letting myself dig that hole deeper, I’ll be halfway to China in tears before I realize that no, not everyone hates me, and it isn’t worth assuming that my dog also hates me because, well, she’s a dog and, let’s face it, that Muppet loves me. The cat though? That little shit definitely hates me.

But, for all my coping skills, sometimes my brain gets overloaded with negativity. I call this, naturally, Being An Unrelenting Sad Sack. These are the times when hiking, dancing, talking, laughing, and stuffing my face won’t do it. I have a special way of hoping with Sad Sackyness (… I may need a new term) – I bust out my best friend: Demolition Man.

Wait… What the hell, Stephanie? Demolition Man? That Sylvester Stallone movie with Wesley Snipes that everyone vaguely remembers but no one actually liked? You say.

Yes. That one.

Anyone who’s talked to me for longer than five minutes knows my love of Demolition Man. It is listed as my religion on Facebook, and I have no shame in that. There’s a really simple reason why…

Demolition Man Saved My Life [2].

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Last year, I spent a lot of time wallowing in self-pity and depression. A lot of my life had changed, and even though it was slow change, it was still a lot of change to cope with at once. I was so overwhelmed that none of my coping mechanisms worked. On top of all of it, I got diagnosed (sort of) with a super rare, super fun health thing (that I will expand on later) that required me to be on extremely high does steroids for treatment.

I was gaining weight rapidly. I had acne. My face looked like a full moon. I couldn’t regulate my feelings, or even identify them well. I was, without a doubt, in deep, deep Sad Sack Territory. It was on a particularly hard day, a day where I cried until my eyes were dry (literally), and couldn’t call anyone or talk to anyone or hug my dog any tighter to feel better. Thanks to chance, I caught Demolition Man on TV. I think that John Spartan knew I was in the bitter throws of depression and was reaching out to me from 2032. I sat still under my blankets and watched that movie from start to finish. I didn’t laugh, but I snorted, chuckled, and forgot all about whatever was keeping me from seeing the entire world in front of me that, quite frankly, doesn’t suck all the time. I paid attention to a movie that deserves no attention. I turned my brain off. Demolition Man helped me hit the reset button in my brain.

After that solid 115 minutes of mind numbing action, damaged but entertaining plot, and stupid but fun dialogue and jokes, I felt refreshed. I took 115 minutes and turned off my brain. I hit pause, and when I hit play on life again, it didn’t seem so awful.

Over the next few weeks, I watched Demolition Man more than 5 times a week (one day in particular, I watched it 3 times in one day… No shame!). I spent time watching other action and sci-fi movies that I loved and had forgotten – The Fifth Element, and a number of Jason Statham flicks. I committed myself to dumbing myself down, not spending time wallowing in my brain, and feeling a metric fuckton better about everything.

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Did it work? No, not really. Kind of.

Eventually the depression always crept back in. In was a combination of things that helped me recover – the movies, my trip to Ireland and Amsterdam, therapy, a new job, and finally accepting that it was absolutely fine to feel things sometimes because fuck, we’re human beings, and we have feelings… At least until they can make us robots [3].

I wrote this because I don’t know if anyone has ever truly grasped why I like and defend Demolition Man as much as I do. It is, and may always be, the second most important film in my life [4].

Plus… who doesn’t love a blonde Wesley Snipes?

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I wrote this in a rush in the Newark Airport. I’m sure there are typos and the grammar is probably a mess. But I wanted to kick myself back into the habit of using this, and the best way to get in the pool is just to throw yourself in.

Hi again. I’ve missed you.

Notes.

1: I would like to take a moment to point out that I don’t distract myself from valid feelings. It’s taken me a lot of time to come to terms with having feelings (sign me up to be the first person to become a robot, feelings are stupid, etc., etc..), and while I still apologize for them more than I should, I cry them out.

2: This might be a slight exaggeration.

3: Seriously. Make me a robot. I hate feelings. They’re dumb.

4: The first is The Bride of Frankenstein. Thank you Dads & The Kennedy Center for that one.

5: Gifs stolen from wherever. Sorry?