How to be a tourist: Copenhagen edition

  • Wear good shoes.
  • Bring a second pair of shoes.
  • Invest in Compeed blister patches.
  • Look out for cyclists.
  • Apologize all the time when you can’t hear someone so they think you’re apologizing because you don’t understand their accent.
  • No, really, look out for cyclists.
  • Say “hi” with an I sound instead of “hi” with an E sound so it sounds like you’re saying “shark” instead of “hello.”
  • Spend half your day at Tivoli.
  • Photograph your food… The locals will give you really strange looks and it’ll brighten your day.
  • Sweat.
  • Smell terrible. Re: sweat.
  • Wear whatever you want. People like to tell you not to wear shirts with logos or designs on them in Europe. “Europeans never wear that stuff,” they exclaim, ripping your “Boston” t-shirt from you and shredding it with their bare hands. It’s not true. I haven’t seen a shred of neon (thank God), but I have seen t-shirts of all variety. I’ve seen girls in dresses, girls in yoga pants, girls with screen printed shirts, girls with makeup, girls without, girls of all varieties! I’ve mostly just seen men wearing really tight pants, so I can’t comment much on the men’s fashion. But girls: wear whatever the hell you want.
  • Wait in a bunch of lines you don’t have to.
  • Get lost on your way home when you can’t access free wifi to figure out where you’re going.
  • Sit somewhere and just people watch. It’s worth it.
  • Drink all the lattes.
  • Attempt to say city and landmark names and get laughed at. Eventually start saying, “if I try and pronounce it, you’ll laugh at me. Where’s Hamlet’s castle?!”
  • No, I’m serious. Look out for cyclists.

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My bag holds a lot of stuff.

I smell bad and no one wants to sit with me on the train to Helsingør.

Train graffiti.

Stretch Marks & Self Love

On Sunday, I will take my last dose of prednisone.

Let me just say that again.

On Sunday, a month shy of two years from when I started taking it, I will take my last dose of the steroid that has been equal parts miracle and disaster.

Over the last two years, I’ve suffered almost all of the possible temporary side effects — the mood swings, the weight gain, the acne, the “moon face,” the hunger, the joint pain, the exhaustion, the insomnia, the unexplained crying. I’ve lost my temper, been hurt suddenly with no reason, couldn’t get out of bed because my body didn’t feel like my own, and had to apologize for crying because sometimes it was the only thing that made sense. Those are things I can say sorry for. Those are things that happened and I don’t have to see again.

But there are other things that I can’t apologize for.

Even if I have no pictures of my puffy face or 50 pound weight gain, even if I want to forget I was ever on this drug, my body won’t let me forget. There are ugly red marks across my stomach, which at first I joked made it look like I’d been attacked by a bear. These are worse than your standard stretch marks… These are large, ugly, bright red marks that look like someone tried to claw their way into my body. And they don’t fade easily, not even after you’ve dropped 25 pounds.

For women who have had children, stretch marks might be a reminder that, for awhile, your body was not your own.

For me, my steroid related stretch marks are a reminder that I had no control over my body for two years.

I can’t apologize to myself every time I take my shirt off. It doesn’t make sense to say sorry to anyone else for being sick without cause, being on drugs to make me better, to whimper an apology because my body is a little damaged. It’s not the ideal, sure. But what body is?

In 2014, my therapist told me to stop trying to control everything and accept that I can’t change everything right now. To cope, I had to focus on what little things I could change — cleaning my apartment, spending time with people I love, going on walks when my body felt up to it — and just let the getting better happen, even if it meant that my body would change. In essence, Stephanie, go through puberty again. Once you’re on the other side, you’ll know more about the body you’re left with.

So here I am.

And here is this body.

It has ugly marks on it.

So what?

If I make a list of “The Worst Things Steroids Did To Me,” it looks like this:

  1. Stretch marks
  2. Joint pain, especially in my knees
  3. I keep having to reintroduce myself with “No, we met last year, my face just looked really puffy…”

I’ll take those problems over a stroke.

(If you could all say a silent prayer that I never end up on steroids again, that would be fantastic)

I didn’t reach this place of acceptance on my own. I had to read a lot of blogs, listen to some books, and exercise a lot of self love. I feel a lot of pressure to lose weight, to get back to who I was (which wasn’t all that small to begin with), but it’s all pressure I’m putting on myself. No one else cares if I lose another 25 pounds. No one else cares if I fit in a size X pants.

No one cares.

And if they do care, that says more about them.

Aside from my carotid artery problem, I’m alarmingly healthy. I have good blood pressure, cholesterol, blood sugar. You name it and it’s okay. (Apparently my iron could be higher, but I think that’s why I started eating hamburger.)

So why not accept my body as it is? Why not wake up loving myself and enjoying the fact that I’m actually alive to see today? Why not enjoy the fact that my face looks like my face again? Why not enjoy a selfie every once in awhile? Why. The. Fuck. Not?

Why not love myself?

[If you can answer that for me, I’ll pretend to hear you out, but really I’ll be giving 0 fucks about your opinion]

Steroid Withdrawal & Emotional Fallout

Some time over the last two years, I’ve started to feel like a different person.

In June of 2014, I started my steroid therapy for TAK. I started at 50mg a day, which is an incredibly high dose. I was on it for months before I started to taper off… And I stalled at 35mg for four of five months. In February 2014, I started tapering again, and it’s taken me over a year of messing with my immunosuppressants to find something that effectively manages my symptoms to replace the steroids.

I’m currently on 3mg of Prednisone, tapering my way to 0mg…

And I’m terrified.

Over the last year and a half, I’ve become a different person. While it’s true that most of my more irritating personality traits have remained intact — my brain never stops, I manage to be the most insensitive when I’m trying to be cautious, I’m judgmental and rude — the emotional part of me is entirely different. I’m cautious. I’m sensitive. I cry more, hurt more, and generally give a shit, well, … more. I feel more than I ever used to.

These are, I admit, mostly good changes. I’m no longer the biggest jerk on the planet when it comes to other people’s needs. I’ve done a pretty good job hiding this from the rest of the world — I still act cold and indifferent to even the most depressing parts of my life. I’m very good at “moving on” quickly, but the process of “getting over” is hard and dark.

Tapering off of steroids has a lot of withdrawal side effects. Some good, like weight loss… But mostly bad, like abdominal pain, low blood pressure, nausea, and mental changes.

Lately I’ve been overwhelmed by an endless string of thoughts.

What happens when I’m done taking these medications? Am I actually better? Will this happen again, and I’ll be on steroids again, and it’s a never ending cycle of fat face and fat body and pimples and an upset stomach no matter what I eat? Am I going to turn into yet another person? Will I go back to being who I was before, because she was kind of a jerk…

I’ve always been really good at catastrophizing, but I’ve only gotten worse in the last two years. It’s times like these that I have to separate from my surroundings. Being on the road helps sometimes, getting out and moving, listening to Rachel Dratch’s “Girl Walks Into a Bar” on audiobook… Heading somewhere and just participating in life outside of myself really helps.

And so I go to the beach.

And so I take photos.

And so I write.

Mostly I spend time with people who I love.

I love more.

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I still have a liver! Hurrah!

IMG_6419I wrote that title last week. I may have killed my liver this weekend. Jury’s still out.

As we’ve covered before, I’m not really supposed to be drinking. I still do sometimes (see above). I try to abide by the rules set by my doctor — no more than two drinks every couple of weeks. But, as you can probably already tell, that’s a really easy rule to break.

When I found out I couldn’t drink, I was actually pretty upset. I love beer. Like, love love love beer. I had just moved to New Hampshire, one of the best beer states, after enduring Oklahoma, one of the worst beer states (access to Santa Fe, Tallgrass, and Prairie excepted). And here I was, taking medication that doesn’t interact well with your liver, and denied something that I love.

So it goes.

Before I started taking my immunosuppressants, I had a few weeks of going nuts. I got in all the drinking I was sure I’d miss. Quitting drinking, in all honesty, wasn’t that difficult for me. I’d had quite a few bad nights of drinking too much while taking prednisone, blacking out, and playing Sober Detective trying to figure out what Drunk Bad Guy Stephanie had done. It was… not pretty. I’ve apologized to a lot of people for my behavior of 2014, and I’ll throw in another one here. It was a bad year and I did some dumb things. I’m very sorry.

So it goes.

But here we are. A year later. I still drink occasionally, have had a few bad nights, but for the most part I just abstain. It’s good for me. I feel a lot better. Not drinking is definitely nicer on my wallet… and waistline. But I still do it.

I have regular screenings of my liver and kidney function. My last tests? Perfectly fine. I was half expecting to find out that I had ruined my insides, or I was literally pickled from top to toe. But I’m not. I’m fine.

So I still have a liver! Hurrah!

How? IMG_6181

As it turns out, and this should surprise no one, diet can do a lot for your liver. People with liver disease are often encouraged to eat a really well balanced diet high in carbs and fiber (so says Google and my doctor). What do you think I eat?!

Being a vegetarian (okay, fine, sometimes pescatarian) continues to be a good choice. Stop mocking me for it, pals.

Basically I’m just going to take this as a sign that I’m doing something right with my life. I’ve made good choices, albeit gassy ones. I’m sure my doctor would just tell me to stop drinking because it’s a gamble I shouldn’t be taking. Which is something I should really try now that I’m not surrounded by people who drink all the time… Sober living was weird, but amazing, and I should really give it a chance again.

I know this post isn’t as information filled as my usual updates, but it’s an important one. I mean, read about dying of liver failure sometime and you’ll see why I’m thrilled that I still have a liver. On second thought, just listen to this. You’ll never take Tylenol again.

Oh, and here’s a gif of my cat doing cat things. Cats always make everything better and less boring.

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2015 in Hindsight

I was going to write a post about my entire year, including the highlights and the low points and then the very, very low points, but I’ve decided not to. I’m just going to show you this visualization of all the flights I’ve been on and curl up in a ball and weep*. This doesn’t even count my train, car, or bus miles…

To put this into context, the circumference of the earth is 24,902 miles.

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*I mean be excited for 2016. Totally. I’m not exhausted at all.