FAQ: The Steroids of It All

You were on steroids? 

I was – from July 2014 until May 2016. I started on 50mg, stayed there for 6 months, and then started tapering off of them. You can’t just quit steroids. You have to slowly go off of them, which can be worse than being on them in the first place. I would hit places in the tapering process and I would have to stop there for a few weeks or months. I was on 35mg for about four months. It was a very long and traumatic process.

Are you, like, super jacked? 

A lot of people assume that being on steroids means you’ll automatically gain muscle mass. I was on a corticosteroid, which is different from the steroids we think of when we hear “steroids” and automatically start thinking about Major League Baseball players. Those are anabolic steroids. Here’s a fun WebMD resource on the difference, which includes information on the side effects.

Side effects? Like being super jacked? 

No. Like weight gain, a higher risk of diabetes, osteoporosis, viscous red stretch marks (Seriously, it looks like you’ve been mauled by a bear), acne, increased risk of infection, increased eye pressure, high blood pressure, mood swings, bruising easily, exhaustion, muscle weakness. More info here.

And I basically had IBS for about a year.

That sounds… fun? 

No. No, it wasn’t. Weight gain, acne and, mood swings are the most common side effects. A good way to tell if someone is on steroids is if they have something adorably called “Moon Face.”

Here’s a few visual aids.

Here’s my face in June and July 2014:

Here’s my face in August and September of 2014:

It doesn’t look… That different, I guess? 

You know, a lot of people said that to me when I was on the steroids, which I guess was people trying to be kind. But I had fatty deposits and water retention not just in my face, it was in my shoulders, chest, and stomach. I got bigger all over, but I could especially see it in my face.

If people weren’t trying to be kind, then I guess I didn’t realize I looked like post-Blueberrying Violet Beauregarde for my entire adult life.


Why didn’t you just diet? Or workout? 

Because steroids don’t work like that. It doesn’t matter what you eat, or what you do, that weight will be there. All told, I gained 50 pounds while I was on steroids. As soon as I stopped taking them, 35 pounds disappeared in about two months, and I didn’t change my diet. If anything I was eating a lot worse than when I was on the steroids. It got to the point in 2015 where all I could stomach was brown rice, broccoli, and eggs.

May 2016: Still some chubby cheekies.

June 2016: Slimming down

August 2016: I have my face back (and a cat?).

Oh… Well, maybe it was just that terrible haircut. 

Um… Thank you?

But you’re like, all better now, right? No more steroids? 

Maybe. I’m on an immunosppressant that makes it easier for me to live a normal life. I get overheated easily, I still bruise easily, I have to have a bone density test to make sure the steroids didn’t result in osteoporosis.

I recently had a doctor’s appointment because my neck was hurting again. As soon as he said “steroids,” I started to panic. I could feel the absolute dread rising from my stomach into my throat. I told him I didn’t ever want to be on steroids again. I’ll do anything to avoid it.

I’ve joked that I’d rather kill myself than go back on steroids.

And… I’m not always sure it’s a joke.

Steroids wrecked my mind, my body, and I’m still having side effects. I broke my foot recently and the podiatrist firmly believes that the steroids were the root cause.

What’s your favorite food? 

Literally all food.

Except pork. Or octopus. Or duck. Or.. Okay, well, maybe not literally all food.

 

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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An Update, re: The Health Stuff

In October, I posted about my weird and complicated health stuff. You’re welcome to revisit that for the full story. As this year comes to a close, I just wanted to share an update. I do this for two reasons, 1) it kills time, and b. it makes for an easy resource for when people have questions.

So you’re still dying?

As fast as you are, buddy! Or maybe faster? Or slower? Aren’t we all?

Are you still stuck in bed?

No! And it’s amazing! I switched drugs a few months ago. This new medication terrified me at first. I spent a good few hours being really anxious about starting them because it stays in your system a lot longer than my original meds; however, I’m responding much, much better. I can, like, stay up past 10pm on Saturdays now… and I can get out of bed when I want to! Granted, I don’t want to very often because bed is where all the cuddling happens, but I can do it!

I’m also no longer struck by illnesses that leave me down for days. I catch a cold like a normal person, just a little more frequently. Consider me a 5 year old again. And cover your mouth when you sneeze or cough, jerk. Oh, and wash your damn hands!

I still get tired doing regular things, like climbing stairs or going for long walks. My stomach is still a mess, but it’s getting better. Basically things seem to be getting better with this new medication, and I’m glad I switched.

You don’t look so… what’s the word? Oh! Puffy. You don’t look so puffy anymore. 

That’s not a question. Also, thank you? I’m tapering off of the steroids (which is a corticosteroid, not an anabolic steroid. I’m not She Hulk now), and it’s cutting down on some of the less attractive side effects. My face finally looks a little like my actual face. I’ve lost some weight.

Are you still in pain?

A little bit here and there. When I come down with a cold, my artery hurts. Correction: It’s uncomfortable. It doesn’t hurt nearly as much as it did last year. My joints ache sometimes. I’m just basically an 80 year old.

How long are you on your drugs?

At my last appointment, my doctor said I should be on the immunosuppressive treatment for “a couple of years, most likely.” It’s a long time, but at least it’s a light at the end of a stupid tunnel of stupid.

Are you drinking? 

Sometimes. Not often. I’m allowed a couple of drinks a week, but my liver isn’t a fan. It often makes me sick, so I just avoid it.

Who cares? 

You do, idiot.

What else is new?

I hiked up a mountain and didn’t die. That was pretty cool. I did it really slowly and had to stop a lot, but I did it.

What color is your damn hair? It changes like every two months. 

Oh, it’s red. Right now. It’ll probably be that way for awhile. Maybe…

How was the Point Break remake?

So. Fucking. Terrible. Just laughably bad. Not even “so bad it’s good” bad. Just terrible.