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.

 

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.

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!