One 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?
I’ve never heard of it. Why?
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.
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.
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.
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!