What Doesn’t Kill You Gives You Autoimmune Disease
In early October, I started feeling really tired. Not just tired as a mom of two neuro-spicy daughters, but really, really tired.
It didn’t make sense. I was in good health. I had just joined my local ballet company and was dancing 10-15 hours a week. I didn’t drink much-just an occasional celebratory glass of prosecco here and there or maybe a cocktail with friends once a month. I was getting plenty of sleep. I eat really well. I was settling into my new life with my amazing new husband. Why on earth was I so tired?
“You’re doing too much.” “Maybe you should hire a virtual assistant.” “You have too much on your plate.” No! Everything I had been working on in the last 20 years (or longer) was finally coming to fruition. My business was great. I just landed my dream role in our ballet school’s version of The Nutcracker alongside my daughters. I wasn’t overwhelmed. I was truly living my best life.
My doctor emailed, “It’s time for your annual labs.” Sweet. Maybe I’ll get some answers.
Side note: I have a direct primary care physician aka concierge primary physician. If you don’t know what this is, it’s worth researching-especially if you are a woman living in the United States who has been constantly dismissed because of period pain, bullshit prenatal and postnatal care….
Two days later: “Your liver enzymes are really high. Cut all alcohol and high fructose corn syrup. We will retest in two weeks. Have you been sick? Have you been taking supplements? A lot of Tylenol?” No! I’ve just been tired. I don’t even drink(much).
Fast forward to Thanksgiving. We had just had our first performance for The Nutcracker, and my kids, husband, and I headed straight to the beach for our annual family gathering. I slept the entire drive. “It was just the show. It took a lot out of me. Everything is fine. I’m healthy. I’m strong.”
I fell asleep after Thanksgiving dinner at around 6pm. I didn’t wake (other than to use the bathroom and eat) until Saturday when it was time to leave. While packing up, I thought I was running a fever. I was so hot. My torso broke out in a mysterious rash. My skin felt like it was being eaten on the inside by ants. I took a benadryl and slept the entire drive home.
Something was definitely wrong. My next set of blood tests showed my liver enzymes were in the danger zone. The bloodwork also showed tumor markers. Cancer? WTF?
My doctor immediately referred me to a liver specialist. An MRI was done. No signs of cancer. Whew. But what was it? Lupus? No. Celiacs. No. It’s looking like an autoimmune disease, but what? Everything was being ruled out.
I went to the liver specialist to talk about my diagnosis. “People with autoimmune hepatitis live a relatively normal life,” she began. “So we are going to start you on prednisone to get you into remission, and then you will be on immunosuppressants, likely the rest of your…”
Wait what?! Did you just say I have hepatitis? We ruled out hepatitis! There was no sign of A, B, C….LMONP (I make jokes when I’m afraid. It’s a fun coping mechanism I’ve developed over a life with chronic stress).
Not hepatitis. Autoimmune hepatitis.
Neat. How’s that different?
It’s not from a virus. We actually have no idea how people develop autoimmune hepatitis, but it’s likely from environmental causes.
WTF does that mean?
Stress? Maybe another virus? We really don’t know. It’s pretty rare-it’s mostly in women (probably why it’s relatively unstudied). Hepatitis, in this sense, means inflammation of the liver.
What’s happening? Why am I sick?
Your body is essentially rejecting your own liver. Your liver is still healthy, but if we don’t treat it, you will develop scarring/cirrhosis and you’ll need a transplant.
So, we can cure it?
No. You’ll be on a lot of steroids for a long period until we get your levels normalized. Then you will be on immunosuppressants-the same drug they give transplant patients- so your body does not continue to attack your liver. You’ll be managing this the rest of your life.
The most important thing is that you don’t stress. Stress can cause flare-ups and then we have to start the whole process over again.
Did she tell me not to stress? Is she fucking kidding me? Does she see what’s happening in the world? I have two little girls and a teenage stepson. I have a husband that’s an airline captain in a climate where the FAA is being dismantled and there are sudden plane crashes everywhere.
Don’t stress? I hate her.
My husband was with me for this appointment. I kept looking at him for a reaction. He’s so hard to read. Did he think I’m gross? Ew, am I gross? What’s going to happen with us? He caught my eye. There was a twinkle and a tear. Relief and fear.
We’re going to Disney World.
WHAT?!
Yup. I’m making use of this time while I have energy (not because I’m getting better, but because of the stupid amount of steroids I’m on that makes me feel like a superhero).
Ok, yeah. Let’s go to Disney.
So. What’s the deal with all of these autoimmune diseases? In my circle of very close friends, more than half of us have some sort of autoimmune disease. I have friends with Celiac, Vitiligo, Hashimoto’s… why is it so prevalent? Is it just us?
It’s not. It’s not and that’s the scary thing. Mayo Clinic states that around 15 million people in the US have one or more of 105 autoimmune diseases. Most are women. WHY?
I won’t pretend to be any sort of expert in this, but I do think it curious that the Global Autoimmune Institute states that the prevalence of autoimmune disease is much higher in developed nations than in cultures where there is less stress (in keeping up with the Joneses) and less environmental factors (toxins in our foods). Of course, there are more diagnostics in developed nations, so who knows?
So what now? I started my treatment-maxing out doses of prednisone. I feel better. I feel like I should do CrossFit or something and get really really strong, but instead I’m putting all of my focus into my business, my kids, and having fun.I put a sticker of a sloth in lotus on the back of my car that says “Let That Shit Go”. I head to Mayo in June to meet with a doctor that specializes in liver transplants. I don’t need a transplant, but my body thinks this liver isn’t mine, so…I guess that’s why.
In the meantime, I’m going to focus on my business, SAM+PR, helping small businesses with their marketing, and write this blog where I bitch about societal norms, share my meal-planning techniques, and try to connect with other pissed-off moms. I have a life coach, Amy, that’s helping me manage all these feelings. I have also discovered the wonderful world of dropshipping, so now I have my own line of passive-aggressive neuro-spicy autoimmune apparel.
So stick with me as I navigate this new normal AGAIN, find the fun in life, raise awareness of autoimmunity in women, and maybe monetize it with t-shirts and autoimmune cocoon hoodies.
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