Erin Story was exhausted and her hair was falling out. She would break out into a horrible rash when exposed to the sun – even though she wore sunscreen.
A doctor assumed the 36-year-old Missouri woman was a hypochondriac or had some old-school version of female hysteria.
But Story knew her body better. Something was horribly wrong.
Story was tested for systemic lupus erythematosus, an autoimmune inflammatory disease where the body’s immune system attacks its own healthy tissues – but the test came back negative.
At the advice of a physician friend, Story saw another doctor who ran the test again.
That time, it came back positive. Story was referred to a rheumatologist. She was diagnosed with lupus in 2011.
The next few years, Story dealt with the flares of her disease: debilitating fatigue, hair loss, rashes, muscle and joint aches, sun sensitivity and brain fog. She bruised terribly due to low blood platelet levels. She was given Neupogen injections – a medication typically administered to chemotherapy patients – to encourage her bone marrow to produce more white blood cells since her counts were dangerously low. Story also started having complications with her liver and had to have a painful biopsy.
“And my lupus is considered mild,” Story says. “There are many, many people who have much more serious cases requiring kidney transplants and issues with the heart and lungs. I’m very fortunate that so far my major organ systems haven’t been majorly affected.”
The potential side effects of her medications – Plaquenil and Prednisone – were no joke, either. Retinal toxicity is one possibility with Plaquenil. Story started getting eye exams every six months to check her vision.
The side effects of the steroid Prednisone, according to the Johns Hopkins Lupus Center in Baltimore, Maryland, can include acne, changes in face shape, weight gain, facial hair growth and irritability, among others.
In 2012, Story became engaged to her now-husband, Austin.
"He stuck with me through my diagnosis, treatments and lots of tears and worry,” she says. “He’s always been there to hold my hand.”
The couple married in June of 2013. The following year, they decided to start a family. It was a complicated decision, but one Story was determined to see through.
She describes the process.
“You need to be mainly symptom-free, off certain medications and hopefully cleared by your team of doctors to start trying to conceive. I had to wean my body off of Prednisone as your adrenal glands have to start working on their own again. Since I was on it for quite a while I had to taper very slowly and stay healthy in the process. It took months.”
“Finally that summer I was off and cleared by my doctors,” Story adds. “By August I had a VERY positive pregnancy test and we were so excited!”
But there were worries. Pregnant women with lupus are automatically considered high-risk. Pregnancy can trigger severe flair-ups of the disease. Pregnant women with lupus have a higher risk of miscarriage, premature delivery, preeclampsia and heart problems in the baby.
However, Story's checkups were encouraging: the baby was growing and appeared healthy upon initial examinations. During an ultrasound visit, however, the technician gave Story and her husband some unexpected news.
She describes the conversation.
Tech: “So, you’ve had an ultrasound already this pregnancy?”
Story: “Yes, and everything looked great.”
Tech: “So you know there’s two, right?”
Story and Austin: “No!!!”
Tech: “Uhhhmmmm let me go get the doctor!”
“Cue my crying and laughing and Austin squeezing my hand so hard I thought he was going to break it,” Story recalls. “And THAT is how we found out we were having twins!”
Pregnancy can push lupus into a kind of remission, since the disease is affected by hormones, Story says, marveling that she “was the healthiest I had been in years,” she says.
Story gave birth to two boys, Hudson and Henry, on April 21, 2015. Even now, “it almost brings tears to my eyes just thinking about them,” Story says.
Story has had one mild flare-up since she had her sons. She works part-time as a massage therapist, has an Etsy shop and takes advantage of days she feels good.
“Twin life is crazy,” Story says. “I really try my best to stay as healthy as possible. It's a lot harder now. I don't have the time to just focus on myself and my health constantly as I did before. I try to sleep as much as possible, eat healthy, whole foods and exercise as time and fatigue will allow.”
Story also blogs about life with lupus. She hopes that through her writing, she will raise awareness in the hopes that one day researchers will find a cure.
Lupus “is such a mystery and so many people don’t know anything about it, or how it affects so many people.”
Story is an H2W woman – happy, healthy and whole – even on not-so-great days. Writing about her experiences helps, she says.
“Having a chronic disease, after a while you just stop talking about it. You don't tell every time you wake up in pain, you don't tell your story to everyone you meet,” Story says. “I just try to keep a smile on my face and be strong for myself, my friends and family… and especially for the two little men I'm about to pick up from preschool.”
Read and subscribe to Story’s blog at www.defyinglupus.com.
And if you know of an H2W woman we should write about, drop an email to firstname.lastname@example.org.