This Honest Mom Doesn’t Want You to Be Ashamed of Your Rare Disease

Kathryn is a wife and mother of two amazing kids. She lives with undifferentiated idiopathic periodic fever syndrome, cold induced urticaria, and POTS.

Patient Worthy got the privilege of hearing, in her words, how it all started.

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Kathryn and her husband

“I had two very difficult pregnancies; I was on bed-rest with my son but had an easy delivery. About a week after his birth I developed Bell’s palsy. I was nervous about getting pregnant again but I talked to my doctors and prayed and we wanted to expand our family.

It was another difficult pregnancy, as I ended up in the hospital again.

It was an uneventful delivery once more. I [was sent] home less than 24 hours after my daughter’s birth. I was rushed to the hospital four days later with blood clots in my lungs. It was horrible being in the hospital again, away from my baby.”

“After her birth I couldn’t get my health back.”

“We were living in D.C. and it was a nice day in February after a cold snap. It wasn’t quite so cold as it had been, it was in the low 50s. I had a two year old running around, I took her outside and stood with other moms watching our kids.

One of my friends looked at me and said “If I didn’t know better I’d think you have a sunburn!” My face was bright red, I’d only been outside for 10-15 minutes. I was surprised that I felt freezing cold given that it was pretty warm out. We joked that it must be the blood thinners I was on. I went back inside, my face felt like it’d been burned. “

Over the next few months her symptoms got increasingly worse. She experienced them in the air conditioning of the car and the grocery store.

“Each exposure got more serious but we hadn’t connected it with the cold yet. I’d get hives and start coughing in a way that sounded like whooping cough. It was so loud that people would literally move away from me thinking I was contagious, not knowing it was my body fighting itself. People in church wouldn’t shake my hand. As it got more serious I’d have to go to bed. I got muscle and bone pain that’s nothing like you’ve ever felt before. I could no longer be a mom.

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Kathryn and her daughter

A couple years after my daughter was born I was in my pulmonologists office. It was summertime, I was wearing a skirt and top, I stood reading a magazine near the window next to an AC unit. The AC blew cold air directly on my arm and I got hives. By the time I saw my doctor I had started coughing. He said I just walked passed you and you were fine; I said it happens every time I’m cold, look at my arm.

He said, ‘You have a cold urticaria! No one has cold urticaria!”

He sent me to a friend of his who is an allergist. They put an ice cube on my back and I started going into anaphylactic shock. I told them I couldn’t stay like this; I couldn’t breathe. They’d never seen anything like it; I surprised them. I’ve never had a doctor call the next day after an appointment, but he called me to check up on me. I felt kind of hungover.”

“A cold attack for me feels like a hangover; the very first college hangover you ever had and PMS on top of that. It’s the most devastating feeling.”

“Every day I was fighting off attacks, my threshold was under 30 seconds. So opening a fridge, running water that was too cold over my hand, or holding a cold coke too long could trigger an attack. At John’s Hopkins they said ‘You have one of the worst cases we have seen, we know you have something else.’

I then went to NIH.

There I was diagnosed with periodic fever syndrome; the cold was just the trigger for it. We did a bunch of genetic testing. I’m on Ilaris which helps stabilize the fever syndrome. I can still have attacks but it’s not as often and I avoid situations that will cause me trouble.”

These situations with possible triggers are for more common than you might think. Simple, everyday activities can be dangerous territory. For example, grocery shopping has become more difficult than it used to be. Kathryn loves Trader Joe’s but its open freezer section means she has less than three minutes to shop, so she’s developed a strategy.

“I point at what I want and my husband gets it for me and I stand outside while he checks out.”

Grocery shopping isn’t the only thing that Kathryn needs to be strategic about even though things are better now that her family is living in California. Their move to Santa Barbara a year ago was because of the cold in D.C., and even the heat and humidity in the summer, were triggers.

When it would begin to get cold she would become pretty housebound. In Santa Barbara she can drop her kids off at school. However, even with better weather, Kathryn still constantly battling tachycardia and thoracic inflammation, and pain. She’s learned to plan in accordance to these battles.

 

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The whole family!

“I’m very strategic how I measure my energy for any given time. My husband and I sit down every Sunday night and plan out the week. I have to make choices about my week, I can’t do everything. I had to figure out what’s always going to be very important for me; my family and my faith. We found a church here and keeping my faith and spiritually in check have helped contribute to my wellness amidst managing my health care and my symptoms.

My kids, my beauties, are a priority. I make sure I’m at my daughter Norah’s tennis lessons, and hear about the book my son’s reading, and go for walks with them. I make time for my husband; we can’t run this ship without him. I can’t go to all events; I’m better mid-morning than I am around 6 or 7pm.”

Kathryn has not only managed to adjust her schedule, but has also accomplished something even more difficult; she’s found the beauty the struggle of living with chronic illness.

“I started writing a blog about three years ago. We hadn’t known what was wrong with me for years and I didn’t know if I’d be around to see my children grow up. Pilgrimage Gal was to document my kids’ lives for my children in case I wasn’t here. Now that my health has become more stable it’s still something for them to look back on their childhoods when they’re older.”

“That’s a gift of chronic disease; I live so presently in the moment. I love life in every way.

She never expected people to reach out to her, touched, after reading her blog. She says that even though they don’t necessarily have the same diagnoses, there is often relatable common ground. As she says, “I understand what it means to suffer.”

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Kathryn and her son

“I know what the consequences are for not fighting through, and I want to be here. There are some beautiful lessons that can be found in this. We’re raising kids who have a lot of empathy and understand that life isn’t always fair. I wouldn’t wish this life on anyone but I’m giving my kids a leg up. These tools are only going to benefit them. I wish I didn’t have to teach them this, but if I have to, it’s going to benefit them.”

“I was at a parent-teacher conference yesterday and I said to a teacher, ‘ I should tell you a little about my illness” and the teacher said, ‘Oh your son Ian already shared that with me, I was very impressed by his ability to articulate it.”

“I’m very open about my illnesses. I lovingly tell people my truth. We often hide chronic disease and often don’t say ‘This is my struggle’. By peeling back the layers, we can say ‘this is my struggle, but this is how we roll’. I’m transparent about it in every way. If I’m meeting someone who’s going to have some legs in my life for a while, I tell them I don’t want it to be awkward and I want to take the fear away from it, I want them to know that I’m moving forward in the world.”

Be on the lookout for the second part of Kathryn’s story coming soon!


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