With a blog it’s tempting to wait until any difficulties have passed to write about them. It’s nice to wrap the past troubles up in a blog post and tie a bow on top while proclaiming “this is what happened and here’s what I learned!”. After stumbling upon Helen’s very honest and vulnerable blog about her journey with mamahood and eczema, I felt compelled to share my own. Finding her “me too” was like finding GOLD. It was healing balm to my soul to find at least one other heart on this planet that shared the same struggles and fears as me. I often feel very alone in my Eczema Mama journey. It’s so unique, so severe and so lonely at times. I figured it was time for me to share while I’m in the middle, because I know FOR SURE there is another mama out there like me. I hope you find this, girl.
We are gonna make it through this. You know how I know? I did it once already. This is how the story ends: WE WIN.
I found Helen’s blog by searching “Dupixent success stories”. My amazing dermatological team has been recommending this new drug to me and after this big flare that has lasted several weeks now, I’ve finally ordered it. It is basically the opposite of everything that got me through last time. Last time I stopped breastfeeding, went strict Autoimmune Paleo, and within a month I was almost completely clear. And it was fine! (PS: to see how Dupixent works click here… it’s cool)
The problem I’m running into this time is that eating for eczema is the ultimate metaphor for a works based religion: you have no idea how much you have to do before it works and you’ve achieved salvation. It takes time, and I don’t have time. This is NOW. This is my kids’ childhood and while I’m taking lots of pictures, singing songs and snuggling I am missing quite a bit. I wake up most mornings these days unable to extend and bend my arms without intense pain. I can’t get my hands wet, so I can’t give the kids a bath. I would basically saw my arms off for a chance to sit in a hot shower and cry out all the regular frustrations of new motherhood, but a hot shower is basically a guarantee that I’ll be miserable and immobile for the next three days. And speaking of crying, I basically have the ultimate Raccoon eye mask of eczema around my eyes, and salt water tears? Literal salt in the wound. Crying makes it worse, so crying I do not. I just want a good cry.
So, after some gentle coaxing and absolutely no pressure from my dermatologist friends and husband (they know me so well– the slightest bit of you should do this will make me NOT do it immediately) I have reached my pain threshold and decided to give Dupixent a yes. My Best Yes. As Lysa taught me, a yes is always a no to something else. So, the big No is breastfeeding. Which, first time mom me was relieved to say goodbye to. I stopped breastfeeding Lincoln when he was around 8 months old and it was hands down the best choice for our family at the time, but second time mom me is having a harder time with closing this chapter. Emmeline is our last biological baby (we’ve always talked about fostering or adopting, but that is just a twinkle in our eye..) and I am struggling with closing the chapter on the babymaking days and all the wonder and magic and dreaminess of it all. These are the days I dreamed about, you know? So much of her story has been so redemptive to me. My pregnancy, birth and even breastfeeding went so much smoother and was just so joy-filled, that I just really don’t ever want it to end. Alas, reality has reared it’s ugly, red, itchy face and I must return from my visit to the stars. It’s taken a few weeks, quite a bit of bartering with God, waiting-and-seeing, crying and bottle and paci hunting, but the time has come. My healing will be arriving on Wednesday on a Refrigerated White Horse requiring a signature and my big, sad No will lead way to a bunch of Yeses that I haven’t said in years. I’ll be saying yes to some of these things without fear for my skin to retaliate. Cannot wait. Also, I have not even considered that this treatment will not work for me so, please pray with me that it will.
short sleeves, bathing my kids, a long hot shower, wearing mascara, wearing my wedding rings, swimming in the summer, sweating, exercising, hairspray for my crazy baby hairs, pimento cheese, pet my dogs, wash dishes, hold hands with people at church, paint my nails, try new foods, wear my hair down, use regular soap in public bathrooms, bend and extend my arms fully, scratch without fear, get a pedicure, get a massage, get a haircut, get ice cream?!, eat at the State Fair, wear sunscreen, snuggle sweaty sleeping babies, clean the bathroom, holding my camera with whole fingers without cracks, epsom salt baths to relax (not out of necessity), sleeping all night, UV rays from the sun, walks outside, crying while watching a movie
Last week I set up some self portraits of me and my sweet girl in our special place. As deep as the pain goes, the joy goes just as high– and that chair has been the place for it all. Snuggled her brother in that chair when she was barely a blueberry in my belly. He told me she was a “sister” weeks before we really knew. Those early baby piranha nursing days. Cluster feeds from 6-10pm for what seemed like months. The time she pooped on the wall. Rocking a stuffy baby to sleep, and many sleepy snuggles to come (she just doesn’t know it yet). That chair is holy ground.
I stumbled upon a few eczema hashtags on Instagram recently and wanted to contribute. Most of the images were expressionless faces, and I thought I’d mix it up a bit with a smile. This disease is the absolute pits. A slow torture and an unpredictable thief. But here’s the thing, it’s not anything we did or that we didn’t do. It just is what it is, and it’s up to us to choose joy. We just gotta. I hadn’t really realized how bad it had gotten because my brain just stopped feeling it. All my fingers were cracked, open wounds around and I legit didn’t feel them. I’d avoided mirrors for a few days and not really made eye contact with myself. When I looked at these photos on the back of my camera I remember hearing a sob and realizing it was my own. It was like looking at someone else’s diseased body.
I’ve never been particularly attached my appearance. I’ve always been one to choose comfort over style, sleep over a shower, money in my pocket over a haircut or makeup… so while I would definitely prefer to not wake up disfigured or oozing some mornings, I’ve adjusted to the no-make-up and one hair wash a week lifestyle just fine. Now that I’m a girl mama, I’ve been kind of worried about how I’ll teach her to do her hair (I need to take a class, for real) or make up or dress or other girly things, but I hope she looks at these pictures in her teens, twenties or even when she’s thirty like me and see that beauty is so much more than skin deep. Yes, daughter, we should shower. But also, your face isn’t everything. Your soul matters, your heart matters and also, being funny matters (please be funny, my little girl!).
These are some of my favorite pictures of she and I to date. Strangely enough, I’m at a loss for words to describe why. Behold, he is doing a new thing. Same disease on me, but a new thing in me, for sure.
My mom says I was born with eczema on my thumb, but I don’t know if that is true or if it was an exaggeration. Eczema is a misunderstood disease, and we are kind of in a transitional place in history with it. The generation that came before us saw it as a skin disorder, and the generation now sees it as an immune disorder. It’s pretty unpredictable and literally different for everybody and every BODY. Some triggers are diet, other triggers are things that come into contact with the skin like allergens. Stress is major trigger, it all just varies greatly.
