atopic dermatitis, dupixent, eczema

Dupixent on the Tenth Day

Actual text from me to my dermatologist nurse friend regarding the two Dupixent doses I injected into my own belly on Valentine’s Day: These are tiny syringes of Jesus miracles!

I almost took a few self portraits that day to document how bad it was, but after I took one I decided that I’d rather actually not remember that day in detail, thankyouverymuch. I woke up in what I am tempted to call excruciating pain in my right arm, which was swollen all the way down to my fingertips and it was stiff and hard to move. I whimpered my way into the shower to try what I call a hard reset on my skin. Warm water, pat dry, then hardcore layers of Aquaphor, Cerave and Eucerin creams within 5 minutes of exiting the shower. Hard to do with one arm. Thanks to my shipping notification I knew that meds were en route so mentally I was just trying to hang on until whenever they would arrive.

I had a hard time getting the baby out of her crib and diaper changed and basically didn’t make the toddler do anything he didn’t want to do so I could just sit on the couch and wait. We had been trying to wean at that point but due to pain and immobility in my right arm, making bottles were not a possibility so I just sat and fed the baby on demand most of the day. I texted a few people to see if they could come by and help me with the kids but no one that I texted was available, and I was feeling very vulnerable and guarded and didn’t really want to reach out to anyone that didn’t know the situation already. I just didn’t feel like explaining the complexities of my genetic defect and the incredible way the immune system creates antibodies while breastfeeding–– and the incredibly WRONG way my body interprets those signals. Hubs came home at lunch and changed an impeccably timed poopy diaper, fixed everybody lunch and got the toddler down for a nap in the most productive lunch hour I’ve ever seen. He snapped right out of work mode into super dad/husband mode and it was incredible to watch.

It was a rock bottom day for sure, but deep in my soul I was searching frantically for the familiar feeling of anxiety reeling out of control but it wasn’t there. I was strangely at peace and matter of fact about the situation. Maybe it was knowing that I couldn’t just skirt my responsibilities for the day– I had to feed kids and keep them safe. Maybe it was knowing that help was ON THE WAY. Maybe it was supernatural peace straight from God. Maybe it was a combo of all three. But that rock bottom day could not have been more different from my rock bottom days of my first flare in 2015. Same disease, new me. Behold, he is doing a new thing! In everything.

UPS dropped off my cooler box around 1pm and I set the syringes out immediately and once they were room temperature I cleaned my belly with a baby wipe (note to self: get rubbing alcohol) read, re-read, and re-read the directions again, stress ate the remaining seven gluten free Joe Joes and injected them into the loose skin of my belly that grew two humans in the past four years. Such a weird visual.

Anyways, today is day ten and I feel amazing! I saw literal overnight improvement in my fingertips on day 2. They were plump  feeling and in general my skin was extremely, abnormally soft. I started flaking and peeling like a madwoman. Over the weekend I had a widespread flare on my arms and face, but it resolved quickly and just left some peeling. On Tuesday (day 6) I had another widespread flare, but after putting on some lotion and taking some ibuprofen it was manageable and the redness went down. Overall, I just feel very very very very dry.

The strangest thing about these flares is the immense pain that comes with it. It feels like  I am sunburned and wet and any stretching or moving hurts way worse than anything I’ve ever experienced. I think my nerves are doing weird things. Today, on day ten, my pain has decreased significantly. I need to moisturize like whoa but I haven’t made time for it today but in general, I am feeling great. It’s still there, still visible but the redness is significantly less and it’s actually disappeared from my arms some. Both of my tattoos were covered eleven days ago and now only half of one is. Truly incredible.

I always make the “joke” (quotations around joke because my husband has recently brought it to my attention that my jokes may not be as funny as I think they are…) that I don’t want people to offer any solutions or products for my eczema unless they are selling a brand new immune system. Y’all, this really is a new immune systems! The injections target the pathways that contain the erroneous response to allergens and FIXES IT. Incredible. Bionic immune system. Also, this drug is priced at $37,000 for a year of treatment, I believe, and my insurance was going to charge me $200. And then I got a co-pay discount card which made it $0. For free. $37k treatment for free. What is life. Here’s Day Ten photos– you can see a few days before I started here.

Focus is all wonky because self timer and really I cannot believe that I am posting photos of myself in my sports bra on the interwebs, but ta da! Feeling so good guys. It’s still there but mobility has returned in my arms and hands and I’ve washed, dried, folded and put away laundry, washed bottles as soon as I needed to and taken pictures and adjusted my settings and none of my finger or knuckle skin cracked in half. Praise God. I am certain that setbacks are ahead, but praising seriously, hugely, and incredibly big for the gift of this small step in healing. Today is a great day. I’ve never loved washing dishes or putting laundry away more. It’s funny what things I used to take for granted.

 

 

 

 

atopic dermatitis, dupixent, eczema, Uncategorized

My Best Yes: Dupixent

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.