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.