Humira Shots, Haircuts, and Wedding Dresses, Oh My!

So, once again it’s been a long time since I’ve written! This year continues to be one wherein very little is “normal”, and in some ways not writing about it but just experiencing it has been the best way to process it. However, God always seems to bring me back to a place where I must recall that putting words to difficult things takes the power out of them… We name something, shed light on it, and invite Community into it, and suddenly the fear-swirl that comes with it must diminish. When I’m silent with something for too long, there is a temptation to see it as bigger than me, and what’s worse, that creeps into the feeling that it’s bigger than God, and the lie that we’re alone. I end up folding, thinking that speaking about things equates to whining, but that’s just a trick to make us feel judged, petty, small, and guilty, when Christ’s real perspective is one that caters to little children crawling up in His lap with little-children-worries.

The funny part is that these emotions seem to come out with the “wrong” triggers! Sickness itself was so bad. This last flare-up was so strong, so altogether crushing, that maybe there just wasn’t time to feel things as they happened, and now, months after the worst of it, the tiny things are the button-pushers.

This past week I had to cut my hair off. The rounds of powerful medicines we had to use for this flare-up made it rapidly fall out, and by the time this month came around it was clear that it wasn’t salvageable and that I was going to be a short-haired bride afterall. Not what I’d always dreamed of, but also NOT a huge deal; it’s definitely just hair! But somehow the no-choice-in-the-matterness of it all shook me up more than I expected, and on the happiest of girly days—when I got to go pick up my wedding dress and do the first fitting—I started to weep. Maybe these tangible things exist to put form to something we wouldn’t be able to process another way. Lost tresses and the way they change my face force me to move forward, to take a deep breath and chose bravery in the small stuff, leaving loss behind and pursuing confidence again after feeling tossed around by feisty circumstances.  

And I have been given the BEST support team for this stuff… two brothers and a sister that came along for the chop, and didn’t make me feel silly in any way, a mom that wiped my tears at the bridal salon, a pappy that nuzzled the words “you’re beautiful” into my cheek, and a fiancé that has only gushed delight, excitement, support, and anticipation at a lifetime of seeing each other grow and change.

A few days later, we needed to administer the second “loading dose” of the new “biologic” medication (given in my arm this time, instead of the initial 4 in my belly – see the pic!). This one is replacing the Remicade that was causing the hairloss, exhaustion, and brain-fog. We’re really hopeful that this is the one we can stick with for many years to come, and are praying that as it gets in my system, I will become able to wean off the steroids again and remain on only 1-2 medicines! It’s awesome to be able to give myself the shots (it’ll be 1 shot every 2 weeks now), and to no longer have to plan around intravenous infusions every 8 weeks! This medicine still suppresses my immune system, which potentially still limits where Johnny and I will be able to serve with Wycliffe in the future, but that “limit” no longer feels scary, and I stand firmly on the knowledge that no medicine will wrangle any limitation on God’s will.

So change pummels forward, but good things are afoot. Smiling today at the oddity of this summer, and thankful for all the ways this body is calming down.