How on Earth have ya been?! I’ve been MIA, even through the holidays but not completely without good reason. Wanna catch up?
I started having a mega-flare around Thanksgiving thanks to my doctor’s office staff forgetting to send documents to the insurance company, resulting in the insurance company denying my remicade infusions (you know, the ones that my life literally depend on) and further delaying any forthcoming infusions.
The more time lapsed between infusions, life.got.real.
A trip to the ER for dehydration in January, and I learned that hospitals no longer even carry my infusion medication because of cost, so that killed my hopes and dreams of receiving an emergency infusion. Back on the steroids we go (kicking and screaming- if you’ve ever been on the ‘roids I know you understand!). I called the doc to update his staff on my change in medical status/recent trip to the ER/weight loss from crapping blood constantly (sorry-x-rated), and received a “what do you expect us to do for you?” response, which resulted in me finding another doctor in.a.hurry.
My new doc was furious about my exacerbated symptoms to say the least (we are starting over, from ground zero and it is a lot of time-intensive, hard work). She prescribed me more oral meds to help my body not reject the infusion since it has been so long without the medication. Within three business days, the new doc had my insurance giving the green light for infusions for the rest of the year. MIRACLES! Ya girl finally got an infusion, only a month past due. But I won’t be without any future infusions this year. PRAISE HANDS!
My new infusion center is located at my new doctor’s office in Dallas, three hours of a drive from where I live in OKC, but I don’t mind. My sister and best gal pal, Lindsay, lives in the Big D, so we make a fun sister weekend out of it. Here I am cuddling her dog Sophie while she’s at work, pre-Remicade nap session and just after grabbing some juice from one of my Austin guilty pleasures in Dallas, Juiceland.
And if you know me, you know that infusion days= pizza days 🙂
We went to Oak Cliff for some delicious pizza at Eno’s which was the cutest little area I’ve seen in a while (disclaimer: not all of Oak Cliff is this picturesque, but it’s on the up and up). We grabbed our pie to-go because, well, symptoms got in the way. And then we headed home to watch a healthy dose of Grey’s Anatomy and hang out with Sophiedog.
The next rainy morning we went to a local barre class where we spent most of the hour huffing and puffing and laughing and feeling especially uncoordinated, then we headed to Mudsmith for post-workout coffee and conversation. I think Lindsay hated me a little for signing us up for barre (oops). Then I headed back to OKC for a biochemistry test.
Which about brings us up to speed for this week! We had our first ice storm since I moved her a year ago:
Y’all. I have never driven in ice. It was a big grown-up deal for ya girl.
But I made it to work and back home all week just like a pro!
And today I wore sandals and a tank top to yoga class, because it’s sixty degrees again and life is good!
I realize now that I should’ve allowed myself to be vulnerable and open during the depths of this past flare; it could’ve helped someone. When symptoms rage and I start to panic, I have a difficult time vocalizing and making sense of my thoughts. I even have somewhat of a guilty conscience for fear of sounding too negative and “debbie downer” but that’s real life! Chronic disease is a tough dragon to tame at times, but if you’re going through something similar, hang in there. Know that you may have to make sacrifices (e.g. sleep, meds, dietary changes, more exercise, eliminating stress, etc) but you and your health are worth it all.
I’m still not out of the woods; I am still fighting through symptoms, and if I think too much about where I’ve been and how it feels like I’ve taken three steps backward right now, I get bummed. But I’m not letting this flare get to me like the others, and I refuse to sit on my couch stagnant and sad (not that there’s anything wrong with that! Couches can be great for healing with a healthy dose of some Netflix, but it’s not what I need right now). For starters, I signed up for yoga (I’m really bad at it), but y’all, I LOVE it.
The facility also offers barre and pilates, and I find it’s just the right speed to make me stronger without feeling like I’m having a near-death experience while exercising. I’ve also started running again.
I (self-timer! holla!) took this pic after yesterday’s quick little one mile run because I felt strong. 9.56″ pace for a one mile up and down some little hills and over puddles of melted ice, and it was exactly what I needed. Starting from the bottom can be so scary and disheartening, but honestly. What is worse than being stuck at the bottom? Nothing. So I’m climbing my way up and up again, training for some upcoming half marathons, doing the things I love as often as I can, listening to my body, eating good food, trying new things, experimenting with new recipes, and finding joy in the journey.
Hope you’re finding joy in your journey, wherever you are! It’s so good to be back. xo