This feels a little silly…but here goes…I’m Jenny, and until fairly recently my bio began with “I’m a Children and Family Ministry Director, wife to Jim, & mom to three sons, falalalalalalala…” But life has thrown us a series of curve balls with not one, but two different autoimmune liver diseases – and a recent diagnosis of lyme disease complicated things further. In the blink of an eye my life’s work has become about getting – and staying – well. My health was already compromised by an immune deficiency which necessitates weekly infusions of plasma, and I really thought that my 2011 diagnosis of CVID (Common Variable Immune Deficiency) had fulfilled my quota of bad luck.
For the past few years, I have woven weekly infusions of immune-globulin into my schedule and, despite occasional hiccups, life was carrying on according to MY plan. Have I not mentioned yet that I am a planner? I have always enjoyed my ability to multi-task….cooking dinner while negotiating bus rates while scheduling goats and donkeys for a Christmas nativity service while supervising homework. My calendar was color coded (#WashiTape), my weekly meals planned, scheduled and purchased through Peapod, and I loved to say that “spontaneity had its time and its place.”(Don’t I sound just delightful?)
I assumed that CVID would be the thorn in my side, and I humbly (ha!) say that I thought I was carrying it pretty well. I was not supposed to get something else. While you will hear later about our road to the correct liver disease diagnoses and then LYME, I will tell you now that it wasn’t pretty, and it did not fit with my plans.
But wait…there’s more. In the past two years we’ve added two more diagnoses of Lyme disease to our family’s tally, plunging us into depths I never knew we could descend, much less, emerge from. But that is what we are doing. Lyme has forced us to change jobs, cities, homes, and dreams…but we can honestly say now that we are more than okay. We’re gathering the lessons and refining priorities and discovering that, while at the core we’re the same people you knew…we’re also forever different.
So here I am, two years into this new reality…and while I feel like I have a growing deficit column of the ways my body has betrayed me, I know deep in my heart that I am carried in arms I cannot see, and I am surrounded by amazing, loving people who are walking with me through this. And as I struggle to define myself under the new constraints of this pain-in-the-ass illness, I realized that I have a lot to say. So here goes….
My name is Jenny and I am fighting to be well. I am Embracing Plan B – which now means that some days I just crawl back in bed, and some days I get to work and cook dinner and walk my two dogs, but I seldom get to schedule it. I am married to Jim, my amazing husband (and business partner) who is more generous to me than I have EVER deserved, and more thoughtful than you can imagine. We have three grown sons and one new daughter who are hilarious and talented and imperfect and probably don’t want to be the subject of my blog posts (tbd) and two obnoxious labs named Lucy and Lily. This will be a space where I share about health and faith and wholeness, about PBC, CVID, Lyme and Planb, about advocating ….and about finding joy in unexpected places. Let’s get started.