Home again

Home. 💙 And just out of rheumatology follow up where hugs were given as were heavy sighs of relief. My labs remain unsettling, but my white count has improved for which we are thankful. There is question of my blood hemolyzing (blood cells independently bursting- another sign of significant disease) along with the need to determine if my symptoms/ lab abnormalities are related to lupus or underlying viral disease.

I recently told Matt it had been so long since we’d seen health crisis, I almost felt irrelevant to the chronic illness community. *almost* The past two and a half years had been bliss with regard to my health. And just like that, we were thrown back in.

And it all comes back so fast.

And you wonder how you could ever forget this misery in the first place.

The struggle to do the normal things.

The things you don’t think twice about. Until you have to. And you never want to. And these things aren’t even a part of your disease, they’ve just accumulated over the years to come along for the ride. The nasty extras. That sometimes take more from you than your actual disease.

The getting out of bed dizzy and the overall sense of being unwell. The drop in your stomach when you realize you really are unwell and can’t wish it away no matter how hard you try. The deep breath you take in, wondering how long it will stay this time. The walking down the hospital corridor, sensing a precipitous drop in blood pressure and squeezing Matt’s hand, while silently begging God not to let you go down here on the hospital floor. The anxiety that comes from loss of bodily control and doing your best to internally beat it back while attempting to steady your shaky hands. The sudden onset nausea that comes out of nowhere, bringing with it if given the opportunity, me left lying passed out on the floor in a cold clammy mess. The need for IV therapy nurses to put in your IVs because the floor nurses can’t get a vein, no matter how many sticks they try. The need to not stand in one position for more than five minutes or again, I will go down. Honestly, I didn’t even know that was possible. Until I did. And I’d like to unknow all of this in some ways. And in other ways, I can’t help but be anything but grateful for through these things, we have seen the good and merciful hand of God, who hasn’t been about making our lives easy. But instead about making them real, so we can see him more. And maybe, that’s the most beautiful and most merciful thing he could do.