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.

Neutropenic fever

My bone marrow has been sluggish, yielding only a 0.7 bump in white blood cells from yesterday’s levels. (We had been cautiously hoping for a 3-4 point increase.)The hematologist has informed us that because I have been on immune suppressing medications for so long, my bone marrow may take longer to stimulate. Additionally, my platelets have begun to drop.

Infectious disease wants to keep watching me until all blood cultures return (which may take days) and my numbers normalize. In the mean time, I continue on IV antibiotics and neutropenic precautions (ie. elimination of all germs, mask wearing, obsessive hand washing, no raw fruits or vegetables), as even a small bug could be catastrophic at this juncture.

And so we wait. In conditions that are less than ideal. Away from my babies. On a broken bed that sounds like a vacuum, inflating and deflating all night long.

But even in my current state of misery, the hand of God has been evident in the details. Matt and I left vacation a day early. Had we stayed, I wouldn’t have gotten labs drawn to discover the gravity of my numbers which could have easily cost me my life. Literally.

We also see him in my rheumatologist, who called me from her vacation in Maine to tell me to emergently come in. She has continued to not only follow up with the doctors here, but also text me personally. Who does that?

I came across this verse a few days ago while reading the book of Luke, and it hit me, though I know I’ve read it before. It was spoken by Elizabeth to Mary upon learning Mary was pregnant with Jesus.

“Blessed is she who has believed that the Lord would fulfill his promises to her.” (Luke 1:45)

She believed him.

I think maybe one of the reasons it stuck out to me was that I was doing the exact opposite. I was struggling to believe God’s promises for me. Struggling to trust him fully. Struggling to turn to him first- before Matt or my parents or if we’re being honest- a show, or a workout or even a pathetic bowl of ice cream. Sometimes I struggle to turn to him at all.

And even STILL, I can see a river of grace behind me.

He is faithful when we are faithless.

Lord that you would increase my faith. To not assume the worst is coming. To not be ruled by anxiety or fear of what others are thinking. To not need to control everything for there to be PEACE.

To TRUST first and not last.

To HOPE first and not sometimes.

To KNOW you hold all things, know all things and can be fully and completely trusted, no matter how ugly things get.

If you’re anything like me, maybe you could use this simple prayer too:

Help me believe him too.💗