Small Victories

I have some good news. I feel like I rarely get to share good news, at least in the medical realm. We made our three hour trek to KC to my Rheumatologist today.

That in itself is exciting.

I don’t get out much. I was a bit like a giddy little kid when I actually got to go into a Quick Trip!

But, wow, the world is different! Navigating outings in the midst of a pandemic is nuts. I bounce between the desire to engage every person I see (I never get out) and to run from every person I see (pandemics certainly don’t bode well with OCD). I had to keep reminding myself about perfect love driving out fear, repeating the 23rd Psalm, and going over in my head the timeline of God’s miraculous work in my life.

But dang, how the heck do people manage to open public doors now? I had no idea how many surfaces you actually have to touch in order to purchase an item, and I’m not great at eyeballing what six feet should be. And when you are allergic to most hand sanitizers, it adds a new element to the game of germ-dodging! Good thing I laid down my fear-based control-freak hat a few years ago.

Anyway, aside from the fact that my poor home health nurses have had great difficulty finding actual legit veins with actual substantial blood in them, my Remicade infusions are actually helping! My inflammation was down, and the doctor was pleased. I will have to get (another) port because my potsie veins can’t seem to keep blood in them, but I will think about that when I’m finished with my victory lap.

In the past six years, I can count on like two fingers the number of celebratory doctors appointments. I’m calling it a major win.

I also got to have a day with my sweet husband, as he patiently listened to me as I chatted his poor ears off (I’m clearly under-socialized).

The greeting that we received upon arriving home was grand as well. I was tackled in joy by every child, especially the puppy.

The trip was physically difficult, but emotionally, it was much needed. And as Jordan and I journey through our tenth year of marriage and seventh year in the midst of this medical limbo, I am amazed at how much I simply love being with him. I’ve never known a love like this or a friendship so delightful.

Car rides are becoming increasingly physically difficult. A new gift of motion sickness seems to be surfacing; But in the midst of the nausea, dehydration of leaky vasculature, and the ever-present weight of travel on a body that seems to be designed for home use only, my sweet man makes me forget the pain and discomfort. He helps make all the “hard things” just a little bit easier and all the heaviness of severe chronic illness just a little bit lighter.

This path that no one ever wants to walk has the most glorious views and the best companions. And we continue to walk hand-in-hand down our rocky path, as we are hemmed in by the good Shepherd. This life is breathtaking…..even if I am a bit socially awkward after being holed up in my house for a year. I like to see it as awkwardly disarming!

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