Day +141, Wednesday

Photo of the Day: Moving quickly on a 5-mile hike through Bent Creek. I wasn’t a huge fan of this image, I’ll be honest. But it so represents this process, especially after yesterday’s photo of the day: take things one step at a time, one day at a time, one moment at a time.

I woke up today and I felt…better? The lack of headache is what hit me first. I guess that having a constant headache has just been with me for so long, that it’s a beautiful feeling to not notice it all of a sudden. And, peeking behind the curtain, I saw something that made my heart happy – fog! I love fog and mist, something that I can’t explain but speaks to my deep love of the Pacific North West, an ancestral connection perhaps. And suddenly, I felt this familiar yearning to be walking through a silent wood shrouded in fog, an etherial place where the world feels beautiful and wise, and where I know that no matter what happens – I’m going to be OK.

No – I didn’t just jump into my car and go hiking, but that urge to just hit a trail was there.

Taking a step back, I think the full effects of holding my Tacrolimus for 24-hours were kicking in. I can’t remember the last time where I felt energy like that, where I didn’t feel as though I needed a nap after my breakfast. Andy thinks it could be the antiviral medication I started to prevent any more CMV (Cytomegalovirus) infection, Valganciclovir. I argued that it typically takes 24-48 hours for oral medication like this to work…but then again, I’ve never taken a medication like this, or been on so many antiviral meds in my life. I guess I’m only speaking from the standpoint of antibiotics, which (ironically), I don’t currently take (except as a post-coital prophylaxis).

My body seems to be much better overall, for which I’m grateful. The remaining issue is that of my Kidneys. My feet, bless them, look like little boats – in spite of hiking 5 miles, wearing compression socks all day, drinking 3+ liters of water and generally eating a healthy diet (minus a cupcake or two), I seem to have puffy feet and lower legs in general. My understanding is that this will diminish over time, as my Creatinine level lowers and my system normalizes. Let’s hope. I have another blood check on Friday and I’m set to meet Dr. W after.

Happily, with my body feeling better, my emotional well-being & mindset was also improved. I’m putting that in the “win” category for sure. There were no tears today, and I actually felt productive in completing my morning tasks. Going out for my hike was a gift that I relished. It was a quick 2.5 miles up to Ledford Gap where I paused for a photo and to drink water (I love my Kidneys, I love my Kidneys). I really enjoyed padding silently through the forrest, hearing the occasional patter of rain drops on leaves, and smelling the fresh scent of fragrant pine.

A very empty Ledford Gap, my turnaround point.

Later, it was time with Andy who surprised me with flowers (generally fresh flowers are a no-no because of mold) – I appreciated the thought and their earthy scent, but I will be watching them closely and chucking them out sooner rather than later (unfortunately). Thankfully, this isn’t a permanent thing. We enjoyed dinner and catching up with each other, something that we haven’t been able to do since Sunday, as he began pool (billiards not swimming) league on Monday and Tuesday nights. I’m thankful for our time together.

Now he’s asleep next to me and I’m enjoying the sound of rain on our roof. It should be a rainy few days around here in the mountains of Western NC, but that’s OK. Tomorrow I’ve got a Pentamidine breathing treatment at Mission Hospital and my virtual Better Together Support Group, for which I am always so grateful.

Thanks for your kind words of support and for reading – the messages are so uplifting and remind me that regardless of how I feel, I’m never in this alone. ❤

  1. I’m happy that yesterday was a better day physically and emotionally. It’s interesting how the two seem to go hand-in-hand. That is true for all of us I think. We are due for some sun and warmth here in Minnesota today, but maybe you will get more of the fog you like.

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  2. Wonderful that you are feeling better and the headache is gone
    You and I share a love of fog. There is something so calming about it.
    Let’s hope you continue to feel better.
    ❤️Dad

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