Day -19, Thursday

Today was a tough day.

It started out OK – I relocated a spider from my room to the fake flower arrangement in the hallway (have a good life, Ben!) What can I say? I like spiders, they are good luck. They eat bad bugs. But I don’t want one – a large one at that – crawling under my bed. So relocation it was.

I had two major appointments today; the first involved a 75 minute Pulmonary Function Test, and the second was a 2.5 hour NIH-level eye exam. The PFT felt like breath sets while training for Ironman Triathlon starts. I know this because I survived Ironman. Twice. But the eye exam, the eye exam. I don’t even know half the tests they did, but they were important tests, specifically to establish a baseline for my eyes should I develop ocular-related complications due to Graft vs Host disease. But there were drops, lots of eye drops, and lights, the brightest lights I have ever seen. It was like staring into the sun, but without the tropical drinks and sandy beaches.

I actually felt nauseated.

So I stumbled back to the Family Lodge to lay down in my room – the sunlight was painfully bright and it was hard to see. Honestly, I probably shouldn’t have been walking outside, but I just wanted to curl up. Self-induced? Sure – but my sleep mask and Calm app (hello Sleep Stories) were calling to me.

And that’s just what I did.

Later, I had a few hours of virtual meetings, and I rallied. And now, rather than my typical hot tea, I’m sipping hot chocolate and distracting with MSNBC. Don’t judge – I love Rachel and Brian and as grim as the news is, it serves as a distraction from my health. And sometimes, that’s just what you need.

I had other pictures I could share. But I really feel like this sums up how I felt.

  1. Thanks for sharing. Sorry you had a rough day. Hopefully tomorrow will be better. There are lots of folks cheering for ya!


  2. Hi Marit thanks so much for sharing the real truth of your experience!! You capture the moment so well. Makes us feel like we are Right there with you. Love and calm to you!


  3. Another day closer to this being completed Marit. I wish I could “mama” you right now and let you lay your head on my lap while I tousle your hair and let you fall asleep. We are praying for you daily. You are so strong and courageous! ❤️


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