Tuesday, February 3, 2026 – Day 529

Tuesday, February 3, 2026

Super Bowl Squares Pool 
• Pool #1 is sold out
• Pool #2 is open — 45 squares remaining
Same deal: $25 per square ($10 goes to ALS United)

In the notes section of Venmo or Zelle, please write Super Bowl Squares and your name, and send to:
• Venmo: @Nicole-Snarski
• Zelle: nesnarski@gmail.com
• Phone number to verify: 847-687-3312

Once the squares have numbers assigned, I’ll post a photo on the blog. I don’t have it… yet. ———————————————————————

Good morning, everyone.

Happy Birthday, Linda Lombardi! 🎉🎂🥳 A WIU friend.

Yesterday we made the long, uncomfortable trip to Evanston to see my pulmonologist. He wanted to address my shortness of breath—an all-too-appropriate acronym: SOB—and review my ventilator settings. I also wanted to talk about the severely dry mouth I deal with every night.

Barb and Mark came along to help load, unload, and push me through the hospital. That’s above and beyond—giving up an entire day for an appointment I don’t exactly look forward to. Thank you!

I rode in the back seat again, neck brace on, reclined as far as possible. Sitting upright means my head gets tossed around with every stop and start—and Crystal Lake to Evanston is nothing but stop-and-go.

We arrived early, and when we finally saw the doctor, he spent a solid 45 minutes with us, working through possible fixes. Long story short: the biggest contributor to my scorched mouth is dehydration. That one’s on me.

I haven’t had water by mouth in weeks, and I hadn’t fully compensated through my feeding tube. I was avoiding too much water because… well, then I have to pee constantly—and that’s no small challenge. Still, I agreed to track my intake and hit his target: 1.0–1.2 liters of added water, on top of the nearly 1.0 liter I already get from my formula.

Once home, I got to work. Adding water through the tube isn’t hard—it’s just managing the bladder afterward, which doesn’t always give much warning. By bedtime, I’d hit my goal. I hoped the night would be easier. At first, it was. My mouth didn’t dry out immediately when I put the mask on—it just felt less moist.

Then 3:00 a.m. hit.

I woke to pee and checked my mouth: dry as a bone. I tried nose breathing, but congestion forced me back to mouth breathing. I was wide awake now, my mind racing, the walls of ALS starting to close in. I shut off the ventilator and pulled off the mask, propping myself as upright as I could so gravity could help my diaphragm do its job. My breathing was shallow and fast—like it is all day—but somehow heavier at night.

This wasn’t going well.

Cindy rolled over. Our eyes met. I reached out and asked her to hold my hand so I wouldn’t feel so alone in that moment. She took it immediately, gently folding her hand around mine, her other hand softly rubbing my wrist.

Just like that, the anxiety eased. I still wasn’t breathing the way I wanted—but I wasn’t alone.

I lay there for the next 90 minutes, listening to the Calm app battle the rhythmic churn of the feeding pump (they do notplay well together). Cindy didn’t let go until I rolled over to shut the pump off before it chirped at me that it was empty. Finally, time to get up.

I’m deeply thankful for a partner who recognizes distress without words—and reaches out to comfort and protect me when the night gets heavy. That’s love.

Have a great day, everyone.
Love you guys! ❤️

Today’s photo is a nice light-hearted one of Wyatt and Coco watching tv in baskets. Whatever works for them.