Wednesday, July 9, 2025
Good morning and hello to Wednesday. I finally have my littleāand I mean littleāaudio studio set up to record my voice (or anything else I feel like recording) from here on out. Itās tucked into the corner of the guest bedroom, but the key is: itās ready. All I have to do now is plant my butt in the chair and get it done. With some practice, Iām hopeful I can capture a voice recording that still sounds like me.
Tuesday, July 8, 2025
Good morning. Itās Tuesday. Itās been a quiet few days at homeā¦reading and working on a jigsaw puzzle as a distraction from watching the heartbreaking news out of Texas. The loss of so many lives has been shocking. The images of destruction are nearly impossible to process. And the tragedy at Camp Mysticāthe loss of campers and counselors who never made it homeā¦feels especially crushing. It weighs on me in a way I didnāt expect.
Monday, July 7, 2025
Good morning, and welcome to a new week of life. First, sending love and condolences to my cousin Renee and her husband Doug, who lost their 16-year-old dog, Posey, over the weekend. Iām so sorry. š¢ ALS update. WEIGHTā¦ I started my new diet a couple of weeks agoā¦though realistically, itās only been a week since I finally started having success with my formula feedings. That first week was rough.
Sunday, July 6, 2025
Good morning, rise and shine! Itās the last day of the 4th of July weekend. Weāre hoping to catch the parade todayāif the rain doesnāt interfere. Outrunning raindrops in a wheelchair is tricky business, but hey, itās only water. Not the worst thing that could happen. The last couple of weeks have been hotā¦ even by my standards. My internal heating and cooling system is completely out of whack. I used to carry a pullover everywhereā¦especially if we were going to a restaurant where the A/C was cranked.
Saturday, July 5, 2025
Good morning! Itās the morning after a full night of fireworks š§Øā¦ mostly what Iād call flash-bangs. No oohs and aahsā¦just loud explosions deep into the night. I love a good fireworks show, but I donāt get the thrill of making loud noises on repeat while the rest of the neighborhood is trying to sleep. My fantasy payback? Track down where these guys live and launch my own barrage of noisemakers.
Friday, July 4, 2025
Good morning.āØHappy 4th of July! ššš§Ø The 4th has always been one of my favorite holidays. The weather is usually perfect, and if you can stay up late enough, the firework shows are well worth the waitā¦with plenty of chances to āoohā and āahhā along the way. We probably wouldāve gone up to Fence Lake this weekend if it werenāt for the setbacks from the feeding tube surgery. Thereās just something about sitting on the pier, watching some of the best firework displays money can buy.
Thursday, July 3, 2025
Good morning!āØToday marks the start of Crystal Lakeās 4th of July celebration. Thereās a festival here every weekend this time of year, and this one kicks off today. Like most local fests, itās pricey, hot, crowded, loudā¦and carries that unmistakable summer funk. Must be the porta-potties, since there arenāt any petting zoo animals for the kids to torment. Itās also a sentimental day for Cindy and me. Twenty years ago, we got engaged at this very festival.
Wednesday, July 2, 2025
Good morning. Yesterday was a mixed bag. This whole idea of staying distracted from ALSā¦ well, some days it works better than others. Thereās plenty on the horizon to lift my spiritsāthe July 4th holiday is almost here, and weāre heading to Fence Lake later this month. Just the thought of being up there, surrounded by water, trees, and family, is a bright spot. And weāve got lots of visits lined up with friends and familyāsomething to genuinely look forward to.
Tuesday, July 1, 2025
Good morning to you allā¦ wherever you are on this first day of July. Yesterday turned out to be a good day. Iām finally starting to feel like Iāve turned the corner from last weekās surgery. The pain is now just a dull ache, and I tolerated my feedings during the dayāBIG WIN! I actually had a food craving in the morning, so I started the day just like I used toā¦.
Monday, June 30, 2025
Good morning, everybody! Hard to believe itās only been a week since my āeasy peasyā feeding tube procedure. If youāve followed the blog, the last week, you know it was not so easy. And not so peasy. I went in last Monday feeling confidentā¦Dr. Ujiki was my surgeon, and he came highly recommended. One of the nurses even ranked him higher than Dr. Bilimoria (whom Iāve basically placed just below God on the talent-and-personality chart).
Sunday, June 29, 2025
Good morning, blog readersā¦ Iām slowly returning to normal, health-wise. But now I find myself a bit hesitant to do another tube feeding. Somewhere along the way, my mind linked those feedings to the weeklong constipation saga. Itās probably all the nausea I felt after each one. So thatās my next hill to climbā¦rebuilding some trust in the tube. That said, there is one clear win with this feeding tube (which, by the way, needs a name).
Saturday, June 28, 2025
Good morning, world! Weāre five days out from my feeding tube surgery, and letās just sayā¦itās been a hell of a rideāand Iām not convinced itās over. Lucky me. Nicole flew in early yesterday morning. I stayed home while Cindy ran airport duty, mostly because I didnāt want to stray too far from the bathroom. Iāve been loading up on over-the-counter remedies to relieve a stubborn case of constipation. So far, no luck.
Friday, June 27, 2025
Good morning! Yesterday, I was reminded of a story from my teen years. Back in the early ā60s and ā70s, weād head up north to Camp Jorn, a YMCA camp in Manitowish Waters. We started going as a family, all crammed into a tiny cabin with bunk beds. I think my parents had a separate room for some privacyāthough how much privacy you get with eight kids in tow is up for debate.
Thursday, June 26, 2025
Good morning, everyone! Another day of rest and recovery. I canāt say yesterday felt much better than Tuesday, but Cindy told me I looked and acted better. Now I just need to pass that memo along to my bodyābecause it clearly didnāt get the message. I spent most of the day in bed, trying to get up occasionally to help my body adjust and nudge things back toward normal. Still no success on the toilet front since before surgery on Monday.
Wednesday, June 25, 2025
Good morning! Iām happy to be home from the hospitalābut honestly, I wish I felt a little better. Iām surprised by how much the incision still hurts. Dr. Ujiki, my GI surgeon, told me to expect pain similar to getting my ears pierced. Iāve never had that done, but if this is what it feels likeā¦ Iām definitely checking it off the list. Ears pierced? No needāIāll just hang jewelry off my belly.
Tuesday, June 24, 2025 ā Day 315
Good morning from Evanston Hospital.
Yesterdayās surgery went very wellāno complications, just the usual healing ahead.
That said, thereās quite a bit of pain, and I didnāt sleep a wink last night. Hospitals donāt exactly specialize in rest. The good news? I should be heading home later today.
Iāll fill in the details tomorrow when Iām more rested and clear-headed. For now, just a heartfelt thank you for all the well wishes and support. It truly means the world.
Iām looking forward to recovering in my own spaceāsomewhere I wonāt be woken up every few hours for vitals, check-ins, and mystery beeping.
Have a great Tuesday.
Love you guys! ā¤ļø
Monday, June 23, 2025
Good morning, and welcome to a new week. Today marks a milestoneāand like so many milestones on this ALS journey, it carries a double edge. This afternoon, Iām having the feeding tube installed. I havenāt stepped on the scale yet today, but Iām guessing Iām down to 158 pounds. Iām hopeful this step helps me reverse the steady slide in weight and daily energy. Thatās the plan, anyway: fuel the body, reclaim some strength, and keep going.
Sunday, June 22, 2025
Good morning, all!āØItās another steamy one. Yesterday morning, I joined Cindy and Bear for a walk. The temperatures were pleasant, and there was a nice, comfortable breeze blowingājust enough to make it feel good to be outside. As we turned the corner, we saw the contractors already hard at work at 7 a.m., backfilling the new sidewalk. When we got closer, we spotted a bobcat straddling the sidewalk, spreading soil with no clear way for me to sneak past.
Saturday, June 21, 2025
Good morning! Itās going to be a hot one this weekend. Good thing Iāve got a solid stack of books to keep me companyābecause Iāll be staying inside for most, if not all, of it. Thank you to everyone whoās sent reading material for my ALS journey. Books are the perfect escape. Once Iām absorbed in a story, I can forget about ALS for a while, and that kind of distraction is gold.
Friday, June 20, 2025
Good morning, everyone! Today marks the first day of summer! Itās always exciting to hit the summer solsticeālong days, warm nights, and that unmistakable summer energy in the air. Of course, then I remember that it also means the sun starts its slow march to the southern hemisphere. The days will start getting shorter from here on out. Yeah, yeah, I know the sun isnāt actually movingābut it still feels like the beginning of the long slide toward winter.