Good morning, everyone! Itās Sunday.
Two months from today is Alex and Nicoleās weddingābut whoās counting? (Me. Iām counting!) Honestly, I think my body might just hold up until then. Iām still walkingā¦ not gracefully, but technically, it counts. And Iām really happy with where things stand right now. A year ago, I wasnāt sure Iād even be walking at this point. So yeah, this feels like a win.
It was about two months ago that a technician came out to take measurements for my new power wheelchairāthe fancy-dancy one with all the bells and whistles designed to keep me mobile and functional as ALS progresses.
Good morningā¦ itās Friday!
Wow! I canāt believe I slept in until 5:30 a.m.! I know that sounds weird, but thatās late for meāand it throws my whole morning off. Even stranger is the mini panic attack it triggers, like Iām going to be late for work or miss an appointment. Iāve taken this blog seriously enough that I want it published by 7:00 a.m. CST so itās timely each day.
Good morning, friends, family, and fans!
Itās Throwback Thursdayā¦guess I better dig up a photo where I still had biceps and functioning vocal cords since we didnāt take a photo yesterdayā¦a miss!
Yesterday, we met up with Lis and Steve for lunch at Seasons 52 in Schaumburg. Theyāre heading off to London and then cruising through the Norwegian Fjords. What a great trip!
Lunch was excellent, though the noise level rivaled a middle school cafeteria on parent day.
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.
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.
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.
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.
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.
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.
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.
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.
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¦.
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).
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).
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.
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.
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.
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.
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.
