Saturday, April 12, 2025

Saturday, April 12, 2025 - Day 242

Good morning, it’s going to be a sunny day. ☀️ 
Let’s hope that’s a sign of good things to come, because I’m still waiting on that wheelchair. No shipping notice. Nothing. I worry that the supply chain stuck is in some kind of tariff tug-of-war? If I don’t see something by Monday, it’s follow-up time.

Speaking of follow-up, I had my pulmonologist appointment on April 1st to address my completely useless excuse for a cough. Yesterday, I checked the patient portal expecting to see an order for a cough-assist device. Nope. Nada. Zilch. So I sent the doc a polite message, asking if I missed a step—really I was just nudging things along without poking the bear too hard. I know they’re short-handed and stretched thin. It took six weeks just to get that appointment. I’m the one that needs the help so best to be nice.

A couple of hours later, a text pops up saying my doctor ordered “testing supplies.” Not exactly what I was hoping for, but I guess the nudge worked. Better late than never. Still, I should’ve followed up sooner—this choking issue is no joke. One of these days, I might not be able to clear my airway, and that’s a serious YIKES.

Now I’m waiting on more shipping notices, and of course, everything will probably land Thursday—the day we head up to Minocqua for Easter. Timing, as always, impeccable.

Update on the bathroom remodel. Technically it’s finished…except for the part where it actually works. The no-barrier shower is a dream to get into, but it’s just as easy for the water to escape. We figured it might be an issue, but the original recommendation was to skip installing glass. We may need to rethink that. I’m now researching stick-on shower dams. I think they’re all made in China. Whoops…should have acted sooner!

I didn’t plan on becoming a dam—or damn—engineer, but here we are. Until then, I’m back in the old shower, wrestling with a shower chair that weighs about 50 pounds and resists movement like a two 25 pound dumbbells. A much heavier load than the one pound dumbbells I’m working out with.

Physically, each day I feel a little weaker. On Thursday at Sew Hop’d, I picked up the 20 oz. mug and my hand trembled just trying to raise it for a sip. I’m officially at the point where Mark carries my beer back from the bar. It’s either that or risk spilling it and triggering a “cleanup on aisle 5.”

Cindy continues to be amazing. She’s been hustling to keep my protein intake at 60–70 grams a day—eggs, peanut butter, high-protein waffles—whatever I’ll eat, she’s on it. She’s even started cutting my food for me, something we both knew would come eventually. I’m lucky she’s willing to roll with the changes, even when the load keeps getting heavier.

That said, I’m officially down to 166 pounds. That’s a 25-pound drop since last June when the ALS symptoms started showing up. The weird part? I look like I’m gaining weight, just not in the places I want. My body is losing muscle but hoarding belly fat like a squirrel in winter. Pear-shaped and weak—what a combo. Maybe it’s time to pivot from high-protein to high-calorie. Bring on the Big Macs. Donna, is the elf behind the Girl Scout dos-e-doe cookie deliveries—I see you, and thank you. Where are you hiding the stash?

Yesterday, post-shower and feeling lighter (in all the wrong ways), I tried to put on a pair of jeans. The button refused to cooperate—even with the assistive tool. Cindy watched me struggle and offered to help. Naturally, I declined, because…pride and stubbornness. After several failed attempts and what might’ve qualified as an ab workout, I surrendered. Cindy stepped in, laughed, and tried herself—equally difficult for her. Eventually, with sheer determination and a bit of comedy, she got the button fastened. Then laughed again because she knew unbuttoning later would be its own episode. Spoiler: it was. Ten minutes of round two later, I was finally free.

All this led me to remember the magnet-button shirts Zack ordered for me. Today feels like a good day to try them out. Worst case, I pop a magnet instead of a button. Thanks, Zack—you’re ahead of the curve.

Once I was fully dressed—after a half-hour performance that would have made for a good skit on The Tonight Show (when Johnny Carson was the host), Mark picked me up and we headed to Mike and Beth’s home for cigars and drinks in their garage. It was the first time in 20 years I’ve seen Mark light up a cigar and sip whiskey. It was a great time—so good, in fact, that Cindy had to text Mark to remind me I was past curfew. She wasn’t wrong.

But before we left, I asked Mike if I could borrow one of his irons—golf club, not wrinkle-remover—to see if I could still swing. I had visions of a triumphant moment. The reality? Wobble, wobble, abort mission. Balance was not in my favor. As Mike helped me back to the car, I glanced down at the lawn and realized the problem. I was standing on a downhill lie. Yep. That’s my story, and I’m sticking to it. There will be other opportunities…I hope.

Have a great Saturday.

Love you guys! ❤️