Good morning, everyone.
Nikki and Alex were here last night. Nikki flew in for a quick visit before the big St. Maarten vacation, and Alex arrived hauling the 20-pound turkey weâll be cooking on Saturdayâfor six people. Safe to sayâŚthere will be leftovers.
We got to talking about childhood stories, and as often happens, one memory led to another. Many stories are worth repeating and Iâd like to share as many of them as I can over the upcoming winter months.
Good morning, everyone.
Nikki is flying in this morning for a quick visit before she and the family take off for St. Maarten with the Brickhouse clan. Cindy and I were invited to join them, and Iâll admitâŚit was tempting. An island adventure with sun, sand, swimming, and siestas sounds heavenly. But the real draw would have been time with Coco and Wyatt. We just donât see them much anymore since this shitty disease entered our lives.
Good morning, everyone.
I stuck with my formula feedings yesterday and even squeezed in some enchiladas, so I know I got the calories in. I didnât get on the scaleâand honestly, even that small task takes effort because I wobble so much I end up with an error.. So no weight update today. Iâll shoot for tomorrow.
I spent most of Saturday with a book in my hands. It was quiet, calm, and simpleâand right now, those kinds of days feel like a gift.
Good morning, everyone.
Iâve been on formula feedings for a little over two weeks now, which works out to about 2,100 calories a day. That sounds like a normal diet for the average person, but 8,000 short for an elite competitive swimmer. Right Alex? However, for someone whoâs basically sedentary it seems way too high.
My âactivity levelâ consists mostly of trips to the bathroom and going to my feeding station.
Good morning, everyone.
We had some of my high school friends over yesterday. We had to switch things up a bitâbig restaurants and big groups are tough for me to navigate these daysâso the crew made the long trek from Lake County out to edge-of-suburbia Crystal Lake. And they didnât come empty-handed. Ric, Cathy, Bill, Monica, Carrie, and Chrissy arrived with the full dinner spread: appetizers, salad, homemade lasagna, and dessert.
Good morning, everyone.
Yesterday was a busy day.
I had a massage scheduled for 9:00 a.m. to help work out some serious problem spots in my body. Iâve been dealing with limited range of motion in my shouldersâpicking things up, pushing myself out of a chair, even sleeping on my side has been painful.
Our ALS Clinic care coordinator, Peggy, found a mobile massage therapist out of Woodstock. Itâs a one-person operation run by a woman named Ashley, and she normally works out of her massage van.
Good morning, everyone.
Gratitude
Over the weekend, I received a card from Sandy and Donâhigh school friends of Cindyâs who welcomed me to Crystal Lake when I moved here in 2007. Don and I shared running in common, which made it easy for me to break into Cindyâs network of friends. Over the course of twenty years, we developed a really good friendship.
Don and Sandy moved to Galena a few years back, and we still stay in touchâmostly because Cindy and Sandy always talk.
Good morning, everyone.
Most mornings I wake up on my own, but just in case I donât, I still set a 4:00 a.m. backup alarm. Crazy, right? Well⌠I slept right through until just after 5:00 a.m. That never or rarely happens. And a certain someone who heard the alarm didnât want to wake me. So I met my eight hour sleep goal and then some.
Yesterday I started a new prescription (olanzapine).
Good morning, everyone.
Yesterday we had a sibling lunch with my local brothersâTom, Tim, and Nickâand their spouses, MJ, Shawn, and Jill. The restaurant, a BBQ place in Lake Zurich called Barbecue Productions. We had an early lunch reservation for 11:30 a.m., hoping to beat both the crowds and the noise.
As soon as we parked and opened the car doors, that wonderful smoky, grilled-meat aroma hit us square in the face.
Good morning, everyone!
I tooled around the neighborhood in the beast of a wheelchair yesterday. It was a beautiful, sunny day, and Cindy practically shoved me out the doorâotherwise I wouldâve missed it completely. Itâs far too easy for me to stay inside and avoid the whole production required to get outdoors. A little sunshine goes a long way, and Iâm sure the vitamin D did me some good. Thanks for pushing out of the house.
Good morning, everyone!
ALS just keeps plugging along, and I keep doing my best to manage whatever that means on any given day. Some days it feels like Iâm adjusting to change after change, just trying to keep pace with a body that keeps rewriting the rules.
For instance at my âfeeding station,â in the kitchen. we added pieces of non-slip material on the floor so I can push my chair with my feet.
Good morning, everyone! Letâs talk about pets.
We have a mini goldendoodle named Bear, and he came into our lives during peak Covid. We originally looked at rescue dogsâso was the entire worldâso we turned to a breeder recommended by a friend. We put down a deposit and were told it might be a year before our name came up. As it turned out, it was half that. In December 2020, we drove up to northern Michigan and came home with an armful of curls, paws, and pure joy.
Good morning, everyone.
Wow! Even though I didnât personally see the northern lights the last two nights, the photos have been incredible. Truly stunning stuff.
This morning I get to sit here in the quiet of the house, listening to the owls talk to each other. Theyâve been around for years, and Iâm glad they like our little wildlife buffet of rabbits, squirrels, mice, and whatever else wanders through. Cindy however, would prefer they wouldnât leave their kill on the sidewalk to the house.
Good morning,
I bit the bullet yesterday and got my vaccines, two of them anyways, for the upcoming winter season of sniffles, sneezes, and soup. I got the flu shot in my left arm and the pneumonia shot in my rightâtrying to share the pain equally.
Well⌠thereâs nothing âequalâ about it. The pneumonia shot felt like getting jabbed by a rusty nail, while the flu shot was like a polite tap on the shoulder.
Good morning, everyone!
Happy Birthday to my sister-in-law, MJ! đđđĽł
Sorry about the confusion on yesterdayâs blog postâwhere I accidentally titled it âSunday.â Amazingly, only one person caught it!
My brother-in-law Mark came over and installed the new Nest thermostat. The hardware swap was simple enough, but the software side gave us some headaches⌠thanks mostly to me.
Iâve been using the old Nest app to adjust our thermostat for more than ten years.
Good morning! Welcome to a new week. Hope itâs a great one for everyone.
Cindy went solo to the HOA board meeting yesterday. She gave me an out, and I took it. No need for me to labor through the financials and everything that goes with it. I stayed upstairs, and since I didnât hear any angry voices, I assumed all was well. The meeting wrapped up in just over an hour, and they even identified a possible replacement for me.
Good morning! Welcome to winter. Brrr đĽś
I had to crank the fan on the fireplace this morning. Hard to believe that on Friday I was outside peeling off layers because I was too hot. Now Iâm shiveringâŚthe heat didnât kick on overnight.
Which brings me to my complaint with Google. We have a Nest thermostat that can no longer connect to my phone⌠all because itâs âtoo old.â I was warned this would happen and that Iâd need to buy a newer-generation Nest to continue using the app.
Good morning!
Thanks for all the get-well wishes yesterday. I got past the stomach issues early in the morning, but I was tired the rest of the day. Iâm pretty sure that was the hangover effect from Thursdayâs ALS Clinic visit. Those days are long â physically and mentally exhausting.
We leave home around 11:00 a.m. for the hour-long drive to Glenbrook Hospital, and then weâre squirreled away in an exam room until 5:00 p.
Good morning!
Rough start today.
My mornings usually begin with the same ritualâŚa handful of pills (which are a struggle onto themselves) a few sips of water, and black coffee while I wait the prescribed hour before eating. But this morning, my stomach decided it had had enough. Within 45 minutes, I felt that awful wave rolling in that is made up of nausea, the rush of saliva, the pounding heart, the sudden warmth that makes you want to back away from the fire.
LGood morning, friends and family.
Four hundred and fifty days since this shitty diagnosis. Thatâs a lot of days. The number made me think of the Grateful Dead song Truckinâ and these lines:
Sometimes the lightâs all shininâ on me,â¨Other times, I can barely see.â¨Lately, it occurs to meââ¨What a long, strange trip itâs been. That about sums it up. Most days the light feels warm and steady, shining through all the support and kindness weâve been shown.