Good morning, everyone.â¨2 days until Christmas. đ
No major changes in the feeding tube saga. Outside of Peggy, our care coordinator, Iâve had little sense that anyone truly cares about our situation. I wrote my G.I. doctor, in the morning, expressing my frustration and disappointment with the new feeding tube and received the following response late yesterday afternoonâŚfrom one of his registered nurses:
_Hi Mr. Snarski,
I apologize that this happened.
Good morning, everyone.â¨3 days until Christmas. đ
Cindy and I want to say thank you to all of you who have been thinking of us this holiday season. Youâve been stepping up in so many ways since this diagnosis, and over the last month youâve taken your thoughtfulness to the next level. Packages have been appearing at our doorstep so frequently that Bear doesnât even bark at the delivery people anymoreâhe just assumes they live here.
Good morning, everyone.â¨Four days until Christmas. đ
So⌠back to my feeding tube exchange on Friday. Turns out itâs a little more involved than swapping out a propane tank at Ace Hardware.
Cindyâs sister Barb came along with us to Glenbrook Hospitalâpartly to support Cindy and partly to help schlep me around. Everything takes more effort these days, especially when winter decides to remind us whoâs in charge.
We arrived early, and the O.
Good morning, everyone.â¨5 days until Christmas! đ
Well, it turns out I had a technical glitch this morning and when I went to paste my story into this blog, I deleted it. No time to start over.
Long story short, I have a new feeding tube. Iâm going to give it a go this morning and I should get back to regular feeding schedule and move on to other things.
Good morning, everyone.â¨6 days until Christmas! đ
Iâm not exactly sure who to thank for yesterdayâs Jevity delivery. A few people stepped in to order formula to help bridge the gap while we wait for our Medicare supplier to deliver just-in-time inventory somewhere between Christmas and New Yearâs. So thank you, Kim⌠Nikki⌠or whatever helpful elf made it happen. Much appreciated. đ đź
Yesterday was massage day with Ashley from Sullivan Mobile Massage and Spa.
Good morning, everyone. One week until Christmas. đ
When I was diagnosed with ALS, I did some basic research. I didnât know much about the disease and had never known anyone who had it. I was aware of the Ice Bucket Challengeâthat was about it. My first real exposure came from the movie The Pride of the Yankees, starring Gary Cooper. Itâs worth watching if you want to understand Lou Gehrigâthe baseball phenom and his unmatched character.
Good morning, everyone.â¨8 days until Christmas! đ (got the math right today)
My sister Maria and her husband Pete stopped by yesterday on their way back from Florida to Minocqua. Somehow, I had it in my head that they were simply driving through the Chicago area. Why else would you stop in Crystal Lake, right?
They arrived right at 2:00 p.m., loaded down with packagesâincluding dinner. I mistakenly thought I heard Jordaniancuisine, but it turned out to be Georgian food⌠a pretty big difference.
Good morning, everyone.â¨11 days until Christmas. đ
Surgery is scheduled for this Friday to replace my feeding tube. It turns out these tubes have a useful life of about six months. Iâm right at the edge of that window, which explains why it keeps failing. I just wish the GI specialists had given us a heads-upâwe could have replaced it sooner and avoided doing this right before the holidays.
Good morning, everyone.
Happy 67th Birthday, Ric! đĽłđđŻđž
This morning got off to a rough start. Had Cindy not gently nudged me awake, I might have slept right through my self-imposed publishing deadline. Yikes.
Yesterday, I finished Cry Havoc. Itâs a thriller set in Vietnam around the Tet Offensiveâwhen the course of the war shifted decisively in favor of the North Vietnamese (not that the U.S. ever truly stood a chance of winning).
Good morning, everyone.â¨11 days until Christmas. đ
Yesterday, Cindy cleared out the furniture from the main floor that would hinder the wheelchair, with some much-needed muscle from Mike H. Where did it all go? The basementâŚwhere everything eventually ends up. Iâm honestly surprised there was room, although I have no idea what the basement hoarderâs den looks like anymore. I havenât been down there in nearly a year. No matter.
Good morning, everyone.â¨12 days until Christmas. đ
If youâve been paying close attention to the details of my blog, you may have noticed that I sometimes mix up days of the week and dates⌠more than Iâd like to admit. Like yesterdayâwhen I was convinced it was Friday the 13th.â¨Wrong!!
So anyway⌠please pay no attention to that man behind the curtain. I also try to recognize birthdays here on the blog, and thatâs a little hit-or-miss as well.
Good morning, everyone.â¨12 days until Christmas đ
Yesterday, the cleanup continued from Tuesday nightâs formula debacle. We have a large rug in our bedroom that once lived in my parentsâ living room at 1922. Our bedroom was the only place it fit in our townhomeâand we figured it would be safe from spills and food. Well⌠until now.
I had a nagging feeling that something was eventually going to go sideways with the feeding pump in our bedroom.
Good morning, everyone.â¨14 days until Christmas! đ
Last nightâs sleep worked out perfectly. We went to bed a little anxious after the recent feeding-tube âleakingâ eventâthe one that left formula soaking the rug, the floor, and the HVAC system. Honestly, we shouldâve called a disaster-recovery team. That stuff dries stickier than Elmerâs glue.
This time, though, the pump didnât finish early. We adjusted the rate downward, and by 4:00 a.
Good morning, everyone. Todayâs post is about gratitude⌠and a gaffe.
Yesterday, my triplet brothers, Tom and Tim, stopped by for a visit. As luck would have it, they arrived at the exact same time as Stephanie, my PT. My brothers were looking for things to do, so Cindy put them to work on a handful of small tasksâjobs she wouldâve had to tackle later herself. That alone was a gift.
Good morning, everyone. 16 days until Christmas. đ
Itâs been a week since I started the overnight pump feedings, and so far my body is tolerating it surprisingly well. Iâm essentially doing the equivalent of two feedings while I sleep, with a third one midday. Itâs much easier to stay compliant with my required nutrition this way instead of trying to carve out three separate times every day. HeckâŚI never ate three times a day even before ALSâŚI was a lifelong lunch-skipper.
Good morning, everyone.â¨17 days until Christmas. đ
Yesterday was a tale of two halvesâŚproductive in the morning and puddles in the afternoon.
Late morning we had a full-blown Christmas-card brigade assembled: Cindy, Barb, Mark, Geoff, and Kristin all gathered around the table pens and envelops in hand For as long as I can remember, Christmas cards have been my job. Being left-handed, I always avoided smearing ink by running the envelopes through the printerâŚmy clever workaround.
Good morning, everyone.
Today marks 84 years since the attack on Pearl Harbor, âa date which will live in infamy.â We owe the men and women of this era so very much. Thank you for your service.
The downstairs powder room has always been the one space I resisted modifying. Maybe that sounds silly, but holding on to something ânormalâ has mattered to me. One untouched room felt like a small victoryâŚa way to slow the march of ALS inside our home.
Good morning, everyone.
Letâs talk red.
We had so many holiday traditions over the years../some new, some old, and some fleetingâŚbut what mattered most was that we celebrated them together. For so many years, Christmas at 1922 was the anchor. The siblings who lived outside the Chicago area would pack up their families and stay nearly a week. Going from a household of 10 to an extended family of almost 30 wasnât just âa little moreâ chaosâŚit was exponential chaos.
Good morning, everyone.
My neck has been giving me more and more trouble lately. Iâve tried PT, Iâve tried various neck braces, posture devices, pain-relief gels, TylenolâŚbasically, if Amazon sells it, Iâve probably ordered it. Nothing has brought real relief, and little by little Iâve found myself folding forward. At this point, when I walk, all I can see is the floor. If I want to know where Iâm actually headed, I have to peek over the top of my glasses⌠and only for a second or two before gravity pulls my big fat head right back down.
Good morning, everyone.
Letâs not talk about ALS, letâs talk about stockingsâŚnot just any stockings, but Christmas stockings.
Growing up, my mom, whom I called Sally, hand-knitted every stocking that hung by our fireplace. They were all identical except for the name stitched across the top, and to us, they were perfect.
As kids, we had a Christmas Eve ritual. Each child would hang their stocking on the line using a clothespinâŚone at a time, from oldest to youngest.