Posts

Updates - Well sort of...

Not much new to report condition wise since June 20th. Brian consumes only puréed and liquid things now. Has some pain issues we are dealing with, and most everything happens in his extremely useful multi positional recliner. He takes more meds to control more things and sleeps more often. Meanwhile, I don’t have big answers to questions like “how are you doing”? I go to work all week yet somehow always feel disconnected, vaguely isolated like my interactions are me talking to people from an alternative universe. I know I get to go back to that world eventually, but I don’t live in it now. It’s okay, I need to be with Brian now because he is headed somewhere I can’t follow until the time comes. My heart is with him even when my body is not. People help us so that’s good. Hospice is around some part of each weekday in some way or another. Julia cleans and more twice a week. A volunteer shows up. The house is pretty completely Smart Housed now, using Alexa and I can do everything ...
Post a Comment
Read more

Deeper

Lately, I have felt like I was swimming in mud. Everything is just a weird sort of strain. Mud, however is no excuse to stop swimming. You still need to get to the other side of the lake and enjoy the clear patches of water along the way to stay sane. My mind, usually pretty straightforward is like a spring weed sometimes, with a white fluffy top that kids blow on. I work hard, sure but randomly it can float to things like "I like House of Cards, when do we we get to go on another watch binge?" or "I'm craving a Cosmo, do I make one myself tonight or try to sneak in a happy hour later this week?" (no worries, I have maybe 2-4 drinks a week, you can't drowned all this so why try). A friend leaves a message, I have the hardest time just calling or writing back and talking because, well, because energy, because I don't have much to say sometimes that's any more fun than a root canal so sometimes the House of Cards binge watch works better. I love that...
Post a Comment
Read more

Updates

I have not posted since the Fall and I am doing it now more to update friends on our status these days. A lot changed since that September post. Well, maybe not a lot to most eyes but a lot to ours. After a run in with Radicava, the new drug for ALS Brian got appendicitis, lost some significant strength, and we in general started to settle into the realities of middle stage ALS. We are blessed that  20 months after an ALS diagnosis Brian still walks with a walker, swallows, breaths, and talks without assistance. Brian now lives on the first floor, no more stairs. A friend comes n a few hours a day during the week for lunch. No more driving, and he pretty much choses not to leave the house except for the occasional medical appointment. It’s not that he is depressed, he is just comfortable where he is and prefers not to be out and about to the glances of strangers. Friends and visitors are welcome, stray glances at that guy with the walker doing odd stuff with his hands is what B...
Post a Comment
Read more

Big Week, Long Time, Vacation in Progress...

In some respects, the past week was wretched. Last weekend I got a cold I am still dealing with. I had a stomach thing on top of it but that went fast. It started right after I saw a specialist to tell me for sure that my symptoms with swallowing are from GERD and nothing sinister. He did tell me that, so that was good news. So, I had tried to take a sick day from work Monday only to find out my mom had horrifically been on the floor of her apartment since not long after I dropped her off Saturday. She fell, hit her head, and laid there 36 hours. Remarkably, she broke no bones, was 100% clear of mind and is now a Walker rehab for a week or two only to rebuild her strength from this horrid episode. It was caused by a deadly combo of three factors being a recent cortisone shot to her spine weakening her legs, not wearing her Lifeline because she was changing clothes, and lastly using a cane in her apartment instead of her walker. We are remedying all of that. She is also making good st...
Post a Comment
Read more

It's Just What We Do

It's been awhile since I have blogged. So first for the blunt parts, the tough stuff: In the span of about two weeks in June/ July, one of our dogs Lily, Brian's favorite died and we realized he needed a walker and was no longer safe to drive. Blessed to be ambulatory more than one year from diagnosis as well as talking and eating and breathing okay, these loses were all still bitter pills to swallow and not pills I can sweeten for our consumption or anyone else's. Knowing what will happen and watching it actually occur are different things indeed. So how do we cope? One foot in front of the other, mine strong, his weakening but still moving. Work, housework, animals (our salvation at the moment). You call the ALS Society and get more odds and ends to help. You cope, because it's just what you do. We love the animals we still have so that helps. We love just hanging out with each other so that helps. I went to a movie and to the Cat Video Festival this week with a...
Post a Comment
Read more

Sunday Thoughts

Random thought: I miss normal. I miss when ALS did not live in our every waking moment in one way or another, and some of our sleeping ones too. I had an odd little dream the other night that Brian was being super nasty and I was really confused until I started getting really mad and then in the dream he looks at me and says "What the hell happened?" I replied "Damned if I know". I woke up when we screamed together in the dream. Then, well after a dream like that you get up and do your day and it's just what you do. I've said this before, you live with it and it lives with you and it is what it is, each day. My gratitude for the people in our lives is boundless. You know who you are. I will never stop saying thanks for hanging in with us. Brian and I had a great trip up North and plan to do another in September. It is sooo nice to be in a summer now, no funky weather worries. We have learned to be proactive about any items that are helpful. The four pron...
Post a Comment
Read more

Why I am Blogging Again

Blogging, commonplace as it is now is actually something of a controversial activity. Some feel it's an exercise in self absorbed vanity. It has been said by some that people who have lives don't write or read blogs. I disagree. I think quality and purpose are in the author's hands. There is value in Telling our stories, shavings our perspectives whatever those may be. I have decided to blog again to share parts of our lives with those who care to read about them. I also think that blogging gives me a perspective on things that is good- I relate well to the written word and learn more as I write. What this blog is not is some sort of true life recreation of a sad movie. Nor is it emotional porn. As in anyone else's life, there is good and bad. Life is a terminal condition. What makes our situation special is dealing with a condition that is disabling and having a terminal diagnosis. For a Brian, we know how this story ends not in an abstract but in a specific way. S...
Post a Comment
Read more