Hello blogging buddies. It’s me popping in with an update. I wish posting were an easier, like back in the days when it was. I confess that it is far from easy. I used to rely on Mr. to help me feel life was easier for things like opening up the Kimchi bottle for the first time. Thankfully, I’m resourceful. I cuss and swear as I use the tools of the trade. Just so I can include some fermentation to our daily breakfast.
I had my own pity party this morning telling Mr., “I miss easy some days…nothing is easy.” He looked at me with empathetic eyes and pulled me in for a hug. I’m humbled as ‘easy’ for him doesn’t come ‘easy’ anymore. So, needless to say, I’ve used the backspace key more than the actual typing a post to you today. My efforts today are less than smooth.
Mr. reminded me, “These days are not easier, they’re better than they were when I first came home.” A chill ran over my spine thinking back to the days of challenges we’ve overcome. It’s like saying goodbye to winter and hello spring. (I snapped this picture (last on my card for February…poor Brian, sorry, just another snowy scene 🤣).
So, anyway, using the backspace key has been helpful today – it lets me get all my whining out. I find it so freeing to press the key and erase thoughts I don’t want to emphasize. I can jump ahead into the parts of life that don’t make me want to cry or give up. I can share with you all the inspiring recaps from another 2-month blogging break created for us/him. Trust me when I tell you, there are days I’m not proud of my impatience and outbursts of frustration. Thankfully, I can burst and regroup without too much delay. It’s like the weather and temps up and down, it is what it is.
Today is cool but sunny. We saw Robins this week. Spring’s arrival is not far behind.
The litany of all the things happening in our lives post-stroke is overwhelming and inspiring at the same time. How is that possible? It takes a constant state of re-framing our minds. And rearranging the house each stage.
This new remodel gives him more room to roam around on his own. He’s learning to navigate his wheelchair which reinforces his memories of independence. Also nice to change the scenery on his own. I love seeing him sit here to dream about what he’ll do outside when the weather permits.
Refractory Epilepsy seizure updates: Our medication tapering process is almost completed. Happy to report nothing is worse by removing Topiramate. Saying bye-bye to the yucky side-effects: skin/rash issues, memory/word finding challenges, crabby moods, and ataxia/balance issues. Resulting in therapy endurance along with happier days. The seizures aren’t gone. They are milder when they come. We’re happy the dietitian approved ketogenic diet approach we’ve been using has helped the process.
As a result, during physical therapy sessions he has shown marked improvements. He went from requiring 2 physical therapy staff to help him walk with a platform walker down to one PT. He ambulates multiple times in (10 m) each PT session. On the parallel bars he can walk with one standby assist going forward and backward. His goal to walk again seems closer each day.
In between therapy days, we practice those skills at home too. He does pivot transfers to the right without assistance. We both struggle with left transfers. Practicing those in therapy so we’ll part ways with the Turner Pro. Hopefully get in/out of the car and sit in the front seat to watch my driving skills.
Thankfully we put the parallel bars at home to use. As well as using our kitchen sink area for standing and practicing squats. A light bulb moment when I realized that I shouldn’t just stand there and watch him as he does them. I started doing the squats with him. He counts off 20 each session.
Then he gets his own cup of coffee!
It’s a blessing that his parents are still alive. They are helping their son learn to walk a second time in their lifetime of loving and caring for him. I truly can’t thank them enough for all the support and encouragement they have given him. Really, both of us throughout this challenging time.
Thank you for your continued support! One of these days, it’ll be easier to blog to my heart’s content. I look forward to reading your comments and your blog posts too!
Thank you so much for the update, Shelley. It’s good to see the progress he’s making. I applaud his work and spirit and your support (and that of others). You’ve both come a very long way. You remain in our prayers and I’m proud to be connected. I was remembering, just the other day, how long you and I struggled to stay connected despite the many WordPress challenges. Take care.
Hi Shelley! It’s great to see you back on your blog and thank you for the updates. Hey Vance, you rock, sir!! Keep on pushing and getting better! It’s wonderful that Vance’s mom and dad are able to help, such a blessing! God bless them and your entire family, guys. I do wonder how things are going, Shelley, thank you! 🙏🏻❤️
Hey wonder woman 🥰 Thanks for the update and it is so good to see how your life is progressing so well, frustrations aside. Glad the dropping of the Topiramate worked OK as the approval for the ketogenic diet. I am guessing your cooking skills have elevated to a new level now.
I found a new technique or opening jars for instance. Do a full exhale, then a deep breath and then exhale hard twisting the lid. It can work well where you need as much strength as you can muster. Give it a go and let me know.
Progress must seem slow in real time but to me and in occasional time, it is phenomenal. You two rock.
Given what I have seen and heard from other bloggers, a bit of snow seems to be the life over there at the moment, so for a last photo, I couldn’t expect less 😁
Thanks for joining in Shelley 😀
I think of the two of you a lot. I’m so glad his parents are still around and able to help. I think of you when things get tough here, and I remember that you’ve been through much worse and look where you’ve gotten to. Still a long way to go, I know, and I recognize the stress you’re still under. I use the backup key when I’m commenting on other people’s posts too. I try to focus on them and their issue or event or thoughts and not insert how it relates to mine.
But you might understand….my husband has kidney cancer I think I told you. It’s spreading now. The pill he’s been on to contain it has stopped working. We think. Anyway he’s just spent a week in the hospital (which I know is nowhere as long as your husband spent) as they tried to figure out what’s going on with him. No real answers, but now there are two spots that need radiation. We’ll set that up soon.
Meanwhile I brought him home from the hospital Friday and man it’s a lot of work, constant, without a nursing staff to help. At the moment i’ve had to give up all my own activities so that I don’t leave him alone. I’m sure we can get help after we know what it is we really need. As it is my neighbors went out yesterday and bought dog food and groceries for us. It’s good to have neighbors.
Anyway…most of the time I’d use the backspace and take this all out. It IS therapeutic to type it. Maybe I should just take it out and limit my comments to congratulations on the progress you all have made.
Which I truly truly mean. Hugs to you from us.
And I don’t know why that came up as anonymous. Sigh. Dawn – from Change is Hard. dawnkinster.wordpress.com
Hello back blogging buddy! It is good to see your post here and get such a good report on Mr. What will be your goal for the two-year anniversary on the first day of Summer this year? A BBQ dinner cooked by Mr. on the deck? I know you will acknowledge that two-year date with something even more to celebrate by then. Your in-laws are a godsend and are to be treasured. Take good care Shelley.
It’s so nice to see your update today, Shelley. Slow but steady progress is fantastic but boy oh boy, do I understand the frustrated venting. I had wrist surgery in January and opening jars can be enough to make me throw them across the room. Write when you can, vent when you want, we’re here for whatever you need. Keeping you and your family in our prayers.
Nice to see another update and your progress, Shelley. And I’m glad to see that your in-laws are around and able to help.
Man, this winter is really hanging on. We’re all ready for warmer weather, and I’m sure you’ll both be happy to get out in the sun, as will we. Spring is coming!
Oh, Shelley, what a time you have had. I have been out of the blogging loop for several years – I am also popping back in…health took center stage and no energy for blogging; as I am sure you understand. Wanted to look you up, as I have seen most of your emailed posts. Your experience adds more depth and meaning to “what a difference a year…or 2…can make.” I’d love to backspace back to 2023.
I am amazed at how you and your husband have kept at it post stroke and what progress has been made. As always, I enjoy your photos and how you incorporate them into a post. Hang in there and take care of you too!
Not anonymous…Andrea at one letter UP. (look what can happen when you’re out of the loop…WP forgets you!)
https://oneletterup.com
While I was reading, I just wanted to hug you and tell you what a wonderful job you are doing!!
I’m late to this post, Shelley, but happy to see that there is always improvement for your husband. I can’t even imagine what you have both been through in this journey. I can understand the whining. I did that on and off when helping to take care of the parents’ needs and I wasn’t living with them. Caretaking is hard, even with the ones you love most, but it helps that the mister has his goal of walking and is trying hard to be independent. I hope and pray for the best and easier days ahead for you both.