The Quad Queen and I are living in a new world of sorts, a strange unexpected one that has required endless adjustments and adaptations.
And, as such, the blog is now morphing and changing, because I plan to write about our everyday happenings, struggles, and triumphs.
By August 2022, we had it figured out - Karen 99% had ALS. When she started limping last fall, we knew what was coming, sort of, but didn't know what the reality would truly be like. How would we cope? What would happen?
My first inclination was that we should sell the mobile home in Florida so that we could preserve as much of our retirement fund as possible for future unknown needs, but the Quad Queen quickly vetoed that.
"I would rather perish than face another winter in Canada," she said. "And you need it too, you hate winter, and you get massive depression when you're out of the sunlight."
And just like that, my mindset changed. We would live life on our terms as much as possible, and screw ALS.
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| When nothing else is on, you watch mindbending videos. |
Additionally, we started to measure things not in years, months, or weeks, but days. At the end of each day the conversation was 'Did you have a good day today' and usually, the answer was yes. And we still look at it that way and are thankful every day we have a good day or even an okay day.
And this also explains why we went to Vegas 3 times last winter - we knew it would probably be Karen's last trips during which she was able to walk. That has now become true.
So what is life like right now for the Flushers, dealing with this disease?
Well, in April, Karen fought her way up the stairs into the house. I had to push her from behind, holding her ass (which I didn't mind) and making sure she didn't fall. It was horrifying and scary, but we made it.
That would be the last time she ever walked up some stairs.
Limping along, and occasionally falling gave way to her holding my arm, which gave way to a walker, which gave way to a wheelchair.
There is no cure for ALS, and precious few medications available - i.e. 4 of them. They slow down the disease (hopefully), but nothing stops it.
I am happy to report that Karen started on Riluzole last week and she's tolerating it well.
And she is on track to receive the brand new one called Albrioza in Canada, Relyvrio in the US. It's incredibly expensive - like $150,000 USD a year expensive - but it looks like we may be able to get it covered thanks to an agreement with the maker and the Canadian government. We are hopeful she'll get this medication.
A thing called a Hoyer lift is what makes all this work now. There's a sling that I put on her, and it gets attached to the lift. It's bed to commode, commode to wheelchair, back to commode as many times as is needed in a day, and finally back to beddy-byes again.
TV has become a primary source of entertainment, that's for sure.
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| Karen in the Hoyer Lift. Of course, I get the remote. |
A couple of months ago, she opted for a catheter, so that minimizes bathroom trips.
I hope this isn't too much detail, or too depressing - but it's what we are living day in and day out.
And yet, the woman is still laughing, still smiling, still joking. Sometimes we make horrible dark jokes about her condition, and it's part of how we cope.
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| Facemask fitting for a bi-pap, which she doesn't need yet thankfully. But you need to stay a step ahead of ALS. |
Since we got home last April, I've been extremely busy, with a million things to plan, with all the household things, cooking for both of us, and of course the most important thing, taking care of all of Karen's needs. That's why the last trip report took 6 months to complete.
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| The woman is well fed, I can assure you! |
Let me give you a break here and we'll talk about the uplifting part of all this.
We hadn't thought too carefully about doing a fundraiser, but it was in the back of our minds. But as the Quad Queen's condition has worsened, it became clear that I could not keep up the level of care she requires, and still keep my head above water.
We get a couple of 1 hour home health aide visits a day, paid for by the government, but lately, there have been many, many no-shows, due to staffing issues, and to people phoning in sick or whatever. When I'm left to do everything on my own, I get really tired out.
When we go to Florida, there won't be any paid for help.
It became obvious that we needed to hire additional support. And that takes dough. Lots of dough.
So, we launched a gofundme last week to help pay for care, and other equipment needs.
Wow.
Wow wow wow.
The outpouring of caring messages, and the 120 individual donations to the gofundme has been emotionally overwhelming. It has really lifted our spirits.
So many long-time readers of the Royal Flusher blog have come out of the woodwork to say, hey, I'm so and so, I've been reading for years, and I support you and Karen.
Bobby G is running a livestream on Saturday Sept 23 and 7 pm Eastern, 4 pm Vegas time, with a number of special Vegas vlogger guests, and with both Flushiepants and the Quad Queen. Be sure to watch!
And, Vegas Bebe is working on something too to help us out. Stay tuned for updates on that.
Anyway, thank you to all of you that have reached out and supported us. I've tried to make sure every donor gets a special thank you from either Divana (who is doing a stellar job of managing a lot of the gofundme communications and updates), me, or both in many cases.
If I missed you, it's by mistake - thank you from the bottom of my heart for your caring and support.
