nslade001
Member Since 2018
Hi everyone, I apologize in advance for this excruciatingly long post. It's long, but heartfelt, and I would love some input. I feel like I need input.
We are *considering* switching from TR to SLGS with Willow. This would be a decision based out of consideration for Willow. My personality is the type that I will be equally stressed trying *not* to test her so often, worrying that I may be missing a low number, as I am now stressed dealing with the multiple tests and issues she has; it's a no-win situation for me either way lol. And I'm used to no sleep (we were caregivers for my father-in-law with alzheimers for 8 months, and the man did not sleep!) Although to be honest, it would be nice not to be spending so much on strips as well ($78 per 100 in Canada)...you'll see why in the next paragraph.
The thing is, Willow is getting woken far, far too often with my testing. And as long as I'm running such low numbers, even though I *know* by her patterns and all the data I have, that for example at a point she's just going to float, or that she's only going to drop by a point or two, I also *know there's a risk* and can't help but test again so I don't miss a low and by missing endanger her. And my fear of her dropping is causing me to poke her far, far too often. She cannot sleep through my pokes. You can see by my SS how I test, and some tests are "hidden" in the notes.9 to 10 would be an incredibly rare, good day; I think yesterday was 16?
And it's so very hard on her ears. They hurt, even with the cream. And she knows when we approach, it's likely we're going to be doing something to her. And that sucks. She's not happy.
Along with that is the *need* for her to eat with such low numbers, and as she is unable to eat large amounts of food at once (teeth? inappetence? stomach acid?) she is eating 14 meals a day. And many of those meals are medicated, and we have to wake her to be coaxed to eat most of those meals. And she is inappetent some of the time as well, so sometimes it is a lot of following and encouraging and coaxing when all she wants is to be left alone.
Willow will be 18 in September. I know she may or may not go into remission; my goal is not to get her there, it is to keep her as happy and comfortable as she can be as long as we can. I don't feel I am doing that or can do that as long as I'm running her so low, and I'm not *trying* to do that; she is just tightly regulated. Following the TR protocol runs her low.
(When she's running in the low 3's, and I know she can nadir anywhere from +1.5 to +12, how can I not test?!! I can't not test until I know she's on the rise, and that can take several hours. And I know she can and does dip at +6, or +8 or +9. Wayne and I both need the certainty, and the only way of knowing is testing. And Willow suffers for it.)
Would it be possible to run her higher on SLGS, or is it likely that she'd just be reduced, reduced, reduced to an OTJ trial that she most likely/possibly would fail? Reading the guidelines and knowing her numbers, it seems like she'd just keep earning reductions, but maybe not? And if she's running slightly higher, she wouldn't need to be fed as *hard and often* during onset, correct? Could we feed her a bit more later in the cycle rather than earlier, where we wouldn't be as concerned about higher numbers?
I don't know, maybe if she was able to sleep a bit more, she'd be more rested (obviously lol) and maybe she'd be a bit more inclined to be hungry, because we wouldn't be constantly encouraging her to eat, eat, eat! Or maybe not.
I have zero, zilch experience with SLGS. Does any of this make sense? I'd love some opinions and advice, please. Maybe this is just me copping out? (I say me, but Wayne, who I couldn't do any of this without, is helping me write this!)
I'd love it if you could just keep her in a "safe zone", but I know that isn't how it all works, and I suspect she's just going to keep earning reductions. But of course I don't know.
And I'm sort of tired, so I'm sorry if this doesn't make much sense
She just has so much going on, and it seems like she has so little joy in life any more. We're 6 1/2 months into this, and all we do is push, push, push her, and I don't know if it's necessary. And TR doesn't help, but I don't know if SLGS would either.
Sorry for the novel, and I hope you all know how much I appreciate and admire you! Thank you so much. With love, Nikki (and Wayne!)
We are *considering* switching from TR to SLGS with Willow. This would be a decision based out of consideration for Willow. My personality is the type that I will be equally stressed trying *not* to test her so often, worrying that I may be missing a low number, as I am now stressed dealing with the multiple tests and issues she has; it's a no-win situation for me either way lol. And I'm used to no sleep (we were caregivers for my father-in-law with alzheimers for 8 months, and the man did not sleep!) Although to be honest, it would be nice not to be spending so much on strips as well ($78 per 100 in Canada)...you'll see why in the next paragraph.
The thing is, Willow is getting woken far, far too often with my testing. And as long as I'm running such low numbers, even though I *know* by her patterns and all the data I have, that for example at a point she's just going to float, or that she's only going to drop by a point or two, I also *know there's a risk* and can't help but test again so I don't miss a low and by missing endanger her. And my fear of her dropping is causing me to poke her far, far too often. She cannot sleep through my pokes. You can see by my SS how I test, and some tests are "hidden" in the notes.9 to 10 would be an incredibly rare, good day; I think yesterday was 16?
And it's so very hard on her ears. They hurt, even with the cream. And she knows when we approach, it's likely we're going to be doing something to her. And that sucks. She's not happy.
Along with that is the *need* for her to eat with such low numbers, and as she is unable to eat large amounts of food at once (teeth? inappetence? stomach acid?) she is eating 14 meals a day. And many of those meals are medicated, and we have to wake her to be coaxed to eat most of those meals. And she is inappetent some of the time as well, so sometimes it is a lot of following and encouraging and coaxing when all she wants is to be left alone.
Willow will be 18 in September. I know she may or may not go into remission; my goal is not to get her there, it is to keep her as happy and comfortable as she can be as long as we can. I don't feel I am doing that or can do that as long as I'm running her so low, and I'm not *trying* to do that; she is just tightly regulated. Following the TR protocol runs her low.
(When she's running in the low 3's, and I know she can nadir anywhere from +1.5 to +12, how can I not test?!! I can't not test until I know she's on the rise, and that can take several hours. And I know she can and does dip at +6, or +8 or +9. Wayne and I both need the certainty, and the only way of knowing is testing. And Willow suffers for it.)
Would it be possible to run her higher on SLGS, or is it likely that she'd just be reduced, reduced, reduced to an OTJ trial that she most likely/possibly would fail? Reading the guidelines and knowing her numbers, it seems like she'd just keep earning reductions, but maybe not? And if she's running slightly higher, she wouldn't need to be fed as *hard and often* during onset, correct? Could we feed her a bit more later in the cycle rather than earlier, where we wouldn't be as concerned about higher numbers?
I don't know, maybe if she was able to sleep a bit more, she'd be more rested (obviously lol) and maybe she'd be a bit more inclined to be hungry, because we wouldn't be constantly encouraging her to eat, eat, eat! Or maybe not.
I have zero, zilch experience with SLGS. Does any of this make sense? I'd love some opinions and advice, please. Maybe this is just me copping out? (I say me, but Wayne, who I couldn't do any of this without, is helping me write this!)
I'd love it if you could just keep her in a "safe zone", but I know that isn't how it all works, and I suspect she's just going to keep earning reductions. But of course I don't know.
And I'm sort of tired, so I'm sorry if this doesn't make much sense
She just has so much going on, and it seems like she has so little joy in life any more. We're 6 1/2 months into this, and all we do is push, push, push her, and I don't know if it's necessary. And TR doesn't help, but I don't know if SLGS would either.Sorry for the novel, and I hope you all know how much I appreciate and admire you! Thank you so much. With love, Nikki (and Wayne!)
You're doing a terrific job with Willow! Your dedication, care and love is clear. Hopefully you'll get more answers after the long weekend is over.
