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'23 - The Adventure Continues ;)

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sKePTiKal:
So, B started a week's trial of the spinal stimulator on Wednesday. Only the leads (there are 12) are surgically implanted. And by Thursday, it was clear that another big chunk of pain had been lifted from him. :D  My energizer bunny is back!

The manufacturer's rep calls to check on him every day. We're going to try to expedite the appt for the full implant starting today. It's going to require driving into the big city again, but Hol said she'd drive. S understands her time/energy in support... B is really helping, even before getting the pain relief. And we're happy. This is the absolute easiest new relationship ever.

It's not lost on me, how much acute pain impacts the brain, and also the psychology of a person. And of course, people have reacted to B's struggle to live with it. Telling him all kinds of inaccurate & unkind things - attributing it to his character & personality... when he was simply coping and trying to live life, the best he could. For whatever reason, I could see him beyond all that -  and he's demonstrated his real self enough times  to me (and Hol) that we're truly impatient for him to finish up getting all his pain relief so we can start doing some other things. More fun things!

It's satisfying to watch the tangled mess of bureaucracy he's dealt with for years, finally get untangled and have the treatments delivered that he knows works. He is the last surviving member of a 10 person trial of this pain mask treatment, organized shortly after he was injured. He was told he'd never walk again, but that didn't work for him, and he proved those docs wrong in a couple of months. 30 years later, he's still pushing forward - one step at a time.

I'm spoiling him, as much as I can. It's going to be awful for him, after finally feelng this much relief - to have the temporary stimulator removed and then wait for the surgery appt. But we'll get through it; we'll figure out a way to keep his mind distracted, as much as possible. Looks like he'll be staying through March, this time. Maybe April. He can't believe I've stuck with him, these years, fighting through the tangles & confusion & days he just couldn't tolerate the pain...without going all demanding & selfish & blaming him, for what he can't control. He's had a series of crappy relationships and fly by night friends. I'm just a bit weird; different than that. It's not the way either I or Hol live; we're more choosy about the recipients of that loyalty these days. Reciprocity - not in a balance sheet fashion - but reciprocity of giving/caring is a requirement.

All in all, things on the farm are pretty good this spring.

lighter:
That's all good, Amber.  What a relief to read B HAS a solution, appt and support for pain relief implant.

I see you're focused on the relief and forward movement....as you should be.  Well done.  Amazing and fantastical, considering the roadblocks you guys have overcome.

I'm praying this implant delivers all the relief and motion possible for B.

It looks like you're going to have a very productive Spring🌱🌻🐝
Lighter

Hopalong:
I am awed, just awed.
And so happy for you and B.

The idea of that man getting out of the pain that has tormented him for decades is just joy.

I'm sorry about the necessary painful interval but he is so so so lucky to be going through all this with your deliberate and enlightened and detailed support.

Brava, brava, brava!

hugs
Hops

Hopalong:
Amber, this article is heavy and hard, but you and B will completely relate to the parts of it about the VA. And probably other elements.

It might be triggering so y'all may choose not to read it, but I thought about B's VA experiences as I read it. In some way it might feel empowering and validating for you both to read it, which is why I share it.

https://www.nytimes.com/2023/02/21/magazine/ian-fishback.html?unlocked_article_code=m9UTl2EpbUNZic3A0yTjtXW_dTZrAG47HRGMBnsaEDQQvTNfbZHFHjz84nIEvEvp9UyvoJ6s57n0FAAyMuAXQRgSZ7rhibFJ9mzb4xnX4kl9BliZzsuhXFPzTV2g584uwEow7mwNRq6Wh5_eNu163qCe68DHAOCdIRyIiV_iwzXCOGRLnUrIQKqUjIRmj3b4tH6xq10-wL-4fDMH8GlLlij4APDmXnrXaTLAJPQte_kKH2Tyop8620WQ6-wfmUj1RD5fgIWu3LwSjpCPDLNtLKc3NbjO6KJzkvR_97HT87ihX9FyzDDkNXD5W9gfGLgzo3o9WqwbVA&smid=url-share

hugs,
Hops

sKePTiKal:
Yup, that's actually B's experience with the whole healthcare for veterans system, too. But one of the things that jumped out of the article at me - is the cognitive dissonance between "words being said" -- and the actual experienced reality, both in/out of active duty. There is an entire novel to be written about the level of obfuscation of this "caring" (HA) institution and how veterans are treated by the same gov't that promises them the world in benefits, for putting their lives at risk so the politicians don't have to fight their own fights.

Then, there's the issue of the type of care offered - if you provide feedback to them, that it's not helping or creating new, additional issues (particularly in the realm of Rx's) - then, you are effectively "resisting" and "refusing treatment". Essentiallly, the system is denying the patient any agency of their own body, mind and told not to question the so-called "treatment".

His current team of surgeon, NPs and nurses are at the other end of the spectrum. We like them a LOT; he can talk to them & ask questions and receive answers that are helpful. The bureaucracy side of things is still the trickiest for him. Any little hiccup, and he is convinced that all the same bad treatment is happening again. I refuse to let him settle into that black hole... and he owes me $20, since I bet him he'd have a surgery appt before Friday (yesterday). I mostly interact with the staff on all that kind of thing... and I made it a point to explain that a long duration between the test stimulator relief (which was very impressive) and the surgery for the implant would be excruciating -  the pain amplified, by recent relief. It's basic psychology and human experience, ya know?

So yeah, we drive to MD again for the implant surgery on 3/17. If the insurance doesn't approve the permanent surgery... we'll know 2 days prior to that date. Hol is driving because of DC traffic... and that lets me focus on him. It's a whole brand new experience for him, to have this kind of support and advocacy... and it's having a positive impact on his attitude toward a lot of things. I see him opening up more and interacting with friends more than ever before. He's got a lot to contribute.

And that week he rated his pain level a 1 instead of 8-9... (during the test)... he practically beamed in amazement. Everything about him relaxed, his gait smoothed out, even his hands didn't hurt (and yeah, he still has arthritis in his hands).

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