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JMCKUSICK

(4,382 posts) Wed Oct 29, 2025, 07:16 PM Wednesday

A long overdue update

Please accept my apologies for not posting sooner, I've just gotten hammered with one thing after another it seems since I got the news about Rory last week.

First, let me thank you all again for making my trip to MPLS to see Rory possible with your wonderful donations. It was such a struggle to ask because prior to the news about his cancer, I couldn't have envisioned a scenario where I would ask for help beyond my basic needs. So as kind as you have been, please know that I will be sharing as much of this journey with you as is reasonable, all things considered. My primary purpose is to show him all the love he is entitled to, and hope I can inspire a (using a word I invented here more than a year ago,) memoriabration or celememorial, I forget which it was lol, either way, to celebrate his life, as all of us deserve to have the very best of us celebrated and memorialized while the opportunity presents in our lives.
(on a side note, if you've ever read any of my condolence messages offered here, I've always recommended writing a letter of thanks, a personal acknowledgement of his importance in my life and my gratitude for it.)

I will start the actual update with Rory.
I was able, through the wonderful assistance of Lisa in the U of M Alumni Association and Larae, the head of the Gophers Ticket Office, to arrange for 4 seats for Saturdays game against Michigan State University as well as a box of swag so he can get all dolled up lol. His granddaughter, son or daughter and I will be joining him for the game.
His favorite restaurant, Emily's Lebanese Deli in NE MPLS will have a nice dinner for Rory and his family Sunday after church.

I'm really glad these things are happening soon as he is already showing some signs of deterioration. I feel like a lost kid, trying to do what I can without really knowing what that should be. I pushed for these two events, as they are his very favorite things and hopefully his family will step in behind me.

Other than being there for his every whim while I'm there, I just hope I serve him well during this part of his journey, as a listener, a friend, a brother in Christ, and as a representation of the gratitude he has earned from so many through the years. Please send positive vibes, energies and prayers to let this time go well.

As for my stuff, I finally got the reconsideration denial yesterday afternoon. I was on the phone with my attorney filling out appeal paperwork before end of day. We will submit everything tomorrow, and hope that they set a court date soon as that's what we've been waiting for. We have plenty for the judge to consider, including my CT review with the Neuro-Surgeon who made it clear that even my fusion, done April, 2024 while healing well at the top, has not healed on the bottom. When he mentioned that there had been no bone regrowth at the bottom of the fused area, he cautioned that these things take time sometimes. When I asked if a year and a half was time enough? He kind of moved on without addressing the question. We also additional evidence that SS has not received, including a Functional Ability Assessment, (FAA) done by doctors that have determined that my maximum capacity is a three hour workday, if I get the proper rest and breaks for my back.
That doesn't include the Mental Health Assessment diagnosis of PTSD and Chronic Major depression Disorder. The thing that is most paralyzing, (sorry for the pun) is of course the ultimate determination that I have a lifetime of debilitating back pain to look forward too.

There is also the issue that my situation also creates a limitation in that any further surgery at this point will do more harm than good because of all the scar tissue and prior surgeries. He referred me to a Pain Management Clinic where I am to explore the possibility of having a Spinal Cord Stimulator surgically implanted. From what I've read about them, it doesn't seem very smart to try and trick my brain into believing that a new tingle I feel somewhere will be better than listening to my body tell me that this really hurts. What I really hope for from that visit will be an honest evaluation of what the proper dosage of pain meds will be to minimize my agony.
Then on Friday, I got a letter in the mail saying if I'm not working 20 hours a week, I will lose my SNAP benefits until Jan, 1, 2027. The cruelty that is being doled out onto the poorest and most vulnerable in society by this administration is unforgivable. That they want to turn the USA into a Libertarian Utopia is beyond my ability to comprehend, and that no-one is really fighting this head on is shame inducing for those who can.
Of course I will fight this, but it really feels like such an uphill battle that giving up seems a reasonable option as honestly, who would want to live in that kind of world?

For now, I would like to close by offering my heartfelt thanks for your kind words responding to my Good Morning messages, as I assure you, they are so very important to my state of mind and on many days, keep me from despondency. Please know these messages back and forth really do offer healthy nourishment for my self esteem and force me to focus on something positive to start my every day.
I'm hoping to have a court date for the hearing, maybe as soon as I return, but soon enough to offer some degree of certainty for a change, versus all this unknowing that's gone on for the last 26 months.
Thank you again for all of your support, I'll be relying on it a lot over the next 10 days or so.

Love, John