Originally Posted by
fini 
Robby,
your posts here in this thread have been on my mind.
some of them took me back to about the time i started here, when you were getting ready for the amputation (i do believe you're the first person i ever responded to here in a post).
and back then, you were concerned too about opening doors, uh, no: about doors blasting open onto old stuff, anger and such from way back.
i remember, after your surgery, looking for you to address what you'd done with that, how you'd actually "handled" it, if it happened as you feared it might...but i don't think you talked about that part after your surgery.
just thinking that some of what you did/had to do to prepare for that situation, whatever helped you get through, might be helpful now, too.
whatever you did to not get screwed up there....can you draw on it now?
other than that, being either/or triumph/fail type person ...well, i tend to be that, too, and that makes everything harder for me, usually. and often, actually almost always, those are not the only ways or options.
in any case, just to say hi, and sorry you're dealing with all this ongoing.
Thanks for that, fini. I'm appreciative.
Yeah. I was concerned, and yes, eventually things have caught up to me in different ways. Although the amputation remains successful, I've had some complications with my spine and my post-polio resulting in an ongoing debate with my medical team as to what is what with my present condition. They are speaking from what they observe while I speak from what I am experiencing post-surgery and my medical history. The bottom line for me is likely I'm going to be looking for a new medical team going forward. This is not an easy task so I'm hoping to avoid this, and this avoidance of my responsibility is making me additionally angry and anxious. I'm not an easy patient to deal with I suppose, lol.
These physical complications can and will all be eventually addressed since I won't give up what I have accomplished already to simply take my place and grin and bear it, as has been suggested I do from my team.
I just had an MRI scan done last month or so, and this I demanded against my doctors opinion. Give me the scan or else I walk was really what it came down too. This argument is happening because they are concerned I'm not readily accepting my post-polio syndrome accounts for my quick decline into a wheelchair. I'm concerned they are not being smart or even professional in not first ruling out everything else and whatever is left, this would then be sufficient for a case for post-polio complications. I want exhaustive testing, they want moderate testing. I'm opened minded, they have concluded their considerations for the most part, and so we have an awkward situation.
What is clear to the team is I'm proactive in my medical well-being. I come to them with challenges, and they provide the ways and means to accomplish these. This includes two elective amputations one in 1983 and the last one in 2012. As well, the hip-fusion being undone in 2012 was also elective. It is no small thing that I was written off decades ago by various medical opinions to just things as they were and accept my limitations and the pains of life for a so-called disabled person.
I'm not entirely surprised with their attitude. They certainly are not surprised with mine. Its unfortunate our team is going sideways, and yet, this might have to play itself out so as I can seek out better opportunities with a more informed team. The way things work of course is only one team at a time, lol.
I'm inpatient to get going. I'm angry with myself not because things are going sideways, but because I am having an impossible time with being apathetic with my progress. I'm feeling very dragged down by the responsibilities to always bring a better idea to the table than I had before. What worked before doesn't always work going forward, and in this way I've had to open doors onto my past which I'd rather keep shut.
This new helplessness is not something I'm going to accept until I'm absolutely positive I must. If I accept it before all my cards are played, I'll be doing myself a great disservice -- and -- this kind of helplessness is exactly of the same type that created opportunities for me to drink in earnest as a 12 year old. Its complicated. And although I'm advised to be simplistic in my mindfulness of the whole deal, simplicity is not what I need here and now for any of this, and this then makes it difficult for me to share what is what because so much is going on at the same time I really haven't been able to sort it all out to share so as others can readily comprehend me as I am now.
I'm not an easy guy to help, in case that is not already known, lol.
So, since I'm refusing to accept this (new) level of helplessness, I'm often told I'm causing my own problems with my attitude of non-acceptance. Its unimportant I'm being told. What is important is when others take little pieces of me out-of-context with my entire backstory, and with these little outtakes they then go on to advise me. I'm not surprised I'm deaf to their assertions I'm my own problem in all this. I will not as yet accept I'm just another victim of advanced post-polio syndrome. No way.
And yet of course, reality goes forward. Whatever is causing my physical weakness, the weakness is real enough. So is the pain physically, mentally, emotionally, and so on and whatever.
As I type this, I guy is installing a chairlift in out Lincoln home, lol. I have a complete elevator solution in our Ottawa home. I have several wheelchairs and a scooter. I'm loaded for bear, hahaha.
Yes, fini. I absolutely can draw on what makes me me. I'm struggling to be sure but I'm far from being sunk, as you already know if you know me
Thanks again, good friend.