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"Looking forward." Has PN taken that away from me, too?

Neuropathy | Last Active: 17 hours ago | Replies (55)

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@ray666

"I know my neighbors wonder why I qualify for disability."

Ah, the ol' invisible pains! They're a plague to most of us. Sometimes when I'm with some chippy chirpy friend who's proposing we climb one of the Rockies 14'ers as we would do only a few years ago (or maybe that was a few decades ago?), I find myself wanting to grap my chippy chirpy friend by the shirt collar and yell, "Can't you see why I can't climb any more mountains? Come on, buddy-boy, do you think I'm carrying this cane just for the laughs?" Of course, I quickly calm down. That's a problem all of us with "stealth" disease have to deal with. To others we look whole and unchanged, while to ourselves we know that we're something less than whole –– maybe only seven-eighths or four-fifths –– and unchanged? Oh, lordy, we are far from UN-changed! If you you could see …

Cheers!
Ray (@ray666)

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Replies to ""I know my neighbors wonder why I qualify for disability." Ah, the ol' invisible pains! They're..."

Good afternoon, @ray666, @dbeshears1, @mob55, @julbpat, @liloldlady, and all who are blessed to find kindred souls here at Connect ~
I've been pondering this business of no longer looking forward to in-person celebrations, get-togethers, and other events that are mostly out of my ability to attend, and there are many! Boy, this topic certainly resonates with me! Like so many of you, in my younger years, I enjoyed some very fulfilling careers and also some extensive travel and really still could, if it weren't for the limitations of my long time and now severe P.N. and some unpredictable digestive tract surprises. 😜 As a lot of you know, in 2022 I experienced extensive lumbar surgery and then hip replacement (this latter from a fall 10 weeks after the back surgery). I spent several weeks in a new, lovely rehab facility which for all practical purposes was more like a luxury hotel because I was a "guest" (their word), not a "patient". Terribly and consistently understaffed, the one thing I LOOKED FORWARD to was getting home!! What I saw as interminable boredom turned out to be a gift from God. Because of that experience, I know that staying independent in my own home is a joyous freedom I look forward to every day. Sure, I have the occasional "blues" from weather changes or this-or-that. But I am content to look forward to keeping up my home, doing a bit of shopping, preparing (or not!) what I want (or don't want!) to eat, getting to set my own daily routine as to when I feel most like exercising, showering, eating, and taking medication when needed, as opposed to having to take it according to a precision-followed time-chart, with no say in the matter. I look forward to being able to maintain a decent social life, -- though mostly on Zoom -- because of aforementioned complications with mobility, etc. In living out this new normal, what I miss the most is the expectation/ability to be reliable and dependable, hence the option of Zoom as opposed to in-person gatherings. I live alone with my sweet lapdog (my husband passed 12 years ago) and I really respect you, Debbie, and you, Ray, for the loving presence that you maintain for the happiness of your husband and partner. You are gifting them the joy of looking forward to giving you outings, things to do, and understanding aid where needed so that you may do these things together. That's awesome for all involved!
Ok, to avoid extensive rambling, I'll wish all of you the very best as adjustments and more adjustments present themselves. I'm with you in it, and I sure appreciate our discussions, suggestions, and topics that come to be shared! Blessings!! ~ Barb

Ray,
I had an incident 6 years ago when I was labeled as not eligible for a treatment because of the physical therapy involved, based on my label “uses a walker”. No test or assessment of ability, just based on seeing me with it. So for 6 years now, I keep my walker in my car when I go to appointments. I use my foldable cane in case I need help with a curb or step as many of my walks into a large complex may be long (SC has a lot of retirees, so especially at doctor appointments, finding handicapped parking is difficult). When I get to the office door, I neatly collapse my cane and put it in my bag, so while it’s not the prettiest walk while being led around the office, there’s no visible evidence of using assistance. (Fingers crossed they don’t make me climb up or down from a tall exam table! I know not to put myself in risk of injury)

I do have a problem with doctors who cut & paste from previous visits or from other doctors’ reports and I sometimes still see “uses a walker” (or cane). So now I make it a point at those visits to say “Note I’m not using a walker or cane” - and point out that I’d like the report to state that or exclude the walker/cane reference since I obviously can walk unassisted.

I am disabled, I can’t deny I am affected significantly by my PN. I know it sounds like a game, but I don’t want to automatically be denied a treatment of any kind that may improve my quality of life. I’d like to at least be able to have a discussion or reasonable assessment of ability to qualify vs a blanket rejection, especially if people are relying on outdated or unreliable notes in other doctor reports.

I find it carries over to my friends and family too. Sometimes I just don’t want to always “look” handicapped, or want to avoid the discussion of health. So I probably contribute to the appearance of being able to do a lot more than I can!