1. < Neuropathy

PN: From Anger to Acceptance

Posted by Ray Kemble @ray666, Feb 16 11:14am

Hi, there!

Where are you on the road from anger to acceptance? A Foundation for PN webinar my partner and I watched the other evening got me thinking. I’ve long believed I was fully encamped in my PN acceptance, tent staked and taut, air mattress filled, sleeping bag unrolled, ready for another comfy night’s sleep in my belief. But after listening to that webinar, I’m no longer so sure. If I’m to be honest with myself (and you), I still have moments when I think, “Why me?” (Other than occasionally to my partner, I pretty much keep these moments to myself.)

I was diagnosed with large fiber sensory-dominant polyneuropathy a year and a half ago. I remember when I was first diagnosed, and the neurologist said the two words we least like to hear, “incurable” and “progressive,” my heart skipped a beat. I wasn’t so much angry as I was alarmed: What’s this large fiber whatchamacallit all about? So I studied up on it. I learned all I could. I joined Connect. I bugged my neurologist with lots of questions. So, if only a few days ago, you’d asked me if I’m fully accepting of my disease, I’d have answered, “Yup, fully accepting!”

So, why, then, do I still have these occasion “Why me?” moments? My partner assures me that’s only normal. I suppose it is. I’m still an accepting guy, and all of my friends relate to me as someone who’s come to terms with his PN. (That’s how I’d like them to see me.) But I thought I’d ask: Do others who, like me, believe you’re pretty accepting of your PN still have an occasional “Why me?” moment? Are such moments ones that tell you you’re still not fully accepting? Or, as my partner says, are they merely moments when such fleeting “Why me?” thoughts are perfectly normal? I’m curious.

Cheers to all!
Ray (@ray666)

Interested in more discussions like this? Go to the Neuropathy Support Group.

Leonard | @jakedduck1 | Feb 22 5:20pm
In reply to @michhino "I'm 55. I am a diabetic since 2017 and diabetic neuropathy started with my feet (tingling,..." + (show)
@michhino

I'm 55. I am a diabetic since 2017 and diabetic neuropathy started with my feet (tingling, numb, painful nerve strikes, etc..) in 2018 which nerve damages eventually spread into my calves and thighs plus waist. Until this day(2023), I have been dealing with incurable, unmanaged, uncontrollable diabetes II and painful lower body neuropathy (PM) and not mention ED….

After all the doctors, neurologist, emergency rooms, hospitals, etc.. , plus prescribed medications (pre-gabapentin/gabapentin, Juniva, Metformin, Duloxetine, etc.. I awfully regret to spend thousands and thousands of dollars (Out of Pocket and/or Insurance)…

After 5 years with such conditions and sad experiences, you DO NOT want the neuropathy (PN-nerve damage) to quickly spread and affect your entire feet, calves, thighs, waist and hands as it is an extremely terrible feeling along with very poor state of mind, anxiety, stress, nervousness with daily activities, etc.. And sadly, impotent for the last 4 years and specialized ED doctor(s) want 20K+ to make you believe that they can help with it. I declined!

Needless to say, REAL answer for these serious mental and health complications and conditions were experienced as "NO CURE" !

The only solution was to amputate feet, legs, and hands. I could not live with myself with such decision. I will continue to endure and suffer which I have accepted to convince mind it is a part of the remaining style way of my life. Most importantly, my disability claim was also denied with lawyers and by judge. I was devastated!!!

I am attempting to remain positive with the job market. Currently, unemployed. I adopted a 4 year dog (German Shepherd) to help encourage walking at least 4 times a week which helps body, muscles, and aggravating feet and leg nerves and simply ignore the pain.

My dog is amazing! I seriously regret not adopting dog long ago.

My advice is to eat healthy, "exercise', and most definitely "Save your Money"… and maybe consider a dog to enlighten your spirits!

My prayers are with you …

Jump to this post

@michhino
Unfortunately, I relate to the ED. Have you tried viagra etc?
If the pills don't work there are injections. I like many others use Trimix. Works great.
Jake

REPLY
1 reply
Ray Kemble | @ray666 | Feb 23 11:35am
In reply to @michhino "I'm 55. I am a diabetic since 2017 and diabetic neuropathy started with my feet (tingling,..." + (show)
@michhino

I'm 55. I am a diabetic since 2017 and diabetic neuropathy started with my feet (tingling, numb, painful nerve strikes, etc..) in 2018 which nerve damages eventually spread into my calves and thighs plus waist. Until this day(2023), I have been dealing with incurable, unmanaged, uncontrollable diabetes II and painful lower body neuropathy (PM) and not mention ED….

After all the doctors, neurologist, emergency rooms, hospitals, etc.. , plus prescribed medications (pre-gabapentin/gabapentin, Juniva, Metformin, Duloxetine, etc.. I awfully regret to spend thousands and thousands of dollars (Out of Pocket and/or Insurance)…

After 5 years with such conditions and sad experiences, you DO NOT want the neuropathy (PN-nerve damage) to quickly spread and affect your entire feet, calves, thighs, waist and hands as it is an extremely terrible feeling along with very poor state of mind, anxiety, stress, nervousness with daily activities, etc.. And sadly, impotent for the last 4 years and specialized ED doctor(s) want 20K+ to make you believe that they can help with it. I declined!

Needless to say, REAL answer for these serious mental and health complications and conditions were experienced as "NO CURE" !

The only solution was to amputate feet, legs, and hands. I could not live with myself with such decision. I will continue to endure and suffer which I have accepted to convince mind it is a part of the remaining style way of my life. Most importantly, my disability claim was also denied with lawyers and by judge. I was devastated!!!

I am attempting to remain positive with the job market. Currently, unemployed. I adopted a 4 year dog (German Shepherd) to help encourage walking at least 4 times a week which helps body, muscles, and aggravating feet and leg nerves and simply ignore the pain.

My dog is amazing! I seriously regret not adopting dog long ago.

My advice is to eat healthy, "exercise', and most definitely "Save your Money"… and maybe consider a dog to enlighten your spirits!

My prayers are with you …

Jump to this post

Hello, michhino (@michhino)

I delayed replying because I didn’t know what to say. It’s good––and powerfully sobering––to read posts like yours. I tend to be a Rah! Rah! kind of guy: “Up and at ‘em! Go for another mile! Cycle another twenty! Stop complaining! It can’t hurt that much!” Fellows who, like me, are blessed with a PN that doesn’t come with pain need to be reminded that others of us have neuropathies that DO hurt––and hurt one heck of a lot! It may seem odd to say thank you for your post, but “Thank you.” I’m a more aware person today for your having taken the time to write it.

Ray (@ray666)

REPLY
2 replies
SKY | @michhino | Feb 24 12:31am
In reply to @jakedduck1 "@michhino Unfortunately, I relate to the ED. Have you tried viagra etc? If the pills don't..." + (show)
@jakedduck1

@michhino
Unfortunately, I relate to the ED. Have you tried viagra etc?
If the pills don't work there are injections. I like many others use Trimix. Works great.
Jake

Jump to this post

Hello Jake,
No, I have not yet tried Trimix. I am seeking on the cost since i have no medical insurance. I have nothing to lose at least give it a try.

Thank you!

REPLY
SKY | @michhino | Feb 24 12:34am
In reply to @ray666 "Hello, michhino (@michhino) I delayed replying because I didn’t know what to say. It’s good––and powerfully..." + (show)
@ray666

Hello, michhino (@michhino)

I delayed replying because I didn’t know what to say. It’s good––and powerfully sobering––to read posts like yours. I tend to be a Rah! Rah! kind of guy: “Up and at ‘em! Go for another mile! Cycle another twenty! Stop complaining! It can’t hurt that much!” Fellows who, like me, are blessed with a PN that doesn’t come with pain need to be reminded that others of us have neuropathies that DO hurt––and hurt one heck of a lot! It may seem odd to say thank you for your post, but “Thank you.” I’m a more aware person today for your having taken the time to write it.

Ray (@ray666)

Jump to this post

Thank you Ray.

You are a wonderful person and love your comments. As I said, I will continue to remain positive and not give up regardless.

Have a nice weekend!

REPLY
1 reply
Ray Kemble | @ray666 | Feb 24 9:01am
In reply to @michhino "Thank you Ray. You are a wonderful person and love your comments. As I said, I..." + (show)
@michhino

Thank you Ray.

You are a wonderful person and love your comments. As I said, I will continue to remain positive and not give up regardless.

Have a nice weekend!

Jump to this post

Thanks for your kind compliment, @michhino. I wish you the best possible weekend, too! –Ray (@ray666)

REPLY
reno10 | @reno10 | Feb 24 10:02am
In reply to @ray666 "Hello, michhino (@michhino) I delayed replying because I didn’t know what to say. It’s good––and powerfully..." + (show)
@ray666

Hello, michhino (@michhino)

I delayed replying because I didn’t know what to say. It’s good––and powerfully sobering––to read posts like yours. I tend to be a Rah! Rah! kind of guy: “Up and at ‘em! Go for another mile! Cycle another twenty! Stop complaining! It can’t hurt that much!” Fellows who, like me, are blessed with a PN that doesn’t come with pain need to be reminded that others of us have neuropathies that DO hurt––and hurt one heck of a lot! It may seem odd to say thank you for your post, but “Thank you.” I’m a more aware person today for your having taken the time to write it.

Ray (@ray666)

Jump to this post

Why the 666 in your profile name?

REPLY
Ray Kemble | @ray666 | Feb 24 12:51pm

Hi, @reno10

I dunno. Easy to remember? Childhood address? Adds up to 18 … not that that means anything? 🙂

Ray (@ray666)

REPLY
1 reply
centre | @centre | Feb 25 11:13am
In reply to @ray666 "Hi, @reno10 I dunno. Easy to remember? Childhood address? Adds up to 18 … not that..." + (show)
@ray666

Hi, @reno10

I dunno. Easy to remember? Childhood address? Adds up to 18 … not that that means anything? 🙂

Ray (@ray666)

Jump to this post

Ray- I think the question re your 666 is wondering if it’s a biblical reference- New Testament, Book of Revelation 13:18, 666 is the mark of the Beast.
In our small town, a new homeowner came before the Town Council to ask that her street number be changed from 666 to 665 1/2, they said no. Reading our little local newspaper, I wondered if she decided to move, some people feel very strongly about things like that.

REPLY
1 reply
harley22 | @harley22 | Feb 25 11:19am
In reply to @bettyg81pain "Absolutely I feel that way! Had to give up all of the group activities that I..." + (show)
@bettyg81pain

Absolutely I feel that way! Had to give up all of the group activities that I enjoyed so much because
I never knew if my feet/legs would be so painful that I could not participate-Tramadol still makes me a little loopy.

Jump to this post

I’m the same way as you.
I take the Tramadol in the evening when I sit to watch tv.
By that time I’ve had enough pain in my feet and I’m ready for relief.

REPLY
harley22 | @harley22 | Feb 25 11:21am
In reply to @njed "Ray, I totally agree with your comment about the pain. I've been told that with my..." + (show)
@njed

Ray, I totally agree with your comment about the pain. I've been told that with my PN, there is no medication to reduce symptoms. In the past, my primary offered to ship me off to PT but then I run across the scenario that if I don't improve in PT, the insurance will not pay. Ok Ed, you need to stand on one foot with eyes closed for 6 seconds. Really, I can't stand on 2 feet with eyes closed for 6 seconds. Yes, frustrating.

Jump to this post

Either can I and do I really need to walk backwards?
I can’t even walk forwards!

REPLY
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