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.

artemis1886 | @artemis1886 | Mar 5 9:33pm
In reply to @jobli0 "Why Me? Why NOT Me? I am female and probably quite a bit older than the..." + (show)
@jobli0

Why Me? Why NOT Me? I am female and probably quite a bit older than the other commenters here (I’m 86).

My one brother had a stroke which caused paralysis on his right side and only junk language; he lived with those infirmities for 16 years. My older brother’s wife was diagnosed with ALS and was on a ventilator for about three years. My sister lived in a memory care unit for a number of years after being diagnosed with Alzheimers Disease Therefore, I have to ask “Why NOT Me?”

I was dx with PN and Sleep Apnea in my early fifties; had a TKR at age 72; viral meningitis at age 73; Idiopathic SFN at age 76; CHF with mitral annular calcification at age 81. I have been incontinent since sometime after the CHF and wondered if it was caused by the four cardioversions I had in the following months. I have been using Poise pads 24/7 since the first realization that I was incontinent and had absolutely no sense of an urgency; when I stood up I had a flood. I set an alarm for reminders to go to the bathroom because I still have no hint of having a full bladder. I asked my PCP for a referral to neurology several years ago but was discouraged when it was suggested that the place to start was with urology which seemed like a waste of time. I didn’t figure I had very long to live so I didn’t pursue any referrals.

About three plus years ago I started having severe pain, the worst pain I had ever experienced, in my ankles and wrists which I self identified as osteoarthritis,. At the same time my restless leg syndrome, RLS, was also getting worse. I had been taking medication for RLS for many years and my sleep specialist prescribed gabapentin. By the time the 300 mg dosage was reached all my pain was gone: RLS, ankles, and wrists. I began questioning whether the pain was osteoarthritis or neuropathy.

I started falling about three years ago; in December of 2022 I raised the balance issue & my PCP ordered a head c-t scan. The results showed severe cerebral stenosis. I was referred to neurology and received an appointment for seven months later. I asked the PCP about that date and received a call from a neurological surgeon who explained that the locations of the stenosis reflected redundancies and I should be aware of stroke symptoms and go to ER immediately if I have any symptoms, but it was not of immediate concern. The appointment was changed by neurology for two months later & I was referred for PT which was helpful. The neurologist offered to order an MRI and/or EMG should I choose to have them. I want them to assuage my curiosity, but because of my age, have not requested them. FYI - my mother was just short of 98 when she died. FYI 2: I have told my PCP that under certain circumstances I will pursue VSED, Voluntarily Stop Eating and Drinking; I also have a POLST form on file.

To each of you: have the best future possible.

Jump to this post

My bladder problems were due to small fiber neuropathy. I have the exact same symptoms. I learned that I go to the bathroom every hour whether I need to or not. It has also affected my heart. I have bradycardia/ tachycardia and having a hard time managing my blood pressure (called CAN cardiac autonomic neuropathy) along with gastroparesis (slow digestion). I can go for days without eating. Normally my husband is good about asking me when the last time I ate.

REPLY
jobli0 | @jobli0 | Aug 3 9:41pm
In reply to @jobli0 "Why Me? Why NOT Me? I am female and probably quite a bit older than the..." + (show)
@jobli0

Why Me? Why NOT Me? I am female and probably quite a bit older than the other commenters here (I’m 86).

My one brother had a stroke which caused paralysis on his right side and only junk language; he lived with those infirmities for 16 years. My older brother’s wife was diagnosed with ALS and was on a ventilator for about three years. My sister lived in a memory care unit for a number of years after being diagnosed with Alzheimers Disease Therefore, I have to ask “Why NOT Me?”

I was dx with PN and Sleep Apnea in my early fifties; had a TKR at age 72; viral meningitis at age 73; Idiopathic SFN at age 76; CHF with mitral annular calcification at age 81. I have been incontinent since sometime after the CHF and wondered if it was caused by the four cardioversions I had in the following months. I have been using Poise pads 24/7 since the first realization that I was incontinent and had absolutely no sense of an urgency; when I stood up I had a flood. I set an alarm for reminders to go to the bathroom because I still have no hint of having a full bladder. I asked my PCP for a referral to neurology several years ago but was discouraged when it was suggested that the place to start was with urology which seemed like a waste of time. I didn’t figure I had very long to live so I didn’t pursue any referrals.

About three plus years ago I started having severe pain, the worst pain I had ever experienced, in my ankles and wrists which I self identified as osteoarthritis,. At the same time my restless leg syndrome, RLS, was also getting worse. I had been taking medication for RLS for many years and my sleep specialist prescribed gabapentin. By the time the 300 mg dosage was reached all my pain was gone: RLS, ankles, and wrists. I began questioning whether the pain was osteoarthritis or neuropathy.

I started falling about three years ago; in December of 2022 I raised the balance issue & my PCP ordered a head c-t scan. The results showed severe cerebral stenosis. I was referred to neurology and received an appointment for seven months later. I asked the PCP about that date and received a call from a neurological surgeon who explained that the locations of the stenosis reflected redundancies and I should be aware of stroke symptoms and go to ER immediately if I have any symptoms, but it was not of immediate concern. The appointment was changed by neurology for two months later & I was referred for PT which was helpful. The neurologist offered to order an MRI and/or EMG should I choose to have them. I want them to assuage my curiosity, but because of my age, have not requested them. FYI - my mother was just short of 98 when she died. FYI 2: I have told my PCP that under certain circumstances I will pursue VSED, Voluntarily Stop Eating and Drinking; I also have a POLST form on file.

To each of you: have the best future possible.

Jump to this post

About the time I posted the Feb 18th comment, I realized I was seeing blood in the toilet. By the time I had a colonoscopy on May 28, 2024, I assumed I had cancer, which was confirmed. I was, by the end of May, losing more blood, went to ER and was admitted to the hospital because of severe anemia, and within a week I was released from the hospital to hospice at my daughter's home. To make a long story short, my colon bleeding stopped after I received three units of blood; my hemoglobin went up and I am currently doing fine, at home, with no pain. I HOPE that I will live long enough to vote in the November election, but I know my time is short. I still say, "Why NOT me?" Life may be short or long and we can only do our best to try to make a better world for those who follow us with the time we have. I started a
new thread regarding choosing palliative care rather than cancer treating, if you are interested.

REPLY
1 reply
jobli0 | @jobli0 | Aug 3 9:51pm
In reply to @jobli0 "About the time I posted the Feb 18th comment, I realized I was seeing blood in..." + (show)
@jobli0

About the time I posted the Feb 18th comment, I realized I was seeing blood in the toilet. By the time I had a colonoscopy on May 28, 2024, I assumed I had cancer, which was confirmed. I was, by the end of May, losing more blood, went to ER and was admitted to the hospital because of severe anemia, and within a week I was released from the hospital to hospice at my daughter's home. To make a long story short, my colon bleeding stopped after I received three units of blood; my hemoglobin went up and I am currently doing fine, at home, with no pain. I HOPE that I will live long enough to vote in the November election, but I know my time is short. I still say, "Why NOT me?" Life may be short or long and we can only do our best to try to make a better world for those who follow us with the time we have. I started a
new thread regarding choosing palliative care rather than cancer treating, if you are interested.

Jump to this post

FYI - I have done a fair amount of genealogy and for fifty years I claimed that “everyone in my family dies of heart attacks and strokes.” Mother Nature made a liar out of me! I rejected radiation and chemotherapy because I have had a decent 86 years and choose to end my years without the potential discomfort generally associated with those treatments and surgery was not an option.

REPLY
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