First peripheral neuropathy … and now a sepsis infection? $%*&#@

Posted by Ray Kemble @ray666, May 12 9:37am

Hello!

I’ve been AWOL from the Neuropathy Forum for a while, for 42 days to be exact, from the morning I was taken to the hospital to be diagnosed with a galloping sepsis infection. A few of you may remember me as the 79-year-old fellow in Colorado who, for the past ten years, has been dealing with idiopathic polyneuropathy.

Why am I returning to the Forum this morning? First, I want to say hello after having been away so long, especially to those with whom I have regularly exchanged posts in the past.

Second, to ask if other PNers have suffered with the double whammy: an ongoing struggle with PN, later exceeded in misery by a nasty sepsis infection. What was the experience like? What was your pre-existing PN? Cause of your sepsis? What were your sepsis symptoms? Have you recovered from your sepsis? How long did it take (if you’ve recovered)? Do you consider your sepsis recovery full, partial, or ongoing?

I look forward to any who have or are experiencing what I’m experiencing.

Cheers!
Ray

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

@njed

@dbeshears1 - Debbie - Wow...you are a list maker as well. Nothing goes on my list that I can't do however, I' will put some things on my list that I might be able to do. Call it a challenge. I made a list this AM of things I need to do today, two have a question mark. For me, it means give it a try. We all have good and bad days with PN. If I can't do it, I'll then put it at the top of the next day's list and yes, with a ? For me it makes me push a little beyond my comfort zone yet being safe. No second-floor window washing from a ladder, you get the drift. Keep crossing things off and smile, accomplishments are important and if you don't get to it today, there is always tomorrow. Stay well, keep moving.

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Ed - You are so right! Everything on the list must be attainable or on the list because you need to call someone to hire. A few years ago, I took my list of Goals to my PCP. The #1 item was “Get Off Disability and Get Back to Work”. I obviously wanted my income restored to employment level but the general gist was I wanted to be healthy enough and also wanted to contribute to society. My PCP stopped me on #1, squelched it right there, and instead helped me break it down into bite-size, realistic, attainable items. It is a big mental boost to see how what things we can and are achieving!

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@ray666

Good morning, bjk3 (@bjk3), Debbie (@dbeshears1), NJ Ed (@njed)

List-Makers, Unite! It gives me a boost to wake up a bunch of kindred spirits.

I will confess, however, that some years ago, I refined my list-making; I was once like so many people and, during a single day, would create a half- or full-dozen “micro” lists: little bits of paper scattered here and there, around my house, on the front seat of my car, jammed in my pockets, inked on the palm of my hand – wherever I’d turned, there’d be another micro list. At day’s end, I’d have all these little reminders of how much I’d NOT gotten done.

I now adhere to what I call Ray’s Principle of One – ONE of each day’s necessary things: one journal (with one good pen attached), one book (whatever I may be currently reading, fiction or nonfiction), one periodical (e.g., the latest New Yorker), one book of poetry (to sustain my spirit; at the moment, it’s the Collected Works of Wendell Berry) – and one SMALL spiral book which houses the day’s micro lists, all side-by-side in one master micro list. (Master micro list? Mmm?)

So again, List-Makers, Unite! Let’s get this day underway. Let’s whip through the day’s lists and look forward to an evening of knowing we’ve gotten everything done. (Or almost everything, anyway.)

Cheers!
Ray (@ray666)

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@bjk3 , @njed , @ray666 My daily routine starts with coffee in bed, checking my electronic gadget stuff, which includes this Mayo Clinic Connect group, watching our mentors and administrators trying to herd us cats. I have my electronic list from yesterday that I change to today’s date, hopefully adding less than I was able to remove as completed the day before. I reorder based on what my body says; today it’s telling me sunshine at the pool. I think it’s important because it’s the only way I’ll be able to keep assessing when the water will be warm enough to get in and do some water exercises 😅😅😅. Have a good day!

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@dbeshears1

@bjk3 , @njed , @ray666 My daily routine starts with coffee in bed, checking my electronic gadget stuff, which includes this Mayo Clinic Connect group, watching our mentors and administrators trying to herd us cats. I have my electronic list from yesterday that I change to today’s date, hopefully adding less than I was able to remove as completed the day before. I reorder based on what my body says; today it’s telling me sunshine at the pool. I think it’s important because it’s the only way I’ll be able to keep assessing when the water will be warm enough to get in and do some water exercises 😅😅😅. Have a good day!

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Hi, Debbie
I applaud your morning discipline—I really do. It's generally the evening before I get around to checking Connect, which means I very often have a tough time following the path of a day-long conversation.
Ray

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@dbeshears1

Ed - You are so right! Everything on the list must be attainable or on the list because you need to call someone to hire. A few years ago, I took my list of Goals to my PCP. The #1 item was “Get Off Disability and Get Back to Work”. I obviously wanted my income restored to employment level but the general gist was I wanted to be healthy enough and also wanted to contribute to society. My PCP stopped me on #1, squelched it right there, and instead helped me break it down into bite-size, realistic, attainable items. It is a big mental boost to see how what things we can and are achieving!

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Debbie, that's a great topic in itself: What's your No. 1 Goal? It's too easy to say To get better, To feel well, or To get up and about and not spend the day feeling sorry for yourself. Your post got me thinking: What's MY No. Goal for today? I've decided it's To be cheerful. I began the day grumpy. I didn't like being grumpy, Who can change that? Only me. So that's my No. 1 Goal for today: To live wholeheartedly. Not only will the people around me be better off for it; I'll be better off for it, too. 🙂 –Ray

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@ray666

Debbie, that's a great topic in itself: What's your No. 1 Goal? It's too easy to say To get better, To feel well, or To get up and about and not spend the day feeling sorry for yourself. Your post got me thinking: What's MY No. Goal for today? I've decided it's To be cheerful. I began the day grumpy. I didn't like being grumpy, Who can change that? Only me. So that's my No. 1 Goal for today: To live wholeheartedly. Not only will the people around me be better off for it; I'll be better off for it, too. 🙂 –Ray

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Ray - I read today’s new Spotlight interview and it had a good message of reminders for me.

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@dbeshears1

@bjk3 - You and I have shared so many similarities in our journeys and you’ve reminded me of the realities we face. I can’t help but to keep a To-Do list (formal) or I’ll forget things! I often think of what @njed coached - Focus on what you CAN do, not CAN’T do. So when I see what things are still on my “list”, I am not so bothered because of the thankfulness I have for the things that got crossed off of it. As you said, budgeting our energy for long term survival is key, so we do this one step at a time! I hope you’re moving along well!

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Good morning, Debbie. 🌞 We sure have had similarities, haven't we? And that "to do" list is my sanity keeper, as well! When I still see things on my list that have been "deferred", shall we say, I am, like you, "not so bothered because of the thankfulness I have for the things that got crossed off." (Your wording of that thought was PERFECT!!) I've always been a list-keeper on some level but now it is "reminders on steroids" 😉. From what I can gather from everyone close to my age (77), this is common, if not normal, and that eases the gut-wrenching fear of accelerated cognitive diminishment.
After the experience of being in rehab for several weeks a couple of years ago, I am now elated to wake up in the morning and actually HAVE a to-do list to work on, rather than sitting around all day unable to do much of anything except the P.T. and O.T. sessions five days a week. Thankfulness abounds, and it is sites like this and people like you that elicit that are the reason!

Blessings, Barb

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@ray666

Good morning, bjk3 (@bjk3), Debbie (@dbeshears1), NJ Ed (@njed)

List-Makers, Unite! It gives me a boost to wake up a bunch of kindred spirits.

I will confess, however, that some years ago, I refined my list-making; I was once like so many people and, during a single day, would create a half- or full-dozen “micro” lists: little bits of paper scattered here and there, around my house, on the front seat of my car, jammed in my pockets, inked on the palm of my hand – wherever I’d turned, there’d be another micro list. At day’s end, I’d have all these little reminders of how much I’d NOT gotten done.

I now adhere to what I call Ray’s Principle of One – ONE of each day’s necessary things: one journal (with one good pen attached), one book (whatever I may be currently reading, fiction or nonfiction), one periodical (e.g., the latest New Yorker), one book of poetry (to sustain my spirit; at the moment, it’s the Collected Works of Wendell Berry) – and one SMALL spiral book which houses the day’s micro lists, all side-by-side in one master micro list. (Master micro list? Mmm?)

So again, List-Makers, Unite! Let’s get this day underway. Let’s whip through the day’s lists and look forward to an evening of knowing we’ve gotten everything done. (Or almost everything, anyway.)

Cheers!
Ray (@ray666)

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Good Afternoon, Ray ~~
I got a chuckle out of your post because it so closely mirrors the way I sometimes handle the making of lists. If "to do" thoughts present themselves like a batch of corn popping in my head, I find I write on whatever piece of paper, Post-It, or periodical, etc. that's close - in hopes of not losing those kernels of plans needing deliberate and undivided attention. After some time passes (and hopefully some of the tasks can be crossed off) it's time to "UNITE those Lists" into one or two Master Lists. (Better for me to put one list for kitchen-type duties on the refrig. and one list for the rest on my desk in the living area). Ahhh, feels like I've decluttered already! ✍️😃

Best to you, Ray! Hope you and your partner have a wonderful, classic R & R holiday weekend, and may all who love Connect find refreshment in whatever special way they choose to observe it.

Barb

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@dbeshears1

@bjk3 , @njed , @ray666 My daily routine starts with coffee in bed, checking my electronic gadget stuff, which includes this Mayo Clinic Connect group, watching our mentors and administrators trying to herd us cats. I have my electronic list from yesterday that I change to today’s date, hopefully adding less than I was able to remove as completed the day before. I reorder based on what my body says; today it’s telling me sunshine at the pool. I think it’s important because it’s the only way I’ll be able to keep assessing when the water will be warm enough to get in and do some water exercises 😅😅😅. Have a good day!

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Debbie, I just re-read this - it's hilarious! Have a great weekend, hopefully poolside as much as possible 😺🕶!

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@bjk3

Good Afternoon, Ray ~~
I got a chuckle out of your post because it so closely mirrors the way I sometimes handle the making of lists. If "to do" thoughts present themselves like a batch of corn popping in my head, I find I write on whatever piece of paper, Post-It, or periodical, etc. that's close - in hopes of not losing those kernels of plans needing deliberate and undivided attention. After some time passes (and hopefully some of the tasks can be crossed off) it's time to "UNITE those Lists" into one or two Master Lists. (Better for me to put one list for kitchen-type duties on the refrig. and one list for the rest on my desk in the living area). Ahhh, feels like I've decluttered already! ✍️😃

Best to you, Ray! Hope you and your partner have a wonderful, classic R & R holiday weekend, and may all who love Connect find refreshment in whatever special way they choose to observe it.

Barb

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Hi, Barb

I love "corn popping"! What a perfect way to describe the snap, crackle, pop of the day's little reminders. I wonder, though, if I'm the only one who's given up on the idea of lists. I used to be a furious list-maker, lists of all sorts. I gave up making lists a couple of years ago because I only found they depressed me, not the day I made them but the following day when I'd be made to face not the handful of things I had gotten done but the gazillion things I had NOT gotten done. 🙂 I decided I'd take a chance and trust that if an item were really important enough, it would have a way of reminding me without some angry post-a-note dangling from my Mr. Coffee. I do make one exception, however, and that's a grocery list. Without a grocery list, added to day-by-day, I end up drifting about the aisles of the supermarket for hours. Maybe days. (List-less-ly?)

Ray

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@ray666

Hi, Barb

I love "corn popping"! What a perfect way to describe the snap, crackle, pop of the day's little reminders. I wonder, though, if I'm the only one who's given up on the idea of lists. I used to be a furious list-maker, lists of all sorts. I gave up making lists a couple of years ago because I only found they depressed me, not the day I made them but the following day when I'd be made to face not the handful of things I had gotten done but the gazillion things I had NOT gotten done. 🙂 I decided I'd take a chance and trust that if an item were really important enough, it would have a way of reminding me without some angry post-a-note dangling from my Mr. Coffee. I do make one exception, however, and that's a grocery list. Without a grocery list, added to day-by-day, I end up drifting about the aisles of the supermarket for hours. Maybe days. (List-less-ly?)

Ray

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Oh - my - WORD!!! (Actually YOUR word 🤣😂👏)

My love of lists must come somewhat naturally, having taught two foreign languages in high school. Just imagine, if you care to, all those wondrous lists of conjugations! Regular and irregular! And in every tense! These days, it is an embarrassment how short my memory has become, to say nothing about pauses in speech when I come up short of the word I was looking for in English. Aahhh, the challenges of aging! It is SO much more comforting with a community of friends with whom to identify!!

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