The First 10,000 Visitors: Thanks for Stopping By

YOU Are One of the First 10,000 Visitors: Thanks for Stopping By!

Thanks for visiting the LifeWithNeuropathy blog and reading some random thoughts about surviving and thriving with the pain of peripheral neuropathy.

I was initially diagnosed with Idiopathic Peripheral Neuropathy. Then my neurologist decided -- after much testing -- that I had CIDP (Chronic Inflammatory Demylinating Polyneuropathy). Next I was forced to get a second opinion because my old neuro doc moved away and my new neuro doc wasn't sure I actually had CIDP. Turns out that in his opinion, I didn't.

So much for getting IVIG infusions as I'd been earlier promised. That pathway was shut to me.

Living with neuropathy of any type and from any source is difficult. The pain level is often what I call "off the charts." Not that it always feels completely horrible, but quite frequently it does.

Like anyone with a damaged peripheral nervous system, I have no choice but to deal with the stinging, aching, stabbing, crushing, freezing, burning pains. It's impossible to accurately describe what it feels like to somehow who hasn't experienced neuropathy. It hurts. Bad. And the pain often changes from moment to moment and day to day.

There are several tough topics addressed on this blog and I've got a list of others I'm working on as well. Below please find some thoughts that you might want to check out to better understand what neuropathy is.

Given that I've written 32 articles since I started writing for this Blog just over a year ago I'm giving myself a bit of a break and sharing some links with you. Please feel free to meander through the options. Try a bit of this and a taste of that.

And, as always, thank you for your time, support and encouragement.

My Personal Introduction

Why ADA Toilets Matter

Creative Ways to Stay Connected with Your Interests

The Magic of Music

Dealing with Pain

Giving Yourself Permision to Verbalize Your Pain

Dealing with Changes

Losing Your Doctor

Requesting a Handicap Placard

Facing a Spinal Tap

Dropping Things

Difficulties with Mobility

Walker Envy

Seeing Your Walker on the TV Show "Monk"

Putting Tennis Balls on Your Walker

Let's Talk about Speed -- and Slowing Down

Let's Talk about Giving Thanks

Calluses are OK

Exhaustion is Normal

Grabbing Grab Bars

Tossing Something vs. Dropping It

Please Read Before Sharing Alleged "Neuropathy Cures"

P.P.S. Thanks to Sue Winston for this awesome picture. Photo by https://unsplash.com/@SueWinston.

Comments

Life with Neuropathy: Let Me Introduce Myself

Hi, my name is John. Originally diagnosed with idopathic peripheral neuropathy, I have finally been confirmed as having CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). I'm just over 60, a husband, father of 8 children and grandfather to 4. I love reading and writing and playing cribbage. I also believe I'm far too young to be dealing with the pain of neuropathy -- and yet here I am. It's part of me now. It has changed the way that I walk, sit, stand, sleep, move and think. And much more. Getting from one place to another has become an enormous challenged. To find out more visit Let's Talk about Mobility . I work remotely in a home office and am very thankful that I have a job, a support system, a place to live. Times are hard for us all right now. And when you add in neuropathy or any other health concern, the stress can grow. Become overwhelming. I've felt that anxiety rise at times especially not knowing what's in store for me in the next few weeks

Life with Neuropathy: Let's Talk about Changes

Life with Neuropathy: Let's Talk about Changes Welcome to Life with Neuropathy. My name's John and I have idiopathic peripheral neuropathy. Today let's talk about changes. Before my neuropathy kicked in, I used to be able to easily get up from a chair and go where I wanted to. Whenever I wanted to. No issues, nothing to consider. Things weren't difficult. I could move, walk or exercise, and didn't have to worry that my feet would get numb when I went for a long drive. Read more at Let's Talk about Saying "Owww!" Now it seems like I'm walking with hard towels balled up under my feet. Balance is sometimes a problem. There’s tingling, needle-pricks and other strange sensations. I’m sure you know what I mean. I never quite feel like I have full contact with the ground. I frequently worry about falling. I have constant excruciating pain in my hands all the time now. I also find that because of the balance issues I'm more hesitant to carry

Life with Neuropathy: Let's Talk about Pain

Welcome to Life with Neuropathy. Hi, my name is John. A nd I have IPN (Idiopathic Peripheral Neuropathy ). Today let's talk about pain. Before my diagnosis of neuropathy I had various experiences with pain. Lots of dental work, a broken arm, the occassional headache, and constant foot pain. I could never find comfortable shoes so preferred to not wear any. Especially dress shoes. But the nerve pain that comes with neuropathy is different. Very different. It's not something you can understand until you have to deal with it yourself. Through the years I've seen family and friends deal with various medical issues. I saw my father struggle with intense head pain and neurological imbalances. I watched my wife go through labor and childbirth. Talk about real, intense pain. I wanted to help but could only be there for her -- listen to her. There was nothing I could do to stop the hurt she was experiencing. Despite the best efforts at empathy, often we can only truly realiz

Life with Neuropathy: Let's Talk about Exhaustion

Hi, my name is John. A nd I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy ). When you have CIDP or any type of neuropathy you must figure out how to deal with the daily issue of exhaustion. It can be crushing. Everything is a challenge. Everything takes longer. Often much longer. Everything hurts and the tearing pain is a constant reminder of the many changes you're facing. Constantly. Always. Every moment. You can have neuropathy and still LOOK marvelous! People don't necessarily see that you even have a problem unless you have a walker or cane. And they certainly don't understand what it's like living with CIDP. Or realize that having constant pain makes you tired. I used to be able to fall asleep the moment I flopped into bed. I was out. Completely. No problems, no issues. In fact, I've earned several Gold Medals in Napping. Now when I try to sleep I can't quite let go and relax because of the pain surging through my limbs. Squeezing

Life with Neuropathy: Please Listen Before Commenting

Life with Neuropathy: Please Listen Before Commenting Hi, my name is John and I ha ve severe Idiopathic Peripheral Neuropathy (IDP). So I'm used to having pain. I don't like it but I live with it. It makes me very tired. Just like yours probably does. Please read here to learn more about my worsening symptoms. It can even hurt to stand . If only my pain would get tired of trying to hurt me! How I wish. But that's not the way it works. I have constant daily pain that stabs at me and makes everything I do or try to do more difficult. Maybe one day that pain will go away, but that doesn't seem too likely. I know I'm not alone in being concerned about pain and other maladies. In fact, there are plenty of pretenders trumpeting miraculous recoveries who attach themselves like a lazy remora to my Life with Neuropathy articles. I don't appreciate it. One such sucker printed their identical pitch to the comment sections of over 20 of my articles. Identical. Thanks fo

Life with Neuropathy: Let's Talk about Disappearing Doctors

Hi, my name is John and I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Thanks for stopping by. To follow this blog, look above this article just to the right of the header and find the three small lines next to the Search button. Click on the lines and then find the blue Follow button and click on that. You're done ! ...So you know it’s going to be a Bad Day when you get a letter from your Neurologist’s office stating that your doctor is leaving (no reason or explanation given, of course) and that you need to find another neurologist either from within the small practice or somewhere else. This is with the knowledge that getting an appointment with a neurologist is about as difficult as getting front row seats at a Taylor Swift concert . Not the easiest thing to do. Like so many other issues we must handle – we have to pivot frequently, deal with unexpected setbacks, and then try to figure things out as quickly as possible. Our health is at stake. And we often

Life with Neuropathy: Let's Talk about the Handicap Placard

Hi, my name is John. A nd I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy ). How did you feel when you got your Handicap Sticker for your license plate? Or maybe you chose a placard for your rear-view mirror. I got the latter because you can move it easily from vehicle to vehicle. Honestly, I never thought the day would come. Although I do remember when I was initially diagnosed with "peripheral neuopathy" -- the idiopathic kind. After a difficult nerve conduction test I was given the terrible news. "You'll just get worse and worse until you need a cane, a walker, and eventually a wheelchair... And there's nothing you can do to prevent it." No encouragement. No hope. That was a very dark day. But then I found a neurologist who confirmed after a spinal tap that I had CIDP. And I learned that there were some options. Which is good. Full disclosure: I'm still waiting to try some of those options but I least I have a sparkle of hope tha

Life with Neuropathy: Let's Talk about Walker Envy

My name is John and I have peripheral neuropathy. Sometimes I get greedy. I see some sugary something that someone else has and I want it. All of it. Like the delicious super-sized sundae shake pictured above. If you saw this guy strutting down the street wouldn't you give that confection a second look? And wouldn't you wish, for a fleeting second at least, that you were the one making a spectacle of yourself slurping down a monstrous ice cream extravaganza? I have to admit that the same feelings of longing came over me when I saw a guy with the Tesla of walkers. I mean it had everything. All the special features, four slick wheels, a padded seat, comfort-lock brakes and a storage bin under the seat. Heck, it even had a fax machine! It was the bomb. Handy as handy can be. The ultimate in rollator technology and innovation. And it wasn't mine. But I sure wished it was. Looking at my own humble walker I felt, well, humbled. I only had two wheels and old tennis balls dec

Life with Neuropathy: Let's Talk about Mobility

Welcome to Life with Neuropathy. My name's John and I have peripheral neuropathy. Today let's talk about mobility. To give you a point of reference, less than a year ago I was enjoying the Daddy-Daughter dance at my child's wedding. Today I need a walker to get around. Find out more at Let's Talk about Changes . A walker? Really? Read more about walkers here . To be honest I never thought that I'd even need a cane. Why was I so smug? No particular reason except that I'd always been relatively healthy so why would I start having problems with balance now? I'd never thought about the word neuropathy, didn't really know what it was. Or how it would change my entire world. Read more about my neuropathy journey at Let Me Introduce Myself . To be honest, I've always had great difficulty finding comfortable shoes but that's how it's been since I started having to wear them. I grew up going barefoot mostly. I'd kick those shoes off as soon as

Life with Neuropathy: Let's Talk about Speed

My name is John and I have peripheral neuropathy (PN). As we age, sometimes we slow down. Now with my walker, I see turtles on roller skates zipping past me waving and laughing. (Here's an article about how tough it is to deal with pain and another about how it's OK to say "Owww!!!" ) Dealing with others pushing in front of you because you're slower or using a walker makes doing tasks even harder. And slower. Today I had a little example of what it means to have someone take cuts in front of me in a clearly marked line. I was getting a blood draw and just as I was about to reach the sign-in sheet a woman stepped in front of me and grabbed the clipboard. She wasn't overtly unkind about it. She simply ignored me and put herself first. I mean, sure, she was faster than me but I was a couple steps away and clearly heading for the same location. It was obvious what was going on. Simply put, she could have chosen to be polite, to pause and let me sign

Life with Neuropathy

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