Life with Neuropathy

  What do you do to relax? How do you find people, places or things that take you away from your troubles and allow you to enjoy a quiet breath? What makes you forget your pain, even for a moment? Whose quiet smile gladdens your heart?  (Here's an article about how tough it is to  deal with pain  and another about how it's  OK to say "Owww!!!" )   Taking time for yourself is crucial. Finding that safe space may be more difficult when you have peripheral neuropathy because of mobility limitations. Our pangs of pain continually threaten to bring us back into the deep difficulties we desperately need a break from.   For me, getting outside to look at the backyard maple bursting red, gold and orange is a most excellent break. My eyes are washed clean by the beautiful colors. I love watching the grandkids playing with their toys, goofing around in a box, or trying to find their shoes. Taking a short ride in my scooter in the fresh air can be refreshing, even heart-warming.

Hi. My name is John and I have peripheral neuropathy. Sometimes I really hurt. (Here's an article about how tough it is to deal with pain and another about how it's OK to say "Owww!!!" ) When we feed our seasonal hummingbirds the local bees often try to get in on the action. And the more sugar water they get, the more they want. Many of them will literally crawl into the feeders and drown in the tepid sugary fluid. That's how much they crave their sugar coma.  Sometimes I'm tempted to take a similar approach. When I'm feeling a lot of pain even though I know intellectually that snarfing down chocolate isn't good for me I still go ahead and enjoy the temporary  sweetness of candy, pudding, ice cream and other treats. Yes. I fully realize that the ensuing sugar high will turn into a dark post-sugar low, but sometimes I don't make the best choices. And I have an excuse. I'm in a lotta pain. A. Lot. And so I don't always do what's best for

My name is John and I have peripheral neuropathy. I drop at least one of my many pills every day. Not sure exactly why, but it happens. All the time now. And then I struggle to pick up what is far below me on the ground. With my joint issues, bending my knees and getting down to the floor is tough some days and impossible on others.  My mobility isn't what it used to be. Read more here .  I've spilled lots of things and have gotten to the point of expecting it to happen. Although I never want to make a mess. Still, I sometimes do. But on the plus side, if I drop something early in the day maybe I can go for a few hours without dropping anything else. Not particularly logical, but then neither is neuropathy.  Besides pills, I've dropped spinach leaves, baby carrots, cherry tomatoes, more pills, the lids to pills, crumbs, chocolate chips, tangerine peels, water and other liquids, potato chips, cashews, almonds, soap, my comb, my phone, my keys and more. It's always someth

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

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

Hi, my name is John and I have peripheral neuropathy. Sometimes I have difficulty separating my physical pain from the verbal expression of that pain. That means that sounds are triggered by my constant discomfort.  When I hurt, I say "Owww!" It's the way things work for me.  The "Owww!" serves as a placeholder for other things I might want to vocalize. I guess if I tried I could stay silent and avoid these minor verbal outbursts. And sometimes I do. Many times.  Or I might say "Owww!" under my breath.  When I'm completely alone at home, I often scream "Owww!" at the top of my lungs. Maybe scream some other things. Give voice to the emotions that are tied tightly to the knife-stabbing pains tearing through my muscles and joints. Sometimes I get tired of hiding the extent of the anguish that is part of my daily neuoropathy experience.  Read more about more neuropathy journey at Let Me Introduce Myself .  I believe it's OK to acknowled

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

My name is John and I have peripheral neuropathy. This bony gentleman isn't afraid to bare his spine and neither was I. So let me share my personal experience with a lumbar puncture (affectionately known as an LP).  Never in my life would I have considered that I might be tapped to share a generous portion of my cerebral spinal fluid to allow vital tests to be run. But that's what the doctor ordered. And I couldn't avoid it.   Honestly, I worked up the situation in my head to be a horror film kind of encounter. You know -- after much struggle and screaming, I would be strapped to a table and then someone would shove a needle into my spine. This, of course, would paralyze me while the unsavory locals stole my wallet, walker, and water bottle.   But it turned out to be a much more banal experience. I was rolled from one room to another way down the hall and then had to roll from one bed to another. After that I tried to get comfortable on my stomach as my back was prepared fo

  Welcome to Life with Neuropathy. My name's John and I have peripheral neuropathy. Today let's talk about tennis balls.  So what's the deal with tennis balls and walkers? The two go together like peanut butter and jelly, Bert and Ernie, and Sonny and Cher. You see this combination everywhere especially if you stop by an assisted living facility. Swing by an ortho clinic. Or visit me in my home. Read more about famous walkers on TV at Let's Talk about Humor .  Now that I have a walker I knew it was only a matter or time before I gave in.  I'm not sure who the first person was to ever jam tennis balls onto the back legs of a two-wheeled walker but that unique practice has caught on and spread. Like an unspecified virus of unknown origin. To learn more about my neuropathy journey please read Let Me Introduce Myself .  But why? What's the reason? Well, adding tennis balls to a walker does, in fact, make them safer. Provides more contact with the floor. Also, the fe