Life with Neuropathy

Hi, my name is John. When  you have neuropathy you must deal with so much more than the daily issues of life.  Sure, you have to handle things like getting around, getting dressed, making a living, caring for family and staying connected to friends. But you must also keep trying to find answers to your tough health problems.  There are always so many things to do and every single one of them is more difficult now with neuropathy. Tougher than ever before.   And then sometimes the unexpected happens. We learn something big, something bad. We're given answers that hurt.  It's like tripping over a tangled barbed-wire fence. One that you didn't see. All of a sudden nothing is going right. And certainly not at all the way you wanted things to go.  You don't know exactly when you'll stop falling. Hit bottom. Catch your breath.  And in such moments, you need time to think. To grieve, to weep, to pray.  We need silence. And an opportunity to process the hard, unexpected new

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 trying to move things both big and small while pushing a walker, or holding a cane, or ambulating unsteadily on your own two feet.  (Ah...for the good old days...)  Simply put, nothing is as easy as it used to be...   I've taken to tossing things like pill bottles, pillows, a TV remote, socks, towels, my phone or other items that like to fly. Food, not so much. But if it's carefully contained and the lid won't pop open, I might give that a try sometime. The bed and couch make nice soft landing spots!  This is definitely not the same as dropping things -- because my tremendous tossing efforts are totally intentional . Granted, sometimes what I'm throwing ends up on the floor so I guess that technically turns it into a dropped item. But against my will. That's for sure.  Wi

Happy New Year 2024! Hi, my name is John. A nd I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy ). When you have CIDP you must often  figure out different pathways to accomplish your goals. And sometimes you have to change those goals -- and pathways -- a lot or a little. Maybe even daily. I used to love playing the piano, but sitting too long is literally a pain in the rump. Sorry for being so blunt. But it's not comfortable to sit for a long time on a hard seat. Especially when my tangled nerves and stiff joint are constantly shouting at each other.     It's so relaxing to play old favorites once in a while. Especially Christmas classics during that special season. But how could I reach this goal of having a little extra comfort and support? What options did I have? And then it hit me.  I could try using an office chair instead of a low piano bench. Something with far more padding and arms, too. And the height was adjustable too. Such an obvious solution and yet

Are there certain songs that always touch you? I mean always. No matter what you're going through is there some special music that is guaranteed to move and delight your soul? Certain tunes that lift you up when you're feeling low.  Maybe even make you weep.  For me, listening to the Carpenters touches something very deep inside me. Karen Carpenter's voice makes me think about the insistent search for true love and the pain of loss. Her music is about constant hopefulness and frequent sadness, very much like living with a chronic medical condition.   "I Know I Need to Be in Love" and "Rainy Days and Mondays" filled me with beautiful dreams for the future with my "One True Love." Someday. The girl of my dreams, who I hadn't yet met.  I wanted to find the one person who was willing to "Love Me for What I Am," for simply being me. And I knew that "I Won't Last a Day Without You" was absolutely accurate when I, as a goo

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