Life with Neuropathy

                                 Some call it Turkey Day because of the prominent position played by this succulent juicy bird. Others are thankful for the cornbread stuffing, mashed potatoes and gravy, homemade cranberry jelly, fresh rolls, and green bean casserole. But Thanksgiving is more than fabulous filling food.  Thanksgiving (and EVERY single other day!) is a time to give thanks and show gratitude to the many people who serve as our caregivers. Day in and day out...24-7...and definitely not just on holidays they are there for us. Truly. Even on our most difficult days. They see us when the pain is overwhelming. When we seem to have forgotten how to smile. When hope seems to hide.   And yet they are always there to listen, to help, to encourage and to love us. To simply be present in our anguish, disappointment and hurt. For me, my wife is my pillar, my guide, my dearest friend.  She is the best example I know of someone who comes to the rescue even when she doesn't know ex

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

  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

  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