Life with Neuropathy

Dancing with My Daughter:  Leaning Into Love With my severe neuropathy I can't walk alone any more. It's just not possible.  I need a walker, a rollator, a wheelchair or a scooter to get around "on my own."  And it depends on the day and the pain level as to how far I can stand to travel with any form of assistance. My balance is variable as well.   My daughter's wedding day was on the horizon and more than anything I had hoped to be able to be near her as she walked down the aisle during the processional. I had prayed that I would be healed, that I wouldn't need any help as my wife and I gave our darling girl away. But that didn't happen.  And, selfish me, I also wanted wanted to have a chance for a Daddy/Daughter dance with her. Every father has this dream. Not only to be there for the special dance but also to have the strength to stand up -- take her hands -- and sway to a sweet sentimental song. No difficulties, no hassles, just fun. But it wasn'...

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 ...

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...