Life with Neuropathy

  Life with Neuropathy: When the Flowers Fade  Hi, my name is John and I have severe idiopathic peripheral neuropathy.  My wife and I lost a son very recently. His death hit us like a sledgehammer to the heart. We responded to the horrible news with unstoppable grief and pain. Soul pain, heart pain, head pain, body pain, nerve pain. Every imaginable hurt enveloped us in this senseless tragic loss. And yet we had no choice except to take the next step even while wondering how we would survive this dark new reality. Fading flowers surrounded us.  My precious wife hurt in her own way. She would never again hold -- or hug -- the sweet child she once carried in her womb. He was lost to her now and nothing could be done. She suffered and grieved as only a mother can. Beyond the pain there were questions, thoughts, worries and anger. Processing a death is not quick or easy. Nor should it be.    The physical pain of my neuropathy was made sharper by all the stress. I felt as though my hands h

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

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. 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

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

Life With Neuropathy:  A Little Humor, Very Little Hi, my name is John and I ha ve severe idiopathic peripheral neuropathy.  So I'm used to using a walker. I don't like it but I live with it. Read more about  worsening symptoms.  Here are also a few thoughts about standing tall during tough times.  Today let's talk about humor. One of the ways that I've always survived the daily grind (even before being diagnosed with neuropathy) was looking at the world through a very strange and crooked lens. To be honest, sometimes (OK, lots of times) I was the only one laughing, but as my wife likes to say, "You're definitely able to amuse yourself."  And that's a gift, right?  Plus it's true. I see things in weird ways and sometimes stuff just makes me laugh. No explanation necessary. How about you? What's your general outlook on life? Half-full, half-empty -- or no glass at all? When things got so bad for me that I needed to use a walker, a dear friend

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

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