Life with Neuropathy

                                  YOU Are One of the First 10,000 Visitors:  Thanks for Stopping By! Thanks for visiting the LifeWithNeuropathy blog and reading some random thoughts about surviving and thriving with the pain of peripheral neuropathy.  I was initially diagnosed with Idiopathic Peripheral Neuropathy. Then my neurologist decided -- after much testing -- that I had CIDP (Chronic Inflammatory Demylinating Polyneuropathy). Next I was forced to get a second opinion because my old neuro doc moved away and my new neuro doc wasn't sure I actually had CIDP. Turns out that in his opinion, I didn't.  So much for getting IVIG infusions as I'd been earlier promised. That pathway was shut to me.   Living with neuropathy of any type and from any source is difficult. The pain level is often what I call "off the charts." Not that it always feels completely horrible, but quite frequently it does.  Like anyone with a damaged peripheral nervous system, I have no choic

Life with Neuropathy:  Standing Tall  Hi, my name is John and I ha ve severe idiopathic peripheral neuropathy. So I'm used to pain. I don't like it but I live with it. Read more about worsening symptoms.  We've all heard the statement that "sitting is the new smoking." That just means it's better to stand in the sun than sit around in dark rooms peering at screens. Merely making the effort to stand is a type of e xercise that helps with balance and circulation.  What if you need help to stand? Get it! Lean against a tree or a pillar on your front porch. Better yet, maybe hold someone's hands or accept get a hug for a little extra support. Stand together gazing at a shimmering sunset.  On a tough day this assistance could be enough to get you to your feet. Or maybe not.  You won't know until you try.   But you won't be able to try unless you give someone the opportunity to touch you, know you. Reach out to you. Understand what you're facing and

Life with Neuropathy:  Worsening Symptoms Hi, my name is John and I ha ve severe idiopathic peripheral neuropathy.  I guess it was to be expected especially because I kept getting the same message over and over. Doctor after doctor. Still, it's hard to hear and to process as truth. I'm talking about the diagnosis of peripheral neuropathy and the prediction that the condition will continue to worsen until I'll need a wheelchair to get around.  So far, this has been happening true to form except more quickly than would be considered normal. Initially, I didn't use a cane but walked a bit unsteadily and made it through my day although it always shocked me to see my stooped back and halting walk in the reflection of store windows. Everything was fairly simple just with more pain and more fear of falling.   Sure, it was a problem, annoying, but I managed. Then as my balance faded further I found that a single cane made things a bit easier. Most of the pain was focused on my

  Life with Neuropathy:  Giving Mom a Break About Her Meds                                        Hi, my name is John and I have neuropathy.  When  you have any type of PN: peripheral neuropathy (idiopathic or otherwise) you must deal with far more than the everyday issues of life. Find out more about my story here . One of the stresses I face is constant pain. Pain all over, worse at some times, far worse at others. So I have a collection of medications, natural supplements, and vitamins to help ease my discomfort. Or at least try to do so.  My Mom, who died last year, had a large cache of bottles and prescription drugs that she had to keep track of to deal with her own medical issues.  I can't tell you the number of times that I had long and detailed conversations with her about her medications. I miss those calls. Mostly because she'd also ask me about my own burgeoning  health issues and aches and pains and I appreciated hearing the care and concern in her voice.  But when

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 exhaustion. It can be crushing.  Everything is a challenge. Everything takes longer. Often much longer. Everything hurts and the tearing pain is a constant reminder of the many changes you're  facing. Constantly. Always. Every moment.  You can have neuropathy and still LOOK marvelous! People don't necessarily see that you even have a problem unless you have a walker or cane. And they certainly don't understand what it's like living with CIDP. Or realize that having constant pain makes you tired.   I used to be able to fall asleep the moment I flopped into bed. I was out. Completely. No problems, no issues. In fact, I've earned several Gold Medals in Napping.  Now when I try to sleep I can't quite let go and relax because of the pain surging through my limbs. Squeezing

Hi, my name is John. A nd I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy ). Thanks for reading these articles about my journey with neuropathy. You are an encouragement me to me.  Since I started writing this blog in September 2023 I've been honored to have over 5000 visitors come to the site. If you like what you read, please follow this blog and you'll be notified first when a new article is posted.  Resolutions can help push us to make changes and improvements. However, your personal list doesn't have to be anything formal. Each and every morning we have a new opportunity to ask more questions and try to find more answers to the health issues we're facing. And to stand up for ourselves as patients who deserve and need competent care.  CIDP, peripheral neuropathy and related afflictions are cruel diseases that exhaust and overwhelm you as a person. They wear out your body through indescribable, sporadic and extremely variable pain and discomfort.  And

                                 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

  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

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