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: 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

  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 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

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 ). When you have CIDP or any type of neuropathy you must often  figure out different ways to get where you want to go. I use the edge of the bed, sturdy chairs, dressers, and tables at times. I'm very creative. But mostly I rely on my walker to get anywhere. And by anywhere what I really mean is everywhere.  It was only a matter of time  before the calluses started to form. Painful hard spots of skin on my hands and palms developed. Like dry scales that protect me while using my walker.  I need it to lift myself up from a seated position. And I lean on it to support my upper and lower body when getting from place to place.  A lot of repetitive pressure has built up these stiff calluses.   The skin at the site is no longer soft or smooth. Probably never will be again. But that's what lotion is for, right?  Calluses aren't necessarily bad though. Anyone who has toughened up their finge

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

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