Life with Neuropathy

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: 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: Making Cookies the Easy Way  Hi, my name is John and I have idiopathic peripheral neuropathy. At least that's what they told me at my last visit to the neurologist.  When   you have any type of PN (peripheral neuropathy) you must deal with far more than the everyday issues of life. (Read about my story  here .) One of my stresses is losing the freedom to do all the things I used to do. Used to love doing.  Like making cookies to surprise my wife, children or grandchildren. Constant pain and the inability to stand for a long time have made something as simple as stirring up a batch of cookies far more difficult than it used to be.  How about you? What little things do you miss doing? How much time, effort and exhaustion would you donate to bake a dozen chocolate chip cookies? Would it be worth it?  I'd say "Yes." So one of my new post-neuropathy hobbies is finding easy-peasey THREE ingredient cookie recipes. They do exist and some are better than

  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 and I have neuropathy.  When  you have any type of peripheral neuropathy you must deal with far more than the everyday issues of life.  One of the stresses I face is joint pain. Especially in my hands and wrists. They've gotten much more sore because I'm constantly using a walker.  I wish it wasn't necessary, but it is.  To help give me a little more support I purchased some wrist braces that are black and have a velcro strip that I can pull tight. I appreciate the little bit of extra ooommmph I feel when wearing these. It helps spread out the pressure and provides some comfort. They also cause some problems. This is because the material that velcro sticks to sticks to other velcro and other types of material. So sometimes it's like I'm  caught in a spider web of clingy fabric. As amusing as it is annoying. But I've always been good at entertaining myself.  Almost inevitably, when I try something to "make things better" there's

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