Life with Neuropathy

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

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 solution and yet

Hi, my name is John. A nd I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy ).  How did you feel when you got your Handicap Sticker for your license plate? Or maybe you chose a placard for your rear-view mirror. I got the latter because you can move it easily from vehicle to vehicle.  Honestly, I never thought the day would come.  Although I do remember when I was initially diagnosed with "peripheral neuopathy" -- the idiopathic kind. After a difficult nerve conduction test I was given the terrible news. "You'll just get worse and worse until you need a cane, a walker, and eventually a wheelchair... And there's nothing you can do to prevent it."   No encouragement. No hope. That was a very dark day.  But then I found a neurologist who confirmed after a spinal tap that I had CIDP. And  I learned that there were some options. Which is good. Full disclosure: I'm still waiting to try some of those options but I least I have a sparkle of hope tha

Hi, my name is John and I have CIDP (Chronic Inflammatory Demyelinating Polyneuropathy). Thanks for stopping by. To follow this blog, look above this article just to the right of the header and find the three small lines next to the Search button. Click on the lines and then find the blue Follow button and click on that. You're done !  ...So you know it’s going to be a Bad Day when you get a letter from your Neurologist’s office stating that your doctor is leaving (no reason or explanation given, of course) and that you need to find another neurologist either from within the small practice or somewhere else. This is with the knowledge that getting an appointment with a neurologist is about as difficult as getting front row seats at a Taylor Swift concert . Not the easiest thing to do.   Like so many other issues we must handle – we have to pivot frequently, deal with unexpected setbacks, and then try to figure things out as quickly as possible. Our health is at stake. And we often

                                 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