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