Life with Neuropathy

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.   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

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 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