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 fre...

  This Little Toilet of Mine:  Definitely Isn't ADA Compliant!   Hi, my name is John and I ha ve severe Idiopathic Peripheral Neuropathy (IDP).  So I'm used to pain. I don't like it one bit but I live with it. It makes me very tired. Just like your pain probably does. Please read here to learn more about my  worsening symptoms.  It can even hurt to  stand . Allow me to share a little story with you... 'Twas the night before the wedding and all through the Air B-n-B, 10 people split five bedrooms, and two bathrooms, not three... Not sure how many of you have tried an Air B-n-B and been disappointed. The people who are brave enough to open their home (or one of their many homes) really don't know who they're getting when they provide the secret code to a stranger. Of course, those who are renting a place for the night don't know what's in store for them until they open that front door.  Things can go very well or very poorly. From my very minimal ex...

Life with Neuropathy: Please Listen Before Commenting Hi, my name is John and I ha ve severe Idiopathic Peripheral Neuropathy (IDP).  So I'm used to having pain. I don't like it but I live with it. It makes me very tired. Just like yours probably does. Please read here to learn more about my  worsening symptoms.  It can even hurt to stand . If only my pain would get tired of trying to hurt me! How I wish. But that's not the way it works. I have constant daily pain that stabs at me and makes everything I do or try to do more difficult. Maybe one day that pain will go away, but that doesn't seem too likely.  I know I'm not alone in being concerned about pain and other maladies. In fact, there are plenty of pretenders trumpeting miraculous recoveries who attach themselves like a lazy remora to my Life with Neuropathy articles. I don't appreciate it. One such sucker printed their identical pitch to the comment sections of over 20 of my articles. Identical. Thanks fo...

Life with Neuropathy:  Standing Tall  Hi, my name is John and I ha ve severe idiopathic peripheral neuropathy. So I'm used to pain. I don't like it but I live with it. Read more about worsening symptoms.  We've all heard the statement that "sitting is the new smoking." That just means it's better to stand in the sun than sit around in dark rooms peering at screens. Merely making the effort to stand is a type of e xercise that helps with balance and circulation.  What if you need help to stand? Get it! Lean against a tree or a pillar on your front porch. Better yet, maybe hold someone's hands or accept get a hug for a little extra support. Stand together gazing at a shimmering sunset.  On a tough day this assistance could be enough to get you to your feet. Or maybe not.  You won't know until you try.   But you won't be able to try unless you give someone the opportunity to touch you, know you. Reach out to you. Understand what you're facing and...

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 focuse...

  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...

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...

  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...