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 frequently it does.  Like anyone with a damaged peripheral nervous system, I have no choic

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: 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