Me & my PN: Why do I lie?

Hi cher27. You can see photos of redness of neuropathy patients on line. Some are an extremely bright red. Mine are noticeable, especially in the heat, but not bright red. I have concerns about the number of things I put on my feet for pain relief and whether they will degenerate the condition of my skin. This includes lidocaine patches, blue freeze gel, and various other lotions and potions.
So I am putting myself under the regular care of a podiatrist just to keep checking the skin although I am not a diabetic. And I understand that there is really nothing podiatrists can do to help with pain relief. Anyway, that’s what I am going to do for now. That and keep moving.
Best of luck to us.

Group messages are great-lots of good ideas.
You don’t mention senior transportation- have you looked into that? Here, if over 65 or disabled, you go to the bus office and get a photo id, then call whenever you need a ride to and fro, door to door. It’s $2.00 here, they appreciate 48 hrs notice. Sometimes you have to wait on the pick-up end, but I always have a good book with me, so no big deal. Denver must have something similar.

@centre - I must say this to myself several times a week. You go into this on a very unvoluntary basis, and I think we all start to wonder OK...uh...what next? When the neuro doc said this to me, my wife and I walked out of his office that day and I remember thinking well, it's good news and not so good news but it could always be worse. And I've maintained that thought process.

@ray666 - Job well done! I've read the posts from various members, and you got a lot of us thinking about our PN, how we relate to others, doctors, family members and friends....or in some cases, we don't. How to deal with this disease is recognizing it for what it is and when folks write about it, no doubt, it provides an avenue for expression. Your topics are those which we often don't bring up. But you do get us thinking. Ed

Thanks, Ed (@njed). I appreciate your words more than you can imagine. If I'm asking provocative questions, it's because I'm late to the dance. My PN diagnosis is still less than a year old. I'm learning as I go along. My questions, possibly naïve, grow out of my learning. I'm sure I'll continue to post my babe-in-the-woods questions, but I'm also interested in getting into the politics of PN. Only this morning, I read Gideon Lewis-Kraus's New Yorker account, "Bitter Pill," about the FDA. The article got me all worked up––in a positive way. If I say I'm having fun, does that sound too weird? How can a guy with PN be having fun? But in my own weird way, I am. Some parts of my PN are a pain (pun intended?) in the a**; however, other parts keep me energized, living in a high-octane way––and what's not fun about that? LOL Uh oh, I see it's a quarter-to-nine—time for a couple of hours of non-PN work. ::zzz:: Again, thank you, Ed, for the kind things you've said. Here's wishing you an excellent day! ––Ray (@ray666)

@ray666 Ray - your comment - "I'm learning as I go along"....exactly!! So are all of us and this is one of the reasons I jumped into the Connect because we need to communicate and learn from others who experience the effects of living with PN. I've found that not many docs know a lot about PN but those of us with it could be the best source of information. We're living with this damn thing and learning from others how to possibly cope with it and even try some supplements and meds that might help with a little relief. Let's keep sharing information and I for one really appreciate the fact that Mayo has provided us with this source of communicating.

Ditto to what you said, Ed: "I jumped into the Connect because we need to communicate and learn from others who experience the effects of living with PN." All my life, no matter how scary the monster, for me, the twofold secret to spare me from getting panicky, instead to calm me down so I can move on has always been to learn everything I can about the monster and then to talk to others who are faced with the same monster. You're right, too, about not many docs––especially those who aren't neurologists––knowing much about PN. The other day when I met with my podiatrist to talk about my feet and my PN, he said he was glad not to be a neurologist because neurologists have so much information to stay on top of. He laughed when he said that because, as we'd been talking, he had impressed me with how much he did know about PN. Onward and upward! ––Ray

Hi Ray, I am new here and have enjoyed this honest conversation that you started. It really does make you think. I am experiencing numbness in my hands and feet. I have had several of my Drs, come up with different causes, or ideas, of what it may be.
I had a 15 min cram visit with my GP, Tuesday. My health issues seem to overwhelm him, as they do me, at times. Anyway, I forgot to show him the knots on my finger joints. I wrote him on the portal and said, " I know it's important to be "honest" to receive the best care, but I truly just forgot. I told him I thought it was RA, and explained my reasons. I have MGUS and low platelets etc so a repeat blood work was already ordered, and he said he would add the screening for RA. I had an ER visit three days later, and during the complete work-up to find my emergent problem, wouldn't you know it, I was told I have RA. I am glad I didn't just let it go until the next visit in several months, and that I am smart enough to dig for answers, and know my family health history also. Now I need to contact him again and gently tell him, thanks for the referral for carpal tunnel, but I truly think this is PN. I guess I also need to make him aware of the RA confirmation also. My balance has been an issue the last several years. I fell at work a few years back, had discs replaced and worsening symptoms with sciatica and numbness. Now, 5 years later, it's not just my feet being numb, but my hands also. I wonder if I can skip my co-pays, or get a discount, since I am out here self diagnosing, just kidding, lol. So glad to be here, and thankful to be my own best advocate! Knowledge is such a powerful thing, and it's great to learn from, and help others! Take care Ray, I hope you are more honest in the future! They say the truth will set you free. 😁🤗

FYI, the cards, flowers and food were just a brief period, probably to make them feel better. Since then, for example, I joined them for dinner and a concert. It was a “seizure day” but I had gotten through it. I got rushed getting ready - in addition to getting showered, etc, I had to gather up the trash and roll the can to the street in a hurry, feed to cats, load the dishwasher, lock all the doors - well, I got dizzy. Instead of taking 10 minutes to sit and get un-dizzy,, I grimly pushed on. I parked and wobbled across the intersection. I entered the restaurant where I discovered my friends already at a table, laughing and visiting. They had carpooled together and arrived early! A seat was saved for me at the end of the table. And even though I arrived on time, with great effort and some suffering, they had all enjoyed perusing the menu and were ordering already!
Yes, my friends suck. I just wanted to put this in writing. Maybe if I got a wheelchair they would have remembered to include me in the carpool!😒

Good morning, lgirl (@flgirl)

And welcome! Thanks for saying you found something of value in my Why do I lie? topic. It was true at the time I created that topic. I want to think I am much more honest about my neuropathy––when I believe being honest will be helpful, both to the other person and me. This whole experience of being diagnosed with a progressive and (at the moment) incurable disease has been an extraordinary experience, not only in how I interact with the people I love and care about but also internally: how I interact with ME. It's been an experience, all right; I can tell you that! LOL, It's akin to "coming out" when you find yourself in possession of information about yourself––a "secret," let's call it––and you're having your own difficult time with your secret (in many instances), worried even more so, if you share your secret, how others will take it: will they think you're exaggerating? looking for sympathy?––perhaps the worst: will they behave differently toward you? A few days ago, a friend called me to say that she was so glad I'd told the members of my writers' group that I had PN (and that was why I was hobbling about with a cane, not able to distribute coffee refills the way I used to, etc.) because she felt "honored" (her word, believe it or not!) that I had trusted her enough to tell her. I'll be meeting with this same group tomorrow. I'm curious to see if others treat me as they always have (my hope!) or if I will detect a change in how they relate to me (please, no!). As I say, "coming out" as a guy with PN has been quite the experience!

Again, welcome!
Ray (@ray666)