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Me & my PN: Why do I lie?

Neuropathy | Last Active: Jun 29, 2023 | Replies (30)

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@flgirl

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. 😁🤗

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Replies to "Hi Ray, I am new here and have enjoyed this honest conversation that you started. It..."

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)