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PN: From Anger to Acceptance

Neuropathy | Last Active: Mar 5 9:33pm | Replies (81)

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@ray666

"I don't think any of us want to completely abandon hope - we just can't be consumed with it any longer."

Ah, that's it, isn't it? Never give up well-founded hope while not letting oneself be consumed by false hope.

Good morning, Debbie! ( @dbeshears1)

As my partner and I went on to discuss the webinar, it became apparent that was exactly what she meant when she called my occasional "Why me?" thoughts "normal." I sort of knew that, but because the topic (anger vs. acceptance) stirred such fun conversation, I thought I'd pose it here. (Trust me, she and I talk about things other than medical things! LOL)

Mmmm? Did I say that my neuro called my PN "progressive"? I may have misspoke. He didn't call it progressive; what it did, comparing two EMGs a year apart, remark that my PN hadn't "progressed, not really" (I believe that's an exact quote). I take comfort in believing (I hope not foolishly) that my particular brand of PN is not "obligated" to progress. 🙂

Enjoy your weekend!
Ray (@ray666)

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Replies to ""I don't think any of us want to completely abandon hope - we just can't be..."

Ray -
I’m guessing, like me, when you get a report you read it and have to stop & Google every other word to try to figure out what it’s saying and to get questions ready for our doctors. I haven’t read reports of mine recently. There are so many big words I no longer recall if they belong to me. Myelinating, demyelinating, generative, degenerative… It all becomes a swirl and I almost would have to re-read and re-Google all over again. The only key word I remember with certainty anymore is “Idiopathic “ 😵‍💫

However, when I moved here last year, I asked my new Neuro if she would compare my last two EMG’s to see if she saw any signs of Progression (or Regression). I wanted to know so I’d have a little more Dara and knowledge to help plan for the future ? She refused to compare them. She said that it wouldn’t change the fact that SHE couldn’t do anything about it, so it wasn’t worth the time for her to do it. I guess it didn’t matter that I felt that Knowledge of progressing would be Power for ME. We can argue that my body is telling me, but that’s not imperial & specific scientific PN data with all the other variables in our life that contribute to our wellbeing.

It made me wonder if maybe she didn’t know how to compare the two EMGs that were 2 years apart. Or maybe she really was the type that just selfishly thought my visit was about her, not me. So when you used the word progressive, it made me wonder about how to measure it. (In a vacuum of course, because it would be hard to isolate it from the normal wear & tear with aging, injuries, our other medical condition impacts and their progressiveness , etc)

Days are looking up, getting longer, more sunshine, and I don’t like dark. I hope you’re staying warm! Deb