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stuckonu (@stuckonu)

Never Late

Just Want to Talk | Last Active: Oct 31, 2019 | Replies (26)

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@rosemarya

@stuckonu, I just now came up on this message. I must compliment you on your ability to recall and write about your experiences. I see that you and @hopeful33250 are onto a plan to make communication with your caregivers more meaningful. Is that right?

Here is what has worked well for me as an efficient tool for my doctors. I kept a notebook and I entered:
– the date,
-my symptoms,
-treatment or medications (over counter and Rx) and any supplements , -doctor, if one was involved,
-running list of any changes as they occurred.
-I also kept a journal of my narrative because it let me express my own thoughts and feelings which helped me to cope when I was in failing health waiting for
my organ transplant.

Let me know if this sounds like something that might be helpful for you.

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Replies to "@stuckonu, I just now came up on this message. I must compliment you on your ability..."

Great ideas, @rosemarya. Great suggestions for organizing a communication plan.

I appreciate your reply and I am trying to get my team of docs on the same page. As a retired soldier, I suffered quite a bit of head trauma so my migraines are horrible and the blackouts/seizures are back with a vengeance. I take a boat load of meds; however, my endocrinologist is working on removing several and adding one.

Hi Rosemary, thanks for joining in and contributing your suggestions and thoughts. I’ve been a journal writer since my 20s before, in fact most people were familiar with the word journal and journaling in any event I know that your suggestion is a good one but it takes two; meaning that the doctor needs to value what you’re doing and listen if both of those things don’t happen then I’m not sure what you wind up with. I know that with my VA doctor I often find that none of what’s written down gets discussed.
As far as my remembering details of experiences I can tell that I think that there is a name for the way that I remember things I don’t remember everything thank god but what I do remember usually has way more details than anyone else remembers. It’s not “ photographic “ and it’s not what Mary Lou Henner has called H-SAM
In any event I can tell you this which is interesting IMHO: my private PCP doctor listened really well and when I told him that I could show him how to actually see something that wasn’t there. He was very fascinated. So I set up the demonstration and I could tell that he was blown away. It wasn’t magic or slight of hand it was science and in a way the human bodies way of fooling us.
Over time I think that he was no longer entertained he was something. I actually thought it was jealousy because I knew all of these things that he didn’t know nor did he know anyone who knew the same things. It’s gotten really bad because he can’t answer my questions nor is he interested in my suggestions.
I would LOVE to find a doctor like a few that I’ve had over the years. My favorite one died unexpectedly and it’s so difficult for me to just talk about him or even mention his name without choking up.
You are on to something if you already do what you suggested to me. If your Docs accept what you are doing you are a lucky person especially if you are a transplant person!
Thank you so much a God be with you! Sounds like she already is!