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PR's new saga...

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sKePTiKal:

--- Quote ---It's like you should be able to take everything and go to a nurse or back to a regular family doctor and just get some sort of de-briefing in simple terms and just tell them how you feel.
--- End quote ---

EXACTLY how I feel; what I feel is needed. The binder is actually a good idea. And a hi-lighter. Except for the PCP, none of the rest are all that good at this. And the fact that there is some behind the scenes, marking of territory and power struggles and major disagreements... ain't helping any.

There is one more puzzle piece: they assume that because I wasn't permananently attached to his side, that we must not be close. They assume that I'm much younger, a specimen of perfect health & endurance, and that while I understand quite a bit of the medical vocabulary -- many times, in conversation, there is an overwhelming emotional response from me that causes me to tune out what they are saying; for their words to be just "noise" sans meaning; for me to drift away into a "bigger picture" mental image of the impact of certain new information. They don't understand, that because hubs is the patient -- part of me is ALSO a patient; I just need different things.

Spot on, Garbanzo!!

Well, we have O2 available 24/7 at home now; and hubs will have portable bottles on Monday. It's a very big change and not quite comfortable for him to use it continuously. I'm not being an oxygen-nazi; we set the amount down a little for sleeping with the first night and he got 4-5 hrs of sleep in, before he had to turn it off. I think there's a little bit of macho-shame conflict going on with the stigma of the tubes & bottle for him. So I'm not pushing him to use it when gets up for a potty break or to visit the kitchen for a drink or snack. Just having it HERE and using it for an hour or two at a time, seems to be helping. His cough sounds have changed; less yucky and more clear. And I think this will help with his energy and being able to eat. In time. Not rushing anything.

Last night he said, he never wanted me to have to go through this, like this. My dr friend, is the one who pointed out to me, that he wasn't being stubborn about pretending there wasn't anything wrong; hubs was trying to protect me from the reality. I cried this morning, when hubs got up and made me coffee for the first time in 2 1/2 weeks. He was always up before the sun and this was his little thing he always did for me. I always leaned on him when I was crushed; like now. I been trying to tell him to lean on me now. LOL - but he really is stubborn and hard-headed. Has to be, to put up with me.

We celebrated our anniversary this year in the elevator down to pre-op for the exploratory surgery. He thought I'd be mad he didn't remember... LOL. At least he FINALLY agreed to get help that I couldn't give him. Silly boy. He was so scared about that procedure and anasthesia. Never had stitches, or broken anything, or was seriously ill before. He felt like he'd been dropped onto another planet and the evil aliens were studying him. Pretty apt description, actually.

Meh:
Reading.

:(   Doctors are not really being evil though. They are trying to help in their evasive messed up way.

Having my morning cup of coffee.

Hopalong:
Agreed about docs. They wear masks and are desensitized but inside, still human and working in an inhuman system. They are your allies (with exceptions, but...).

PR hon....oh the daily enormity of it all. That's what I remember. When a loved one's life and health are in crisis, it's a daily enormity. Adrenalin pours all over the windshield. Rest feels like cheating. Colors fade or brighten.

Life itself compresses and glows. Fatigue finds new cells to occupy.

It's awful and beautiful at the same time.

love to you
Hops

lighter:
Amber:

I don't know if it's appropriate or possible, but maybe you could include your retired medical friend in some of the more important medical appointments?

I remember having to stop and put my head between my knees on my way to my father's hospital room at one point.  Just the smell of the hospital made me light headed.  It is like we're the patient too.... sort of, IME.

I still don't understand why M can't put you on a list of people to receive all information and discuss anything with medical professionals.  It was so helpful for my sibs and I to access information, test results, and doctors when we needed to. My mom put us on a list, is how she explained it, and insisted we be given everything we asked for.  The nurses were helpful, and forthcoming.

::sending strength:::

((((Amber and dh))))

Lighter

Meh:
reading it all

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