Change approach

Occurred to me after my last phone call to the System-of-Care agent the I’ve developed a disability in speaking of my illness to others. Part of the problem is always speaking to another person. Each time I call I get another nurse or receptionist and have to start from the beginning and for some reason that disorients me. My cardiologist’s office is like this and the oncologist I’ve seen only once has now moved me to another clinic just when my chemo has put my heart at risk. Ironically, you need to be very together to be ill. It’s hard work.

Unfortunately, when I start to recount my history I get emotional and lose it. Even talking to my home care nurse, who I know pretty well (and she knows my complete history) I lose the ability to talk–literally. (Obviously there’s been little progress in recovery from the last incident with my heart, I’m still a mess).  Plus there’s the contradiction of my experience of health care givers  being advertised as “there to help” when in fact many seem either careless or actually untrustworthy.

So maybe I’m paranoid but so what? I need these people but also recognize they need me to be cooperative and rational and not some crazy sick person with issues. It confuses and distracts them for me to talk history. It also puts them on the defensive which makes me angry. This combination is not productive in any relationship and I think if wasn’t my life at stake I would have caught on much earlier.

No more history. It’s inappropriate. According to something I read last night contradiction sharpens awareness making it a useful friend.

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  • VanessaVaile  On August 30, 2014 at 12:54 PM

    What about a basic information card or handout to give or read to new people on your case? It seems really bad procedure on their not to hand over full information + their notes to the next coming on (and for that person to read them). This is what med professionals I trust (yes, there have been a few) have told me about the importance of case notes and access to records.

    All this gives me really bad flashback to my own time in a charity teaching hospital when I wasn’t getting tests (just observed) and no one would answer questions. I got sternly lectured about being uncooperative too. Apparently (and later confirmed) I’d been written off as a goner (so the logic might have been not to waste diagnostic resources on me).

    Sometimes reading your accounts, I have to stop, turn out the lights and just pull the covers over my head.

    Finally, after being ignored and nothing being being done, one night around 2:00 am (the time Fitzgerald sets for the dark night of the soul) three residents midnight requisitioned and sneaked in ultrasound equipment, shushed and scanned me, whispering to themselves in both triumph and amazement) then they left. I never got their names. They may have been drunk. No one mentioned them later or would admit that anyone had been there. I asked. It was not in the records either.

    First thing the next morning, chief of surgery was in my room with strong admonitions and a list of tests for the floor nurses. That was a long day. My case now had teaching interest. That means I was going to get top care but that it was really serious ~ call that the good news and the bad news all rolled up in one. The next day was surgery — by the same chief, with every resident assisting. I would hope that three night visitors that never were made the cut to assist.

    If I could, I would wish you drunk residents or something equally comparable and effective. This might not be the best time to see Hospital again (or maybe just the time)


    • scottx5  On August 30, 2014 at 11:13 PM

      Great story Vanessa. I slept one night behind the coke machine in Abbotsford BC and threatened everyone at the nursing station at Miseracordia in Edmonton that I’d be as crazy as my room mate if they didn’t shut him up and got moved to a quieter room. At the university hospital I hallucinated the whole stay so they tied me down and whispered a lot. The new nurses used me to warm up their blood taking skills in the early AM because I was quiet and had “big veins to poke.” Wonder if odd things are part of the medical plan? The “cure” involves midnight visits and borrowed machines. A kind of theater of the sick?

      My problem is freaking out and having no apparent regard for their solemn speeches. I need a new strategy though. Actually have my full medical record in screen shots and there’s interesting things in the margins. If I print off a condensed version it can be printed on a golf shirt as a bonus prize for diagnosing me correctly:-)

      I’m actually pretty good under duress and just don’t like losing it. I expect fuck-ups and pain but the casual killing of me irritates. It seems so uneventful to just go and pop-off.

      Have a copy of “Zuni Spirits” by David Austin Riggs and Darlene Meader Riggs. Beautiful book I bought for the Native Arts program’s collection at the local college. They aren’t interested so if you know someone down there who can use it let me know and I’ll mail it.

      • VanessaVaile  On August 30, 2014 at 11:50 PM

        Just imagine what havoc we could wreak on a hospital together….Don’t go pop-off and let them off the hook

        Let me check. I think the local arts council is trying to build a community arts library

      • scottx5  On August 31, 2014 at 1:12 AM

        This might sound unrelated but living in a small town without house to house postal delivery we have to pick up the mail at the town post office. When someone dies here their funeral is posted on the PO entry door and every day I pick up the mail I get to guess how each unfortunate person was killed by the local doctors. Almost as interesting as the old Wanted posters and means I don’t need to read the local paper.

        I don’t think either of us will go quietly into the night:-)

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