Poster Child Returns

I have had an infection in my  jaw for ages–perhaps since I had a root canal in the tooth above the infection site in 2009.   The short story is that for the last two months, I’ve been working with the endodontist to take care of the problem.  (Well, also comin’ down, or is that up, from near-dead in hospital, but I digress.  [Thank you Eddie Izzard!])

They are aware of the sepsis and C. diff that tried to kill me and that me taking antibiotics is a tough call.

Today though, I told them that, no, I didn’t want heavy-duty painkillers they offered, that I was ready to try an antibiotic, that it was time to get this infection under control.  That I’m in more danger of another episode of septic shock from the continuing infection than from suffering through another bout of C. diff if I take anitBs.

Through the dental assistant, the doctor asked ME to let HIM know what antibiotic I could take.  What?!

I called the nurse line at the hospital where I stayed–they have my chart and lots o’ information.  She sounded odd when I told her my story about the doc asking me for the research.  She then expressed her frustration:  that dentists do this all the time.  They won’t take responsibility even though they are doctors–f’r’instance they call and ask what meds a pregnant lady can take.  That they know this information but do not want to make the decision.   Sorry she said that she didn’t really have any info, but what she told me matched what I was feeling and it was enough.  I also thanked her fervently for her honesty.

I’m still thinking slowly enough that it took me about 10  minutes to get angry, furious, appalled.  Called the endodontist back and told ’em it was unconscionable that the doctor wanted the patient to do the research.  That I could tell that Dr. Endo was afraid I’d sue him.  Still very angry.

Again through the assistant, the answer was:  could he talk to my GP?  Of course (coward!)!  What is so hard about automatically consulting with a colleague?  Why don’t you talk to each other?   I do not understand.

He does NOT want to be responsible for the C.diff, but he’s OK with the risk of sepsis because he’s already stated that there is no way the infection in my jaw would spread, that it definitely would stay localized.  Wow.

I feel so betrayed.  Again.  How can I trust the medical world?  How many more insults do I have to take while I attempt to get my health under control?

Why can I not be a part of the decision-making?!  I’m so angry I could spit nails.

Why is it OK for the medical types to censor the information they give me?  What the hell?!  This feels strongly paternalistic, which is horrible, but mostly it feels like a pat on the head and go away now.

I have regained lost ground in my emotional state and cognitive powers, but I am far from back to normal.   This morning, one of my Peeps said that I should expect care and concern from the medics, that it was not too much to ask, that it was a very normal expectation.

Bean over at catself wrote a poignant post and so deeply did it resonate that I couldn’t even respond well, could only tell her I was a part of her community.

Now it’s time for me to say:  I need my community.  I need help holding onto this tremendous insult that happened almost 5 months ago to my being and to my little family.   The isolation has reached a peak.  Bean told me about a website that hosts sites for people who are involved in illness, CaringBridge, and that maybe I might think about setting up my own site.  I did.

Like Bean, I notice the deep unfriendliness of the world.   But here, oh dear, this has been an amazing place to spend time.  I started my blog a year ago this month because I simply had to write, but never dreamed I’d become a part of an international community!   Also, like Bean, I feel deep gratitude for all of you who have hung on as I have taken this ride, who have made me laugh, or sent a hug.

If you have the inclination, leave a note, a joke, a picture, a poem, or cocktail recipe there:  CaringBridge.

And, bonus:  there, if you look carefully, you may discover why I call that wonderful guy o’ mine Big Mister!

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17 Comments (+add yours?)

  1. heretherebespiders
    Jul 06, 2012 @ 11:44:22

    I didn’t look carefully enough. Just his name, not anything to indicate Bigness!

    Reply

  2. Kathryn McCullough
    Jul 06, 2012 @ 12:44:31

    Hang in there, my friend. I’m thinking about you. I was in the emergency room last weekend, and you’re right–hospitals/doctors, not an entirely place–to put it mildly.
    Hugs,
    Kathy

    Reply

    • lahgitana
      Jul 06, 2012 @ 12:58:26

      yeah, not a great place to spend time! glad you’re semi-OK; did you actually break any of your parts or did you JUST get those magnificent bruises?!

      Reply

  3. sweetdaysundertheoaks
    Jul 07, 2012 @ 04:23:52

    I hear you! I have been a sickie for a couple of days and for once in my life I got some help from the medical people, a nurse and the pharmacy without making me feel like an idiot and having to write a short novel to explain my situation. Nothing serious here just a head cold that threatened to explode my head and a bad reaction to a change in one of my meds. I am off to click your link. It is a full time job to stay alive once the medical peeps get you.

    Reply

    • lahgitana
      Jul 07, 2012 @ 07:08:53

      hahahaha shouldn’t be laughing at your last line hahahahaha hahahahhah bent over laughing trying to catch my breath! hahahahahah!

      Thank you Pix for your story–oh you described that so well: having to write a short novel! Back in the bad old days (!) when I was on morphine, I had to force myself to hide anything that might seem “untoward” because any minute they’d assume I was an addict! Well, I was, but not in the way they actually cared about. (It was slow-release, but still, taking myself off it was a month-long trip.)

      I dunno–seems serious to me to have a reaction to meds, girl. And head-exploding? OK, really, you haven’t been feeling well, have you?! Hope you feel better soonest.

      And feel COOLER soonest!

      Reply

  4. 10000hourstobe
    Jul 07, 2012 @ 07:43:49

    I think the unfriendliness we notice is the fear people feel as individuals–afraid to make a mistake and be wrong, afraid that lady will sue us, afraid of conflict, afraid, afraid. I also suspect that much of today’s healthcare model as a business has everything to do with the type of care we receive. The MacDonald’s approach to healthcare, if you will–find repeatable processes, manage your risk, and keep your overhead low. Whatever role we have in society, the temptation is to address our own interests first, ahead of the need’s of those within our scope of responsibility. God forbid, if your needs put me at risk, I might HAVE TO serve you in a way that protects me, but ultimately hurts you. (Whenever I hear-read-think the words “I have to,” I cringe.)

    Personally, I think the world is in desperate need of loving kindness for each other and ourselves. I’m sending some your way–loving kindness that is..

    Reply

    • lahgitana
      Jul 07, 2012 @ 09:20:22

      Wow. YOU should be an advocate for change management of the health care business model. We’d love you for it, but you’d get an ulcer.

      That’s a good description–the MacDonald’s approach–and why I have felt so very dissatisfied so many times.

      Thank you for loving kindness. I return it to you. I will also try to keep that at the fore so that I may put THAT in the Universe. …

      Reply

  5. IsobelandCat
    Jul 07, 2012 @ 09:41:08

    It makes me think of a conveyor belt. The person who should be at the centre of things is an inconvenience; ignored, patronised and blamed. Sophie Scott sent me a link to this blog. It is about education, but applicable across the board http://danariely.com/2012/07/07/teachers-cheating-and-incentives-2/

    Reply

    • lahgitana
      Jul 07, 2012 @ 09:48:54

      Oh, man, Isobel, you captured that perfectly: “The person who should be at the centre of things is an inconvenience; ignored, patronised and blamed.”

      I’ll go see what Sophie Scott has to say. Thanks for including the link!

      Reply

    • lahgitana
      Jul 07, 2012 @ 09:59:52

      That link: thinking about how we think, how we get to an end result. Thx for sending.

      Reply

      • IsobelandCat
        Jul 07, 2012 @ 11:15:00

        It is good isn’t it. Now finally reading today’s Guardian where there is news about more streamlining of the NHS. This translates into children’s cardiac units closing in a ‘rationalisation’ exercise. All ve depressing. But a good piece by Zoe Williams that I cannot see online. Excellent quote from the parent of a child who was treated at a unit that is closing, leaving no children’s cardiac units between Newcastle and London, “You put the doctors where people are. You don’t shunt the people to where the doctors are.” NHS safe with the Tories? Bollocks.

        Reply

        • lahgitana
          Jul 07, 2012 @ 12:01:48

          Yes, makes me shudder — that shunting people to where the docs are. We can’t streamline everything. There are simply too many people and our infrastructure can’t keep up in humane ways. Awful awful decisions being made and implemented “for the greater good.”

          There has been a fundamental shift in how we’re treating one another. I am reminded strongly of my halcyon days in the 1990s as an editor at a large corporation–management brought in consultants, highly paid of course, to help us understand one another so we could work better together. Bollocks as you say! It was only the methods for controlling an outcome, the outcome being that the company should be very profitable.

          Halcyon days didn’t last long for me there in my 4 years–I tried–I got involved and spoke up and created committees, but the corporate smoke screens got to me. I couldn’t take it anymore. Then they laid me off, but asked me to please train my replacement who had never done anything resembling editing. Um, WHAT?! I said no and caused quite a furor.

          That rationalisation exercise to which you refer: it’s amazing the words that individuals come up with to disguise true intentions. Just wait until the architects of the changes you’re talking about have a seriously ill child. Then maybe they’ll use their heads for something other than a hat rack! grrrrr!

          Do read Bean’s comment below. She perfectly describes the mess we’re in here.

          Reply

  6. nadbugs
    Jul 07, 2012 @ 09:50:34

    Dear Laurel — dear Laurel — I write here hoping that what I’m about to describe will validate your feelings, and give you a sense that you truly are in contact with reality. A grim reality — but truly I hope if I lay out what I know, that will help validate your feelings about what you’re going through.

    You might not believe the degree to which the medical profession has circled the wagons around itself. I couldn’t believe it, when I researched medical malpractice laws a few years ago. The degree to which the medical lobby has affected the laws of every state I’m aware of is simply staggering. Here in Arkansas — a state not known for the slightest blue hue in its politics — the supreme court actually struck down one small provision in what’s generally labeled “tort reform” legislation. Even the AR supreme court drew the line.

    I was flat-out shocked, to see the concerted and incredibly effective power the AMA has brought to bear on the legal fabric of our nation. Every state in the union has been affected.

    I simply could not understand the degree of passion that must have fueled the manipulation of data, with which AMA swayed the legislatures — it was extreme. It was verifiable. I have the brief. I have the figures. They are utterly shocking, the degree to which the medical lobby has pointed the finger away from itself and at the very injured people who have suffered most.

    The only answer I could find that made any sense to me, as to the “why” of the concerted and full-bore no-holds-barred drive of it all — was this: The medical profession is an art, not a science. Doctors do their best, but nothing is certain.

    So rather than doctors straightforwardly and transparently being “real” with that — instead they lodge this full-bore “best-defense-good-offense” assault against the one arena we have left, which is the courts.

    I also found that the vast, huge, like-99% majority of people who have been grievously hurt, who even die — those hurt, or the families of the dead — do NOT sue. The one percent who do sue are those who have been so stonewalled — they sue JUST to find out what happened! To feel some peace of mind. If possible. It’s not about $$. It’s about dignity.

    I found out myself, in a reverse way I’m glad to say. After my father died on the operating table, I went back to the hospital to talk to the heart surgeon. There were some decisions he made that I didn’t understand, and I really wanted to understand.

    This doctor knew I was a lawyer. It didn’t matter. He treated me like a human being. Not a threat. Before our meeting, he sat down with my dad’s file and refreshed his memory. He then spent :45 minutes with me going through the sequence of events. In the end, he helped me see: They really did all they could. And it was just my dad’s time to go.

    How did this miracle actually happen, that a heart surgeon would sit down with me, with no witnesses present, just him and me, and talk turkey?

    Simple. The doctor was a visiting fellow, from New Zealand.

    He was not American.

    I really hope this long novel of a comment helps you, dearest gal. Your outrage is founded in reality. The system is so broken that any conceivable fix is quite beyond my imagination.

    I would love that all of us could find succor, in our helplessness, when we meet the kind of treatment you’ve described. We must find this succor, it seems, elsewhere. Not, by and large, from our doctors.

    Reply

    • lahgitana
      Jul 07, 2012 @ 12:10:59

      Yes, this helps, Bean, to validate my outrage. All my life I have spoken up and it is very tiring. But your “novel” keeps me going, knowing I’m correct in my feelings about how I’ll proceed with my future medical care.

      My god, how sickened you must have been to keep finding that evidence and what it meant. I really really really think you should take your comment and post it on your page, Bean. You are speaking for people who may not trust their impressions–you know: “Surely that didn’t just happen? Shouldn’t that doc have [fill in the blank]?”

      Oh, your description of sitting with the surgeon is lovely, but for a very difficult reason.

      We are the ones who must demand change, but I too am stymied. If the medical schools weren’t Big Business, I’d say that teaching about general medicine clinics is part of the solution. Get to know your GP…. that kind of stuff…

      Then, the ugly head of the insurance-amoral-industry rises and growls to be fed and fed. All the while dispensing fear.

      We’re so screwed! >:-D

      Reply

  7. Trackback: Fight Club | catself

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