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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Friday, October 4, 2013

Friday Tidbits:The Vietnam War & Where Have All the Good Doctors Gone?

What was so special about the middle to late '60's and early '70's?

It was a magical decade.  We had the best music and we knew it, just an example.  After all, who doesn't love "Puff the Magic Dragon," - still?  My son and his wife sing the song to that baby who will arrive next year (Mandatory "Knock on Wood" and a "tphoo! tphoo! tphoo!")  He remembers me singing it to the kids when they were growing up and then as they got a bit older, pretending they were Peter, Paul and Mary, one of the boys with a broom in hand as a microphone.

But there was a lot of ugliness back then as well.  The Vietnam War was tearing this country apart.  It ripped families apart when fathers who had fought so valiantly in World War ll were more than upset that their sons would not go to war to fight communism.  It was an ugly era in too many ways: the Cold War, the Cuban missile crisis, the assassinations of President Kennedy, his brother Robert and then Martin Luther King.

So what good came out of that God-forsaken war where too many lives were lost?

It's an interesting observation, in my most humble opinion.  Yeah, right.  My "humble" opinion?  More like "I can be wishy-washy about a lot of things but my brain tells me I am right on this one."

There was that ugly draft which every young man wanted to avoid and each dreaded turning 18.  If you got a bad number on lottery day you had two ways of staying out of Vietnam: a) go to theological school or b) go to medical school.

Many wanted to get into medical school, theological school not so much. The probability of getting into an American medical school became nigh to impossible.  We learned a lot of new names of countries and cities like Guadalajara and other such places where the rejects, the wannabes, went to medical school with questionable medical educations.  4.0 average didn't get you far in the States, nor even the holy MCATS. You had to be perfect and then a whole lot more.

Our brightest were not stupid.  They knew that if they worked hard (impossible hours, up to 110 hours a week, now since made illegal) they would have a nice income, a secure life, the "American Dream."  It wasn't an easy route to get that education and all the training.  However, if you could manage it, it kept you out of the war and it set you for life. You were respected.  People looked up to you and trusted you.  Your patients loved you, for the most part.  The doctor saw a patient who needed hospitalization and the patient went in. Doctors talked to their patients and listened to their patients.  A 10-15 minute appointment was absolutely unfathomable.  If a physician felt that his patient needed testing, it WAS done.  If he felt that a patient needed medication, there was no snot-nosed insurance person with a high school education and no medical training whatsoever overruling a doctor's opinion, a doctor who'd had four years of university, another four years of medical school, then one year of internship to just become a doctor but many more years if specializing was where you wanted to go.

Times have changed, however.  Unfortunately. Gone are the brightest and most talented going into medicine. And why go into medicine?  Insurance companies overrule every opinion physicians have, they dictate to hospitals - and doctors are scrutinized for more things that go on than are imaginable. Who needs that hassle? There are so many easier ways to make a living.

Well, I'm totally fed up.  I moved to our town 31 years ago and the town had excellent medical facilities, great doctors.  Now it's all gone.  The doctors of my era are all retiring early.  The ones coming up are basically robots.  They are chickens.  They have no guts.  They have no stomach, no principles.  Yes, there are exceptions.  But therein lies the tragedy: they are exceptions.  Exceptions.  Really?  We want and expect only exceptions?

Last night I went to the ER for severe everything.  How to organize my thoughts when I, who does NOT allow myself to cry about pain and my health, was screaming at the top of my lungs sobbing for two solid days, feeling like my guts were being ripped apart and the nausea was killing me, just the two loudest squeaky wheels. (This all so Cliff Notes stuff of what went on.)  None of my meds were working.  My daughter wanted me to go to the ER to get some help. I finally called an ambulance in the middle of the night (giving the neighbors yet another show) because I was afraid the neighbors would call the police from all the screaming, afraid there was a murder going on in our house.

This was worse than the birth of my first child, a 10-pound wonder where I had a 36-hour, contractions-every-2 minutes-apart labor, right from the start, back labor with mid-forceps delivery and losing half my blood volume in a fraction of a blink of an eye, causing 3rd degree lacerations and the doctor screaming orders, the delivery room in total chaos while my body was jerking off the bed, every one holding me down as the doctor tried to do a whole lot of sewing to a uterus that wouldn't contract.  We picked our doctor carefully in New York, finding one who'd been educated in some of the world's greatest medical schools (Great Britain, Germany, Israel) and ended up needing every one of his talents to keep me alive.

So, why the hesitation in going to the ER?  I've, generally speaking, had great medical care.  I freely admit that I've basically had the champagne of medical treatment, not having to deal with too many robots. Well, everyone with the DD knows this hesitation to go to the ER, it's a no-brainer.  Once those words, "Chronic fatigue" and "fibro" are uttered or seen on a chart (IF they even read the chart, a whole OTHER issue) that negates everything.  You are nothing.

Last week I had two ER runs and returned home in worse shape than when I went in, another horrid story I've not gotten to.  So I did not want to go at all now.

It took the "super special IV person" - a very wonderful soul - 45 minutes to find the vein she could get into. Such fine work I've never seen done to my poor veins. A truly amazing job.  Then when she got half the blood she needed, it stopped coming out, a common problem with me.  I had a CT scan of my abdomen this time (last week was a CT scan for the head due to my many falls).  The CT scan technician was a dear. When she asked if I wanted a cool washcloth to my forehead I realized that I must be running a fever.  Yes. I was indeed.  It was 103 degrees - high for a normal person, but my temperature normally runs 95.  The BP, which lying down should be, for me, 90/65-70 was now a whopping 151, another "tell" as to how I'm doing.  But I'm being told it means nothing.  Then why, pray tell, take the numbers in the first place?

And the CT scan of my abdomen?  What could we deny here?  What can we possibly conveniently overlook?  I have pancreatitis.  Period.  It shows up.  I have numbers AND images.  But oh no.  It's not a biggie, it's all imagined.

I was told it was just like a bit of a flu.  I was not given any instructions other than a cruddy and badly copied explanation sheet, not discussed at all with me though throughout the sheets "they" kept saying, "discuss blah blah blah with your doctor."  I was offered morphine for pain.  Morphine does not work for me as all my charts from 1988 and on document.  I asked for Demerol because it's the only medication that has worked in the past. No, can't have Demerol.  Dilaudid?  Offered and then suddenly they decided to retract that.  No. Only morphine.  I'd never had Dilaudid but at least I'd have a chance of it working.  But why take the morphine if we know it won't work?  It was the "old major medical center mentality" we'd experienced for two years with my daughter....again where pain was the issue and nothing was done about the pancreatitis whatsoever. Though lets be clear: my daughter's pancreatitis and mine are/were worlds apart, with her.... well, I just can't go there.

The doctor did not tell me that I must eat as little as possible in the next four days - though the sheet did! - with, as my rheumy advised later, only a couple of teaspoons a few times a day of applesauce and no more.

Coincidentally, I'd stopped eating six weeks ago because in the past year I've developed another weird symptom: pain upon eating (or even drinking water unless it's practically frozen), much like a body migraine. I've been told by five excellent doctors that they've heard of this phenomenon but that no one knows why this happens. So six weeks ago I stopped eating, choosing the not-eating pain over the eating pain - a good way to lose 30 pounds!  I was, luckily, taking an antibiotic for a badly infected pinkie which looked so gross I'd be embarrassed to post it - and come on, I've posted some really embarrassing stuff here, doozies.

In other words, it's a good thing I wasn't eating and that I was taking the antibiotic because those are the treatments needed.  Yet no history was taken in the ER, no questions asked about what medications I had taken that day or even yesterday.  Nothing, nothing, nothing.  No urine test, no IV fluids for a very dehydrated me.  Nothing, nothing, nothing. Chest pain not a factor at all.  Blood in the (oh G-d, do I have to go here? You know...don't make me say IT!)

And here I stop until the next post.  There is still so much to tell of this fiasco.  For the nausea medication I had to wait hours - but that's just a tiny morsel of the nightmare.

But there is a moral to the rehashing of this story.  Allow me to tell you this: try to stay away from those wimpy physicians who are too young to remember the Vietnam War and are doctors in name only.  Just as anyone in the medical profession will tell you, try not to go to a hospital in July and August (because everyone is just starting), so too it is good advise to try to find the old doctors out there who were our brightest and who have guts. Whether they didn't go to Vietnam because of principles of an undeclared war or they wanted to stay away from battle, we, the patients, were lucky to have some awfully gifted doctors with many advances made by those talented men in those years. Now these gifted people go into technology or business. Who needs all that aggravation of being a doctor?

I miss those day, those doctors, the compassion, the care and their knowledge.  Peter, Paul and Mary should have added to "Where Have All the Flowers Gone," the phrase "Where Have All the Good Doctors Gone?" I hear it over and over and over again.  Doctors making gross errors that cause deaths.  OK, errors will always happen.  When my daughter developed pancreatitis on her death bed keeping everyone jumping, we realized it was extremely bad luck with medication, and we didn't blame the doctor. We knew he had done his best.  But he was one of a few exceptions we came across.

I'm extremely proud of being an American. Embarrassingly happy to be an American.  But what I've seen now in the last few years embarrasses me. It is embarrassing that our country has come to this.

And lest we forget those young men, who DID go to Vietnam, thank you.  As to those brave souls who didn't make it home, I think of you each day, hand to God.  You were true heroes.  For those of you who remember that music and that era here's a bit of music that may and should make YOU cry.  Yes, where HAVE all the brave soldiers gone?  But after the experience I've had these least few years with hospitals, I can't help saying, Where have our great doctors gone - the ones who are supposed to heal us?  Where have they gone and when will anyone learn?

And on that cheerful note, I say the usual: I hope every one is doing their very best - only better!  Ciao and paka.

NOTE: I want to thank all of my twitter family for the help in getting me through the ER nightmare.  There was so much drama going on and not the good kind.  Without the ability of having a health care advocate beside me, you kept me sane and your prayers helped.  Things are really still bad but the kindness of my friends was comforting beyond words and I'm for once not embarrassed to say, as I type this, that I'm in tears because so much support was out there for me.  Words will never describe, other than to simply say, thank you.  And Linda, thanks my dearest friend of 43 years, for all the hours of conversation in the last few weeks/days and Sharon, my Villa sister whom I've never met, thank you for all your words, those nuns up there matching us up.....you know how much I love you two wonderful women.  And Mariula, спасибо дорогая. And, of course, my wonderful daughter who wasn't able to be there today/yesterday, but is now outraged and going ballistic because she's been there with all this digestion thing, though her's was in another stratosphere, my pancreatitis small potatoes compared to what happened to her.

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  1. Beautiful. Eloquent. Outstanding. I completely agree with all points! How can this be made required reading for large segments of the population? Perhaps the best article/posting you've ever written. Thank you for what you give to all of us and thank you for your friendship! Love, Sharon

    1. Thank you, Sharon. I was so afraid to publish this but I feel "safer" now that I've seen the response! xx

  2. A thought provoking and heartfelt post, thank you. It would be good if it could be published. I'm sorry about your drama in the ER, poor thing. The injustice of it made me mad! So glad you had your twitter family and friends to support you. Take care, Alpa xx

    1. Welcome, Alpa. Thanks for writing in: I love comments. A huge apology for taking so long to respond, but I've been a tad "under the weather." ;) xx

  3. Hope you're doing as ok as you can be. Not on FB/Twitter otherwise would look for you there. Just to let you know I am thinking of you. Alpa xx

    1. And so very much appreciated, Alpa! Thanks! xx

  4. Irene - So sorry to hear you have pancreatitis! That is certainly a serious condition. I'm sending you positive thoughts and prayers for you to feel better.
    Take care,

    1. Thanks so much, Martha. Positive thoughts and prayers are not just appreciated but needed as well! xx

  5. Hey I have a quick question about your blog, could you email me when you have a chance? Thanks! -Cam

  6. Hi again. When my wife is in extreme pain she doesn't scream; she cries. Breaks my heart. I work in a place that trains people to be doctors. You are right to say that the hospital administrators and insurance companies are ruining things.