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The Naive Patient

Discussion in 'Phoenix Rising Articles' started by Firestormm, Sep 17, 2013.

  1. Shell

    Shell Senior Member

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    I'm reading Dr Maria Montessori's The Montessori Method at the mo.
    Here's a quote (she wrote this in 1912) that I think fits with our problems with medics
    my underlining.
    I think (from my experience teaching BSL to medical students) that too many doctors are in it for "world" and not for medicine. And they fail at it because of that.
    If only some doctors who get rewarded for their gross mediocrity would notice this.
  2. liverock

    liverock Senior Member

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    One the biggest dangers for PWC's poor sleep is RF(radio frequency) radiation as you point out Victoria.
    Computers and TV's have some RF radiation but mobile phones have much stronger radiation,and in particular cordless phones. The Docking station on a DECT(Direct Elecronic Cordless Telephone) is emitting RF radiation 24/7 even when the phone is not in use . Its acting like mobile phone mast inside your house and it will be affecting you all the time !

    A lot of people have these in their bedrooms, which is the worst possible place, and after throwing them out, have recovered from insomnia and other fatigue problems which they have suffered from for years in many cases.

    http://www.independent.co.uk/life-s...phone-radiation-wrecks-your-sleep-771262.html

    If you definitely,definitely, cant do without a cordless phone Siemens have now brought out an ECODECT range of cordless phones, which shuts down the docking base radiation when the phone is not in use. But dont have any cordless phones in your bedroom, they are bad news, especially for us. I still have the wired phone,Im already tired enough without the addition of this electrosmog from cordless phones.

    http://lessradiation.co.uk/low-radiation-eco-dect-digital-cordless-phones/

    (Sorry for going off the point of your blog Jody, just felt it was an important point to make)
  3. xchocoholic

    xchocoholic Senior Member

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    Ok, so I understand that some are in it for the money and some for the recognition
    but why are so many health professionals rude to patients ? This includes
    those drawing blood, or nurses or those just delivering the meal trays.

    Why the hateful attitudes ? Do they hate their jobs and take it out on patients
    because we're vulnerable ?

    fwiw, I've met some nice ones too. Sadly, I'm always shocked at this.
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    One of the many cases that gives the lie to the oft-repeated defence of high salaries in certain professions:

    "We have to pay high salaries to get the best people."

    Wrong. High salaries attract the greediest people, not the ones who really care about making a positive contribution. They would do it for much less.
  5. leela

    leela Slow But Hopeful

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    "consult with the ocean for everything else."

    DB, right here is why we love you!
  6. Valentijn

    Valentijn Activity Level: 3

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    From doctors it seems to arrive from having their pet theories about ME/CFS, and despising us as psychosomatic hypochondriacs who are wasting their extremely valuable time by having neurological or other symptoms. I get the impression they think they could be off curing cancer if they didn't have to deal with us :rolleyes:

    Regarding nurses and phlebotomists, etc, I've found that they have vastly better attitudes in the Netherlands than they do in the US. Like, every single one of them :p My best guess is that they get paid better, they aren't over-worked, and they can easily go on benefits if they do get burnt out from being over-worked. Basically they seem very happy and unstressed, and seem to enjoy interacting with patients.

    It's a little creepy at first :D
    xchocoholic likes this.
  7. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I am also slowly, but steadily, getting worse. I don't think we have done anything wrong other than not be able to figure out what to do to stop it. Since the medical community cannot figure that out either, I don't think we can be blamed for that.
    taniaaust1, Valentijn and Tally like this.
  8. Tally

    Tally Senior Member

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    Your words are encouraging. But I gave up my faith in doctors long ago so now everything is resting on my shoulders. At least that's how it feels.
    xchocoholic likes this.
  9. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I have had some really bad experiences with allopaths.

    I was in college when I got the infection that started my ME. I returned to the health center twice to tell them that I was not recovering well. Both times I was told that since my temperature and white blood cell count were low (low, mind you, not normal), I could not be sick. Apparently, the only symptoms produced by any disease known to man are high temperature and high white cell count.

    A few years later I was living in another city and developed the itching and burning in the arm pits and 'leg pits'. Since I now had a physical symptom beyond low energy/PEM/cognitive dysfunction, I decided to see another physician. I told him I had not felt well since a viral infection a few years before and wondered if this might be related. He told me that there was no such thing as a chronic viral infection. I wondered how he explained shingles and HIV, but thought it better for my brain not to ask.

    I am now seeing an integrative physician who keeps up well on current medical information. (Would it be sexist of me to mention that she is also the first female physician I have seen?) She has or has had at least one other CFS patient, but I am still not sure how well informed she is about it. She was willing to take my word for it that I needed Xanax. She is good for general health issues, which we seem to have a lot of, such as adrenals, thyroid, vitamin D deficiency, liver problems, and sleep. I probably got better thyroid treatment from her than I would have from most endocrinologists.
    xchocoholic and Valentijn like this.
  10. xchocoholic

    xchocoholic Senior Member

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    Maybe they just feel better dealing with medical problems they can solve.

    Everytime I have to go to the ER for kidney stones I find the nicest most
    professional people you could imagine. They follow a standard protocol
    and I get what I need. It's a win win for everyone. Ok, I ran into 1 snaffoo once but it's partly because
    we didn't know I couldn't handle flouroquinolones.

    As a perfectionist I'd be ornery if I had to face failures regularly. I definitely
    couldn't work in the health care field because if how much patience is
    required.

    I like people so I'm trying my best to come up with justifiable reasons for
    their behaviour. Honestly I can't say that I wouldn't be a jerk if I had to
    do their jobs. More pay and better hours couldn't help me. lol.
  11. Jody

    Jody Senior Member

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    taniaaust

    Sorry to hear you ran into a doctor of the same disdainful ilk as my former doc. Or, rather, a number of them. I'm particularly sorry to hear that naturopathy has not been any help either.
    taniaaust1 likes this.
  12. Jody

    Jody Senior Member

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    MeSci,

    It would be great if doctors would read our reports of what we go through. I think many of them would find it quite eye-opening if they spent a little time.
  13. Snowdrop

    Snowdrop Senior Member

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    Hello Victoria

    I understand your confusion with regard to PWME and lengthly computer time. I have no real knowledge of your specific level of functioning but from my housebound and cognitively compromised position I might be able to help you with your confusion regarding lengthly computer use.
    As I'm sure you know, most people want to be engaged with the world outside themselves.
    There is a level of functioning among us where one is too mentally and physically sick to engage normally but not so sick that they can rest quietly for lengthly periods because their mind is wired up and wanting release. If you can't do more than be on the computer the alternative is to lay there doing nothing at all, which I have discovered is a lot harder than it sounds.
    There is a problem with going too long but some of us have discovered that the alternative doesn't really bring relief either. I've tried. I don't sleep more or better, I find it more depressing because of the lack of distraction.
    Hope that helps explain.
    Valentijn, MeSci, Purple and 2 others like this.
  14. xchocoholic

    xchocoholic Senior Member

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    Well said Snowdrop. Some of us are here too because we feel best when supine.

    And some of us find staying up on the latest health info soothing. Once you get familiar with the medical
    terminology it's not overwhelming or stressful.

    We have a lot of incredibly intelligent, kind and well versed people here so hanging out here is
    comforting. tc ... x
  15. rosie26

    rosie26 Senior Member

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    I agree Snowdrop, PR provides a necessary and positive distraction from the intensities of ME. I now have arranged a set up where I can lay in bed with laptop on my lap. I can close my eyes for awhile if I want to.

    I don't feel so crazy alone in my illness, others here are going through the same thing. I miss work and all the day to day interactions with others. I did deteriorate when I first bought my laptop 18 months ago, the reading and using the keyboard inflamed my ME terribly. Fortunately I discovered D Ribose and that has helped eased some inflammation.

    For me it's a toss up, computer or insanity. I choose computer. x Interestingly I have been sleeping better since having the computer, along with my melatonin tablet. I feel more positive in dealing with my ME symptoms and connected to the world from my bedroom.
  16. Firestormm

    Firestormm Guest

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    When I was worse than I am now, but had emerged from the very worst stage and could again tolerate a computer - and [shiver :eek: ] forum interactions - I found them preferable/more tolerable than face-to-face conversations or even telephone calls: which I found to be very demanding and very draining.

    I still think that personal interactions of that nature - quick-fire thinking etc. - are the most draining and demanding. Of course now it is all about balance - though I guess it always was really, but in different ways.

    There does come a point - reached sooner for some than for others perhaps - where the stimulation (whatever the source and with varying (I think) predictability) becomes too much and if we persevere it can indeed result in less chance of a good sleep - or even a period of relaxation and some better chance of recharging.

    We are all different but all rather sensitive to stimuli in whatever form from light to heat to mental input etc.

    What a very strange but beautiful bunch we all are :)
  17. xxRinxx

    xxRinxx

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    My doctor was quite similar except that he did feel genuinely bad he could do squat to help me. He threw everything but the kitchen sink at me, and nothing..had every test done and somethings would be off or strange and he'd be scratching his head. His PAs were royal asses though..everytime my main doctor was busy and I had to see them, they would say '..Well you're probably just depressed, heres some anti depressants' or 'I can't find anything wrong with you' and stare at me like I was making it up! They did everything in their power to hurry me through the office and shove me the heck out. They figured if antibiotics didn't help, I was just a big fat liar.
    It wasn't until we saw something on freaking Oprah that we thought '..hey..this might be what I have!' and presented it to the doctor..and he went 'Oh..You know that sounds about right'. I just thought..'WHY DIDN'T YOU COME TO THAT CONCLUSION BEFORE!?' and he sent me to get a tilt-table test and FINALLY had a 'good'(meaning I failed the hell out of that test) result that sealed the deal.
    I dislike conventional medicine with all that's in me. I don't even take Ibuprofen for headaches. I take the three medications I /have/ to, and the rest are holistic. I take natural cures for colds and viruses, and I refuse to have another anti-biotic get anywhere near me. I will forever dislike Doctors with everything in me!
    xchocoholic and Valentijn like this.
  18. Valentijn

    Valentijn Activity Level: 3

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    Being online gives me a way to regularly interact with people in a manner which I can handle. If I get too exhausted, I can simply say "bye!" and disappear for a while.

    It also gives me a way to do something constructive. For a while I was a moderator here, which I stopped when my OI was too bad and unpredictable for me to continue. It felt very good to be doing something to help others, while others were also helping me.

    When I got my OI treated, my ability to engage in intellectual pursuits increased dramatically. Instead of going back to moderating, I've spent my time reading reams of research, working on letters to be published in scientific journals regarding ME/CFS, writing articles for this forum, and designing a program to analyze 23andMe results to show rare genetic results or results regarding the functioning of specific genes.

    I still have trouble with novels. I can manage them once in a while but am usually a bit wiped out afterwards. Same with most TV programs that aren't very simple or something I've seen before. On good days I can sit in the garden for 10-15 minutes and pull weeds or pick strawberries.

    If I weren't online, what would I do all day? Lay there and try to sleep? Watch the birds? Think about all the things I can't do? The internet is what we do because we can't do the things we'd rather be doing. It might not be ideal, but it's the best alternative that many of us have available.
  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I so agree. I would be bored out of my mind if I couldn't use the computer. In any case, my business involves selling things online, I buy a lot of essentials online, and I moderate/co-moderate 3 forums as well as participating in others. I get lots of campaigning emails and forward them to relevant email groups.

    I have a great thirst for knowledge, and learn a huge amount online - things that help me and others. If I want to identify an animal or plant, I look online, and sometimes post photos on ispot to check the identity for my nature diary.

    I take photos and videos and edit them on my computer. I'm trying to develop a business making nature videos, and the internet has been vital for learning how to do things, getting video and audio software and using it.

    I have copied all my favourite vinyl music onto the computer and created mp3s.

    Computers are a huge part of many people's lives, and thank goodness for them!
  20. xchocoholic

    xchocoholic Senior Member

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    I Googled why are doctors jerks and found some interesting
    articles. One by a doctor caught my attention. He suggested
    we thank our doctors for taking care of us. That really
    opened my eyes as far as how I looked at the doctor
    patient relationship. I had been looking at this completely
    from a job angle, not human interaction. I thanked
    my doctor yesterday. : )

    fwiw, the more I learn about our bodies and
    how different we are, I appreciate how complicated
    working in health care must be.
    Sasha likes this.

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