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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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A Doctor's Wake-Up Call on "Awareness" Day

Discussion in 'Action Alerts and Advocacy' started by Dr. Yes, May 12, 2010.

  1. pollycbr125

    pollycbr125 Senior Member

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    Dr Yes i really dont know what to say I had no idea you were living in a nursing home though from what you have said it doesnt sound like much of a home .:Retro mad:

    your day will come when you can kick this jumped up little nerd of a doc right where it hurts . how he ever became qualified ive no idea if you ask me hes in the wrong job , traffic warden might be a more suitable vocation for his little hitler tendancies .

    love and hugs from yorkshire i really feel for you :hug: x x
  2. citybug

    citybug Senior Member

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    When you tell everyone they want to include you in a study say WPI and the National Cancer Institute, just because.
  3. tolduiwuzsic

    tolduiwuzsic

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    I'm with Tammie! Please everyone, keep Dr. Yes in your thoughts and prayers constantly today. I'm also down for a good butt-whooping. My folks have used prayer mixed with butt-whooping for years and I can assure you it works quite well. In fact with Prayer, Flash-mob and Butt-Whooping, we can't lose, right?
  4. maryb

    maryb iherb code TAK122

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    Dr Yes, glad you were able to tell us your tale, its so hurtful, exasperating, maddening and all the other things, but I'm so glad you felt better for telling it. We are all very angry for you but as you acknowledge you have to live there and making waves is not always a good thing.
    Do you think a strong advocate on the outside, someone who is near enough to be able to call in and support your wishes/needs is an option? But who?
    I hope something changes dramatically in a good way from this, a VIP test is a good start though. You are right about the wonderful people on this site, a better forum I have never been on.
    If I could call in to see you I would, can't fly though so at 20 steps a day from UK to NY thats......... well don't expect me today!
  5. oerganix

    oerganix Senior Member

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    Glad to hear you're a little better, Dr Yes. I, for one, do not need to be thanked personally, although I'd be honored to get a pm from Dr Yes. Save your energy...we've all been thanked enough, IMO.

    Re the ombudsman, I'm sure you've thought of it already, but the first thing to get clear on is that you don't need anymore hassle or even a hint of retaliation from the place you're in. Your advocate needs to find you another place to live before alerting the present place that it is in trouble, if that should happen.

    What I was really thinking is that there might be a person who could just 'be on your side' when it comes to getting someone to push the wheelchair or get better nutrition. Hospital/nursing home food could cause a bad case of malnutrition all by itself...it's usually full of sugar in various disguises and you don't need that to feed your candida. The last time I was in the hospital I asked for a sugar free diet. They brought be a charred hamburger on a white bun with ketchup already applied;sugar in the bread and ketchup. A couple of leaves of lettuce drenched in French dressing; more sugar. A dish of sweetened applesauce; more sugar. And Jello! for dessert; more sugar. I ate the meat and washed the lettuce in my water pitcher and ate that. "Not hungry?" said the nurse when she took the tray. "Starving" I said "but sugar is poison to me." "There's no sugar there" she said. "You've got a sugar free diet order". Duhhhh!

    Someone to talk to personnel, if not the docs, would let them know that you are not without moral support and their behavior isn't totally anonymous. The right ombudsman could do a lot to help without pissing anybody off and without having you kicked out or punished.

    If only we could come up with a newspaper with headlines "Nursing Home Loses Suit for Mistreatment of Disabled" splashed across the top; and you could casually leave it lying across your bed...
  6. caledonia

    caledonia

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    A geriatric care manager might be just the thing. They also deal with the disabled, not just the elderly. They take the place of what your family would do for you, plus they have all kinds of connections to other professionals and good knowlege of facilities and resources in their local area.

    Of course, it costs money which would be an out of pocket expense. But I could see hiring one temporarily to get you to a new better place to live. Maybe the people here on the board would be willing to donate pay for it.

    Here's a little more info:
    http://en.wikipedia.org/wiki/Geriatric_care_management
  7. Francelle

    Francelle Senior Member

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    Oh goodness me!! Perhaps with fatigue and malaise we can only hope that this doctor is getting CFS! If only it WAS just TWO symptoms we’d be laughing (altho’ I am certainly not demeaning the type of debilitating fatigue & PEM that many of us have). What an ignoramus and how sad that people in the medical profession are so closed to the fact that they don’t know everything there is to know!

    All joking aside this kind of discussion usually leads to gross inconsistencies. For example:

    He said "You get away from here where you live like a King and instead have to look after yourself, and your Chronic Fatigue Syndrome will disappear." THEN he says : “It doesn’t explain all of this”. So he DOES admit after all that there is something further to explain?

    Then he says: “Chronic Fatigue Syndrome is not a disease. It is a wastebasket. It is what some doctors tell you you have when they can't figure out what to do with you." …and I say well if they can’t figure out what to do with us then hurry up and get moving – what are they waiting for? Go ahead and do the right testing and give us a proper ‘mainstream’ diagnosis – it surely has to be found if they know everything!

    This brings out the GRRRRR in me! So sad you had to go through this but sounds like you stood up to him very well.
  8. sproggle

    sproggle Jan

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    If this is possible we surely have to try, this has gone on far too long we need to plan his escape!!

    I for one would donate what I can in a heartbeat &I'm sure most other sufferers would feel the same way (getting emotional now -for gods sake don't tell anyone lol! :ashamed:)

    Jan xx
  9. calzy

    calzy Senior Member

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    Im still up for donating $ if Dr. Yes agrees. IE: blood draw, testing etc.
  10. jewel

    jewel Senior Member

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    Ditto. Tell me how, when, to whom...
  11. Koan

    Koan Be the change.

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    What we all feel...


    [​IMG]
  12. flex

    flex *****

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    Dr. Yes this ones for you


    [video=youtube;kGeCeK85sUg]http://www.youtube.com/watch?v=kGeCeK85sUg[/video]
  13. flex

    flex *****

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    this ones for your stupid doc

    [video=youtube;xGE4dnrPPZQ]http://www.youtube.com/watch?v=xGE4dnrPPZQ&feature=related[/video]
  14. flex

    flex *****

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    and this ones for all of us and the way we help each other and so we realise there is hope

    [video=youtube;zVdfANgPAz4]http://www.youtube.com/watch?v=zVdfANgPAz4[/video]
  15. maryb

    maryb iherb code TAK122

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    Just wanted to add think seriously about the wheelchair, if there is room a powered one would make life so much easier for you, just say yes and we'll all help to get one.
  16. shrewsbury

    shrewsbury member

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    I just received a PM that I think makes an extremely important point. Personally, I'm trying to figure out how to get my white horse and armour on the plane to get to NY and find a geriatric advocate whose has fantastic references and a track record that check out who can most effectively help Dr Yes. And was wondering if there would be pennies left after the flight to pitch-in on a whellchair.

    But please read this message:

    A thousand thanks to this person who stepped out of the lurk to make sure that our wish to help Dr Yes doesn't end up harming him.
  17. oerganix

    oerganix Senior Member

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    Yes, we need to be up to the minute on such regulations.

    If he is in a nursing home, he is probably not getting food stamps.

    How about "we" buy the wheelchair and "loan" it to Dr Yes, IF it should turn out to be a problem, which I am not convinced it is. With the right doc, it might be possible to get a prescription for one, which Medicare might pay for.
  18. jackie

    jackie Senior Member

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    oerganix...i like that idea!...(if he wants one and borrowing it conforms to all the regulations, red tape and monkey-motion they'll put him through! it seems like each thing you get is balanced by what they take away! how to find out?)...j

    (maybe the rules would be in the medicaid booklet that comes every year - like my medicare booklet...i can look online - but won't know the homes regs though)
  19. jackie

    jackie Senior Member

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    went to "state of new york" - "medicaid website"...it says under faq's: what health services are covered by medicaid? wheelchairs (as well as other equipement and stuff)...BUT I can't tell if that is allowed in a nursing home (dr. y, are you in a state or private home?) will continue tomorrow..too wiped out


    (also, one is allowed to keep "a small amount" of personal income for their personal needs while in a state nursing care facility...don't know how this info helps...but - )
  20. jackie

    jackie Senior Member

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    now i'm too mad to sleep! i googled wheelchairs for nursing homes and found some info from a Physical Therapist in private practice in oregon. ("Debbie Jones, P.T. (503) 692-3404" - don't know if this is a current #)

    She specializes in "wheelchair seating and mobilty" and says that patients must have an individualized assessment for their wheelchairs/use of. BUT she goes on to say that patients (in nursing facilities) are issued a facility wheelchair UPON ADMISSION and these are designed for BRIEF TRANSPORTATION! - FOR THE OCCUPANT TO BE PUSHED!........RATHER THAN SELF-PROPELLED!!!

    no wonder.

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