• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

A Doctor's Wake-Up Call on "Awareness" Day

pollycbr125

Senior Member
Messages
353
Location
yorkshire
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
 

citybug

Senior Member
Messages
538
Location
NY
When you tell everyone they want to include you in a study say WPI and the National Cancer Institute, just because.
 
Messages
37
Location
South Carolina
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?
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
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!
 

oerganix

Senior Member
Messages
611
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...
 

caledonia

Senior Member
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
 

Francelle

Senior Member
Messages
444
Location
Victoria, Australia
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.
 

sproggle

Jan
Messages
235
Location
Teesside, England UK
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

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
 

MEKoan

Senior Member
Messages
2,630
What we all feel...


i_love_yes.jpg
 

flex

Senior Member
Messages
304
Location
London area
this ones for your stupid doc

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

flex

Senior Member
Messages
304
Location
London area
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]
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Is there a university nearby? Could we hire a law student to come and be your advocate?

I'm flabbergasted at the wheelchair debacle given your vitamin d deficiency. Some online sites sell/deliver lightly used electric wheelchairs http://www.used-wheelchairs-usa.com/forsale.cfm?category=jet . We could fundraise for that, but would the staff let you use it?

Rest up and don't rush to answer any of these questions.

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.
 

leelaplay

member
Messages
1,576
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:

I don't post but <snip>I'm sending you this note because you have already noted the need to be careful in helping Dr. Yes.

I was glad to see all the support for Dr. Yes but I remembered a possible problem with financially helping a medicaid patient. I'm not up on the regulations, but I remember my barber's very ill son was on medicaid and food stamps. My barber was helping his family pay for something that seemed like no big deal and next thing they knew they had problems with him qualifying for medicaid or food stamps or both.

Sorry I only know enough to say to the group: be careful about buying Dr. Yes tests or wheelchairs or anything else without first checking to make sure it doesn't inadvertantly disqualify him from government assistance.

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.
 

oerganix

Senior Member
Messages
611
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.

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.
 

jackie

Senior Member
Messages
591
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)
 

jackie

Senior Member
Messages
591
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 - )
 

jackie

Senior Member
Messages
591
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.