Re: A periodic caveat Medical/legal assistance, disclaimers, sleep needs, etc.

[Guest guest]

In ceda , MTLamar@a... wrote:

As I try to say periodically, anything I write is from my experience. Any

advice I pass on is advice I've gotten from people whom I consider respectable

sources, and is always advice that at least seemed to work for me. I apologize

I must have missed something here, associated with Mark's has said here, as I

don't know what the " I apologize " is in reference to, But, I couldn't agree

more here, on this issue. And to me, the most important issue that I see here,

is that we all ask for comments, input & advice from each other & it's regular

" give & take " , which is one of the most important & beautiful things about

this list. BUT, on this subject, what a lot of people probably don't understand

and/or realize, is that those of us that have medical licenses, medically

related careers, multiple course certificates, etc., in general, have more

scientifically based knowledge, then the average person. However, I must admit

that

over the years, I have heard people speak, that I would swear have multiple

Ph.D's, but have never taken a course! And if fact, I have personally over the

years asked many question of others, no matter their background. Mostly due

to the obvious. And that is, as we all know, that likely no one knows more

about how to live with EDS then WE do, those of us who LIVE WITH EDS on a daily

basis.

And I must add that this is in no way diminished by the existence of our

dear, dedicated & critically needed and appreciated scientific medical board,

including those who are no longer currently active, who have made a tremendous

contribution, all without whom, I don't even want to think about, where we'd be

However for those of us with the aforementioned resources. I guarantee you

that we have worked very hard for our knowledge, not to mention the time, money

& effort put into getting them & for many, it's our livelihood and/or a

critical part of our lives & it is essential to protect them, particularly

within

the litigious society, in which we live. It is simply a fact, that on a legal

level we do have to be more cautious than the average person.

I've been on this list, almost since it's inception & have been asked more

questions/advice than I can begin to think about, both on & off list. And over

the years we have all been reminded over & over by the administration of the

EDNF & other sources (and also should know this from our common sense) that we

have to be very careful when responding to any request. Not only do we/and

should we, make it crystal clear that what we do say is strictly coming from us

personally & we are not speaking on behalf of any group or organization, but

we should really spell it out in every response that we make; I.E. That

anything we've said is not medical advice of any kind and should not be

considered to

be, in any way, shape or form. And, in fact we are not recommending,

referring, suggesting or even inferring that what we say is medical and/or legal

advice. However, we are often put in a position (often of our own doing)

wherein

we desperately want to help someone and therefore answer any and all questions

& are happy to do so.

The questioning person should always keep this in mind (unless otherwise

notified), that basically our response is, in fact generally our own thoughts &

ours only, which is basically known as a disclaimer. But in our desire,

sometimes out of zealousness to be of assistance, that " disclaimer " often

doesn't

exactly get written into our response.

Many of us here, on this and other lists, have been assisting people for

years and years and speaking for myself only, it's my pleasure to do so. The

fact

is, that when people know (and in this instance I shall use myself as an

example) that you are a Registered Nurse for almost 30 years, that you have

worked

as a nurse paralegal for almost 7 years, always representing the plaintiff in

medical malpractice cases & have taken multiple post graduate courses in

alternative therapies, plus, plus, plus & in general whenever physically

possible,

I will make any & all attempts to assist anyone at anytime, it is only

natural for others to ask questions of you & should pretty much expect it.

In ceda , MTLamar@a... wrote:

By the way, the recommended amount of sleep for an adult is 9 hours.

I refuse to feel any more guilt about needing 10 and occasionally

more...

I couldn't agree more with Mark on this. And I haven't a clue when, but I do

know that I have heard multiple discussions over the years @ this & truly

don't know if this is a proven scientific fact or not, but I don't know how

many

times I've heard that quite often, individuals with EDS, at times, often

require, need & do sleep more than the average person. And I personally, have

no

problem saying, that there are times my husband of almost exactly 27 years,

has said that's he's been tempted to check my pulse, as I don't know how many

times I have slept anywhere form 10 - 14- 18 hours, within a 24 hour period.

And now, fortunately with my children in their 20's (which is an interesting

scientific phenomena on it's own, as I'm sure I couldn't possibly be any older

than 30'ish or so, which is also related to my curiosity as to how I've been an

RN for almost 30 years!) and am on permanent, 100% permanent SSDI, therefore

am unable to work, So, now I do have the luxury of being able to sleep

whenever needed. And to this day, I wonder how, not more then 10 years ago,

with 2

very active teens, to whom I was both Mom, chauffeur, launderer, etc., plus was

worked full time, that I managed to exist on the pittance of sleep that I

did. But. I guess it came under the category of " you do what you have to, when

you have to " .

And in support of this statement from Mike, not that I personally feel the

need for any justification

In a message dated 4/2/2004 9:28:49 PM Eastern Standard Time, mike@...

writes:

As for the recommended amount of sleep for an adult - the proper, correct,

whatever, recommendation is whatever amount of sleep YOUR body needs at the

time. Period.

And as well, this statement, Mike, how true, how true!

These one size fits all, cookie cutter, put the square peg in the round hole,

type things are mostly just crap in my opinion.

And finally Mike, this is an absolute jewel! And no doubt, one to write down

& hold on to, as I am sure there shall be appropriate times in which to use

it & know that there have been many times in the past, that it would have been,

" right on target " . Thanks!

just do what we used to say in anatomy class: Contract the Extensor

Digitorum tendons associated with the middle and distal phalanges of the second

finger

of either hand and display the result to whoever is

giving you lip.