Re: {{{ Jane another wild idea }}}Wristbands ?

July 14, 2007

Hello,

I have always " hated " bumpber stickers for any reason. They make a car

look like trailer trash *just my feelings* but I would consider

one...just one. Thinking though, how about the frame that goes around

the plate?? Just an idea.

>

> Hi all anyone any ideas for my ME car stickers?????

> Antoinette

>

July 19, 2007

Now THAT is what I'm not sure of! It all gets a little tricky doesn't it?

lol......I also thought a black mask, you know with a couple of eye holes cut

out and a caption " Thief of Lives " ................??????? Definitely new

idea.........never seen before, but I now fall into teh issue of what disease

would this be for? ME? CFS? FM?

all of the above? see, we are back to the name issue again! UGH!

In my mind, I would like to say I have ME, but without an actual DX of ME from a

doc, I feel I am joining a club I don't belong in. And I don't want to offend

anyone who has been officially DX'd with ME, but when reading the criteria on

ME, it sure seems to fit - BUT - so many people with ME seem disgruntled that

we, who have been dx'd with CFS (by USA docs) take on the acceptance that our dx

is REALLY ME...............I just don't know anymore................

Sorry, rough brain day for me today,

STL Jane

July 20, 2007

And I don't want to offend anyone who has been officially DX'd with

ME, but when reading the criteria on ME, it sure seems to fit - BUT -

so many people with ME seem disgruntled that we, who have been dx'd

with CFS (by USA docs) take on the acceptance that our dx is REALLY

ME...............I just don't know anymore................

Hi Jane

Well I was diagnosed with ME. Had I been in the US it may well have

been called CFS. I think most people will know themselves - either you

suffer from chronic fatigue without the other symptoms (which could be

caused by all sorts of things physical and/or mental) or you have the

fatigue with the other symptoms of ME as well.

If you fit the criteria for ME why not call it ME. After all we know

the docs know very little about it, so why should we let them dictate

what we (who know far more about it than most of them) call it. Why

should they have that power.

I get disgruntled when people (docs included) tell me it's JUST

fatigue when I suffer from so much more. But when someone, regardless

of what they've been diagnosed with says " Wait a minute - I meet all

the criteria for ME therefore I'm saying I have ME " , then good on

them. Why shouldn't you. You know what you suffer more than any doc

does.

If we're going to fight amongst ourselves it just gets petty. Sorry if

this isn't making sense the brains a bit frazzled today.

Cheers

Kirsteen

--

And, while it was regarded as pretty good evidence of criminality to

be living in a slum, for some reason owning a whole street of them

merely got you invited to the very best social occasions.

-- (Terry Pratchett, Feet of Clay)

July 26, 2007

-Jane Dear....

You know your body better than any Doctor. If you fit the symptoms

you have it in my book. I mean if you have a sore throat with white

blisters on the sides with tonsils swollen and running a temp. You

probley have tonsilitis. It's no different hun. If anyone felt

offended by your " saying " you fit the symptoms or that you " have "

ME., they have the problem, not you. Try not to let yourself feel

that way okay? I know what your saying but it is only compromising

what you know to be the truth in waiting for some Doctor that knows

nothing about the illness to diagnose you? Bah!

I am going to find that reading on the tests that prove ...it's in

our chat history here with alliance and was recently (within 2

weeks) Maybe once I take a nap I'll get right to finding it for you.

God Bless

My ME friend

-- In CFAlliance , Jane wrote:

>

> Hi Kirsteen,

> I do feel I fit the criteria, other than having any testing showing

the actual brain inflammation, everything else about ME fits!

Definitely! All the cognitive issues, the immune issues,

the ...............well, you know EVERYTHING fits. And like you

said, I feel like it is what I have, even if a doc hasn't confirmed

my self-diagnosis. I guess I'm a litte skittish about stating, yes I

have ME, especially here, because I don't want anyone who has been

officially diagnosed with it, to feel I've " adopted " their disease,

you know what I mean?

July 27, 2007

> Hi Kirsteen,

I guess I'm a litte skittish about stating, yes I have ME,

especially here, because I don't want anyone who has been officially

diagnosed with it, to feel I've " adopted " their disease, you know what

I mean?

I know what you mean but, look at it this way, you're not 'adopting'

anything - you're simply telling it like it is. YOU know what you're

suffering from better than any doctor.

Let's face it, for all those of us who have been 'officially'

diagnosed with ME there are probably twice as more who haven't because

they've had the misfortune to be treated by doctors who don't believe

in it!

I met a lovely lady this week at a local ME meetup who has been

struggling with this DD for years. She was bedbound for a year, unable

to even pick up a pen, with it - yet her doctor told her it was just

depression and empty nest syndrome -honestly!

So go for it. tell it like it is and don't let the dammed disbelieving

doctors win.

Be strong

Kirsteen

--

And, while it was regarded as pretty good evidence of criminality to

be living in a slum, for some reason owning a whole street of them

merely got you invited to the very best social occasions.

-- (Terry Pratchett, Feet of Clay)

July 27, 2007

> Hi Kirsteen,

I guess I'm a litte skittish about stating, yes I have ME,

especially here, because I don't want anyone who has been officially

diagnosed with it, to feel I've " adopted " their disease, you know what

I mean?

I know what you mean but, look at it this way, you're not 'adopting'

anything - you're simply telling it like it is. YOU know what you're

suffering from better than any doctor.

Let's face it, for all those of us who have been 'officially'

diagnosed with ME there are probably twice as more who haven't because

they've had the misfortune to be treated by doctors who don't believe

in it!

I met a lovely lady this week at a local ME meetup who has been

struggling with this DD for years. She was bedbound for a year, unable

to even pick up a pen, with it - yet her doctor told her it was just

depression and empty nest syndrome -honestly!

So go for it. tell it like it is and don't let the dammed disbelieving

doctors win.

Be strong

Kirsteen

--

And, while it was regarded as pretty good evidence of criminality to

be living in a slum, for some reason owning a whole street of them

merely got you invited to the very best social occasions.

-- (Terry Pratchett, Feet of Clay)

July 27, 2007

Thank you Kirsteen,

You have made me feel more comfortable about saying I have ME. Good Lord, what

are these Doctors THINKING? It still just amazes me. I remember reading

somewhere along the lines, a doctor told a woman to " get a manicure and she'd

feel better? " WHAT? Are they SERIOUS? Absolutely amazing to me...........

Take good care and thanks for all your kind encouragement!

STL Jane

July 27, 2007

Thanks Hon,

I appreciate the support. To be honest, I have been telling people in the last

few months that ME is what I have. Not only does it fit better, but, sadly, it

'sounds' better too. Even though people don't know what ME is, they look at you

much more seriously......they don't just slough you off, the infamous " oh yeah,

I get tired too sometimes " UGH.........I HATED that! It's infuriating as you

all well know, and yet I just don't have the energy to battle it out EVERYTIME!

Thanks again - It is so nice to feel comfortable about it

TC and hope you are doing much better now,

Love and Prayers,

STL jane

wrote: -Jane

Dear....

You know your body better than any Doctor. If you fit the symptoms

you have it in my book. I mean if you have a sore throat with white

blisters on the sides with tonsils swollen and running a temp. You

probley have tonsilitis. It's no different hun. If anyone felt

offended by your " saying " you fit the symptoms or that you " have "

ME., they have the problem, not you.

July 27, 2007

Thanks Hon,

I appreciate the support. To be honest, I have been telling people in the last

few months that ME is what I have. Not only does it fit better, but, sadly, it

'sounds' better too. Even though people don't know what ME is, they look at you

much more seriously......they don't just slough you off, the infamous " oh yeah,

I get tired too sometimes " UGH.........I HATED that! It's infuriating as you

all well know, and yet I just don't have the energy to battle it out EVERYTIME!

Thanks again - It is so nice to feel comfortable about it

TC and hope you are doing much better now,

Love and Prayers,

STL jane

wrote: -Jane

Dear....

You know your body better than any Doctor. If you fit the symptoms

you have it in my book. I mean if you have a sore throat with white

blisters on the sides with tonsils swollen and running a temp. You

probley have tonsilitis. It's no different hun. If anyone felt

offended by your " saying " you fit the symptoms or that you " have "

ME., they have the problem, not you.

July 27, 2007

Hi Jane, Kirsteen, , well from what I have heard from you lot it

sounds like ME to me.so frustrating isn't it not to have a proper Dx even

when you know better. Well I have an " official " ME Dx and I welcome you in

my club! Aylwin xox

July 27, 2007

Hi Jane, Kirsteen, , well from what I have heard from you lot it

sounds like ME to me.so frustrating isn't it not to have a proper Dx even

when you know better. Well I have an " official " ME Dx and I welcome you in

my club! Aylwin xox

July 27, 2007

Well Said .ME really does have a unique profile and not hard to

Dx.just like what you said about tonsillitis. Aylwin xox

_____