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Rosie

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Karin-

Could you tell me what you are about again....I know you have adopted

children, how many? Do they all have Ds? I know I am awful but I can't

remember 5 minutes ago half the time.

Thanks

Rosie

Karin,

What an incrediable experience. I loved reading both your messages about

the camera crew and the actual show. Can't wait to tape it on the 23rd. I

also love your sense of humor - with all those wonderful children I know its

comes in handy. Can't believe they though you might trip - at the

same time you wouldn't think they would give people ideas. If it was me I

would be terrified that just because they said that even though it would

never have occured to me to do this to anyone but being nervous I might have

done it as in subconscience planted thought or at least then would have

worried I might. Anyway what an experience of a lifetime!! Oh by the way

couldn't wait to tell my husband what you named the new baby - his name is

Drew also. Thanks for sharing everything. See you on TV on the 23.

Margaret w/ Greyson and - 3 and Annice 18mos.

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  • 3 years later...

I just got to talk to her for the 1st time after the Southern New

England picnic.... Three hours later... LOL

Gee.... maybe we can plan the SNE picnic close to your gathering,

and ask them to hop over here for a play date, too! <g> Or, I take

a LOT of drugs and make it to NY. I'll ask or Becky to take

me. LOL Just that old panic disorder/agoraphobia thing. Or, Ela.

BTW... if you feel the ned to divulge any more secrets.. feel free!!!

Deb

> I just love Rosie to pieces ; ) Her warm southern drawl in

messages

> left on my phone machine make me smile. She's such a sweet heart.

And

> Tony & Rosie plan on attending next year's gathering via this

group

> in NYS....I'm looking forward to meeting her face to face ; ) All

of

> you!!!!!!

> Huggs, Bekka

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  • 2 years later...

Rosie

Have u improved on Dr. Myhill's protocol at all?

Louella

---------------------------------

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates

starting at 1¢/min.

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Hi Luella,

I'm sorry to say; no. But I suspect alot of that is due to the fact

that I couldn't really take anything long enough for positive effect

because I reacted so badly to everything. I had the ATP profile done

which shows, in Dr Myhills words; 'disastrously low levels of ATP'.

She thinks that I have allergies which are preventing me from

tolerating these supplements - hence the EPD. I do know that I am

chemically sensitive and this has become worse over the last few

years, but I'm pretty ok with most foods.. so the jury is out as to

how beneficial EPD may be for me.

From what I understand from other patients with difficult cases of

ME, some supplements are helping a bit, though I am not really aware

of anyone who can say they are substantially better because of them.

Dr Myhill is very upbeat and says that alot of her patients are doing

very well, but I haven't 'spoken' to any in that category yet.

That's not to say they don't exist, they simply may not be on lists

like this talking about it; either because they are now well, or were

never so unwell and desperate as to be searching in the way that many

who access lists inevitably are (if that makes sense?)

Hope this helps.. not sure it does really :-(

BW

Rosie

>

> Rosie

>

> Have u improved on Dr. Myhill's protocol at all?

>

> Louella

>

>

>

>

> ---------------------------------

> Talk is cheap. Use Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>

>

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  • 2 months later...

Actually, in this case the " queen of nice " would be a bad thing.

The " queen of nice " would ignore common sense and would listen to

popular beliefs or would be concerned to bring up such a

controversial issue :)

As to your point, though. I'm definately NOT putting too much faith

in her in terms of being a huge advocate or anything... but perhaps

just in a sense of bringing more attention to the issue. A

step in the right direction would be to do a full hour on autism -

which I'm sure that she had a hand in pushing for (if it actually

happens). Again, it could be all fluff... time will tell.

Sue M.

>

> I wouldn't put too much faith in Rosie. I've met a few people

who

> either worked with her or met her and they all said she is

definitely

> not the " queen of nice " in reality. Rosie is the type to get

> involved in her OWN issues. She does a lot for gay rights, her

> mother died of cancer, she's got this new job with The View... I

> doubt she'll want to take on autism in any real way. I'm not

saying

> don't try- but don't take it personally when you get no response.

I

> would target the famous people who have family members with autism-

> the list is growing.

>

>

>

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  • 2 years later...
Guest guest

I see that Notan found quite a bit on your guy at Shands. Sounds like he's got

some good experience, you should go meet with him and see how you feel when you

are done. Just try to get an idea from him how many myo's he does yearly. If

it's at least 50 - 100 and you like him, schedule it!

the VAST majority of myo's can be performed laproscopically now so you shouldn't

be in the hospital for more than 1-2 nights and on mild painkillers for about 1

week. You'll be eating soft and mushy for a few weeks but then you should be

back to a pretty normal diet.

Do you have any family or friends who can come stay with you to help with the

kids?

I'm sure this all seems very overwhelming as a single mom but really, you NEED

to be able to eat. A good myo from an experienced surgeon is not a cure but

should provide you with relief for many years.

Keep us posted.

- in NC

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