Re: Coping with a Myositis Disease book

[Guest guest]

I appreciate your response. I've not made any " demands " of the contents of a

story except (1) which Myo disease (2) date diagnosed (3) sex (4) Present age.

I've received stories from Canada, England, all over the US - and all of them

usually include their prior lifestyle to diagnose, problems with medical

professionals when they diagnose PM, then years later, it is IBM - or

diagnosed as Lupus when it is DM.. etc. Scary stories, I've read.

Then just wrap the story through the medications, the results. What is

necessary to use to help you get through your life with Myo; then present day

outlook or prognosis. Support from spouse, family, relatives?

I had hoped that the Myositis Assoc of America would accept the book as a

fund raiser, but they have a dumb CEO who didn't know what an " escrow "

account was if I sent MAA $22,000 to pay for the publication, and MAA getting

the funds. I withdrew my offer.

Well, I don't deal with incompetent people in business matters, deciding to

proceed with the publication without MAA's involvement and then being able to

sell it about half of what it would have been sold for if used in a fund

raiser.

I lead the largest Myositis Support Group in the MAA organization; having

three Neurologists from the Univ of Tex Southwestern Medical Center in Dallas

as part of our support group. Having IBM has not diminished my mindset for

helping the patients with MYO.

Thanks:

JRKilpatrickMYO@... (IBM)

[Guest guest]

Ha! Ha! - just send as many pages with " just the facts, Ma'am, just the

facts. "

(One lady sent 12 single spaced pages - and no one needed to ever know what

she told about DM in that desertion. Ha! - I limited it to about three

pages cutting out all her " graphic " materials.

Thanks,

Jim

[Guest guest]

JR...I would love to submit my story. Can you tell me as to how you

would like this. Do you want the before we were diagnosed or the after

care. Ok, I admit I'm lost...but I think it a great thing.

[Guest guest]

JR.... is there also a set number of words that we're limited to? I'm

sure you don't want anything that would be a book on it's own!

[Guest guest]

JR...sorry about that last message, I did it again and forgot to take

off my html coding for you with AOL.

Just wondered if there is a certain amount of words that we must try to

keep at. Say like under a 1000 or whatever.

[Guest guest]

Thank you for the info. I certainly can't understand the thinking

of the MAA. Of course we're only talking about one CEO that rules the

roost. Ok, I'll work on mine and I urge others in this group to do the

same. I wish there would have been something like that when I was first

diagnosed. It would have helped.

[Guest guest]

Oh I bet you have gotten some pretty good reading material over this

...... I can assure you that mine won't be that long, no where near it.

LOL

And only the facts you'll get. Hope your having a great weekend so

far....

By the way, do you want to be called , JR, or Jim... or ?????

[Guest guest]

Hey Jim!!!!

It's good to see a familiar face here! I just found this group and I am sooooo thrilled! I promise, I would have told you all about it! = I haven't been back to the MAA message board . I like e-mail lists like this so much better.

I need to contact Leonardo Bobadilla and let him know I am off of the Prednisone, so there goes my ability to join in his study.

I hope the below complaint wasn't about me. = I know I wrote a lot to you for the book, but after I wrote my intro to this list, I feel like I left out some important things I should add to my story. Oh well, you already have mine typed up in book format...wouldn't want to make you re-type it.

There is a site online where you can sign up for studies. Recently they sent me an e-mail wanting IBM female patients. That url is http://www.centerwatch.com/studies/listing.htm#Section7

It is so good to see you here.

*karen*

Re: "Coping with a Myositis Disease" book

Ha! Ha! - just send as many pages with "just the facts, Ma'am, just the facts."(One lady sent 12 single spaced pages - and no one needed to ever know what she told about DM in that desertion. Ha! - I limited it to about three pages cutting out all her "graphic" materials.Thanks,Jim

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