GOOD MORNING

[Guest guest]

Hi Vickki, Hope all went well with your catscan. Did you get both

photos of me? Now you know who you are talking to. I am home today.

Feeling frustrated that I can't do what I want to do when I want to do

it. How are you Teddi? what's going on with

you? Love to ALL Helen

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[Guest guest]

Hi Vickki, Glad you got my pictures. I am on 15mil of prednisone a day.

I did have quarter of my stomache removed so that also may have

something to do with why I am so skinny. I do love to eat and I do eat.

I have the same problem with my veins. I also have a problem stretching

out my arms my elbows won't bend out straight. hooray for teddi! What

lung disease do you have Vickki? Can you or anyone else send pictures

of themselves I'd love to see who I am talking to. You would have to

send them to another friends e-mail address so I can get them. Love

Helen

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[Guest guest]

Hi Everyone

Well, Everything went well at the clinic today. They took three

different Catscans of my lungs. First time they did my back side....

(lungs that is) lol... I don't know if any of you have had a Catscan

done but I still can't get use to the feeling of the dye in your vein's.

Makes me want to go to the bathroom....lol It's getting tougher to

find a vein to hit. The Prednisone has really made them very small.

Today they had to use the one down by my wrist. I go back on Wednesday

to see my Rheumatologist and my lung specialist wanted me to call her

when I arrive so she can break away from rounds to see the Catscan with

me. This will tell if the lung disease is progressing or being good and

leaving me alone. I tell you this is the greatest place in the world (I

think) to go to. Such nice carring people. I hope everyone had a

wonderful day and I'll let you know what I find out on Wednesday.

Hugs to all

Vicki

[Guest guest]

Oooops

Helen

Yes, I did get both photo's of you and I can't figure out why you lost

weight and I gained weight. Are you on Prednisone? If so how much a

day?

Vicki

[Guest guest]

Hi Helen

Question: Why was half of your stomach removed? Sometimes I have the

same problem with my right arm. It seems to get hung up. I only

noticed this since I've been on the lower Prednisone. Down to 6mg a day

but I'm afraid I'll have to go back up a little to take care of the

breathing problem. I still take 200mg of Imuran, do you take anything

else? I actually have the following wrong with me:

PM ..... Polymyositis

BOOP.... Short term means pneumonia always laying in my lungs...chronic.

COLLAGEN VASCULAR DISEASE .... means that the Collagen material holding

the blood vessels up against the lung wall is deteriorating. When the

Collagen is not present the veins just flop around because of no

support, thus allowing the veins to balloon out and causing small

aneurism. INTERSTITIAL LUNG DISEASE Means that it's a Lung disorder

which results in scarring and dysfunction of the alveolus (air sac) in

the lung. This results in poor oxygen diffusion from the air into the

bloodstream. Widespread inflammation in the lung leads to fibrosis

(scarring). ANTI-JO-1 ANTIBODIES.... means this is an antigen that

reproduces itself very rapidly. Research has found that anyone carrying

the Jo-1 have a harder time for medication to work and the lung disease

to get under control. This Jo-1 makes it hard for medication to do it's

job. One of many antigens you can get but this seems to be the worst

one. Some researchers seem to think that this is another disease all

it's own.

The Catscan I had done yesterday will tell the doctors if the lung

disease is progressing or not. They will compare with the last ones I

had done. Carrying the Anti-Jo-1 makes it harder for the doctors

because one minute they think it's under control only for it to start

back up the following day. They can't let there guard down because the

disease will move rapidly. If the scarring continues then I'm looking

at a lung transplant. But for right now I just use my little puffer

and put my hands in the God almighty and my doctors. I know my sense of

humor through out all of this is the key factor that I seem to get

things done and why the doctors and nurses all are willing to help me.

To work on someone, it would be much nicer to see that person smile and

joke around then a grump....LOL

As for pictures. I'm looking into purchasing a scanner. Although I

can't hook it up to my webtv but I have a friend that has a computer

that I can hook it to. Then I'll get pic's off to everyone. You must

promise not to laugh....LOL... like I do... Helen, hope this helps in

understanding what I have. I'm always so interested in all of this.

Never bothers me to talk about it nor to explain anything to anyone. I

have this and I have to learn to live with it.. Hope you and the rest

of you all have a wonderful day.

Hugs to all

Vicki

[Guest guest]

> Everyone,

> I also got the new MAA bulletin. Did everyone see our

> friend Ralph Becker in it? Thanks Ralph for all you

> and your family do. A big thanks to for

> allowing you to share her story with all of us.

Thanks, Cari. We did get a brief mention in the latest JDMS

newsletter, but we haven't gotten the latest Outlook yet. Is that the

one you mean? Or are we in the Outlook, too?

BTW, got her long, beautiful hair cut the other night. It was

for a good cause! Read about it:

http://www.ralphb.net/JDMS/june2000.html#19

and check out the pictures (I'm using a funky new mouseOver technique

to display the blow-ups - let me know if you have trouble with it):

http://www.ralphb.net/JDMS/june2000.html#haircut

Ralph

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

Hi Cari,

Good Morning to you, too :-)

I know we discussed sun exposure and sun products recently, but at the time

I was too inundated with other projects to be ablel to add anything to the

discussion. Please for give the lateness of this post.....

We went to Hawaii last year (my Mom took all of us!! :-)...anyway, I knew

the sun was going to be a problem. In addition to my DM, the Minocin that I

take also contributes to sun sensitivety. I found in an advertisement at my

doctor's office and mention of sun protective clothing, I think it is called

Solumbra. I ordered a few items (they are pretty expensive :-( but worth

it in my opinion. You can take a look at their products at:

http://www.sunprecautions.com/

When my college aged son was planning to spend last semester in the

Dominican Republic I thought that I would get him a few " sun-proof " items of

clothing. Well, the Solumbra products are expensive, but I noticed a

" specials " section on their home page. They call it an auction......but I

was the only one to 'bid' on a couple of pairs of pants, and of course I bid

the minimum price allowed, which was about half the regular price. Sure

enough, my bid was accepted. I didn't have to give my credit card over the

internet, either. I was directed to call Solumbra and they would ship my

order. It worked!

....just thought I would pass this on in case you or anyone else is

interested. I wonder if insurance would cover these products. They are

catagorized as a " medical device. "

take care, everyone,

Connie

Good Morning

> Vicki,

> I loved that joke. Ha Ha. Thanks for sharing it. It

> made me laugh outloud.

>

> ,

> So excited about your trying the antibiotic therapy.

> Keep us posted on everything!

>

> Everyone,

> I also got the new MAA bulletin. Did everyone see our

> friend Ralph Becker in it? Thanks Ralph for all you

> and your family do. A big thanks to for

> allowing you to share her story with all of us.

>

> swam and swam in my sister's pool in Atlanta

> over the weekend so we are resting a lot this week.

> He is playing a lot of playstation and computer games

> these past few days, all educational of course. I

> ordered the clinique face block. I am waiting for it

> to be delievered. Will let everyone know how it works

> on his face. Wish I could get him to wear a hat.

> These 4 year olds have such a mind of their own!

> Hugs to all,

> Cari and - JDMS

>

> __________________________________________________

>

[Guest guest]

Dear :

Trying to meeting the July 10th deadline to have the " Coping with a Myositis

Disease " book to the New York publishing company. Finished book should be

available prior to Labor Day.

Thank you for the (blush) (blush) flattery.

Jim

JRKilpatrickMYO@...

[Guest guest]

Dear Connie -

Added to newsletter mailing list - no cost.

I am trying to get the last of the stories into the format by June 27th -

then working hours and hours to get the manuscript/materials ready for the

publisher in NYC by July 10th.

Thanks,

Jim

JRKilpatrickMYO

[Guest guest]

Ralph,

Thank you for sharing the links to 's web site. I had not been there before and WOW! what a wonderful and beautiful child you have in . She is beautiful not only on the outside, but also on the inside. The story of her cutting her hair for Locks of Love had me in tears. What a giving and unselfish sweetie!

I cannot find my MAA bulletin, maybe it'll turn up...just forgot what I did with it...what's new, huh? = I'm anxious to read what Cari was talking about in her message.

I do have the Kilpatrick & Myositis Group Newsletters that Jim Kilpatrick sends out every month. Speaking of Jim, I haven't noticed him posting lately. I hope you are all right Jim. Please touch base with us as soon as you can, o-kay? If any of you would like to receive his monthly newsletter, just drop him an e-mail with your snail mail addy. His e-mail addy is JRKilpatrickMYO@...

warm hugs to all,

karen

dm

..

[Guest guest]

Hi Jim,

.........just the other day I rummaged around in the computer files and found

your post asking for feedback in the way of personal stories from this

group. Are you still able to incorporate any more of them? I think I could

come up with something for you. It would deal with my progress using the

antibiotics. Is your deadline still June 30 and ticking?

I would indeed be interested in receiving your monthly newsletter. Do you

need any $ for postage? Here is my name and addy: Connie Hache, 1669

April Loop, Richland, WA 99352.

Thank you for all that you do!

Connie......ps. how do we get ahold of a copy of your up and coming book?

Re: Good Morning

> Dear :

>

> Trying to meeting the July 10th deadline to have the " Coping with a

Myositis

> Disease " book to the New York publishing company. Finished book should be

> available prior to Labor Day.

>

> Thank you for the (blush) (blush) flattery.

> Jim

>

> JRKilpatrickMYO@...

>

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> Secure, online sales force automation with 5 users FREE for 1 year!

> http://click./1/2658/11/_/561170/_/961625115/

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>

[Guest guest]

Dear Jim,

Would you also please add me to your maily list?

Ann-Marie Borgess

3837 Secor Road

Toledo, Ohio 43623

Thanks so much! Good luck with your deadline!

Ann-Marie--MCTD/PM

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Sure, Ann-Marie, no prob - Jim

[Guest guest]

Ralph,

What a wonderful thing did. I know you are so

proud of her. She is even more beautiful, if that is

possible, with her new haircut! It's adorable. It

makes her more grownup, don't you think Dad?!

Cari

--- Ralph Becker wrote:

>

>

> > Everyone,

> > I also got the new MAA bulletin. Did everyone see

> our

> > friend Ralph Becker in it? Thanks Ralph for all

> you

> > and your family do. A big thanks to for

> > allowing you to share her story with all of us.

>

> Thanks, Cari. We did get a brief mention in the

> latest JDMS

> newsletter, but we haven't gotten the latest Outlook

> yet. Is that the

> one you mean? Or are we in the Outlook, too?

>

> BTW, got her long, beautiful hair cut the

> other night. It was

> for a good cause! Read about it:

>

> http://www.ralphb.net/JDMS/june2000.html#19

>

> and check out the pictures (I'm using a funky new

> mouseOver technique

> to display the blow-ups - let me know if you have

> trouble with it):

>

> http://www.ralphb.net/JDMS/june2000.html#haircut

>

> Ralph

>

==========================================================

> Ralph Becker

> http://www.ralphb.net/

> Will Juggle for Food. RKBA!

>

>

__________________________________________________

[Guest guest]

Yes, we're very proud of . She's a wonderful kid.

The haircut makes her look 11 or 12. Scary. I'm going to

have to fight off the boys with a stick in a few years.

Thanks for noticing

Ralph

> What a wonderful thing did. I know you are so

> proud of her. She is even more beautiful, if that is

> possible, with her new haircut! It's adorable. It

> makes her more grownup, don't you think Dad?!

>

> --- Ralph Becker wrote:

> >

> >

> > > Everyone,

> > > I also got the new MAA bulletin. Did everyone see

> > our

> > > friend Ralph Becker in it? Thanks Ralph for all

> > you

> > > and your family do. A big thanks to for

> > > allowing you to share her story with all of us.

> >

> > Thanks, Cari. We did get a brief mention in the

> > latest JDMS

> > newsletter, but we haven't gotten the latest Outlook

> > yet. Is that the

> > one you mean? Or are we in the Outlook, too?

> >

> > BTW, got her long, beautiful hair cut the

> > other night. It was

> > for a good cause! Read about it:

> >

> > http://www.ralphb.net/JDMS/june2000.html#19

> >

> > and check out the pictures (I'm using a funky new

> > mouseOver technique

> > to display the blow-ups - let me know if you have

> > trouble with it):

> >

> > http://www.ralphb.net/JDMS/june2000.html#haircut

==========================================================

Ralph Becker http://www.ralphb.net/

Will Juggle for Food. RKBA!

[Guest guest]

I am in the process of writing a book about coping with chronic illness. I

am just in the beginning stages, but am wondering if any of you know how I

can go about getting the attention of a good publisher when the time comes?

This is all very new to me, but I want to do the best job possible in

getting this information out to those who need it.

Gentle hugs,

Fern

[Guest guest]

Fern, it's for sure I can't help you there but possibly Jim can help you

out.

Vicki-PM

[Guest guest]

Fern - I don't have any advice on book writing but I

have plenty of encouragement! Good for you for doing

something so positive. Writing a book will be quite

an adventure for you. Keep us posted on how it is

coming along.

Cari

- Starflower wrote:

> I am in the process of writing a book about coping

> with chronic illness. I

> am just in the beginning stages, but am wondering if

> any of you know how I

> can go about getting the attention of a good

> publisher when the time comes?

> This is all very new to me, but I want to do the

> best job possible in

> getting this information out to those who need it.

>

> Gentle hugs,

> Fern

>

>

__________________________________________________

[Guest guest]

Just wanted to say Good Morning to everyone. This is the 1st time I

have posted since my " I'm Home " post. I am way behind on posts and

dont think I will catch up. Today I am starting to feel better then

I have all week. Just wanted to give a note to let everyone know I

am doing ok. Hope everyone's morning starts off good. *smile*

(((((((((((((((((HUGS)))))))))))))))))))))

Tina

Las Vegas

4/9/02

288/268 as of 4/22/02

[Guest guest]

LINDA- thank you. water and walking are no problem. Protein I seem

to only be able to get down 3 shakes a day. doc wants 5. Just dont

see how that is possible. But trying anyway <sigh>. But I do feel

better so I must be doing something right.

Tina

> Hey Tina so glad to hear that you are feeling better and just keep

in mind each day gets better just be sure to get protein water and

walking in

> hugs

>

[Guest guest]

Hey Tina so glad to hear that you are feeling better and just keep in mind each

day gets better just be sure to get protein water and walking in

hugs

GOOD MORNING

Just wanted to say Good Morning to everyone. This is the 1st time I

have posted since my " I'm Home " post. I am way behind on posts and

dont think I will catch up. Today I am starting to feel better then

I have all week. Just wanted to give a note to let everyone know I

am doing ok. Hope everyone's morning starts off good. *smile*

(((((((((((((((((HUGS)))))))))))))))))))))

Tina

Las Vegas

4/9/02

288/268 as of 4/22/02

To Subscribe to 's weekly FREE Newsletter send an email to

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[Guest guest]

Meat,fish,eggs-- oh that sounds soooooooooo good. I have to be on

the shakes and liquids for 4wks!!!! It's driving me crazy now. I go

back on May 8th for nutrition class and I guess then I can have

food. I cant wait. Liquids are really getting to me.<sigh>

Tina

> I wish our DR's required it but no they fuss about protein unless

it is from a natural source like meat fish or eggs but I don't

listen except to my body !

>

[Guest guest]

I wish our DR's required it but no they fuss about protein unless it is from a

natural source like meat fish or eggs but I don't listen except to my body !

Re: GOOD MORNING

LINDA- thank you. water and walking are no problem. Protein I seem

to only be able to get down 3 shakes a day. doc wants 5. Just dont

see how that is possible. But trying anyway <sigh>. But I do feel

better so I must be doing something right.

Tina

> Hey Tina so glad to hear that you are feeling better and just keep

in mind each day gets better just be sure to get protein water and

walking in

> hugs

>

To Subscribe to 's weekly FREE Newsletter send an email to

GBCookbook-subscribe@...

[Guest guest]

I am in this phase where I would be happy just to have my chocolate protein

*sigh* and could care less about food

Re: GOOD MORNING

Meat,fish,eggs-- oh that sounds soooooooooo good. I have to be on

the shakes and liquids for 4wks!!!! It's driving me crazy now. I go

back on May 8th for nutrition class and I guess then I can have

food. I cant wait. Liquids are really getting to me.<sigh>

Tina

> I wish our DR's required it but no they fuss about protein unless

it is from a natural source like meat fish or eggs but I don't

listen except to my body !

>

To Subscribe to 's weekly FREE Newsletter send an email to

GBCookbook-subscribe@...

[Guest guest]

Hi Tina I feel the same way, I am still on the liquad diet and I have my 2 week

appointment tuesday, and a week after that I am on pureed.......

karen 4/16/2002

307 / ????

midnightx1 wrote: Meat,fish,eggs-- oh that sounds

soooooooooo good. I have to be on

the shakes and liquids for 4wks!!!! It's driving me crazy now. I go

back on May 8th for nutrition class and I guess then I can have

food. I cant wait. Liquids are really getting to me.<sigh>

Tina

> I wish our DR's required it but no they fuss about protein unless

it is from a natural source like meat fish or eggs but I don't

listen except to my body !

>