NEW MEMBER

[Guest guest]

Lynn,

I live in the far westend of Richmond. I have not been able to find a good

specialist for my DM. Do you mind sharing your doctor's information with me

since you are not so far from me?

Thanks,

Fern

[Guest guest]

Teddi... Of COURSE it can't be us! :-) Annette

RE: New Member

Annette

re: fallout area........disease....prednisone......

whatever works....can't be us can it?..lol

Teddi

mailto:teddifromok@...

[Guest guest]

Be more than happy to!!! I'm not sure any of my docs

are necessarily specialists in it either, but I have

lots of info I printed from various web sites (Univ.

of land has some good info) to give to them! The

dermatologist is the one most convinced I have DM.

Lynn

--- FERN LEHMANN

wrote:

> Lynn,

>

> I live in the far westend of Richmond. I have not

> been able to find a good

> specialist for my DM. Do you mind sharing your

> doctor's information with me

> since you are not so far from me?

>

> Thanks,

> Fern

>

>

>

>

>

[Guest guest]

Hi Lynn.

Welcome to the group.

I was on plaquenil (a kinder, gentler synthetic form of quinine)

along with prednisone for the first year of treatment. As the dose of

prednisone was reduced, though, some of the rash problems started

coming back (in a mild form) and so I was switched to methotrexate.

I'm currently on 10 mg/week of the meth, and 6 mg/day of the

prednisone. I should be lowering the prednisone dosage later this

month, if all goes well.

Mike B

....> What kinds of medicine are the DM'ers of the group on?

> I've heard a quinine for malaria (for the rash) and a

> med used to prevent organ rejection that's also given

> for rheumatoid arthritis, and lots of other

> interesting stuff. Wow, this is going to be some

> trip!! The beginning sure hasn't been fun!!

>

> Lynn

[Guest guest]

Lynn,

Why don't you send the doctor's information to me privately. My email is

fernhlehmann@...

Thanks,

Fern

[Guest guest]

Hi Zanna

I'm soooo glad you joined.... I have to say that we have just the best

group of people here to help you. Ask any question you like and someone

will help you. We call Fern our resident nurse that helps us with the

medical info and Ann-Marie our resident Nun that keeps us in line...

feel free to jump in here any time.

By the way, if you can remember anything that was said at the

conference..please post it... I'm going to have to get the tape it looks

like.

Take care,

Vicki

[Guest guest]

She enjoyed you also. I will pass on the message. I am glad you had no traffic. Neither did we. We stopped in Escondido for lunch at one of Kylie's favorites (The Olive Garden). I had promised her a nice meal while we were down there and I was so tired that I didn't go out at all. We got home about 1pm. Good to see my son, husband, and my own bed.

Take care,

Zanna

It is great that your dad came with you and is so supportive of you. You are blessed.

[Guest guest]

thank you!

Sorry to hear about Madeline. It is such a difficult disease to live with let alone being a child and having to deal with something that some adults have a hard time dealing with! My heart goes out to her and your family.

Zanna

[Guest guest]

THank you!

Vicki was truly wonderful. Also, I don't live too far from her so hopefully we will see each other every once in a while. I am looking forward to be part of this group.

Zanna

[Guest guest]

Hi Zanna,

My name is Cari. My son is 5 and was dx with Juvenile Dermatomyositis

in Jan of '99. He is doing very well at this time. Warm welcome to the

group. Was supposed to have been at the conference but had to cancel a few

weeks before hand. Glad you have joined us.

Cari

>

>Reply-To: OurMyositis

>To: <OurMyositis >

>Subject: Re: New Member

>Date: Mon, 8 Oct 2001 17:53:48 +1000

>

>Hi Zanna

>Welcome to the group, my name is Jodie and I am the mother of Madeleine

>(almost 3) who has Juvenile

>Dermatomyositis.Hope to chat to you soon .

>Again Welcome

>Jodie

> New Member

>

>

> Hi everyone!

> My name is Zanna Hall. I live in California and just returned from

> the conference where I met Vicki who told me about this group. I am

> very excited that she told me about it. I also met Teddi, Candy and

> want to say Hi to Bill Greene. I didn't have a chance to talk to you

> at the conference but would have loved too. I didn't realize that

> you are 'dad4dogs'! I always read your postings on the MAA board adn

> didn't realize that you were him until I got home today and logged on

> again. I was in the pm group that you were in on Friday night. I

> was the one with the 11 year old daughter there. She is a great

> source of support to me, as I am the patient! She tries to be my

> caregiver, bless her heart!

> I hope you all made it home OK. It was a great experience. I

> can't wait to do it again.

>

> Vicki and Teddi, I hope you had fun at the zoo. Teddi, I want to

> say thank you again for the bracelet that you made (this woman is so

> talented). I will always cherish it and someday, I may share it with

> my daughter! he he!

>

> Candy, I hope you had a nice trip home and hope you got to sleep in

> your own bed rather than a hotel again

>

> Talk to you all later!

>

> Take care and God Bless!

>

> Zanna M. Hall/PM

> Corona, CA

>

>

>

>

[Guest guest]

Hi Cari,

Sorry to hear of your son, . You are in my prayers as well as he is. I am very glad that I got to go to the conference. I decided just 2 weeks before. I am so glad though, because I walked away with new friends, new hope and just a good feeling. It is amazing what it does for your mind just to be around other people that know what you are dealing with.

Take care and give your son a big hug!

Zanna

[Guest guest]

Thanks Zanna,

We had plans to go but cancelled after the Sept. 11th events. We live in

GA. By the time the conference came around, air travel was safer then it's

ever been. But, we have two daughters ages 8 and 9 who would not have been

very calm about us flying. Also, my parents were coming up from Florida to

stay with our children and it ended up my Aunt Sharon from Seattle was

visiting them at the same time and I hadn't seen her in 6 years. She has PM

and I love her dearly and wanted to visit with her. They just left

yesterday after a 4 day visit. Just seemed like all signs were pointing

towards us staying home.

Glad you went and met Vicki! Looking forward to getting to know you better.

Hugs,

Cari

>From: wischic68@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: New Member

>Date: Wed, 10 Oct 2001 00:16:02 EDT

>

>Hi Cari,

>Sorry to hear of your son, . You are in my prayers as well as he is.

>I

>am very glad that I got to go to the conference. I decided just 2 weeks

>before. I am so glad though, because I walked away with new friends, new

>hope and just a good feeling. It is amazing what it does for your mind

>just

>to be around other people that know what you are dealing with.

>Take care and give your son a big hug!

>Zanna

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[Guest guest]

I know what you mean about the flying. I bought airline tickets on Sept 10th to go to Illinois in November. I am very scared about it still. I keep telling my husband I am not going but I know I will. I will just pray the whole way. I hate it though because we all, me, my husband, daughter (11) and son (3) are all going to be on board. My nephew was killed this summer in an auto accident. I don't know how my parents would deal with another catastrophe. I keep praying and praying and praying.

Take care,

Zanna

[Guest guest]

Zanna,

Everyone is saying that flying safer now then it has ever been. My aunt

just flew across the country and will fly back next Tues. and she said it

was a great flight. I have heard people being interviewed saying that

flying now is more pleasant then ever as passengers are talking and getting

to know each other. It will probably be the most pleasant flight you've

ever had!

So sorry to hear about your nephew.

Hugs,

Cari

>From: wischic68@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: New Member

>Date: Thu, 11 Oct 2001 00:06:20 EDT

>

>I know what you mean about the flying. I bought airline tickets on Sept

>10th

>to go to Illinois in November. I am very scared about it still. I keep

>telling my husband I am not going but I know I will. I will just pray the

>whole way. I hate it though because we all, me, my husband, daughter (11)

>and son (3) are all going to be on board. My nephew was killed this summer

>in an auto accident. I don't know how my parents would deal with another

>catastrophe. I keep praying and praying and praying.

>Take care,

>Zanna

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[Guest guest]

Vicki,

What were symptoms when you first noticed PM? And, if you don't mind, how old were you?

Thanks,

Michele

[Guest guest]

Thank you! But I was a nervous flyer before this so now I am worse. I know that everyone is saying that so I will go and just pray a lot! Thank you for the kind words for my nephew. They are starting court proceedings for his friend (who was driving the car). He is being charged on many counts such as wreckless driving, underage drinking, and vehicular manslaughter. I believe he needs prayer too. It is a very sad situation since they had both been drinking. Anyway, I hope everything works out and maybe this will give my brothers family some of the closure that they need. The pain will be there for years and years though.

Zanna

[Guest guest]

Hi Michele...

The first thing I noticed was a slight burn in my thighs and easily

fatiqued. I was still trying to work out every night but that didn't

seem to help. I just kept going down hill. I was 45 at the time. Soon

the breathless started. It went from my thighs, to my arms and

shoulders, then to my hands. I would have to say that even though my

muscles were painful, I had a great deal of trouble breathing.

And how have you been? Any problems?

Take care,

Vicki

[Guest guest]

Oh my goodness. I didn't realize it was a drunk driving accident. How old

was your nephew? I wish someone had the answer of how to explain to our

young people, how one irresponsible decision can have such catastrophic

effects on so many people. So very sad. So sorry your family has had to go

through such a hard time. Hugs to you Zanna.

Cari

>From: wischic68@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: New Member

>Date: Sat, 13 Oct 2001 01:14:01 EDT

>

>Thank you! But I was a nervous flyer before this so now I am worse. I

>know

>that everyone is saying that so I will go and just pray a lot! Thank you

>for

>the kind words for my nephew. They are starting court proceedings for his

>friend (who was driving the car). He is being charged on many counts such

>as

>wreckless driving, underage drinking, and vehicular manslaughter. I

>believe

>he needs prayer too. It is a very sad situation since they had both been

>drinking. Anyway, I hope everything works out and maybe this will give my

>brothers family some of the closure that they need. The pain will be there

>for years and years though.

>Zanna

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[Guest guest]

Hi Zanna.... My thoughts and prayers go out to your family for there

loss. My gosh, I agree with Cari, if only these young kids would wake

up and do something constructive instead of drinking. I have a friend

out here that in order for her kids to get there drivers license... she

made them go to the morgue to see someone dead from a drunk driver

first. They also had to watch a movie on accidents.... if that didn't

set them straight I don't know what would. I thought going to the

morgue was a little much... but you know, it made an impact on both of

them. Neither one drinks..... and she said both her kids head up a

class to inform other teens the cost of drinking and driving... if only

it were that easy for other teens.

Take care,

Vicki

[Guest guest]

Zachary was 17. He had just graduated high school the month before. He had been drafted to start training with the Boston Bruins junior hockey team. He had a great future ahead of him. Please talk to your kids about drinking and driving. It affects everyone!

Zanna

[Guest guest]

Kudos to her kids for talking to other kids. I think it is more effective coming from peers rather than an adult. They think it is just preaching then, you know? The morgue may have been a bit too much but if it worked then it was probably just enough. Kids, even adults don't always realize the consequences of things unless they see the final outcome in such a way as that. We had two girls in high school that were drinking and driving and killed and the local junk yard left the gates open so all of us could go look at their car. It was a horrific sight. But it still didn't stop everyone. One of my other friends died 5 years later the same way.

Enough sad talk!!!!!

Please talk to your loved ones. If you can stop one person you may have saved several lives.

Zanna

[Guest guest]

That does sound a bit drastic, but if it works, then it is probably worth

shocking reality into these kids.

Hugs,

Cari

>From: anzavic@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: New Member

>Date: Sat, 13 Oct 2001 09:22:29 -0700 (PDT)

>

>

>

>Hi Zanna.... My thoughts and prayers go out to your family for there

>loss. My gosh, I agree with Cari, if only these young kids would wake

>up and do something constructive instead of drinking. I have a friend

>out here that in order for her kids to get there drivers license... she

>made them go to the morgue to see someone dead from a drunk driver

>first. They also had to watch a movie on accidents.... if that didn't

>set them straight I don't know what would. I thought going to the

>morgue was a little much... but you know, it made an impact on both of

>them. Neither one drinks..... and she said both her kids head up a

>class to inform other teens the cost of drinking and driving... if only

>it were that easy for other teens.

>

>Take care,

>Vicki

>

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[Guest guest]

Hi Zanna... Apparently there are programs that the morgue runs for teens

to see the outcome of bodies from accidents. They have found, like you

said, it shocks them into not drinking and driving. No parents are

allowed with the kids when they go in. It's just them and the Dr. The

kids say the smell is enough to turn you right around. Her son came

back crying because he knew a parent had lost there kid. He said he

could still come back home but the kid laying on the table would never

see his parents again. Your right, when it comes from the kids it's a

whole different ball game.

Hope you're having a good day.

Take care,

Vicki

[Guest guest]

Zanna... My heart goes out to you and your family. Seventeen is still a baby. It's terrible when a life is over before it really begins. Annette

-----Original Message-----From: wischic68@... Sent: Saturday, October 13, 2001 4:27 PMTo: OurMyositis Subject: Re: New MemberZachary was 17. He had just graduated high school the month before. He had been drafted to start training with the Boston Bruins junior hockey team. He had a great future ahead of him. Please talk to your kids about drinking and driving. It affects everyone! Zanna

[Guest guest]

Zanna,

What a horrible loss. I am so sorry for you and your family. My heart and

sympathies are with you.

Hugs,

Cari

>From: wischic68@...

>Reply-To: OurMyositis

>To: OurMyositis

>Subject: Re: New Member

>Date: Sat, 13 Oct 2001 16:27:20 EDT

>

>Zachary was 17. He had just graduated high school the month before. He

>had

>been drafted to start training with the Boston Bruins junior hockey team.

>He

>had a great future ahead of him. Please talk to your kids about drinking

>and

>driving. It affects everyone!

>Zanna

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