Re: New to group

[Guest guest]

Welcome Alli

just got to ask is it true all Washingtonians rust and do not tan LOL this

coming from a conservative living in Calif. and a redneck to boot LOL

the redneck

Marty

Stills ; An illness I know to well!

To learn about Stills http://www.stillsdisease.org/stills_info

To donate http://www.stillsdisease.org/donations

________________________________________________________________________________\

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[Guest guest]

Alli,

I just read your post and it brought tears to my eyes to know that you too

fought long and hard for a DX,

just like me and many others. And many of your other problems are similar to

mine except for the shingles.

(something I have not had yet).

So far you have made it and you are getting better. Half of the battle is find

others that are like you and understand

what it is us stilligan's deal with on a daily basis. Some worse than others and

some getting better faster. Here you will find helping

hand to get through days ahead and just when you need it a laugh or two. And

there will always be a cyber hug waiting

for when you need it.

Yes, when you have the chance to come to conference, you will find it to be one

of the most powerful 2-4 days of the year. With going, you get to finally put a

face to the names and get to compare notes and learn something new about our

disease or ways to better cope with it.

This will be my 3rd year attending and let me tell you, I was scared to even go

the first time. Now, I live each day and month for the fall to get here so that

I can come be with my friends for a few days.

Hang in there and know you are not alone and that we are all here to help in

anyway we can.

Tracilyn

[Guest guest]

Hi Alli and welcome. Sounds as though you've had a very interesting

life so far. As I was reading I was really surprised to see you have

Cirneco Del Etnas. Not a breed seen too often, not even during the

Westminster Dog Show. How did you get into that breed?

I come from a dog background. I grew up with German Shepherds. It

was a family business (among other things that my parents did).

Obedience training was just a small aspect, I loved the dog shows.

Our first dog, Friday, took four legs (CD, CDX, UD, UDX) as well as

track and field. We also did Search and Rescue with the dogs. It

was a great way to grow up.

These days my husband, son and I have two mutts, Ricky and Lucy.

They are black lab/chesapeak bay retriever mixes. The great joys of

our lives.

Now back to the other stuff. I'm glad you've become part of the

family and yes, open arms are definately something we have here. I

feel like I'm home when I'm chatting with everyone on Thursday

evening, messaging with other friends, and personally emailing with

those I've become closer with. Nothing is off limits but everything

should be taken with consideration fo talking with your doctor.

There are no " experts " here, just extremely experienced, loving

people.

Welcome my dear, you're among friends. Take care and be well.

Ellen

Palm City,FL

[Guest guest]

Hi Alli,

Welcome. I am . I am a nursing student in western NC. I am married and

have a 2 year old son. I was diagnosed with Adult Onset Stills in 1996. I am

currently on prednisone and tramadol and doing okay. I have a sister-in-law and

her family who live in Lacey, WA. You mentioned the dog show in CA. I have a

good friend who shows Bostons. I know she has been to CA several times for

shows. Small world!

Well, welcome and so sorry that you have the disease to be here.

</HTML>

[Guest guest]

Alli,

Welcome. Strange, but I never mentioned the Red Rashed and swollen

ankles and legs on my postings. That was one of my recurring initial

baddies. First was swollen lymph nodes and a mega sized salivary

gland. Then the legs and ankles, swollen, red and rashed. Those are

actually what got me hooked up with my RD. The Infectious disease doc,

said isn't an infection and hooked me up with Dr. Fitch.

The rest is history, as they say, with constantly changing symptoms.

Hope you can make the chats on Thursday nights (9PM ET)

Tom from PA

>

>

>

> HI All,

>

> I'm new to the group and wanted to take a few minutes to introduce

myself

> to everyone. I've been watching your emails for a few days now and

it feels

> wonderful to have joined a group of people that have the exact

disease that

> I have.

[Guest guest]

Now Marty, no picking on the Washingtonians. They just do it a

little differently and get " rain tans " . Those are actually much

safer than sun tans. However, one still needs to be careful and wear

at least a minimum of an RPF 45 to be protective. (BTW, RPF obviously

stands for " Rain Protection Factor " )

Truth be told, I saw some analysis by the Weather Channel that shows

that my home town of Syracuse, NY actually is the city with more days

of " precipitation " in the US of A. Many more than Seattle. Of

course, many of those days are composed of White precipitation.

Tom from PA

>

> Welcome Alli

> just got to ask is it true all Washingtonians rust and do not tan

LOL this coming from a conservative living in Calif. and a redneck to

boot LOL

>

>

>

[Guest guest]

Hi ,

Small world indeed.. If you are ever in Lacey, you'll have to let me know -

it's really very close. We don't show dogs anymore.. It's too hard on me,

but we had fun while we did it.

I'm on pred and Kineret now, among others, and although I'm sorry I have to

be here, and everyone else too.. I'm glad it exists!

Take care!

-- Re: New to group

Hi Alli,

Welcome. I am . I am a nursing student in western NC. I am married and

have a 2 year old son. I was diagnosed with Adult Onset Stills in 1996. I am

currently on prednisone and tramadol and doing okay. I have a sister-in-law

and

her family who live in Lacey, WA. You mentioned the dog show in CA. I have a

good friend who shows Bostons. I know she has been to CA several times for

shows. Small world!

Well, welcome and so sorry that you have the disease to be here.

</HTML>

[Guest guest]

I thought it was a RPF of 100 - to keep from hurting so much....

-- Re: New to group

Now Marty, no picking on the Washingtonians. They just do it a

little differently and get " rain tans " . Those are actually much

safer than sun tans. However, one still needs to be careful and wear

at least a minimum of an RPF 45 to be protective. (BTW, RPF obviously

stands for " Rain Protection Factor " )

Truth be told, I saw some analysis by the Weather Channel that shows

that my home town of Syracuse, NY actually is the city with more days

of " precipitation " in the US of A. Many more than Seattle. Of

course, many of those days are composed of White precipitation.

Tom from PA

>

> Welcome Alli

> just got to ask is it true all Washingtonians rust and do not tan

LOL this coming from a conservative living in Calif. and a redneck to

boot LOL

>

>

>

[Guest guest]

Well been moving things to day trying to get a room ready for my son and some

things ready for us to leave tomorrow when the wife gets home from school around

5:30. Now I think I am pushing to hard as I now have elephant feet and it hurts

to walk but I get to give them a rest for a bit tomorrow. It never fells when ya

don't feel good that when ya got to call for every thing ya got down deep just

to get what needs to be done, done I hate stills when it is day and times like

this would give any thing to have the old get every thing done and still have

time to wait for others Marty again even if just for a day or two. Okay no time

for pity parties got to much work to do see ya all later

O by the way Alli

Just had to ask because every time I have been to Washington I never saw the

sun LOL hmmm could that be why when I move I am going to Missouri.

the redneck

Marty

Stills ; An illness I know to well!

To learn about Stills http://www.stillsdisease.org/stills_info

To donate http://www.stillsdisease.org/donations

________________________________________________________________________________\

____

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[Guest guest]

Hi Ally. I am sorry you have been so sick. It is not fair. I hope you get a

complete remission. You are going to love all the nice people here.

I have 2 kids and many pets. I love love love animals!! Your dogs sound

beautiful! It is wonderful to have such a great hobby.

Well let us all know how it is going for you. We all want to know.

Live in stown NJ Near Philadelphia. I grew up in NYC. If ever you want

to go there I am the girl to ask.

Feel well today my friend

Liz ......NJ

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[Guest guest]

Alli,

Welcome, though I hate you have to be here. I LOVE Bainbridge! I

lived in Seattle for about 9 months one year and just loved riding

the ferry over to Bainbridge. it's so beautiful and peaceful there.

I realy wanted to move back to that area, but ended up back in

Houston where my family is. Being sick really makes you want to

gravitate towards family as you know.

I'm and I live in Houston, Texas now (been all over from east

to west, north to south, and even South America). I've been sick

for 8 years, diagnosed for 3 years. I love this group and wouldn't

have survived without it. Right now I'm on Kineret, Arava,

Plaquenil, Folic Acid, and Potassium for the Stills (have plenty of

others meds for other things too :-( unfortunately).

Welcome and jump right in!

Houston, Texas