/New Member

[Guest guest]

How come my message took almost two days to get here? Am I being moderated?

* How come????

/New Member

Welcome , I'm a fairly new member too and live in the Okanagan of British

Columbia so we're neighbors!!!

----- Original Message -----

From: kittingrrl

Hello all,

Just wanted to drop a line to say hello and introduce myself. I am ,

living in Alberta Canada. Love to do the whole gamut of DIY body and bath stuff,

especially scrubs, soaps, lotions, creams and balms.

[Guest guest]

Sue #2,

You are the first person I have communicated with that understands the

disease. I am just in the beginning stages of a flare up. Last year my

flare up started in October without any break until April. Is that normal?

Prednisone is the only thing that calms it down but I hate taking it because

it is so bad for the body. I have aches and pains now. with sore throat and

rash at night. My rash itches like crazy. I find itching is worse than

pain. I do hope that you feel better in the morning.

Blessings,

[Guest guest]

Dear ,

I am with you tonight...in pain and possibly starting a " flare " ...I stayed

home from work today, which is extremely rare for me. I am in so much pain

tonight, that I just do not know what to do. I have been a member here for

over two years, and I feel beside myself and cannot even answer my own

questions. I am miserable with pain and fever. , is there any way to

find a doctor out of Vermont? I like you, come from a very small town, out

in the sticks and it took me a long time to find someone to diagnosis my

Stills and treat me for it. I just recently started taking Methotrexate and

my prednisone was just upped again to 15mg after just weaning down. We do

have a list on the Stills site for possible doctors in your state or near

your state. Unfortunately, you might have to go out of state to be treated.

I started out at my local hospital with an Oncology group, and was handed

over to Yale Hospital, then to UCONN and back to a rheumatoid department

here in Norwich, CT. Have you ever been able to print out all the

information about Stills Disease on your computer and hand it to your

regular doctor? If you are not able to find a doctor in your area, because

you come from a very remote area like me, perhaps this would be a good thing

for you to do. Print out all the main factors of this disease. Have you

received the brochures from our site also? This would be extremely helpful

and you can bring it to your regular doctor and make him or her read it!

Sometimes, you really have to stick up for yourself to get them to listen.

I had to be very forceful to get what I wanted. I didn't let a doctor over

look me or push me to the side, because he or she didn't know what they were

talking about. I was very aggressive with getting the point across and it

has worked. Please ask many questions and I know that the wonderful people

here will do their best to help you out. We are here for you and you can

ask anything that you want, and usually someone will always respond with

something. If indeed you feel a flare coming on, please rest. I have

learned to listen to my body and its signals. I didn't do this before, and

would hospitalize myself. I found out the hard way to listen to people

around here. Make sure you take your prednisone and if this still persists,

make sure that you call your doc in the morning and let him or her know what

is going on, and print some information out about this disease.

Unfortunately, there are a lot of doctors that do not know much about this

disease. It is still very unknown to a lot of people. When I tell people

what I have, they look at me like I have three heads. Please rest friend.

I am sorry that I cannot tell you more right now...what symptoms do you

have? I have to lie down...I am in a lot of pain. My throat is very

swollen and I have a high fever and I am really having a hard time typing

tonight. Many hugs friend, and my thoughts are with you.

Love, sue #2

-- new member

I am new to this group. I am getting around 10 emails a day that appear to

be answers to questions posed. Where are the questions? How does this site

work? I am beginning a flare up. I have no doctor in my area that

understands the disease. The only thing they give me is prednisone. Any

suggestions?