Re: Re: Hello there Newbie!

[Guest guest]

Hi Ellen,

Well I generally do not let any of my physicians know what I do, if they ask I

tell them. During hospitalizations I don't tell my caretakers what I do either,

because they start treating you differently when they find out. I don't think

it's fair to treat one patient different than any others based on their

education, although it happens. I ask the questions I know, but there is a lot

about Still's I don't know, I have access to more things on the internet through

many web sites that the normal person does, because I have to keep up my

license. So, I try to do my continuing education on articles about Still's if

that subject is available. Today is a good day, so I have gotten a lot of things

done this morning, I leave my computer up much of the day and check it from time

to time. I do some consultation work for my previous employer, as far as

research on various topics, because I have the time that they dont.

Later

________________________________

To: Stillsdisease

Sent: Monday, December 1, 2008 11:27:49 AM

Subject: Re: Hello there Newbie!

Good afternoon !

I'm Ellen from South Florida by way of New York. I was diagnosed

almost 14 years ago. I'm married and have one son (15 years old) in

High School. Basically, Rubin (my son) hasn't known me to be fully

healthy but still sees all that I do and try to do.

Honey, I'm going to tell you almost the same things everyone else is

about keeping positive and all that. To be honest, you're probably

getting to the point of 'enough is enough' when it comes to

suggestions; but you are right, no two are alike and we all have our

coping mechanisms.

You're background will be helpful to you but don't let it interfere

either. Knowledge is one thing, experience is something else

entirely. I'm glad that you have the know how, you'll at least know

some of the right questions to ask. Personally, I found myself

flapping in the wind until I went to the library (remember computers

weren't as popular 14 years ago) and read everything I could on the

subject. It wasn't very much and it was difficult to find.

OK, so you've heard from many of us in the family and yes, you are

now part of our cyber family. You have where to go to vent anger,

frustration, joy, depression, accomplishments and questions, etc. We

don't pretend to be doctors here and we only speak from personal

experiences. As always, doctors have the final say unless you

question them (I highly recommend asking questions).

Now darling, it's time to relax. Get off the computer, put your feet

up, and rest as much as you can. Oh, you had asked about exercise, I

almost forgot. I'm a rather LARGE woman but I've found walking in a

pool very helpful perhaps you might inquire about Aqua therapy. OK,

NOW I'm done. Go. It's time to rest. I can promise you someone

will be here when you come back on.

Why are you still sitting there? You're bed is calling - go lie

down. Do you like cyber chicken soup? Here you go, blow on it, it's

hot.

Take care and be well.

Ellen