Hello!

[Kaylin]

I want to thank everyone in the chat tonight.  It was so nice to have such a friendly and welcoming group to pass the time with this evening. 

I have been reading here since last fall when my Dr. told me I have SjS.  I have been taking plaquenil since late last year and I think it's helping with the fatigue and joint pains but not so much with the neuro problems or the dryness.  I'm 42 and I live in Glendale, AZ.  I have 4 kids, 1 grandson, a wonderful husband, 2 dogs, 2 cats, and 2 birds.  I quit working a few years ago when I started having so many problems and now I spend way too much time on the computer.  I've always loved the internet, so much information and so many people with just a few clicks and key presses.

Well, I know there was something I wanted to ask, but I'll be darned if I can remember right now, so I guess I'll just leave it at that.

[Joe S.]

Glad you found us. Must be brain fog.

[Patze]

Hey Kaylin!

It was really nice to chat with you last night!  Please do peruse the board as there are tons of tops and oodles of information that you just might find interesting.

No worries about remembering, if I could remember half the things I should, I'd be dangerous. 

Again, welcome, and I hope to chat with you again.

Take care of yourself -

Patze

[lynnmarie219]

Hi Kaylin and welcome to Sjogrens World!

I'm glad that you found chat so fun and welcoming last night....I don't get there often...just once in a great while...but I'm on the boards here posting often!

Anyway....I just want to welcome you and thank you for telling us a bit about yourself....glad to hear your an animal lover...me too!   

[Scottietottie]

Hi Kaylin 

Welcome to Sjogren's world. Just ask the question when you remember! I hope you find the site useful and visit often.

Take care - Scottie 

[Kaylin]

Thanks for the welcomes.  What I wanted to ask about was the best way to get information to my Dr.s.  I had an appointment last week and forgot why I was there and didn't bring up my ear ache and lump on my neck.  My husband says I need to write everything down.  I've never needed to do that and I'm lost as to the best way to get it done.  I feel that if I write everything down every day that I will just end up with a rather large notebook full of nonsense.  How do I know what's important and what's the best way to organize it so that I have the info available for the Dr.?

[Joe S.]

Write down a list of your symptoms. Mark after each the number of days that you experience it. Include brain fog. bring an advocate with you to the appointment.

[Scottietottie]

Hi 
I kep a symptoms diary by making a 'table' in a word document. I don't make an entry every day but if somethinmg new crops up I eneter it, or if something is really troublesome I repeat it. I think I name the columns "day, date and symptom". I also document doc appointments.

Take care - Scottie.

[Cheryl]

Kaylin,
  It was nice meeting you in chat last night.   Hope you come often.

  I tend to take a list with me when I have a check-up.  Visits are so rushed, and it's easy to forget to ask about something.

See you soon in chat!
Cheryl

[bloodless]

Ditto to all the above and also keep a prescription list with dosage. You'll be glad you did every time your sent off to a specialist which is a common occurance for most of us.

[Kaylin]

Yeah, I finally broke down and wrote down all my pills/dosages.  My dr. didn't like it when I told him my little brown pills made my stomach upset and the little white ones dried things out too much.

[meow]

Thanks for the welcomes.  What I wanted to ask about was the best way to get information to my Dr.s.  I had an appointment last week and forgot why I was there and didn't bring up my ear ache and lump on my neck.  My husband says I need to write everything down.  I've never needed to do that and I'm lost as to the best way to get it done.  I feel that if I write everything down every day that I will just end up with a rather large notebook full of nonsense.  How do I know what's important and what's the best way to organize it so that I have the info available for the Dr.?

I have started a diary of symptoms, meds I am taking, vitamins I am taking, general diet and exercise status, sleep patterns, etc, so I can take it with me when I go to the doc. I got just a kid's composition book.  That way I can note any changes, and if I have to make some connections about what works, what doesn't, what makes it worse, etc, I have the tool to do it.
Writing all that down took one page. Every time I go to the doctor, I'll make notes about that. So, hopefully it will be only a few pages a year.
I did that when I started taking synthroid in 1986. It turned out I didn't really need to do that, but with this, I think it's a good idea.
Then, when I die, my husband can see it and they can chisel "I TOLD You I Was Sick" on my tombstone   

[Kaylin]

I went to my rhuematologist appointment and my brain was cooperating for the most part.  He basically told me that SS is dryness, joint pain, and fatigue.  The rest was something else and I need to go back to the neurologist.  The neurologist and dermatologist both told me that my problems are autoimmune and the rhuematologist needs to take care of them.  He suggested that I was developing fibro and gave me a script for that.  I don't buy it and went back to my pcp, who is sending me to a different rheumatologist cause he doesn't buy it either.  I sure wish he could just handle everything.

I still haven't figured out what's important or relevant and kinda gave up on the whole mess for the time being.  My husband and I started playing world of warcraft again so that I'd have something else in my life besides being sick.  It's nice to have a distraction.

[beautifulkrissy026]

I know how it is to go to the doctor and everything you have wrong with you is because of the disease.  It's just a big run around every doctor you go to just wants to brush you off and send you to a different doctor. Can you believe I called my Gyne about treatment for a UTI and he had the nerve to tell me "Call the rheumatologist it's probably the disease causing it." Just hang in there go to 100 different doctors if you have to until you find one that cares about you and listens to you. I seen my rheumatologist twice and I'm switching. I decided that after he told me to take tylenol for the pain. Obviously if Tylenol would work I wouldn't be at his office.

[meow]

If he means Tramadol, instead of Tylenol, tell him to give you an RX!