Newly diagnosed last week, waiting for appt. with Rheum. doc. Looking for information. Is there a newbie board here or do I just jump in anywhere? Thanks.
Hi Farm! Welcome. You'll get an official and public welcome from one of the long time moderators and others. This is where I started a couple of months ago. There are so many wonderful people here and you'll learn a lot...and probably teach us things as well.
Looking forward to your posts --- Mary Beth
Hi Farmgal - welcome!
This section here is where the newbies introduce themselves. :)
If there are certain subjects you are interested in knowing more about, if you put that specific word(s) in the search box to the top right of this page, it will take you to previous threads about that topic.
We are a worldwide, diverse group of both female (90%) and male, young and old, from all walks of life.
We have some members who have Sjogren's for a very long time, others, like yourself, who are brand new to Sjogren's, and then those who are somewhere in-between.
When you feel comfortable, if you could tell us a little bit more about your journey that led you to go to the doctor and get a Sjogren's diagnose. Do you have the classic dry eyes & dry mouth? (some do, some don't)
I hope you find this site helpful to you on your Sjogren's journey - just remember, we're all traveling this road too.
Bucky
Welcome, Farmgal! Feel free to post whenever you like. We'll look forward to getting to know you.
Cheryl
Hi Farmgal :)
Welcome to Sjogren's world. I hope you find the forum useful. It is certainly friendly and supportive. Feel free to post and to reply to posts.
Take care - Scottie :)
Hi farmgal
I'm always sad to see someone new but if you gotta have sjs this is a great place to be. The members here are caring and full of useful knowledge.
XOXO
Ldy
Welcome , I am a newbie also. Not so new to sjogrens but to the site. It is wonderful and has lots of info. Looking forward to your posts. Happy New Year. CK
Welcome Farmgal. :)
I live in eastern Iowa. Though I am a city gal, I have tons of cousins who are farmers in Wisc and MN. I call myself a farm gal spoiled by the city.
You will learn a lot on this site from "real" people who have Sjogrens and have had or going through what you are. So glad you got officially diagnosed!! Many of us had to go through years of "so call specialists" until we finally got a diagnosis. Our eyes have really got open about doctors, medicines and we sound so smart because we learn a bunch of "big" words. ;)
Hi Farmgal, and Welcome! :D
Let me welcome you to the forum, and say that you posted just perfectly. We don't have a "newbie" area; just jump in anywhere. (it is good that you said you were new in your subject topic, so we notice it easier)
We all know how there can be so much information to take in, and sometimes it can be a little overwhelming. Please post and ask anything at all; we will all do our best to answer your questions. This is a great group-supportive, encouraging, informative and just a bunch of people who "get it." :)
We're glad you found us, and we look forward to hearing more from you!
Melinda
Thanks for the welcome. Is nice to find somewhere to explore the facts as all is very new right now. Had typical complaints for GP of dry mouth/eyes/skin and tooth problems. Now seeing some things that I attributed to aging that may be sympt. too....joint pain and fatigue. Still waiting for first appt with rheum. and not sure what to expect there either. Trying to remember what I was told about blood tests done...positive ana, high ssa and b, thyroid wacky. Think I will ask for a copy of the labs now and sort them out too.
Quote from: Farmgal on December 31, 2012, 01:27:57 PM
Trying to remember what I was told about blood tests done...positive ana, high ssa and b, thyroid wacky. Think I will ask for a copy of the labs now and sort them out too.
Farmgal - it's a good idea to keep a file on yourself with copy of all lab work you have done.
Another doctor that will be helpful to you in your Sjogren's journey will be your dentist. With the dry mouth, it can cause havoc on your teeth because of the lack of saliva to wash away bacteria. If you don't already carry water with you, you might need to. I never go anywhere without my water. It's difficult for me to swallow food without some sort of liquid to help it down.
It's also quite common for those of us with Sjogren's to have thyroid issues. My lab work for the thyroid goes up and down, up and down. In fact, I'm waiting on test results that I had taken before Christmas - hoping that later this week I'll get some answers.
If you have the dry eyes - there are many over-the-counter eye drops. It comes down to personal preference. I alternate between Systane Ultra and Thera Tears. My Optho wanted me to use prescription Restasis, but it was too expensive for me.
I remember at one time, someone had posted a kind of "what to expect at your first Rhemy visit" post - I'll have to see if I can find it for you.
Bucky
Farmgal - here's two previous threads about first Rheumy visits that might be helpful to you:
https://sjogrensworld.org/index.php?topic=6525.msg63929
https://sjogrensworld.org/index.php?topic=20665.msg220612;topicseen#msg220612
Bucky
Keep a log of your meds and how you react to them, too It may take a while to get things that work for you. And remember that there is no such thing as a stupid question. You may well have a symptom that makes us all think.
Welcome, and sorry you need to find us!
Sharon
Thanks again for the advice and for the links. Since my new doc/rheumy is several hours from home I want to be prepared for visit well.
Hi Farmgal,
Just wanted to add my welcome to you! You have already been given some good information from the others....I always ask for copies of my labs/tests and keep them handy to give a copy over to another doctor if needed....they have always been appreciative of them! I also keep a list of medications and dosages and take that with me to any appt as well.
Being your first visit...it is definitely a good idea to write down your main concerns and any questions you have before going. Once you get to the appt....sometimes you feel overwhelmed and forget to ask what you intended...for me that's the case at least! Then don't forget to take the list with you...lol! ;)
Welcome to our big family here!
Welcome Farmgal,
While I am glad that you found us, I do not like it that anyone else should have to deal with this health challenge. I am more frustrated when I see younger people with this illness understanding that there is so little that is being done to help us. I believe that the medical model for Auto Immune disease is wrong. I use alternative therapy because of bad reactions to Plaq and MTX.
Sjogrens: Dry eyes, dry sinuses, dry mouth, dry skin, and dry bum.
You may or may not be faced with other health challenges related to this disease that the doctors do not tell you about. Auto Immune (AI) diseases love to bring their friends. If you have one, eventually you will have more than one.
I like also suggest that people with AI diseases read Spoon Theory on the web. It helps to explain how our lives have changed and helps us understand how we can manage the changes to our lives.
http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
1. Do not Panic: Anxiety can make your symptoms worse. I suggest that you read and practice the exercises in the book Feeling Good by David Burns. The book is on Cognitive Behavior Therapy (CBT). It has information on dealing with depression, grief and other mental health issues that you may face in living and managing this disease.
2. Breathe: For as long as you live always remember to breath. When we are in pain, our muscles go into a splinting action. I know that it is hard but we must remember to breathe through the pain.
3. Meditate: Meditation can help you deal with pain and symptoms. When you can do it for 15 minutes you will be at that stage. Here is a very easy meditation technique that will help you as it has helped me. Find a safe comfortable position and close your eyes. With your eyes closed, look to the top of your forehead. As you breathe in, think I am as you breathe out, think calm. Repeat as needed. Meditation can be as good as sleep.
With Sjogrens we tend to have a lot of infections so wear your polar fleece mumps scarf to bed. This will help your body to fight these infections. This link will help with the gland issues: http://www.chakraforce.com/Tonations.html#228.
Omega3, D3, C, Multivitamin, Probiotics seem to provide general support to our bodies when we are facing AI diseases. I like to add an 8oz glass of carrot juice every day to help my body generate endorphins.
I take what I call the Fabulous Five supplements and I wish I had known about them when I got my first AI disease. They are Alpha or R Lipoic Acid, Acetyl-L-Carnitine, Biotin, PQQ, and Co-Q10. As with any drug or supplement, do your own research and consult with your healthcare professional.
Sip-Swish-Swallow are the three Ss of Sjogrens.