another Newbie & looking for local support

[Texasgranny]

Hello, everyone -
   I'm new to this site but I was diagnosed in 2006 with primary Sjogren's. It's progressing and I'm seeking a rheumatologist with whom I can work (couldn't deal with the staff of the 1st rheumy).
   Also, I live in rural area of Texas, west of San Antonio, and cannot find a support group close enough for driving. I don't know of anyone around here with Sjogren's and people look at me funny when I tell them what I have. I even had an MS patient tell me, "You don't look sick." Well, I don't but I sure sometimes feel bad. I would just like a friendly, understanding voice. Anyway, I just found this site a couple of days ago and already I feel better. Thanks to the entire staff for doing this and being here for all of us!
   I will add that I'm a member of the Sjogren's Syndrome Foundation and they are a wealth of information. They also have free brochures for handouts. I asked for 50 and got them and I've been handing them out to anyone and everyone I can - just to create awareness. Goodness knows, we need more awareness.
   I would love to communicate with anyone living in my area, maybe even start a support group.
   Blessings to all,             
   Texasgranny

[Bucky]

Hi Texasgranny - welcome!

We have a number of members from the state of Texas.  Since you are a member of the Sjogren's Foundation have you checked their section about support groups?  I live in Illinois and the support groups they have listed are three hours away from me.   

Even though we can't meet face-to-face on this forum (although, several of us HAVE met each other in person), we can be a cyber support group - as "we get it" when we speak of fatigue, dryness, aches and pains, symptoms,  etc.

If there is a particular topic you are interested in finding out more about, if you put that word(s) in the search box to the top right of this page, it will take you to previous threads about that topic.

There are a lot of helpful links too on our link page.

Good Luck with your Rheumy search - I hope you find one that you feel will be a good match for you and will help you on your Sjogren's journey.

Bucky

[susanep]

Welcome to the forum. We are all on this journey, and it is indeed a journey. Bucky gave some good information. We all are here to help, and listen to each other.

We are all in different places with our journey. Please feel free to come here and ask any questions, give any information, or to just get something out that is bugging you about all this that we all go through.

susanep

[Joe S.]

Welcome Texasgranny. If you can not find a local support group you can start one. Remember "helping you, helps me" is the model of most support groups.

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.

Sjogren's – 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. Don't 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 Sjogren's 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 S's of Sjogrens.

[lynnmarie219]

Hi Texasgranny and welcome to Sjogrens World!

Take the time you need to read through some of the great information here...so many people from all over the world come together to share their experiences and knowledge....plus we have a lot of fun here too! It is nice to know that there are other people around who really do "get it".

[Nancy60]

Welcome Texasgranny from a fellow Texan!  This is a great site with lots of info and helpful people with experience to draw from.  Glad you are here!

Nancy

[susanep]

Welcome Texasgranny - You will find many wonderful, understanding people here who can relate to what you speak of.

Each person who comes here adds something just by there being here for everyone else.

I hope we can be a comfort to you.

susanep

[Livingwithsjs]

I live in San Antonio and also would like to have local support