Hello from almost Central timezone newbie

[grammad97]

Hi all.
Cannot believe it took me so long to find you all!
I am a late 50's married female. I was diagnosed with MCTD in 2003 and sjogrens in 2008.
My journey began in 1998 when I started having all sorts of weird health symptoms. I dealt with extreme fatigue, pins and needle limbs,  heavy feeling in limbs,  brain fog,  chronic sinusitis and GI issues. My doctor said I was stressed out. The first neurologists said I had carpal tunnel and if I lost weight it would go away. Granted I may have needed to lose maybe 10 pounds but I was in the normal weight range for my height /age /bone structure. Then my next neurologists said possible MS and did the MRI, EMG and spinal fluid draw. The top neurologists in northwest told me maybe MS maybe chronic fatigue and my doc should just watch me and my symptoms for now.
I was placed on a bunch of meds for symptoms and everyone made me incredibly ill with all the side effects.
All during this time I was working full time and coping the best I could with it all..
A move for my husband's work exposed me to new doctors. My first visit with a rheumatologist looking over my records and he said "so how long have you had lupus "? I almost fell over.
Apparently my labs screamed autoimmune. He was the first to put me on plaqenil and prednisone. He also addressed my pain and sleep issues. He retired and the next rheumy was even more thorough and said your symptoms are all primary sjogrens and not lupus definitively but I see MCTD. He kept me on plaquenil,sleep RX, pain RX, and a gluten free diet for GI issues.
He also suggested I go on disability since I had missed so much work.
So here I am retired due to disability and with new docs in a new state. Medications have changed a bit.
plaquenil,, butrans patch,carisprodol,potassium,vit d, b complex, and still on a gluten free diet.
hope this was what I was supposed to do to introduce myself and give my story.
Nice to meet you. I look forward to getting to know you.

[Joe S.]

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.

[Cheryl]

Hi Gramma! 
I'm glad you found us, too.  Thank you for the introduction  .   I hope you find good information and great support here.  You will find that we are all different, but we share symptoms and benefit from each other's experience and advice.  I'll look forward to getting to know you.  Welcome!
Cheryl   

[Bucky]

Hi grammad97 - welcome!

Do you by chance live in Indiana?  I know part of the state changes their clocks here soon, and some don't (or at least, that's how it used to be). 

I'm glad you "found" us - although, it means yet another person is dealing with Sjogren's.   

They say, there are 4 million people with Sjogren's.  If the truth be known, I bet it's much higher than that.  Some people experience many of the same symptoms we have, but become accustomed to dry eyes, dry mouths, or attribute subtle changes to getting older, etc.

It sounds like you have a "keeper" of a Rheumy.  That's always a big help when you feel you are being listened to and helped by the doctors.

We're members from literally, all over the world.  It appears Sjogren's doesn't discriminate and hits both young and old, female and male, from all walks of life.

I hope you find this site helpful to you on your Sjogren's journey.  Please know, when you come here, we "get it".     We understand the long journey to diagnose for some, the ups and downs of daily life with Sjogren's, the new ways we adapt to our lives with an autoimmune disease.  It certainly is a learning experience - just when you think you have it all figured out, bam . . something comes along to change that.

You could spend months here just reading.     The search box to the top right of this page will take you to previous threads about all kinds of topics.

Again, welcome!

Bucky

[grammad97]

I am right near the North Dakota border in eastern Montana.

[Joe S.]

The weekend of the 19th I will be giving a lecture at ValleyCon, a Science fiction Fantasy convention in Moorhead, on "CAM Theories and Therapies".

My mothers great Aunt lived in Montana (Big Sandy) and the rest of her family lived in North Dakota (Arthur). During 1912-1914 she received letters from home and letters from her husband when she was visiting family. One of my cousins uses the book "Letters to Ida" to teach history of the Great Plains to her 3,4,5 graders. I am thinking of republishing it as and E-book (deep discount for schools). A lot of women love the book, especially the love letters.

[grammad97]

I will have to find it at the local library and read it. So much rich history here along the Yellowstone and Missouri rivers.
Thanks for info.

[susanep]

Welcome, and glad you found us since you are dealing with these issues. We are all here for each other. We do understand.

susanep

[slccom]

"I am thinking of republishing it as and E-book (deep discount for schools). A lot of women love the book, especially the love letters."

Joe, that sounds like the perfect project for Booklocker.
Sharon