1. < Autoimmune Diseases

Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I'm in pain most days and would like to have discussions.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Texas Freedom | @oregongirl | May 6, 2018
In reply to @lisalucier "Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on..." + (show)
@lisalucier

Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome -- in themselves or in a loved one -- here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.

@gemmax and @mickie75 -- wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.

Jump to this post

My wonderful husband was so weak. I took him to doctor. We we're waiting in waiting room for what seemed like forever. I got upset and walked back and told them he was very sick. I told the Dr I thought he was dying. He said...he is NOT dying. My husband passed the next evening. I think doctors are not what they used to be. They thought they were God and found out they were not.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | May 6, 2018
In reply to @lisalucier "Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on..." + (show)
@lisalucier

Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome -- in themselves or in a loved one -- here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.

@gemmax and @mickie75 -- wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.

Jump to this post

@gemmax, Hello Gem. Thank you for sharing your Sjogren experience. My sister also has Sjogren's along with Systemic Lupus and vitiglio. Autoimmune diseases run in my family. I have congenital COPD and have a fragile immune response system, my daughter has Raynaud's Syndrome, and a first cousin with Sarcoidosis. Do you find that others in your family also have autoimmune issues?

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Moderator
Lisa Lucier, Moderator | @lisalucier | May 6, 2018
In reply to @lisalucier "Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on..." + (show)
@lisalucier

Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome -- in themselves or in a loved one -- here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.

@gemmax and @mickie75 -- wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.

Jump to this post

Oh, @oregongirl -- I'm so sorry to hear about this painful experience and for the loss of your wonderful husband.

REPLY
Gem | @gemmax | May 6, 2018
In reply to @lisalucier "Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on..." + (show)
@lisalucier

Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome -- in themselves or in a loved one -- here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.

@gemmax and @mickie75 -- wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.

Jump to this post

@windwalker Oh yes. There are several family members with autoimmune illness. I have done alot of studying and it seems that all of these illnesses are becoming more prevalent or perhaps doctors are learning how to diagnose them better.We have 3 with Sjogren’s, 1 with psoriatic arthritis, 3 with RA, 1 with Lupus just in recent times. I have an interesting ancestry which I have often wondered might play a role in the tendency to have these illnesses. Honestly, over the period oftime that i have been ill, I have seen some improvment in the knowledge that is available to doctors, but it is still slim. Most people become autoimmune after a serious event such as an infection or other illness. With me, it was Legionaires disease. Did you have an event or an illness that you can point to as a starting point?

REPLY
Gem | @gemmax | May 6, 2018
In reply to @lisalucier "Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on..." + (show)
@lisalucier

Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome -- in themselves or in a loved one -- here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.

@gemmax and @mickie75 -- wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.

Jump to this post

@oregongirl I care and I’m sorry for your sorrow.

REPLY
jewel8888 | @jewel8888 | May 6, 2018
In reply to @lisalucier "Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on..." + (show)
@lisalucier

Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome -- in themselves or in a loved one -- here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.

@gemmax and @mickie75 -- wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.

Jump to this post

Really sorry for your loss @oregonngirl
That must have been so terrifying.

I have been in ER recentl several times and I would not want main Dr. for anything. I begged him to keep the woman I was helping at my home after a terrible fall (broke wrist and groin tear) social severcis had me take her to their sister hospital where they did help her get to rehabilitation place.
Hugs, julie

REPLY
peach414144 | @peach414144 | May 6, 2018
In reply to @lisalucier "Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on..." + (show)
@lisalucier

Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome -- in themselves or in a loved one -- here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.

@gemmax and @mickie75 -- wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.

Jump to this post

@ dear oregonwoman IT IS A SHAME TO THE MEDICAL FIELD FOR YOUR HUSBAND TO BE MISTREATED THIS WAY. I AM SURE THAT ALL WHO WILL READ THIS WILL FEEL THE SAME. My husband could not rise from the bed. When I called his doctor she said in a nasty way "If you think he ts that sick then take him to the ER". We did......'he died six days later." sO i KNOW HOW YOU FEEL. sHE WAS HIS FAMILY DOCTOR FOR YEARS. wHERE IS THE COMPASSION? the humanity?

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peach414144 | @peach414144 | May 6, 2018
In reply to @lisalucier "Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on..." + (show)
@lisalucier

Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome -- in themselves or in a loved one -- here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.

@gemmax and @mickie75 -- wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.

Jump to this post

@ COULD NOT COMPARE WITH FAMILY HISTORIES AS HITLER COOKED THEM IN HIS OVENS. peach

REPLY
Gem | @gemmax | May 7, 2018

@peach414144 When I was working on my genealogy, I found a 3xgrandmother who was a slave..born into it after her mother ws taken from Mopzambique. I sat down and cried for her and her mother and younger sisters and brothers. Her burial place remains unknown as does my 3xgrandfather, a european . I still cry for the atrocities of man. I take some solace from these words from Ecclesiastes 12:7 "Then shall the dust return to the earth as it was: and the spirit shall return unto God who gave it.” It is my belief that God knows us all. Our legacies, our prayers are not lost. I can't know your pain, but I can care about all the lives that have been lost to evil. Be blessed.

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3 replies
Gem | @gemmax | May 7, 2018
In reply to @lisalucier "Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on..." + (show)
@lisalucier

Hi, @gemmax and @mickie75 -- I wanted to introduce you to some of the members on this site who have talked about Sjogren's syndrome -- in themselves or in a loved one -- here in this discussion or elsewhere in the Connect community, such as @cmtg @kibwezi @marylou705 @peach414144 @johnwburns @oldkarl @devonsdad2008 @graveltruck @jewel8888 @sebley12 @briansr @frank1 @ccorrconro @mswanda @bettyjeanne @kkteel1 @66andcounting and others.

@gemmax and @mickie75 -- wondering if you'd tell a bit about your story with Sjogren's, and hoping some of the others here might introduce themselves and lend a hand with any challenges you are experiencing with this syndrome.

Jump to this post

peach414144 and that is the most important question of these times. We are not ging to let evil win however.

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