Sjogren’s Syndrome – Introduce yourself and meet others

Becky, I don't think I saw this 1st message from you- sorry! I just responded to your other one.
Re.; toxic exposure- yes, I am a 9/11 survivor with significant dust cloud exposure and some long term environmental, as a resident.
The reason I specifically wonder about this with my salivary gland, is that I have been told my mass is unusual, and I also have very specific memories about the taste of ash and chemicals in my mouth- for weeks. "I can't get the ash out of my mouth". It was very disturbing, and still is to remember, but that's the connection. I am a member of one of the WTC clinics here in NYC, and have notified my GP there. Once I get my next test/MRI results, I'll get opinions from their ENT as well.
Nancy

Hi Everyone, I have had Sjogren's symptoms all my life but wasn't diagnosed until 30+ years ago. My dentist has told me to only use Biotene products and they have really helped. My ENT has me using a heating pad on my non-functioning parotid glands. I don't understand why doctors keep testing to see if you have Sjogren's as you never get rid of it. I have had results that show my Sjogren's is gone- I wish it was! I have learned over the years to give into my flares. Otherwise, they last longer. Just make sure you see a good opthomologst and keep using eye drops. Take care.

@jmb73 I just read your post and I wanted to let you know how important it is that you said, "I have learned over the years to give into my flares. Otherwise, they last longer."

This is so true of any chronic illness. If we continue on our usual path when we are having a flare-up of the disorder it really does take longer to get better.

Thanks for those words of wisdom!

@jmb73 I just read your post and I wanted to let you know how important it is that you said, "I have learned over the years to give into my flares. Otherwise, they last longer."

This is so true of any chronic illness. If we continue on our usual path when we are having a flare-up of the disorder it really does take longer to get better.

Thanks for those words of wisdom!

@jmb73 and @hopeful33250 That comment about "...give in to my flares" is so important. I was born with several AI issues, and many of them have been life-long pals. Sjogrens is one, another FKTN, and GSN. Anyway, one of the impacts of FKTN is a foot turning sideways. Since I learned to walk, my right foot has gradually turned out. Now it plants at a 45 degree angle, and is moving to planting at at 90 degree. Doctors, therapists, parents, busy-bodies, have tried to influence me. "All you have to do is concentrate" GARBAGE! Now I know for sure what I once just suspected. That foot will turn out regardless of my efforts. Even Mayo at one time suggested cutting the bone and re-attaching it at the proper angle. I suppose the same could be done with my head, said my school teacher.

@oldkarl

You have certainly been dealt with some difficult diagnoses. Have you developed any coping mechanisms that have helped you deal with this?

@hopeful33250 Seriously so, Teresa. Everyone must develop their own coping mechanisms.
1. I learn everything I can about my issues, regardless their origins.
2. That includes, in my case, looking at genetics, the full genome. I learn what national and international, as well as local, organizations might help me in some way. I keep a notebook with this stuff.
3. I track everything I think might be important. Blood pressure, pulse, bleeding, glucose, medicines, rash, edema, everything.
4. I make friends with local docs, nurses, ambulance crews, pastors, etc.
5. I do some research on my own, knowing that no doctor or lab can know everything. such as, that FKTN and GSN and Noonan Syndrome are nearly identical triplets in impact on the body, and one is rarely found without the other two.
6. I take my meds conscientiously, unless the clinic or the pharmacy messes up my Rx. Then I raise he//.
7. I have friends around the world who lift me up. Russia, Brazil, Tanzania, Nepal, makes no difference. All the appearance issues are a matter of genetics and other things, so none of that really matters.
8. I make a serious point of trying not to judge any thing or any one else, such as age, gender, appearance, habits, education, anything. I know I have made many mistakes in my life, and they embarrass me. So I try to avoid hurting any one else or get in their path. This is a matter of decision and commitment, more than anything else.

@hopeful33250 Seriously so, Teresa. Everyone must develop their own coping mechanisms.
1. I learn everything I can about my issues, regardless their origins.
2. That includes, in my case, looking at genetics, the full genome. I learn what national and international, as well as local, organizations might help me in some way. I keep a notebook with this stuff.
3. I track everything I think might be important. Blood pressure, pulse, bleeding, glucose, medicines, rash, edema, everything.
4. I make friends with local docs, nurses, ambulance crews, pastors, etc.
5. I do some research on my own, knowing that no doctor or lab can know everything. such as, that FKTN and GSN and Noonan Syndrome are nearly identical triplets in impact on the body, and one is rarely found without the other two.
6. I take my meds conscientiously, unless the clinic or the pharmacy messes up my Rx. Then I raise he//.
7. I have friends around the world who lift me up. Russia, Brazil, Tanzania, Nepal, makes no difference. All the appearance issues are a matter of genetics and other things, so none of that really matters.
8. I make a serious point of trying not to judge any thing or any one else, such as age, gender, appearance, habits, education, anything. I know I have made many mistakes in my life, and they embarrass me. So I try to avoid hurting any one else or get in their path. This is a matter of decision and commitment, more than anything else.

What a great list of ideas, @oldkarl! You definitely advocate for yourself and actively choose healthy attitudes and behaviors that will lift you up. Congratulations!

If you have no objections, I would like to share this post with others who may not be as diligent in this area of proactive behavior.

@hopeful33250 Seriously so, Teresa. Everyone must develop their own coping mechanisms.
1. I learn everything I can about my issues, regardless their origins.
2. That includes, in my case, looking at genetics, the full genome. I learn what national and international, as well as local, organizations might help me in some way. I keep a notebook with this stuff.
3. I track everything I think might be important. Blood pressure, pulse, bleeding, glucose, medicines, rash, edema, everything.
4. I make friends with local docs, nurses, ambulance crews, pastors, etc.
5. I do some research on my own, knowing that no doctor or lab can know everything. such as, that FKTN and GSN and Noonan Syndrome are nearly identical triplets in impact on the body, and one is rarely found without the other two.
6. I take my meds conscientiously, unless the clinic or the pharmacy messes up my Rx. Then I raise he//.
7. I have friends around the world who lift me up. Russia, Brazil, Tanzania, Nepal, makes no difference. All the appearance issues are a matter of genetics and other things, so none of that really matters.
8. I make a serious point of trying not to judge any thing or any one else, such as age, gender, appearance, habits, education, anything. I know I have made many mistakes in my life, and they embarrass me. So I try to avoid hurting any one else or get in their path. This is a matter of decision and commitment, more than anything else.