Author Topic: Newbie.  (Read 692 times)

Birdyturd

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Newbie.
« on: December 30, 2017, 05:34:41 PM »
My name is Tess. I'm 31 years old and I was recently diagnosed (10/16/17) with sjogrens syndrome. I'm so happy to have found this form. I don't know anyone who can relate to me or who has sjogrens.   I don't feel so alone anymore. Thank you for making a place to bring all the sjogrens warriors together.   It really helps.

Sending love to you all.

-Tess

Joe S.

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Re: Newbie.
« Reply #1 on: December 30, 2017, 05:46:31 PM »
Welcome, Tess. It is nice to see a post from you. There is a lot of information to be found on this forum in the archives and with the active members.

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Carolina

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Re: Newbie.
« Reply #2 on: December 31, 2017, 08:27:20 AM »
Yes, welcome indeed, Tess!

This is a wonderful resource, along with a good medical team, and your friends and family.  I hope you didn't have to spend too long before you got your diagnosis.   

A couple of points, in no particular order:

1.  Most people (the vast majority) with a diagnosis of Sjogren's have a great life, with few complications from Sjogren's.  They manage the symptoms (dry mouth, dry eyes, dry skin) with fairly easy 'home remedies'' like a humidifier, eye drops, lozenges, skin lotions.

2.  For dry mouth there is a prescription medication, two actually:  Salagen (pilocarpine) and Evoxac (Cevimeline HCL).  These are essential for dry mouth, if it is severe.

3. Those who post here usually have the most difficult cases of Sjogren's.   Take what you need and leave the rest  Some people come here, ask questions perhaps, and then don't spend more time with us because they don't need more help.  This is normal.   Don't become discouraged or frightened from what you may read here.  We are, often, the 'worst case scenario'.  Remember, the vast majority of those with Sjogren's don't have the progression that some of us have experienced.   But we are here when you have questions about how you are feeling or what you are experiencing.

4.  Most family and friends won't understand Sjogren's.   Sjogren's is a chronic condition of your Immune System.  You can treat symptoms but there is currently no cure.  People are most comfortable with illness that has a cure, preferably a quick cure.   And of course, Sjogren's doesn't show, so you 'don't look sick'.  We're here because we do understand, and for mutual support.

That's about it, for now.

Hugs, and Welcome   Elaine

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Birdyturd

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Re: Newbie.
« Reply #3 on: December 31, 2017, 01:52:09 PM »
Thank you for the warm welcomes. I really appreciate it.  :)

Sharon

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Re: Newbie.
« Reply #4 on: December 31, 2017, 02:37:49 PM »
Welcome Tess, sorry you're going through this but glad you found this group.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

Scottietottie

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Re: Newbie.
« Reply #5 on: January 02, 2018, 01:33:13 PM »
Welcome Tess  :)

I hope you find the site useful. Friendly bunch in this forum and uaually pretty quick with replies.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

Birdyturd

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Re: Newbie.
« Reply #6 on: January 07, 2018, 03:04:34 PM »
Thank you Sharon and Scottie. It means a lot.

irish

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Re: Newbie.
« Reply #7 on: January 07, 2018, 06:01:29 PM »
Welcome to you. This Sjogrens is such a hard thing to deal with and it really helps to have the information and experience from others to help one deal with life. You can do a search anytime and you will find info on many different subjects.

Everyone here had a story to tell and there is so much to be learned from all these people. Keep a positive attitude cause that does help one cope with these symptoms. The one thing that we can depend on much of the time is that our symptoms seem to come and go, which is good. Good luck. Irish

finallyadx

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Re: Newbie.
« Reply #8 on: January 09, 2018, 10:19:39 AM »
Welcome to the forum Tess.  Sorry to had to find us, but glad you did.

You will find the members of the group to be informative, educational and very supportive.

Sending positive thoughts your way.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

lorigacc

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Re: Newbie.
« Reply #9 on: January 16, 2018, 12:57:33 PM »
Welcome aboard :)
Secondary Sjogrens, Rheumatoid Arthritis, Antiphospholipid Syndrome, Osteoporosis, Vertebral Compression Fractures, Kyphosis, Hiatal hernia
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