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I'm going to be meeting other women with Sjogrens

Started by Carebear, February 04, 2012, 08:49:12 PM

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Carebear

February 04, 2012, 08:49:12 PM
I am so excited to share this with everyone. 

There is no official Sjogren's support group where I live, so imagine my surprise when I was invited to meet with a small group of women at the end of month, who all have Sjogren's.  I can't wait!   ;D  Just sitting in a room of people who "get it".  Can you imagine?  ;)
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

lynnmarie219

#1
February 04, 2012, 09:10:12 PM
Sounds like a great opportunity for additional support and information for all of you! Good luck with this and let us know how it goes!

Meld256

#2
February 04, 2012, 09:37:00 PM
Carebear,

I'm excited for you!  ;D  This sounds wonderful.

You'll need to let us know how it goes. "Inquiring minds" and all... ;)

Joe S.

#3
February 04, 2012, 11:10:39 PM
Go for it! "Helping you helps me", is the model of a good support group. (I read this in a white paper from research by our Canadian friends).
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Madison Granny

#4
February 05, 2012, 08:32:57 AM
That would be one of the greatest things.  I wish I knew of at least one other woman who had SJS.  It would sure be nice to talk to someone in person who really gets it. 
Primary SJS, dRTA, Osteroporis, OAB, stage 3 kidney disease, hypothyroid and high blood pressure.  Medicine I take are plaquenil, bicarb, prolia, synthroid, toprol and amolipine, citracal and vitamin D.  I use Arex and Azasite and Prolia.  I also have Reynaud's and osteoarthris of the toes

Joe S.

#5
February 05, 2012, 09:19:51 AM
On one trip to see my grand kids on Vancouver Island, I set up a meeting with some of the people that I had been posting with. We had a nice visit over lunch. We kept the members of the chronic pain support group in Fargo by phone.  Maybe there is some one in your area that is willing to talk by phone.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Patze

#6
February 05, 2012, 10:09:37 AM
Have fun Carebear, and don't forget to post if you learn some new info!


Patze
Our home page  http://www.sjogrensworld.org/index.html
Live chats  http://sjogrensworld.org/chats.htm

Everything has beauty, but not everyone sees it - Confucius

The important thing is not to stop questioning ~ Albert Einstein ~

Sero Negative Queen

Bucky

#7
February 05, 2012, 01:13:22 PM
Carebear - how did you find these other women? 

I've asked my Rheumy before if he has other Sjogren's patients and he said he did - but, because of privacy laws, he couldn't give me their names.   :(  I'd probably have to put an ad in the paper or something to find them.

The closest group I found via the Sjogren's Foundation is 45 min. to an hour away.

I have an idea for you.  When you go, take along some plastic spoons and hand them out (spare ones  ;)). 

Bucky
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

Carebear

#8
February 05, 2012, 02:10:38 PM
Thanks everyone.  Yes, what a wonderful opportunity to share experiences with a common enemy.  :D

Bucky -  I found the original contact person on the Sjogren's Society website but as it turned out, there was no such group...just one person who put her telephone number out there as a life line to other sufferers.  I called her and we chatted for a while, but that was about 18 months ago.  And wouldn't you know it, I thought about giving her another call only days before she called me?  ;)  Can you say "synergy"?  ;D

I will definitely let you know how things go.  No matter the outcome, I feel that this is a great opportunity.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

susanep

#9
February 05, 2012, 08:31:20 PM
That is wonderful, and yes let us know what happens. Curious minds want to know. ;)

susanep
Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

eye2dry

#10
February 06, 2012, 04:30:26 AM
Lucky You! This is a good thing for you to be a part of. I'll just bet you make some nice friends.

I missed out on a chance to meet a SJS person recently. At work one of my co-workers came up to at the end of the day and said she had discharged a patient earlier who had sjogrens, the patient asked if she ever heard of it and did she know of anyone else with it.

My co-worker told her 'I think so". She didn't want to divulge me or my illness. By the time things slowed down , the patient was gone and has not been back as of yet. Since I work part-time, may never get to see her.

Enjoy this wonderful opportunity.

eye2dry

valene2009

#11
February 06, 2012, 06:57:26 AM
oh good luck .that is great! there are no support groups where i live either-there is one for lupus and they encourage other autoimmune to join=i may try that..
my neighbor actually has sjogrens but she is 85 and we only talk when it's warmer out... i dont want to disturb her.. i dont know.. i am 37 ..she has had it for about 10 years.. I am not sure if she wants to talk that much about it...

A66eyroad

#12
February 06, 2012, 07:06:04 AM
One of my favorite things in the world is when I get to have lunch with Cheryl -- whom I met right here on the forum!  :)
Female, 61
Sjogrens, UCTD, and subacute cutaneous lupus. Flu-like symptoms, mouth & nasal ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, esomeprazole.

Bucky

#13
February 06, 2012, 04:17:31 PM
I've met and had lunch with Cheryl too!   ;D

I've also had the pleasure of meeting several of our other members too.   ;D  Just nobody who lives in my neck of the woods.   :(

Bucky
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

Cheryl

#14
February 08, 2012, 05:43:07 PM
Well, everyone already knows that I have met Bucky and A66eyroad!  :)  I intend to stay friends with both of them, as they have been a blessing to me.  I encourage you to get to know some of the ladies, Carebear, and don't forget to invite them here!
Cheryl
Chat co-host on Thursdays at 8:00 Eastern time
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