Author Topic: Awareness Ambassador...  (Read 2451 times)

quilt4fun

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Awareness Ambassador...
« on: March 23, 2012, 03:29:14 PM »
        I have volunteered as an Awareness Ambassador for the  Sjogren's Syndrome Foundation.
      One of the things I was asked to do was to get publicity about Sjogren's in my local newspaper.
       You can find my article a www.nj.com/south.  On the search line- type "Janis Bond".
   
Age 64. PSS, Gerd, Kidney stones,  dry eyes, dry skin, borderline high cholesterol, osteoporosis. lung scar tissue,  Taking:  Plaquenil, Meloxicam, protonix, potassium citrate, fortical ,calcium+D,  Lovaza , genteel jel and theratears liquid  gel,    medrol and lacriserts

Joe S.

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Re: Awareness Ambassador...
« Reply #1 on: March 23, 2012, 03:41:36 PM »
Nice article. Nice picture. :) "But you don't look Sick." :) I am sorry that the story did not get into that comment. The article is a very good start. By the way, I don't look sick either.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
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Cheryl

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Re: Awareness Ambassador...
« Reply #2 on: March 23, 2012, 05:44:55 PM »
Hats off to you, Quilt4fun!  Great article!
Cheryl
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quilt4fun

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Re: Awareness Ambassador...
« Reply #3 on: March 24, 2012, 12:11:07 PM »
     Would you believe that the article reached a friend in Maryland through my DIL's facebook page---and she came up to NJ this weekend for church related activities.   And she could hardy wait to tell me that her doctor believes she has Sjogren's!  She goes in for further testing next week.  She has a cousin who also has Sjogren's.
   
    We talked for several minutes and share many symptoms.  I'll see her later today and have 3 pamphlets to give to her.
   
     This in one aspect of being an awareness ambassador that I never suspected!
Age 64. PSS, Gerd, Kidney stones,  dry eyes, dry skin, borderline high cholesterol, osteoporosis. lung scar tissue,  Taking:  Plaquenil, Meloxicam, protonix, potassium citrate, fortical ,calcium+D,  Lovaza , genteel jel and theratears liquid  gel,    medrol and lacriserts

Joe S.

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Re: Awareness Ambassador...
« Reply #4 on: March 24, 2012, 03:13:07 PM »
Hooray!
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

engy

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Re: Awareness Ambassador...
« Reply #5 on: March 24, 2012, 06:22:24 PM »
Thanks & good job!!!!!
DX:Sjogrens w/mild Lupus overlap,Hashi,Celiac,Raynauds,Sm.Fiber Neuropathy,POTS,Fibro.,CFS,OI & other dysautonomia.
No thyroid
Fish/Shellfish Allergy

RX:Plaquenil,Synthroid,LCarnitine,CoQ10,ALA,Dribose,Tumeric/Curcumin, Milk Thistle,AdreneVive,Fish Oil,Flaxseed Oil,Magnesium,B12 shots,vit D & C

susanep

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Re: Awareness Ambassador...
« Reply #6 on: March 24, 2012, 09:41:14 PM »
This is great.

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

smallfry

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Re: Awareness Ambassador...
« Reply #7 on: March 24, 2012, 11:48:22 PM »
Great story I have shared it on my facebook page.


Thankyou for your hard work with brinning awareness to Sjogrens I only wish that we have something like this in Australia.

Because I too would be along there with you.


Cheryl

Patze

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Re: Awareness Ambassador...
« Reply #8 on: March 25, 2012, 12:17:59 AM »
I'm with the others, nice article and cute picture too!  :D


Patze
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Cricket

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Re: Awareness Ambassador...
« Reply #9 on: March 25, 2012, 11:33:46 AM »
Great article!

You are a very beautiful woman! :)   How did you get to be an ambassador?
Female 64 yrs. old with:~Lymphoma ~SJS~, Fibro, Neuropathy, Spinal  Stenosis, Degenerative Discs, Shingles Arthritis, Hypo-thyroid.
Rituxan, Synthroid, Lopressor, Vasotec, Zantac, Zyrtec, evoxac, Lexapro, Neurotin, Ambien, Zanaflex, Voltarm, Vicodin, fish oil, Centrum vit.,  CoQ10, vit. D, Miralax

Katybarstool

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Re: Awareness Ambassador...
« Reply #10 on: March 25, 2012, 12:06:14 PM »
Well done Quilt

You did a very good article. Thank you for raising awareness for us all.

Hugs
Kathyx

quilt4fun

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Re: Awareness Ambassador...
« Reply #11 on: March 26, 2012, 08:56:14 AM »
Cricket,
  You can get more information about the Awareness Ambassador program on the Sjogren's Syndrome Foundation website and look under "get connected"
   OR contact Kathy Ivory--kivory@sjogrens.org
  They would be thrilled to have you and everyone else helping out!

And to all of you:  thanks!  I was a little hesitant to have myself featured-tried to have the main focus on Sjogrens.  This is only one aspect of being an Awareness Ambassador.  The first think I did was to distribute Defy the Dry booklets to several doctors in my area.  There is a 2 year long program- quite interesting--check it out.
 
Jan
Age 64. PSS, Gerd, Kidney stones,  dry eyes, dry skin, borderline high cholesterol, osteoporosis. lung scar tissue,  Taking:  Plaquenil, Meloxicam, protonix, potassium citrate, fortical ,calcium+D,  Lovaza , genteel jel and theratears liquid  gel,    medrol and lacriserts

A66eyroad

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Re: Awareness Ambassador...
« Reply #12 on: March 26, 2012, 09:54:06 AM »
Great article! I'm so glad that Venus Williams was mentioned --- I use her alot in talking to people. (Joe, she doesn't look sick, either!  8) )

Very nice picture of you!   :D

What do you mean that there is a two-year-long program? As an ambassador? Or in the Defy the Dry booklet?

(My college roommate lives in Tom's River, NJ. I am originally from Lake Hopatcong, NJ.)

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.

A66eyroad

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Re: Awareness Ambassador...
« Reply #13 on: March 26, 2012, 09:54:47 AM »
BTW, when I first read the subject line I thought you were an awsomeness ambassador!   :P
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.

quilt4fun

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Re: Awareness Ambassador...
« Reply #14 on: March 26, 2012, 03:11:28 PM »
A66eyroad,
    The "Defy the Dry" is a 2 year (I think) program where each quarter of the year another area of Sjogrens is emphasized . It is run by the Sjogrens Syndrome Foundation.   Ambassadors have something to do each quarter and " report in"  Our goal is to get information out to   doctors and the public about Sjogrens and get more people diagnosed in a shorter time.
Age 64. PSS, Gerd, Kidney stones,  dry eyes, dry skin, borderline high cholesterol, osteoporosis. lung scar tissue,  Taking:  Plaquenil, Meloxicam, protonix, potassium citrate, fortical ,calcium+D,  Lovaza , genteel jel and theratears liquid  gel,    medrol and lacriserts