Anyone dx'ed Sjogrens Syndrome /MUST READ

Discussion in 'Fibromyalgia Main Forum' started by 139864, Apr 13, 2007.

  1. 139864

    139864 New Member

    I did not write this poem ,but I can relate to everything in it .People just don't realise just how demoralising it can be
    Brenda UK

    King Bills Sjogrens Poem

    So you think that Sjogrens is a joke,
    You think its funny when you hear her croak
    A mouth that is dry and not able to cry,
    And that’s not all that’s often dry
    If you don’t think its true, man have I got news for you,
    She’s like a car, that has no oil,
    No lubrication but a spark at the coil,
    Looking good, plenty of chrome and plenty of paint
    Feel as good as she looks? That she aint.
    Always tired, full of stress,
    Looking great, feeling a mess
    You wouldn’t know, if you met her in the street,
    That she’s almost dead on her feet.
    Frustration you can’t imagine, when you go to see the doc,
    Only to get fobbed off like some old crock
    Each time you go back,
    They treat you like, a hypochondriac
    And you know what I really despise?
    Those who think they are worldly wise
    They think that Sjogrens is a nuisance condition,
    Well here is someone on a mission.
    So watch out world, it’s time you knew
    And I’m the one to inform you
    Yes I am just the very chap, if you please
    To inform you properly about this Cinderella disease
    King Bill

  2. dr32164

    dr32164 New Member

    Thanks Brenda!!!!

    I can relate as well. Very true!!! It is a disease that robs more from you each day. It never abates, but progressively gets worse. At least that is my experience.

  3. 139864

    139864 New Member


    I think it is the worst of all my diseases !!!

  4. 139864

    139864 New Member


    CATHYRG New Member

    Good for you! my husband and i were discussing this same thing many of us have it?. my doc understands it effects our organs on the inside also. thank God. cathy g.
  6. mymichelina

    mymichelina New Member

    Yes I have it too.....and along with the oral and vaginal dryness I also have severe pelvic floor dysfunction as well. No fun....for my husband either.

    God Bless us.....
  7. 139864

    139864 New Member

    Thank you all for reading .
    Do any of you belong to a sjs support group on line ?
  8. IntuneJune

    IntuneJune New Member

    Yes, it is a heck more than dry eyes, dry mouth.

    And of course, when this subject comes up, SS, frequently I hear, "Oh, I have a dry mouth too and thirsty a lot."

    I say very little about my medical conditions. Over the thirty years or so, I have found I get less frustrated at other people. Let them think I am a little weird.

    A thought just came to mind.... :) :) :)

    Since there is really no way for us to explain our way out of how we act, why not exacerbate the whole overall impression by dressing outrageously. I mean way out there.

    An OVERSIZED blouse/shirt bright blue and white stripes
    A vest over the OVERSIZED shirt is optional
    Hot pink poka dot shorts, (to our knees)
    Thinly horizontally striped tights (guys knee highs)
    Color of shoes optional as long as they are bright. Bells on the shoe strings would be a nice touch.
    Now, the hat. This is where all your creativity should blossom. Hey that might not be bad, decorate with flowers, guys, how about a soccer ball (the best sport).

    I might go with red (if the Red-Hat Society would not mind. I have not officially joined but when I no longer work I will.)

    And now the final touch, an over-sized blow-up (colorful of course) hammer.

    Now, look at yourself in the mirror, smile and go forth into the world.

    My guess is we would be treated with a lot more respect than we are now and NO ONE would DARE think or tell us our syndromes are all in our minds.
  9. 139864

    139864 New Member

    "Let them think I am a little weird. "

    NO ! I don't think you are a little weird ...I think that you are a lot weird LOL in the nicest possible way
    Thank you sooo much for making my day
    Brenda Uk

  10. IntuneJune

    IntuneJune New Member

    I forgot accessories!! (Only the bells which are a must!)

    What would you suggest?

    Love, June
  11. lurkernomore

    lurkernomore New Member

    I was just diagnosed with Sjogren's about six months ago and am taking Plaquenil but it surely is a lot more complicated than simply dry eyes and dry mouth. (Although I do hate having six to eight more cavities each time I go for a cleaning or waking up with eyelids that are stuck to my eyeballs.

    There is a wonderful site for people with Sjogren's but I don't know if I can post it here. It has helped me so much in not feelig so lost and alone.

    The odd thing is that when first diagnosed with fibro, I was told it was not an autoimmune disease but many with Sjogren's either had fibro first ot have fibro along with Sjogren's. Another oddity is that I went to a bookstore yesterday to try to find a book on Sjogren's. There were at least twenty books on fibro and only one on Sjogren's. It sounds as if someone needs to catch up, doesn't it?

    CATHYRG New Member

    i am not sure if there is a on line support group for sjogrens. i agree there sure be more written about it also. when we are traveling i have had to explain to a doctor what it is and how it is effecting me. i too take placquinal. cathy
  13. lurkernomore

    lurkernomore New Member

    I just wanted to reply back and share the name of the book I picked up because it covers everything regarding the emotions of any invisible and chronic illness as well as the self esteem issues and isolation. (Holy run-on sentence there, sorry.)

    The title is The Sjogren's Syndrome Survival Guide by Teri P. Rumpf, Ph.D. and Katherine Morland Hammit. It does mention all autoimmune diseases but what I liked was that it addresses depression and how it is the RESULT and NOT the CAUSE of illnesses.

    It is very reader friendly and speaks to so many of the issues we all deal with, such as what to say or how we feel when people tell is we "look fine." It hit all the right spots to the extent that I found myself wondering how these people got into my head! Great book!
  14. Fibrolady37

    Fibrolady37 New Member

    is so spot on it made me sad when i read it but only because some people are so ignorant and they say stupid things like but you look so well.
    That may be the case but our poor eyes tich sting and feel like they got grit in them.
    My whole body hurts so much no one sees that do they?
    The dry moujth is a killer then there are other symptoms no one knows about.
    Thanks for that.
    May god bless you and yours.
  15. dr32164

    dr32164 New Member

    I do belong to an online Sjogrens Support Group which is wonderful and I have learned so much from it. I know we are not allowed to post URLs, but if you do a web search for Sjogrens World, you will find it.

    The folks there are truly wonderful and dedicated to providing education and support. For those of you suffering from this DD, you may want to join. You can read the message board without joinging, but you do need to join in order to post any messages.

    Good luck to all of you.
    [This Message was Edited on 04/15/2007]
  16. IntuneJune

    IntuneJune New Member

    Trying to figure out if I found the support group you spoke of, does is appear with different pastel colors on the top of the page and a peachy color below that?

    Thanks June
  17. dr32164

    dr32164 New Member

    yes, that is the one. There are lots of wonderful people on that board.
  18. IntuneJune

    IntuneJune New Member

    Thanks! :)

  19. 139864

    139864 New Member

    Thank you all for your imput ,It's been quite funny , well as the sadness that comes with this disease shows we are still capable of maintaining a sense of humour .

    I can't speak for all of you ..but personally ..I think having a "KING Bill" to support us ,must be a wonderful asset ..I wouldn't know that feels like !!!

    intunejune ..In answer to your question ...what about in one hand holding a big purple parasol covered in big yellow spots ,while in the other a long dog leash with a skunk attached to the end of it :) :) :)

    ((( Hugs )))
    Brenda Uk

    [This Message was Edited on 04/16/2007]

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