Ughhh.....

[kcoffiner]

I am a whiner. I recognize that. But yesterday my mom came home after speaking to a NP at her work. The NP told her that Sjogrens is no biggie. That most people live totally normal lives with it without having to worry about it. I don't know about you but that is not the disease I have. I absolutely hate it when people think that Sjogrens is no biggee. Poople who are totally fine don't have to wear goggles outside. I am just absolutely dumbfounded by people's ignorance.

Kim

[Scottietottie]

Hi Kim 

I'm with you!  It's the number of ignorant doctors I've met that annoy me the most.  Now I don't mind the ones who are honest - who say things like "well you probably know more about this than I do" - them I can live with. It's consultants who belittle the whole thing. They're the ones that get my goat!

So saying - I'd never heard of Sjogren's before I got diagnosed with it and the initial literature I was given by the rheumy also suggested it was but a minor inconvenience. NOT!!!!!!!

Take care - Scottie 

[Pooh]

AAAuuuggghhh!!!!!  A POX, a POX on those ignorant people and doctors.  May they all develop Sjogren's and live unhappily ever after. 

If it were only possible to exchange them with Sjogren sufferers for just one day.  Then I would like to hear what they have to say. 

Pooh

[kimbo]

This is IRONIC, because I have so been thinking about how much it would help sjoggies if DR.s or influencial people would get SJS. It would so help our cause.

kimbo

[irish]

I am a nurse and you tell your Mom to tell the NP that Sjogrens IS a biggie and the sooner the medical profession figures this out the better off the patients will be.

Print out information that will tell your mom about all the things that can happen and all the systems that it can affect. Just let your Mom spend one day with this and she will change her tune. Also tell her about how the sjogrens affects the secretions in the liver, stomach, intestines, pancreas and kidneys. Also, the skin and the central nervous system causing neuropathy and other great issues like deafness, balance problems, etc. The list goes on and on. Oh, and the fatigue that is from you know where!!!!

I can't believe that in the day of mass information that this disease continues to be considered to be a nuisance. Doesn't anybody "google" it---family or friends I mean. Irish

[salsen]

Irish isn't it ironic that all that you list ( which we all seem to experience in some fashion ) only happens in rare cases.  At least that's what all those little brochures that are handed out state.  I had at least four more symptoms other than dry eyes and mouth when I first went to the doctor ten years ago. 

Little did I know how lucky I got to be one of those rare cases!

[pudmott]

Ignorant people should be banned from society. Honestly our lives would be so much easier without them. I've never known this disease to be a minor inconvenience on my life. It has been nothing short of a major life change


Pud

[beverley]

The trouble is Kim,
If you look at our symptoms one my one they probably aren't earth shattering, but you add them all together and they become like a huge mountain that you have climb repeatedly.  Every time you get knocked to the bottom you have to find the resilience mentally, emotionally and physically to start climbing again.  It is the relentlessness of this disease that is so disabling, the fact that even when you have 'good' health for a period of time, you are always aware that a boulder might roll down and knock you to the floor again.  You have to be a special breed to be a Sjoggie - we're the chosen people LOL.
Hope you're back on the ropes and climbing!
Beverley

[wen.uk]

Oh come on all of you - don't you know that people with SjS in the main continue to live normal lives, with very little effect on them apart from minor irritations like the odd dry eye or mouth, with their day to day life largely unaffected. HA HA HA HA

I actually read this on a site explaining what SjS was and could have cheerfully put my hand through the screen and dragged the author back through cyberspace and into our world for a few days!!!  GGGRRRRR.