Author Topic: Hi everyone  (Read 7116 times)

TerriF

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Hi everyone
« on: May 18, 2009, 11:14:32 AM »
Just wanted to stop in and introduce myself. I am a 42 year old female, married with 2 kids, I was diagnosed with Sjogrens on Friday. I am trying to find out all I can about Sjogrens and have to say that I am more afraid now than on Friday. When I left the Dr's office I was not given any material to find out more about this and not sure about stages or the progression of this disease. When I asked the Dr. if there was anything I could do as "preventive" other than take the Plaquenil and follow up in the month w/the Rheumatologist and eye doctor and she said "no". Is this true? Am I just a ticking time bomb?

I hope to learn all I can and maybe someday I can help someone like me.

Take Care everyone and see you in the forums.


Linda196

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Re: Hi everyone
« Reply #1 on: May 18, 2009, 12:04:35 PM »
Hi Terri, welcome to Sjogren's World.

First...don't take everything you read on line (even here) too personally...not every person diagnosed with SjS has every complication and progression! Some never progress past dryness!

Second...Your doctor seems to be on the right track, prescribing Plaquenil and referring to a rheumy and opthomalogist, but you should know that, if things do progress, there are other treatments available (steroids, immunosuppressants and antirejection drugs are the most common next steps). You can also follow the lead of many people here who, acting on the advice of their rheumies, have started taking fish oil , flax oil or similar Omega 3 fatty acids, and have found some relief (always let your doctor know before starting any supplements or alternative treatments).

Third...browse the posts here, get to know us, and you'll find lots of people to share concerns, upsets, successes, and plain old life with!
Please check out our home page at http://www.sjogrensworld.org/index.html {{INCLUDES A LINK TO AMAZON SHOPPING!!}}
; and live chat at https://kiwiirc.com/client/irc.dal.net/#SjogrensWorld

Scottietottie

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Re: Hi everyone
« Reply #2 on: May 18, 2009, 12:10:49 PM »
Hi TerriF  :)

Welcome to Sjogren's world.  I'm surprised that you weren't given any literature to take away with you after the dx. That was a bit remiss of the doc!!

Right - SjS is a very individual disease. It's interminable but not terminal. It usually progresses very slowly and drugs like Plaquenil slow this slow progression down. As I say though - it's individual and a few unlucky people have it progress quickly - but that's not the norm.

Some people are really ill with it and others, like me, are uncomfortable but I've brought up a family of four and I'm still working - albeit part time.

Some people have CNS involvement but that is also unusual. Sometimes reading in here, it doesn't look as though it is unusual, but it just depends who is posting at the time. People come and go.

None of us know what's round the corner (including all those without SjS) so being informed is a good idea - but worrying about the future, is not.

Please feel free to ask questions, to join in discussions and to vent - if that's what you need to do. Most people go through a sort of grieving process after a diagnoses. This is normal. Eventually we all get to acceptance but in our own times. There is life after SjS - honest!!

Take care - Scottie  :)
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Never do tomorrow what you can put off till the day after tomorrow!

Rhonda

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Re: Hi everyone
« Reply #3 on: May 18, 2009, 03:19:56 PM »
Hi there.  I am new to this disease too- and it scares me too.  I just take it one day at a time and enjoy the good days- which frankly haven't been too many yet.  But, I am hoping they will come once I get everything lined out.

I find that I am so tired I can hardly think straight most days.  I am trying to continue working, but it is very hard.  I have a 1 hr commute each way.  By the time I get there I am exhausted - then I have to put in 8 hours and drive home an hour.  Talk about a boring evening- I am in bed pretty early each night!

Patze

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Re: Hi everyone
« Reply #4 on: May 18, 2009, 06:01:51 PM »
Hi TerriF,

Let me also welcome you to the SJS World!  Please do look around as there are tons of topics and oodles of great members too!

You've been given some good information already, and there's not much I can add. 

Please don't be bashful about asking any questions, as there is usually someone about that might be able to help.

Take care and again, welcome -

Patze
Our home page  http://www.sjogrensworld.org/index.html
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Sero Negative Queen

JJ

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Re: Hi everyone
« Reply #5 on: May 19, 2009, 05:19:32 AM »
Welcome, I'm JJ....just one little bit of info..stressing out on stuff that hasn't happened yet

or things you cant really do anything about will be your worse enemy. Just has a way of making

things worse. I found that not letting things get to me helps a lot. As everyone will tell you

we all have different degrees of issues as well as issues that some don't have. Just a good

idea to take it one day at a time, something comes up that you get concerned about write

it in a notebook...like what,when, and duration so you will have it and remember to tell your

Doctor when you get your next visit. Otherwise, don't let it take you down, stay positive, and

there are a whole bunch of us here to talk to. Guess that was more than a little bit.

JJ

TerriF

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Re: Hi everyone
« Reply #6 on: May 19, 2009, 11:22:02 AM »
I want to thank you all for your comments...I must admit it does help and I do feel better. I believe that I didn't ask enough questions of my Dr and just freaked out. After reading through the forums here I had more symptoms than I knew and more things make sense to me now. I have always been a stresser and it's something I have been trying to work on all my life, I have had Alopecia Areata since the age of 11 and stress always brought on the bald spots. I am making my list of questions for my appointment next month so that I can be better prepared than last time.

Thanks again everyone and cheers to better days  ;D

jonnell

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Re: Hi everyone
« Reply #7 on: May 21, 2009, 07:04:03 AM »
Terri,  Welcome to the site, my 4 year old Jenna has SJS and this site has been great.  Its like one big family.   Hugs and Kissess   Jonnell and Jenna

Pisces24

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Re: Hi everyone
« Reply #8 on: May 21, 2009, 04:27:01 PM »
I'm new too as was diagnosed 2 months ago. You never think of the questions to ask on your first appointment. I can understand your shock. Just understand that SJS is very individualized.  Some people have a mild case and other severe. You just don't know.  I am also concerned about the "progression" but drs can't tell you how much or how fast on that either.

For me the SJS was almost a relief believe it or not. I had 2 yrs (2003-2005) of a royal run around by specialists of whom a couple told me they were sure it was some kind of cancer but they couldn't find what kind and I didn't have the symptoms or was a sick as I should be. In 2006 finally an internal med specialist diagnosed me with indolent lymphoma.  ((( my only symptoms were odd blood work #s  which my gp didn't like )).  I was told I could stay the same for yrs or the *&#& could hit the fan in a month and I'd need chemo. Nice Huh?  I got waaay past the "stages of grief" you go through when you get a diagnosis.  Finally 2 months ago I finally saw a rheum dr and it was confirmed that I have Sjogrens. Hey that is a lot better than cancer!!!

I know it isn't easy but once you accept things in your mind, then you can proceed with asking the dr the right questions and getting on with your life while you are dealing with this. Remember that SJS is just a smalll part of who you are.

kimbo

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Re: Hi everyone
« Reply #9 on: May 23, 2009, 09:28:26 AM »
WOW, Pisces, Your experience sure would make any one glad to be a sjoggie.

Terri,   
Welcome , relax and enjoy this group of great people who share our unique journeys together. You will find lots of information, advise, encouragements and support.

What JJ shared about stress is so true. It is so easy to fall into a tunnel of despair when symptoms are flaring. Our minds become the worst enemy of our bodies at those times. Flares come and go, it is important to live well and confident when your not in a flare.

It is important when you are in a flare to take it easy relax, treat your sjoggie body well. Try not to stress and get down mentally with negative feelings. Fill up with positive thinking. Don't shut down in negativity just because your body is down.

It is very good to be informed. But many of the symptoms others have , you may never have. We all have varying degrees of different symptoms at different intervals.

It is a process of acceptance that we all go thru when DX with an autoimmune decease, such as SJS.

 :) Take your shoes off kick back, make your self at home here, search with the search button all your question or just ask......  We are here for you.  :)

Hugs and blessings kimbo 
Diagnosed March of 2007. SJS/ RA Positive at 80  International-SSA strongly positive at 811-SSB 273
ANA positive at 1:1280
Hashimoto's
Gabapentin, propanol, Celebrex, Synthroid, Cytomel, vitamin D, B complex, Omega 3 complex, and multi vitamins; At 62, I seem to be a low maintenance sjog

lynnmarie219

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Re: Hi everyone
« Reply #10 on: May 25, 2009, 12:57:02 PM »
Hi Terri,


I just want to add my hello and you to Sjogrens World!

Read all you can/want to here and ask any questions you may have....other than learning as much as you can about sjogrens the most important thing you can do right now is try to take your time in the acceptance part of it.....it will come!

Welcome to the family!

Poochie

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Re: Hi everyone
« Reply #11 on: May 30, 2009, 09:08:34 PM »
Hi Terri, you have received some great info from the others, so I'll just say Hi! and welcome to the family.

Pooh