Author Topic: 3 weeks ago...  (Read 3457 times)

Ntysin

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3 weeks ago...
« on: March 21, 2010, 07:40:03 PM »
Approximately 3 weeks ago I was diagnosed with Sjogrens.  Of course I had never heard of this syndrome before.  I don't know how to feel, I don't know what to expect, I just don't know.  Confused and dazed would probably best described me at this moment.  I am probably in denial because I am not convinced that I have Sjogrens but I am coping with the diagnosis.  Sigh.... ???

Ohiocat

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Re: 3 weeks ago...
« Reply #1 on: March 22, 2010, 02:34:33 AM »
Confused and dazed sounds just about right, for just having found out you have Sjogrens.

If you add in scared, that would fit my first reactions too.  It's going to take you some time to figure this thing out and learn how to adjust to what it means.  Just be patient with yourself and don't panic when you read about all the things that Syogrens can do to you.

This disease tends to be a very individual disease.  You need to take each day as it comes, and not worry about the problems that you currently don't have with this illness.

Hang in there.
female 50+, no thyroid - levthyroxin 125mcg; Primary Sjogrens:  Dry mouth; Dry eyes-thera tears, Restasis twice daily;

Patze

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Re: 3 weeks ago...
« Reply #2 on: March 22, 2010, 04:04:21 AM »
Hi Ntysin,

Let me welcome you to the SJS World and family!  Please do look around the board as it has a ton of topics that you just find useful and informative.  If you can't find what you are looking for, just post it as there is usually someone about that just might be able to help.

I know what you mean about being scared, don't be, I know, easier said than done.  If you don't mind my asking, what symptoms are you experiencing?

It was a pleasure chatting with you last night too!

Again, welcome, and take care of yourself now -

Patze
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lynnmarie219

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Re: 3 weeks ago...
« Reply #3 on: March 22, 2010, 04:48:58 AM »
Hi Ntysin and Welcome to Sjogrens World!

Not knowing how to feel is completely normal...it takes time to digest it all, learn all kinds of new information, and learn how your body is reacting.....please don't try to rush it...just allow yourself the time you need!

And remember that we all take a different path....some people have very mild symptoms...others more severe and many fall somewhere in between...there is no way to tell what path you will take or when symtpoms will change from day to day.

In the meantime....read all you can here and ask any questions that come up....this is a safe and friendly place to be yourself!
 

Scottietottie

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Re: 3 weeks ago...
« Reply #4 on: March 22, 2010, 09:42:59 AM »
Hi Ntysin  :)

Welcome to Sjogren's world. I remember only too well being told I had Sjogren's. I remember the disbelief - a bit of panic - and that dazed feeling. You almost go through a grieving process. Disbelief/numbness, bargaining, anger, depression and acceptance. Sometimes you get a bit along th way and then go backwards again!  There is, however, life after Sjogren's.

As Lynnmarie says it's a very individual disease. Some people will spend their whole lives with mild symptoms. It's unpredictable and ther is no point worring about what may happen - because it may not.

Getting the dx is the first step to managing the disease. You may find you collect quite a lot of 'ologists' to help with this. The first two are usually a rheumatologist and an opthamologist.

Hope you find the site useful.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

beverley

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Re: 3 weeks ago...
« Reply #5 on: March 22, 2010, 12:34:07 PM »
Welcome on board Ntysin,

I remember feeling very scared at first, and then slowly over a period of months I found that life didn't fall apart and that changes were manageable quite quickly.  Yes it can deteriorate, but it doesn't necessarily do that quickly.  Everyone has said how individual this disease is ... and they are right.  Once your medication is right, you may find that life continues pretty well normally for years.  There are no guarantees, but it varies so much, it is no good fearing the worst before it happens.

Hope that things settle for you both physically and emotionally and that you can get back to living your life as before.

Beverley

Bucky

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Re: 3 weeks ago...
« Reply #6 on: March 22, 2010, 02:16:59 PM »
Hi Ntysin - I see you found your way to the forum.   ;D  Welcome!!

It was nice talking with you in chat last night.

Yep, we talked about Sjogren's being so "individual" last night - every one is different.  For myself, I had a Rheumy app't today (every six months) - now, he only wants to see me yearly (unless something comes up, and I need to call his office).  The Plaquenil I take is enough for me - some people need more meds.

Even though you aren't affected by "dryness" issues right now, just keep in the back of your mind that you need to keep regular appointments with your dentist and eye doctor for dryness issues.  You mentioned last night that you have other eye issues - do you see an Ophthalmologist?  They would be the ones to keep a close watch on your eyes with Sjogren's.

For a long time (years) I always thought I had allergy eyes - they would act up in the spring as the trees were budding, flowers blooming, grass being mowed, etc.  I now wonder if it was really part of the Sjogren's back then??  One never knows.  I DO know that putting in the preservative free drops does make my eyes feel a whole better.  Do you use any drops for your eyes?

There are a lot of books about Sjogren's if you are interested.  There are some listed under the Books/Reviews listed at the top of this page.  I have a little library going for myself.   ;D

I hope you find this site helpful to you.  You can put in a specific topic in the "search" box at the top left and it will take you to previous posts (threads) about that topic.  If you can't find what you're looking for, just ask.   ;D

Again, welcome.

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!)

Ntysin

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Re: 3 weeks ago...
« Reply #7 on: March 22, 2010, 03:15:05 PM »
Hi everyone and thanks for the warm welcome  :)  I guess like anything else you have to roll with the punches.  I have read so much already and still feel like I am clueless.  I am learning a lot reading the information and message post here.  Some of what I am reading is scary and I am pacing myself not to mentally have every symptom I read... :o  Its just so overwhelming right now...

My symptoms are few and minuscule.  No noticeable dryness at all...my diagnosis came from an attempted Wednesday morning trip to the bathroom with a realization of not being able to walk.  That coupled with severe pain in both knees then both ankles then both knees again back to both ankles (barely bearable).  My doctor performed xrays and blood work finding that my ANA was positive he referred me to a rheumatologist.  After more test I was diagnosed with Sjogrens.

I am visually challenged already (no dry eye) but just severe nearsightedness.  I am not using any drops or dry eye meds.  

I am currently taking Diclofenac (NSAID) it controls the pain, yes some stiffness is still very apparent (no longer moving like a spring chicken) :D

Living and learning!!  
« Last Edit: March 22, 2010, 03:24:13 PM by Ntysin »

Scottietottie

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Re: 3 weeks ago...
« Reply #8 on: March 22, 2010, 05:46:53 PM »
Hi again  :)

Sjogren's is a disease that 'flares'. (Again - not for everyone) It is quite possible that you have had a flare and that when it subsides things will feel a lot better again.

Take care - Scottie  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!