After a few weeks of suspecting SS, I got the official word today.
In a sense it was a relief to finally have confirmed what I had long been dreading.
At least now I can start to deal with it.
I was pleased to find this forum, but there seems to be so little good news out there.
There are scores of topics where members lament their misery and precious few where someone reports a good day.
Does any one ever have one? Does it ever get any better or more bearable?
Is there any one out there who is managing to live a somewhat normal life?
Is there any good news out there?
It is possible to feel better. I was very sick in the beginning and my dryness and fatigue were unbearable. But, I manage much better and have good days. I take Evoxac for my dry mouth and Restasis for my eyes and Prilosec for GERD. Compared to a lot of the ladies, I'm not on a lot of medication. I have found that rest is the best thing I can do for myself and trying not to stress too much. Don't give up hope that things can get better.
Anna
Hi Howdryiam, and welcome to Sjogren's World.
We do have good days, we share the joys and successes of our lives, but when we feel good, it's just too easy to carry on with life and forget to post here! If you look through some older posts, you'll see people sharing days of feeling well, days of overcoming pain or dryness, the joys of new babies, engagements, satisfaction with doctors, jobs, even adventurous posts telling of vacations, celebrations and remission!
Every so often someone just can't wait to share something positive, happy and encouraging, and it makes all of us feel better to read it!
We learn to take our good days as gifts, not for granted, but somehow that makes them even more enjoyable and worthy of a "good news" post.
You're right, the "down" posts seem to outnumber the "ups", but hopefully your question will spark a renewed interest in sharing the good times! I guess that's the nature of a board aimed at support and information, it does attract questions and complaints.
Also, things are a matter of comparison. This is a Sjogrens board so we're on here complaining and talking to each other. It's an outlet and saves family members from burn-out. Let me say this though, Sjogrens compared to a cancer diagnosis is nothing. Sjogrens won't kill you. Cancer can. I had both diagnosis within 6 months of each other. The Sjogrens has made me feel much worse, but I don't worry that it could take my life.
My niece has MS and is confined to a wheelchair and she is in her 40's. This all depends on how you view it--some days are bad and others not so. Usually you can do most of what you have been doing with the help of some meds, drops etc.
Lucy
I am sure that there is plenty of good news around. I found this site because of my wanting to find people with an understanding of what I am going through. Reading through the posts I find much to smile about and I even laugh out loud at some of the antics that are reported. Roxanne
Hi howdryiam :)
Welcome to Sjogren's world. I know how a diagnoses can be a relief - but it still takes a bit of getting used to. Most people go through a period of mourning after they've been dxd. They go through all the stages of grief but do end up at acceptance!! A lot of people using the boards haven't had a definitive dx - so they can't even start that process. Others have a lot going on as wll as SjS.
SjS is incredibly individual and can range from mildly uncomfortable to totally debilitating, with all the stages inbetween. It's described as slowly progressive but with some people it progresses hardly at all and others have a different experience.
There is definitely life after SjS!! I must have had it for about 27 years now but only got a dx five years ago. I've brought up 4 kids, run a puppet theatre, been a face painter, gone back to college and now work part time at a community centre coping with kids who've been excluded from school. I'm lucky that I don't have to work full time but I'd really miss my part time job. It keeps my mind off 'me' and on other things and some days are great. I spent most of the spring break asleep and feel the better for it. I was dreading going back to work but this week's been OK. I don't relish retirement. I get bored easily. I do come in here and moan though!!
Hopefully, now you've got a dx you'll get appropriate treatment and feel a bit better.
Take care - Scottie :)
Howdryiam,
I agree with Eyeamdry, cancer is more painful and a lot more inconvenient, I would rather be dry and achy, then not have my bladder, carrying around a pee bag is not my idea of fun, but that doesn't mean we don't need to vent about our SS, just don't let it consume your life.
Hi howdryiam,
Remember that everyone is different with their symptoms, progression, etc. There are so many people that are out there that have Sjogren's that do not post on a community forum. I would probably think that a lot of those people may have mild enough symptoms that they don't feel the need to chat about their disease. You will see a broad spectrum from the mildest symptoms to the worst ever. Don't assume that you will be in the worse.
Personally, my SJS symptoms are really not that bad, I have rashes and stuff related to other autoimmune things that are much worse if I do a comparison. I do like coming here and reading about how other people deal with the meds that I deal with, any symptoms that are new to me that I would like to see how others cope, etc. Most people that are on the forums online are usually the more extreme cases or the ones that are in diagnosis limbo.
Once you are here though, you will find a great comradery and feel that you are not alone. This is one of the best forums I have ever been a part of!
Only good news I have is my oldest son move0d back home,I just seem to go further downhill,,I am having trouble swallowing I was outside today and its about 70,, I cannot tolerate any sun,, it is like a torch, my brain fog is beyond what anyone can imagine, I have come to te realization that my autonomic nervous system is involved in this dan thing, this dissease may not kill me, but its close to it,, sometimes I wonder if I even have SS,, andnot somthi9ng else,, lord know they have run every test,
The good news I can count on from here is that someone else has one of my off the wall symptoms and understands perfectly what I am talking about.I don't even get that from Drs.I get lots of helpful ideas on what OTC or prescription meds work for what and even told to go see the Dr. it's not a usual symptom I'm having.All these are the best news when you have AI issues.When "you don't look sick"it can be very isolating so coming here can be a godsend.I appreciate my good days so much that I'm off doing things but there is always so much to learn on here that I check in regularly so it's not all bad.
Ruby
Hi HowqdryamI
Welcome to our famiy. I live in the Uk and have spent the past 5 days visiting Rome with my mum. We have had an amazing time. To make it possible, I had to store up as much energy as I could, and no doubt I will have to rest this weekend before I go back to work on Monday, but I CAN STILL DO NORMAL THINGS, and so an most people with SJS.
I'm 52 and have been diagnosed only 2 years, but probably had symptoms around 20-30 years. In that time I have reared three children and been a mature student, and worked in a fairly demadning job. It's not been easy, but life isn't, but if you make adjustments, I'm sure you will get used to the diagnosis and find that life can still be good.
Looking forward to getting to know you.
Kathyx
Hi Kathy, Nice to have you back. Sounds like you had a great time in Rome (how I wish!)
Just been catching up on the threads and saw your thread about your bowel condition, sorry you have developed this prolapse, hope you get the op soon and that it will help to ease your awful condition.. Wish you well, Dolly x
Dear Howdryiam,
It's a beautiful day where I live! I slept better last night than I've done in weeks! My body aches are not so bad (because I slept, probably ;).) I'm retiring in 4 weeks from my full-time teaching job. My children and grandchildren are all healthy and doing well otherwise. I'm looking forward to working in my yard and keeping up the house better after retiring. I'm not boasting; I just want you to know that there is normal life and happiness for us. You may have to pace yourself, and every day won't be good, but don't give up on life. Life is good.
Hugs,
Cheryl
Hi Dolly
Thanks for your good wishes. The Rome trip had been planned (and saved for\0 for a long time, so we really appreciated it.
Kathyx
Hi howdryIam,
Let me also welcome you to the SJS World!
I see that you've been given some good advice and there's not much that I can add.
Please come often and I hope to be chatting with you soon.
Take care -
Patze
Hi howdryIam ,
Here is my good news.
The face of Sjogren's fighting and winning:
http://i531.photobucket.com/albums/dd355/klfowler7/img_8642a-Copy-Copy-1.jpg
My husband going a long for the ride.
I was DX in march of 07. We all have our good days and we all have our bad days. I think it is important that we don't let the bad days cause us to forget the good days.
On the really bad days I require the support of my pals here in our sjoggy world. I am sooooooo Thankful for this board and the power we have in our unity of support.
blessing kimbo
Kimbo!
You and hubby are a couple of the coolest hottie's I know!! You look like a bold daring girl on that bad machine!
Pea green with envy!
Janna
Hi there, I only have Sjs mildly compared with many here and have other symptoms that do the rounds from time to time... I think I'm very fortunate because of this. I'm also sero-negative which is good and bad :-\ Originally I came to this forum with terrible depression (when the dryness hit). I was unable to take antidepressant medication, (allergic to SSRI's and SNRI's and the tricyclics were too drying) and with the support from Forum members and joining a local Autoimmune Group, I worked my way though it.
I haven't any muscle or joint issues at present so am lucky to get out and walk for an hour every day.
Long may the good times last :)
Lesley (New Zealand)
I also have some significant bone density issues, and when I found out I had SS as well, I was not very encouraged.
But here's some good news. I found it in a Bible verse that I've been meaning to share here. I'm definitely claiming this verse:
"And the LORD shall guide thee continually, and satisfy thy soul in drought, and make fat thy bones: and thou shalt be like a watered garden, and like a spring of water, whose waters fail not." Isaiah 58:11.
Yes indeed! A watered garden!
M
Hi Kimbo,
Go girl, GO!!! Wahoo! Got to love your free spirit!
Patze