I used to be

able to have a conversation with others without feeling like I should take notes to remember the topic...

able to read and have some idea of what it was that I read...

able to go to work and meet the challenges...

able to wear beautiful shoes..

able to travel, or enjoy just going for a ride without severe pain...

medicine free..

Here's a good start, tell me what you 'used to be'!






I use to be......

active, walking, running and working out....

spontaneous, flexible and ready for anything.....

the life of the party (even without alcohol)......

pain free

Better disciplined (I used to be able to stay on a diet! What happened? LOL)



able to do housework without having to sit down every 10 mins.


strong, fit, able to play tennis-table tennis-golf, work a 14 hour day, do manual work on my farm and nursery, ride a bike, drink alcohol, eat spicy food eat chocolate, think at speeds above snail, lecture all day without using any notes, do woodturning paint watercolors etc…
all only 18 months ago! GONE
boring waste of time now just pkay with computers.

Sadly, I can relate to ALL of your responses!

I thought you might :slight_smile:
despite what the medics and books say SS seems to have remarkably similar effects on all of us.
The 3 people I know with it (all women- It’s very lonely being a male with Ss) have very similar issues to me.



the helper not the helped


smart and quick thinking


Thanks for starting the conversation, SK!

I used to be:

able to go to a group meditation and spend hours in silence without digestive noises

enjoy the best pizza and eat whatever I wanted

go to the dentist and be told "no cavities"

able to sit on a bench without my hip bones touching the surface

able to wear clothing that wasn't baggy on me everywhere

able to go out to dinner with friends

All of yours, for sure! Plus---

able to clean my house without yearning for naptime

care what I ate, when I ate (now nothing tastes good so why bother?)

able to walk my dog

have the energy to have friends

Not schedule my life around medical appointments

But I know I have a husband who supports me and moments of joy when my 2 year old grandson comes to play with


I totally agree with everyone but I can't go there for any length of time. It just brings me down! I am adjusting to the new me and giving myself thumbs up each day when I drag myself to work or watch my grandkids!!

Hi Nana x 10!

I know, it's a tough adjustment to make to the 'new you'. I know not all topics are as uplifting as I would like, but the venting session is good for the soul too, and part of the mourning process! Hope that you can continue to drag yourself out each morning, I commend you for still being able to keep up with work and grand kids! I know that your grand kids are very lucky to have you!


As always you are so positive and life affirming for all of us. Your advice was well stated and I will find sometime soon to complete my "mourning".

I hope everyone has a healthy, safe and fun filled Independence Day!

I agree it is not good to dwell to long on our lists, but I must say it helps me feel less guilty when I can see that it is Sjogrens, and that I am not just lazy. Seeing all of our similar lists helps me understand it isn't just me. It is the disease.

This discussion helped me, too. I don't feel so alone anymore with it all.

able to walk in all seasons without water

able to talk without water

able to talk loudly enough to be included in a small group discussion

able to shop...........water

able to take trip a without gallons of........

I cannot drink anything but water

Thank God for water!

Thanks for bringing up the topic…its a nice to way to remember what we accomplished and what we were proud of, even if part of the process is waving goodbye to it. So necessary if we are to not get lost in the disease and to recognize where we are now so we can make the most of it.

I have to say I related to a good lot of these.


able to read -- and hold a "real' book...and could tell you a week later what I'd read.

Able to hold regular cutlery -- even able to hold plasticware.

able to run several miles...

And YES....when I leave the house I have to bring a bag of water bottles...And still buy new ones when I'm out because I didn't bring enough.

I know a lot of my list has to do more with RA and PsA than Sj ...but it's so hard to know which is coming from what disease.

All i know is it's NOT FUN have AID....it just plain sucks.

Able to roller blade and enjoy it.
Able to think, write, speak and recall easily

Able to draw, paint and knit with ease

I used to have beautiful hands...not ones I need to hide.

used to leave a dentist office for my check up and not have any cavities. (Yesterday I found out I have four of them...and I brush twice a day and rinse with a fluoride rinse)

i used to be able to clean my house...now i cannot even wash the dishes.

I used to be able to say "yes" when invited to a party.

Man, this one hit me like a ton of bricks. I had to go have a good, ugly cry before I could formulate a response. Tomorrow is my husband's and my 32nd anniversary. Two years ago we were in Washington DC, walking for miles everyday in 106° heat (the avg. temp that week was 103°) and stopping only to eat and decide what to do next. Two months after that I was being life flighted from my car crash, but was on the road to recovery and looking forward to working again. A year later Sjogrens was diagnosed and it's been downhill from there. I used to be: Unstoppable. I did interior design and could spend 12 hours hanging wallpaper on 16' high walls, paint until I couldn't see straight, crawl around on someone's floor taking measurements for two hours and then draw it all out without realizing it was midnight. I walked up and down three flights of stairs (24 to upstairs, 13 to the lower level) several times a day as well as rearrange furniture at the store I worked at, come home, fix dinner and go for a walk or bike ride with my little Lydia, listening to her glorious chatter the whole time. People used to say they wished they had my energy and strength. I knew every single piece of inventory and fabric in that 12,000 sq. ft. store right down to a 3x4 silver picture frame. And now? I can go to the basement with a full basket of laundry, load the washer and get back up the stairs only to sit on the top step for a few minutes to gather the strength to get to the living room. Then I forget that I did a load and leave it in the washer for two days. I also suffer severely from CRS. (Can't Remember Shit.)

I have been in a bad spell the last 2 or 3 weeks and feel just sort of listless. I read back what I've written and as usual I've rambled on but I think this was a subject I've avoided and I needed to get this out. (I admire those of you that give such concise answers in so few words...aww hell...I'm just plain jealous!!!)

Thank you everyone for all you've given me...your ears, your shoulders, understanding and patience when I get in my maudlin mode!