Any members still here from 10 years ago onward?

[kimberly64]

Hi are there any members still here from 2013 onward  still here?  Like to know how you are doing and what's still working for you. Please chime in. Sharon? Ohiolady ?
Irish? Quietdynamics ? CCcourt?  jasper ? Sooki?
Or others ?

[Scottietottie]

Hi Kimberly 

I'm still here. Irish is now Meirish - so is still here as well. Everything a lot quieter than it used to be. I think there is more out there online now.

Take care - Scottie 

[kimberly64]

Yes Scottie it seems this group is not active much anymore ... very sad as there was a lot of useful advise I was trying to follow up on.

[confused]

Hi I am still here.  Think I started about 2008 or 2009.
I had wondered about Ohio lady and some others that used to be here.
Was so nice when there were so many on line that you could really get an idea on many things.
I hope you get lots of responses.
Confused

[Liz D.]

Still here.  I've been here since 2004.  Although I don't post often anymore, I do check everyday and often use the search bar when I'm having issues and can always get my answers from past posts.  This site was a godsend when I first got diagnosed and helped me so much through those frightening early stages.  And it still has a wealth of information.

Liz D.

[meirish]

Hi, I am Irish and I'm now known as "meirish" due to unforeseen circumstances. I have been around here since 2006 or so though not as often as I was before.

I have not been on here for at least 6 weeks. I had a GI bleed due to my AVMs on 18th of July and was hospitalized and had blood...only one unit at that time because the iron infusions were started the day I was discharged. Then I sprained my left foot about the same time and messed with that before I finally realized maybe I had broken a bone...which x-ray proved positive. The long bone on outside of foot down above the little toe. I will see podiatrist next week to see what the outcome of this is!!!

Then the end of July a one bedroom apartment became available and I was next on the list....so I packed up and moved many boxes with my walker. This was on the 3rd of August. My son came and told me we were moving the rest of my things the evening of the 4th of August. I moved down one floor and from studio to one bedroom. I have been totally exhausted and had a 9.5 hemoglobin around the time I moved. I am starting to feel like I will live now.

I enjoy my totally unsettled apartment but have 4 dr.'s appointments in 3 different towns on 4 different days next week. The next week I have 3 appointments in 2 towns on 3 days. The one day is a swallow the pill video cam of GI tract with a monitor for 12 hours.  I go home with this and have to get up the next day and take the monitor back to the doctor in another town. Then I will crash.

A colonoscopy is supposed to come next with probable laser to AVMs. This moving to another area and finding new doctors has been extremely difficult. When I get all of them seen I hope to be able to cut down on doctor visits and not have to be so proactive....except for the AVMS.

So, here I am back again. I had an interesting time getting back on this site. My computer was not cooperative. I really hate having to get a new computer and I also hate getting a new phone. Both of these items were new purchases this year and amounted to stress!!!

Have a good weekend all and please try to stay cool on these hot days to come. Also, much sadness for the hurricane and tornado victims over the country. May you have good luck in your endeavors to get settled again. Many prayers being sent up for you by me and many others.  meirish

[Carolina]

Hi Kimberly,

I joined here in 2010 when my profound peripheral neuropathy was diagnosed. No cause could be identified after extensive testing.   

I had been diagnosed with Sjogren's in 2002 and I remembered there could be neurological problems associated with Sjogren's, so I looked for a patient forum, and found Sjogren's World.

The people here are amazing.  The complications of Sjogren's are rather rare, but I found understanding, information, and support here.  Generally those with straightforward Sjogren's don't stick around for years because they get what they need and move on.

I think in some ways the reason that the forum seems to have fewer active members is that the medical community it more aware of Sjogren's and the diagnosis is made much sooner.  So the desperation that drives us to seek out information on the internet may be less.

I do remember when so much was going on here I had to check in several times a day!

Elaine (aka Carolina)

[Nomad]

Oh my. I believe I started here in 2012. That's a long time ago. But I was diagnosed about 15 years ago. Had hardly any symptoms at first. It slowly worsened last 2-3 years have been noticeably more difficult.

I particularly recall Elaine/Carolina who helped me a lot with many questions.

I'm very appreciative of her and everyone.

[bluegardenia]

hi i am still here after ten years.things are slowly going worse, less saliva and tears, still no medications, just omega, drops and biotene dry mouth gel. I have a good doctor specialized in Sjogren, she says that there are plenty of people with it. unfortunately not much has changed in cures.

[deeindiana]

Hi! I joined in 2010, I think.  Man...time goes fast. I'm hanging in there. I just had a full blood work up and my rheummy was pleased.  I still suffer with flares. But I'm not as scared now when they hit. 
Everyone here has been a wonderful support over the years and I'm very grateful to the administrators who keep it all rolling!
Dee

[Carebear]

I've been here since 2010. I'm chugging along nicely. Luckily I have been pretty stable, more or less. Sjogren's version of stable!

I think many of us joined around that time. This has always been a safe place to vent or to ask questions.

When covid hit I really slowed down with checking the site. Probably because we had so many other things that needed our attention.

[MirkeshCat]

Me, I think 🤔 Been here since 2013.

[Kathy57]

Hello,

I don't remember when I first joined.  Brain fog?  It feels like forever but I'm pretty sure it hasn't been 10 years. 

I've had periods where I've felt like I'm coping better with this illness, but right now I'm going through a really rough flare.  I've been checking this site on and off, but I'm guilty of not being on this site as regularly as when I was first diagnosed.

I can't say enough about the good info here.  I can type in a subject and get previous communications on the topic.  So if people can't answer me now, I have access to previous "conversations". 

I feel like I recognize so many names here.  Old friends that I have never actually met, but feel that I know. 

I thank all of you for being here and helping me and everyone else who comes here for advice and information.

Kathy

[sixty]

I think I've been here for more than 10 years.  I used to be called "puppybreath", but I lost the connection to the site somehow and when I got back on I changed my name to Sixty, because at the time I couldn't remember I was puppybreath.  Crazy.  I don't see a rhuemy anymore cos I've had such bad luck with them and I've given up. I have a bad heart and kidneys along with the sjogrens so I've also had to prioritize my energies to the cardiologist.
Good luck to you!

[Duchess]

I think I've been here since 2012 or 2013.