Author Topic: Anyone Here  (Read 1280 times)

Flip4it

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Anyone Here
« on: January 10, 2021, 01:44:26 AM »
Does anyone get on here anymore?
Flip
Stand your ground. Every patient deserves to be heard by their doctor.

Linda196

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Re: Anyone Here
« Reply #1 on: January 10, 2021, 07:19:30 AM »
You're original post was in a little used page used primarily for research and reference, I think if you use this link to sign in you will see more activity.
https://sjogrensworld.org/forums/index.php
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

Carolina

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Re: Anyone Here
« Reply #2 on: January 11, 2021, 07:49:19 AM »
Dear Flip4it:

I have been on this forum for going on 11 years.  I have checked this forum every day since.

I find that there are fewer people posting, and far fewer discussions that address, in-depth, the wide ranging variety of issues that involve  Sjogren's and other autoimmune/immune disorders than were here in the past.

I wonder if this might be because Sjogren's is better understood, diagnosed earlier, managed more effectively?

Or perhaps fewer people are seeking help through searches.  That is how I found this site.  Which saved my sanity, comforted me and gave me practical information I use every day.

I know that those who posted here in the past often stopped posting when they felt better and then returned when new problems arose. 

I, too, have wondered why there are so few posts, compared with years gone by.

Elaine (aka Carolina...chosen because I was moving to North Carolina, which is where I live now.)
Female-Elaine,79-CVID-pSJS-WMD (Eylea) C-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamx-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Om. 3-Naltrexone-Esomep.

Carebear

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Re: Anyone Here
« Reply #3 on: January 11, 2021, 09:58:37 AM »
Dear Flip,

I have been on this site for over a decade myself. And no, I do not feel well at all. But my Sjogren's however is considered stable by my doctors which is good for them, I suppose.

As for posting, I am experiencing so much more related to the covid-19 pandemic that for better or for worse, Sjogren's has taken a back seat.  A noisy back seat albeit.  But a back seat none the less.

That's not to say that I am not checking in often, like you, to keep in touch with my Sjogren's family. Looking for anything that feels "normal " is a welcome break from all the other stuff going on.

So how are you doing, Flip?

Good to hear from you, Elaine.
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Osteoarthritis, Osteopenia, Cervical Stenosis

Gabapentin, Methotrexate, Synthroid, Dexilant, Domperidone, Metronidazole, Pennsaid, folic acid.

Skylar

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Re: Anyone Here
« Reply #4 on: February 06, 2021, 11:20:29 AM »
I'm the moderator of another support board (unrelated to autoimmune disease) and over the years we lost members to Facebook .

The program we were using for that other support board is so old, no longer updated, and is being closed soon. We moved that board to Facebook and found many of our old members have rejoined us. This support board has been active for over 20 years and this is our 4th move as technology moves forward and some sites die off or change their focus and eliminate forums.

I do think there are still people in need of help with Sjogrens, but they are looking on other sites where they are active for other reasons. There definitely is a need for support.

For the record I do not like Facebook and wish we didn't have to relocate there. I hope this site remains active.

araminta

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Re: Anyone Here
« Reply #5 on: February 07, 2021, 03:09:53 AM »
Skylar, I completely agree with you about Facebook, I have no intention of ever going on there.   Sites like this one still have great value.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

meirish

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Re: Anyone Here
« Reply #6 on: February 07, 2021, 10:20:19 PM »
I hope that we don't get relegated to Facebook. I am too old to even be interested in Facebook and it seems like these social media sites are getting to be rough and tumble and not very private. Just what seems to be in the press lately. Never can tell when one of these big sites are going to shut down. meirish

eye2dry

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Re: Anyone Here
« Reply #7 on: February 13, 2021, 07:14:32 AM »
Hi there.

There is too much misery going on lately that has minimized my sjogrens symptoms or a desire to communicate with others.

Shelly
medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***

Gorn

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Re: Anyone Here
« Reply #8 on: February 26, 2021, 04:13:46 PM »
There is more daily activity on /r/sjogrens on Reddit.

However I find the quality of information on this forum is MUCH higher. I check in here every couple months or so.