Welcome! Please Introduce Yourself.
Welcome to our community! We’d love to learn a little about what has brought you here.
Recently diagnosed with Sjögren's. at the moment, under control. Unkown what triggered the massive flare back in Dec., but pancreas, gallbladder and lungs issues occured at the same time.
Welcome,
, we're glad you found us I'm glad to hear it is currently controlled. It is terrible when all of your systems seem to revolt at the same time. How are you feeling overall now? - Warmly, Donna (Team Member)
Any suggestions on a sore mouth even on salagen.
Hi ! I'm new here but glad to have a place . My hypergeusia loves very tart homemade lemonade ! I have some everyday , that in the morning and through the day I rely on Ricola drops , the only flavor that helps me is the Berry Medley. I keep a baggy with those and tube of Burt's Bees , watermelon flavor , quenches my lips , with me always . Maybe these can help . Took me a long time to find the right lip stuff, very soothing. , Welcome, we're glad you're here! Thank you so much for sharing some of your survival tips! - Warmly, Donna (Team Member)
Hi! Im Marci and I have Lupus (SLE) with Sjogrens as a secondary. I also have fibromyalgia, Chronic kidney disease, Raynauds, as well as a stent in my right ureter that has to be exchanged every 3 to 6 months and that is because I also have illiac aneurysm, one on each side. My goodness it's no wonder all the men in my life have left.
I have many autoimmune diseases also , it sucks , and having the stent makes it so much worse. I have 5 stents in my chest and 1 in my cranium and having sjogrens and/lupus is so not good , they can interfere with the stent , there is actually special stents that should be used. Sorry, I just tend/like to know about my diseases so I can try to help me. It can be so overwhelming, I've been in a flare for 12 days , my mouth is driving me crazy, and my eyes ,Iwant to scream. One day at a time though , we do get through.
The stent i have is in my right Ureter. It seemed to help with my CKD. I've gone from stage 4 to stage 3 CKD.
I know the fatigue is ridiculous. I use to walk 4 miles a day for 28 years now I can't walk 400 feet without getting winded. I try to do a few exercises best I can but I know exactly how you feel. I'm lucky I can feed my 2 dogs and 2 cats and to me that's an accomplishment. We just have to do the best we can and don't give up as frustrating as it gets.
I feel if I can do one thing that's a good day., the most difficult thing seems always to be extending grace to ourselves. Thank you for sharing this, it's an important reminder. - Warmly, Donna (Team Member)
