Tiffany Wells: Today is World Sjögren’s Day!
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- čas přidán 5. 09. 2024
- Tiffany Wells, Sjögren’s patient, uses her voice to support everyone living this disease and help educate others that it is serious, systemic, and prevalent.
Listen to her story about being a loud and vocal advocate today and every day! If you are living with Sjögren’s, you are not alone. We encourage you to join with Tiffany and use your voice to share your story.
Sjögren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas. Today, as many as 4 million Americans are living with this disease.
Learn more: www.sjogrens.o...
It's so good to see/hear others speaking out about Sjogren's. Thank you!
Thank You . It needs to be talked about so much more, regarding this Horrible disease.
What a great strong voice you have. Also a gift of encouragement!
Thank you for lending your voice to educate the public.
Thank u so much for speaking on Sjögren’s it’s not talked about enough.I was diagnosed in November of last year and I have small fiber neuropathy also and it’s been a life changing experience I first noticed signs in 2019 .i feel like I can finally open up about it
Thank you.
You're right! You gotta fight these doctors cause at the VA we are all just a number! So you have to be your own advocate! I'm a disabled veteran & I've been fighting 10 years trying to figure out what the heck was wrong with me! In April, after being diagnosed with macular degeneration & glaucoma the eye doctor commented on how he'd never seen anyone with such dry eyes! I said I know right! I told him you'd think I'd been smoking weed all day & that my theme song these days is "COTTON EYED JOE"! He laughed, but that was it. I was diagnosed with fibromyalgia in 2009 so I'm in constant pain as it is, but the dry eyes & mouth had gotten a lot worse so I started GOOGLING dry & eyes mouth...THEM DOCTOR'S HATE GOOGLE TOO, LOL!
Anyway, every symptom checker I used said it sounds like SJÖGREN’S.
So I contact my primary care physician at VA & tell him that my pain doctor, whom I have to pay to go see for opiod meds because the VA REFUSES TO PRESCRIBE ANY EVEN THOUGH THE PEOPLE ABUSING THEM ARE THE ONES WHO GET THEM OFF THE STREETS & IF IT WASN'T OPIATES IT'D BE ANOTHER DRUG, thinks I might have it & wants me to get tested! Well he was agitated, like always because I speak up for myself, hell if I didn't I would literally be dead right now from a bowel obstruction last year that went on for 3 months, they wouldn't do surgery, I started throwing up my own feces, & finally cursed out the chief surgeon & went to a real hospital for the surgery! So I definitely know what you mean.
They sent me to the ENT, didn't tell me they were going to do a lip Biopsy either otherwise I would have eaten before I went cause I didn't eat for days afterwards. Doctor he'd get results in a few days & contact me, if I held my breath waiting for that call I'd be dead again! I kept going online & looking in my chart under lab results & nothing for over a month! I finally found it in my summary which should just be genrral stuff about your health. I called raising hell. Finally the sente to a rheumatologists last week & they tried to say my Biopsy results were only a 1 so they want my eye doctor to do a tear test, won't prescribed me anything, & literally had the nerve to tell me it doesn't usually cause joint pain just dryness!! The VA hires the ABSOLUTE WORST DOCTOR'S! So even though I have a diagnosis, I still can't get any treatment! All I do is cry because I'm so miserable! I feel like my pain is just from fibromyalgia because it's gotten unbearable in the last few years. So is pain common with Sjögren’s? Everything I read says yes & I wake up everyday just to sit in my recliner because I can't move & feel like I'm paralyzed!
I have both Sjogren’s and fibro with lots of chronic pain. Absolutely have to pace self. See The idea of the spoon theory