The part that drives me nuts is having to explain myself over and over again. "I'M NOT FEELING WELL. I AM SICK!" I tell people. They just don't get it. "Well you don't look sick." My family has been gaslighting me for over 30 years.
I understand if I say I’m Not feeling well maybe next time I know they talk about me and the roll Of eyes behind my back . I wish there was a cure , but I’m Not finding it .
It because there not much the doctors can do.... alot of doctors see that you have this & it really doesn't benefit them to treat you they don't make much off you you$$$$$$$$$$$$$$$$$$$ when they test or do byopsis & give pills & expensive medicine that don't do anything...but give you more problems like more pain Diarria... then ur left worse.... sorry to disappoint or b negative but it's the truth... raw truth doctors want to make money off you if you keep letting them that's were they will have you, like there PET!🤣 $$$$$$$$$$$$$$$$$$$$$$$$$we pay there house payments & cars!🤣 & the more medicine they prescribe the doctors are happy! & your left with more issues that they cause ...to keep u coming back😂
I could have accomplished so much more in my youth if I had been diagnosed correctly. My Ana was always high but never was diagnosed til later when my sister was diagnosed with sjogrens. I feel so much better with the right treatment now.
The host is wonderful. She kept trying to reel in the guest. The guest rambled on and on about menstrual problems, teaching art, etc. I came here to learn more about Sjogrens. And BTW, they did have the ANA ( Anti Nuclear Antibody) test in 1980.
I was told for two years to see a mental doctor that I was fine after two years I went back to see the do tor finally he se t me to see a RA doctor which said I had fibromialga sjogens lupus..
The hardest thing is friends and family thinking you’re just making it up. For the last 10 years it was always something with me. Not fun for me. Migraines. Dizzy, fatigue, bladder IC, weight gain and weight loss, sometimes I hurt from the air pressure as someone is just passing me in a store, now I have no slobber my esophagus is sloughing off , I’m coughing up tissue, RA now ,and I had a girlfriend say to me what are you dying from now. I have a small circle of friends it just got smaller. Finally I have a new PCP that looked at me and said you have Sjogren disease. I just cried like a baby. I see the RA doctor the end of July . PCP put me on hydroxyclorquine I hope it helps. I’m now 1 month on it.
I had Glandular fever (mononuclosis) at 21 and and a viral infection in my late 40's that behaved like meningitis I. noticed a big difference in my 2 pregnancies. Second one at 34 was like I had low thyroid, less amniotic fluid at the end, shingles on my tummy. Stomach problems throughout my adult years but i felt like a malingerer all my younger adult years. I had an infected parotid gland at about 49 and soon after lost 2 molars after unsuccessful root canal attempts. Also it should be mentioned that 90% of sufferers are women and it gets much worse after menopause. It seemed to be menopause that really stepped up the symptoms and I started to get Raynauds in my hands. Stabbing pains in my eyes. The Raynauds and a strange condition of nodules that showed on my knuckles that actually drained joint fluid was what finally made me "demand' a referral from a random GP to a Rheumatologist. The GP was reluctant to give me the referral or a steroid puffer for my struggling lungs after the swine flu outbreak in Australia. (I haven't stuck with one GP as they seem to retire or not take me seriously) The Rheumy asked if I had dry eyes and did the blood tests which had a very high ANA result. Many years now struggling with the dry mouth and dry eyes. I have tried every drop and gel available. The usual medications, pilocarpine, hydroxychloroquine etc, for dry eye had too many side-effects. As part of my flares I get shingles outbreaks and keep anti-virals on hand. I have damaged eyes, I had shingles in an eye which has made it very dry and easily infected now. I've had punctal cauterization (not a great help) and dental issues. Now I can't eat a meal or swallow without water. My lungs are getting weaker very gradually and my bowels are mostly constipated. My diagnosis took 20 years. It's time-consuming and expensive to see specialists and most GPs do not connect the dots. There was little info out there 20 years ago. I am 72 and just live with the condition and try to stay on top of what keeps it under control. Looking back, My 6 siblings haven't shown symptoms that I am aware of, but perhaps my father had some symptoms and went undiagnosed. He had hiatus hernia, heart problems and high blood sugar. I feel viruses and hormones have played a big part and hope there are more treatments in the future!
What helped me the most is a carnivore diet, fasting, taking 500 mg of magnesium citrate a day to keep the bowels going, and yes, antivirals are a must.
Question…. Has Anyone gotten hives, elevated itching nearly Everywhere while on hydroxy?? I’m stressed at how I seem to react to nearly All meds?! Help?
My medical doctor just confirmed me better and very okay after undergoing DR Madida herbal treatment plan for my Meniere disease and Parkinson Disease.
Omg, I’ve never seen anyone be so ill mannered in a conversation. Cindy is bad for interrupting and just mowing down the very gracious host , who is trying to honor her story. Learn how to take turns respectfully.
