My Sjogren's & What I'd change if i knew then what i know now
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- เผยแพร่เมื่อ 8 มิ.ย. 2024
- My Sjogren's & What I'd change if i knew then what i know now
#sjogren's #sjogrenssyndrome #autoimmunedisease #livingwithsjogren'sdisease #sjogren'strouper #connectivetissuedisease #chronicpainwarrior #lupus #sle #chronicfatigue #chronicillnesscommunity #depression #trauma #POTS #ptsd
● Beyound Sjogren's
share/bwHrgiDFGRHriLqe/?mibextid=A7sQZp
● Living with Sjogren's
share/36RB466BwRDPFXch/?mibextid=A7sQZp
● My autoimmune disease story: sjogren's
th-cam.com/video/E87gWrUiifI/w-d-xo.html
● My autoimmune blindness story
th-cam.com/video/uch7QPvO9J0/w-d-xo.html
● My sjogren's syndrome diet change: my why & how
th-cam.com/video/BdWLlWQFhkM/w-d-xo.html
![ลักพาตัว เอาลูกเอิร์นกลับมา...!! [เอิร์นไดเม่]](http://i.ytimg.com/vi/f4NVKlZ5qkk/mqdefault.jpg)
![เจอประจำ ตอน พักเที่ยง [EP.32]](http://i.ytimg.com/vi/jvqk6uJoVks/mqdefault.jpg)
This is Vickie. I want to appologise for saying my mask was dishonest. No one is that. We're just wanting to protect ourselves. After watching the video again I feel i should have clarified more. I was referring to my nursing career & that I should have been honest up front with my co-nurses. I don't think other people are dishonest in hiding the things we are sensitive about. We all ware masks of some type on & off. It's a human thing. I deeply appologise if any of my words offend. 💜💙🩵🩷
I recently was diagnosed with Sjogrens disease. I’ve had auto immune diseases for years but this diagnosis is new as of approximately four months ago. I feel like I am in a battle that I will never win. I am in bed way too often. I seldom leave my home because of outward changes the disease has caused. Overwhelmed and hopeless are fitting words for how I feel today. I truly appreciate this video by you. I’m not ready to give up by any means. I just have some clarity that getting myself in some counseling should be a priority. I needed this today. ❤
I'm sorry you've had to deal with so much. Pain, brain fog, fatigue are overwhelming. Depression is also a symptom of autoimmune disease & fibromialgia esp because it can attack the small vessles in our brain & nerves. I see providers for therapy & meds through headlight health virtually. If you are interested here's a link. www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=headlight.health/provider/beaux-baggesen-jensen/&ved=2ahUKEwjDqujK5syGAxUlCTQIHQ1mBtsQFnoECBQQAQ&usg=AOvVaw1gJ7fferejGN2ZAcOSnTNp. 💜💙🩵🩷
Thank you ♥️
@gramnenew6196 thank you for viewing, hope you're feeling good. 💜💙🩵🩷
I was diagnosed years ago but nobody told you anything other than dry eyes and mouth .i had post natal depression with 3 children And that turned into agoraphobia I. thought it was just me than couldn’t cope yet I’d always been a coper . I have also put on a face to hide how I feel. I’m now 84 and my mask is still on
@joyrichards9261 you are courages, have had to be very brave so much throughout life. To share your story here is brave, it's touching my heart, raising my own awareness. Perhaps the mask I've worn is what it took to get me to go beyond my front door. It's a scary world & filled with potential rejection & shame. Were we not taught to "always be a lady", be the shinny perfect wife & Mom, never show our true feelings, hide the non praiseworthy things? Growing up mistakes & failures were always to be ashamed of thus hidden. That's how society was back then for my parents & too for my siblings & i. Finally after all these years I believe that failures are part of success & a nessasary part of learning & not shameful. Still, it stings. And our brain & soul doesn't dump out the old patterns just because we are learning new ones. Leaving my mask at home or off when I'm on the phone i still scarry, requires effort & courage, likely always will. But im finally ok with others to not like me, it stings though. Ive learned to give myself the approval I was taught to find in the eyes of others. Still, we all need to be loved and valued by eachother. Sorry this was long. ❤️🩹💜💙🩵🩷
Thank you so much for sharing this. I may have vasculitis , the Dr. has moved away from maybe RA. Autoimmune diseases are so exhausting.
Your welcome. Vasculitis when it appears can be frightening. the rash. I sincerely hope you's is not causing skin breakdown. Mine was helped by cold packs but always takes 2 to several weeks to compleatly heal, fade away. I hope your's resolves quickly & without pain. Gentle cyber hugs. 💜💙🩵🩷
Thank you for expressing yourself and sharing this video. I recently have been diagnosed with “mild Sjögren’s syndrome” with MCTD and the Arthritis Dr won’t run more tests for six months. The La and Ro #’s not high enough even though I have all the symptoms. Yes, the depression and anxiety can be frustrating. Cleaning up my diet and eliminating all foods that cause inflammation has helped. Love ❤
Thank you. Sounds like you've been through a lot & are doing what you can. It really helps to know we have some power of choices despite our provider opinion. ❤️ 💜💙🩵🩷
@@livingwithsjogrensdisease1550 On top of that I’m allergic to Plaquenil. Jesus Christ has been helping me. Thanks.
@MarieJeannet-be6qm ❤️🩹, my daughter takes Arava & does great with it. According to midline plus & I think it was John's Hopkins website, not sure cuz I read so much. But supposedly 90% of patients had no side effects. I'm in the 10% who can't take it. I had reaction so bad. It can feel so hopeless for remitting symptoms when a med doesn't work out. I hope you'll keep looking into alternatives. Gentle hugs. 💜💙🩵🩷
Good Morning. I did order the Sjogren’s book from the Foundation, should arrive any day. Looking forward to learning more about Sjogren’s and how to navigate this. A Functional Dr. is helping me with my Gut issues and on supplements, my gut hasn’t felt this good for 10 yrs. Pray it continues. Staying away from Gluten and Dairy helps tremendously, sleeping… Love
I'm so glad to hear your gut has improved so much! That's a big win. Will keep you in my prayers. 🙏💜💙🩵🩷
@@livingwithsjogrensdisease1550 Thank you. I saw in one of your videos your in Eastern WA, I’m in Spokane. Almost neighbors.
@MarieJeannet-be6qm I'd love to meet up & buy you a coffee or smoothie!!!! If you're interested my email is sjogrenstrouper@gmail.com.
PS my feelings will not be hurt if that's something you'd rather not do at this time. I get it too that with our spoons needing to be spread out so they last us always a nessasary priority. We can also connect by phone. But I need to share that privately with others. Hope you're feeling well today. 💜💙🩵🩷
i think you did excellent i dont think tou could do anything different doctor today cant help any more
Thank you. Yes, I agree doctors can't do much to treat unless prescribing meds. Some insurances now cover naturopath & functional medicine which is good. I'd like to see medicare & medicade step up & cover it too. 💜💙🩵🩷