I'm Vickie, Sjogren's Trouper. Channel is about awareness, & thriving each day with a chronic illness like Sjogren's disease. Thriving looks different day to day & for different people.
I believe we need hope, encouragement, faith, and the support of eachother to thrive despite our daily struggles.
Comments: share your journey, struggles & victories, desire for prayer, what things you enjoy and or subjects you'd like to hear. I welcome all suggestions & honest feedback. Hate phrases & some curseing are filtered.
My content includes: activities, the outdoors, crafting, helpful tips, my journey with diet, exercise, coping, mental health, symptoms, meds, and info on Sjogren's via study reports, articles, current medical textbooks, reputable websites, & my docs, (i ask a lot of questions).
You are the purpose so lets connect!
Instagrams: sjogrens_trouper & vickiemcdonough666
Facebook: Sjogren's Trouper
email: [email protected]
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I am so relieved that I found your channel Vickie. I have been suffering with RA and also have been researching Sjogrens. Well I have it and many of the the chronic conditions that come from it. But I can understand and know what it all means now. It has given me some peace knowing that there is a connection to all of my ailments. I am off gluten and do feel so much better. Next will be getting off of dairy. I pace myself and know that if I do too much I will have a very hard time for the upcoming days afterward. As for explaining this syndrome to family or friends I don’t even try. It’s above their heads if they don’t feel the many emotions that we go through as our bodies just aren’t the same. With prayers and pacing myself I know I can do the best that I can. I will be getting more things to deal with as I get older. But it won’t rob me of who I am! That comes from God and no one can take that away. Thank goodness I have my faith in God and that really helps. Thank you for listening to my story. And God bless all of you ladies . 🙏🙋♀️💕
Thank you for sharing. You put into perfect words what so many of us experience daily! 💜💙🩵🩷
Looking lovely, Vickie! Exciting about giveaway!
Awah thank you. It's coming soon, slight glitch-im sick, so prob 10 days from now. Going to b fun though. Hope you're feeling good. 💜💙🩵🩷
I've found the best relief for my Sjogren's Syndrome with Planet Ayurveda. Their treatment is top-notch and truly works.
I struggled for years with Sjogren’s Syndrome, but Planet Ayurveda’s treatment has given me new hope. They’re the best
Wow! I'll look that up, see if available in my area. Thank you. 💜💙🩵🩷
thank you god bless
God bless you too. 💜💙🩵🩷
Please help what are the kind of food that are ok to eat
Will do. I've been following anti-inflammtory diet plus excluding what know I'm sensitive to: for me with occasional exception, no processed foods, no dairy, low to not processed sugar, no to low amt glutten, not potatos and or no potato derived ingredients with in same 8 hour period as grains per a grain potato sensitivity, o soy if possible & absolutely no soy milk per sensitivity & severe gut reaction. I do eat naturally sweet fruits but with low acidity per my gut, no sugar added dried fruits, real maple organic syrup, organic raw honey, glutten free breads- haven't learned to make my own but it's a goal, increased protiens, limited legumes, oily fish, avoiding nitrites & nitrates as much as I can. I've be eating glutten free oasts but unsure if i should be eating those, using sugar free oat milk but again not sure I should be. Will do more research & do video prob near end July with diet links & printable lists etc. Hope your day is nice & weekend. 💜🩵💙🩷
Thank you for sharing’
Thank you. Hope you are well. 💜💙🩵🩷
I have the trifecta…RA, Lupus, And Sjogren’s . Sjogrens is kicking my butt right now . Lupus is bad but the reason I am responding is please be extra extra careful with plagunil !!! Even though checking every year , as recommended, I have profound retina damage in each eye. Once it turned on me it did so in a big way. My recommendation would be, if it can be afforded, do an eye check every 6 months. Good luck on your (everyone’s) journey
Thank you for sharing. It's so hard being in a difficult place in the sjogren's journey. I sure hope your immune system settles down soon. I'm right there too with you Sallie. 💜💙🩵🩷
Thank You so much for your information. I'm 63 and I was diagnosed this year 2024 after battling with this for 6 years I had done so much research on it that I knew what I had before my lip biopsy done. I have been to so many doctors and specialists and spent so much time and money it has been ridiculous. The doctors treat us like we are nothing.I had to give up Caffeine, dairy,sugar and gluten. I have a severe dry mouth and have a secondary autoimmune disease called Burning Mouth Syndrome. I am completely in pain constantly and the doctors just look at me and think I am crazy. I was put on Plaquenil and it made my skin break out in rashes on my arms and legs, but the doctors don't tell you that is one of the side effects. It was horrible dealing with all the symptoms and then having that on top of it. I cannot trust doctors anymore since they do nothing for you.. I'm taking 2 mgs of prednisone daily and it helps me with the burning mouth. This has made me lose most of my hair and now I'm wearing wigs after having long beautiful hair all of my life. I do also have GI problems and have a 270 fundoplication. I can only eat a salad with lettuce, strawberries, blueberries and veggie cheese without dressing. I only drink water. This has taken a toll on my life and my marriage, but my husband is trying to understand. I have no family members who understand or care and friends I just repeat myself and tell them about not being able to go out to eat with them. I'm not able to do the things I used to do. I have always been a very active person going to the Gym on a regular basis not being able to do this anymore. I pray that no one should have to live with disease it is awful !!!! I'm very much a believer in God and I pray that he will help me with this terrible ability to live with disease because this is not living. God bless everyone who has this terrible disease!!! Thank you for your video
Hi. Thank you for sharing your story. It's such a battle everyday. The grieving due to the past healthy active life lost is such a barrier to enjoying what we still have. I too am giving up foods I used to enjoy. My spouse doesn't have the gut issues I have. so over the past 2 years of my diet change he's missed my home cooked meals. I do make him sometimes though per my physical fatigue, pain etc it's few & far between. I've fallen off the autoimmune wagon so am weaning off the dairy, sugar, glutten, processed foods once again And gaining confidence to try sardines for the healing oils. Ugh. Hopefully it's just in my head & I'll like them. I'll be lifting you to our Lord in prayer. 💜💙🩵🩷
I too, recently ordered my 5th edition of The Sjogren’s Book. Thanks Vickie for recommending that book in a past post. Had a flare recently, drank too much water, lost electrolytes and my heart went into Afib four times in the night without me aware. My watch informed me, so now wearing a monitor for two weeks. So far doing better and God has a firm handle on me. Love to All.
Praise God that you now know about the Afib. May I ask what it feels like? I think I'm experiencing something that isn't painful but makes me breathless & air hungry but quickly passes, sometimes when just sitting quietly & occasionally when I roll over in bed. Of course, I'm not taken seriously as my heart sounds are normal. They ask me about feeling anxious. 🤦♀️. I do take meds for some anxiety but never had this before. Happens even when my mind is calm. Thank you so much for sharing. I have a heart rate tracker watch. I'll start waring it all the time & to bed & monitor what may be going on. Hope you're feeling better and this Afib issue gets resolved for you.💜💙🩵🩷
@@livingwithsjogrensdisease1550 Vickie, I didn’t feel anything while I slept. But along with swollen glands and the two extra strength Tylenol and lack of Potassium, plus not a restful sleep I would not of even known, except My Apple Watch notified me when I got up in the morning. At times in the past my heart felt pains and seemed to flutter at times. Last September I had a Takasuba CM event that was extremely painful, so out of caution they put me on a heart monitor. The triopon # got up past 77K. Trying to do more deep breathing meditation exercises. I have been having dizzy spells and odd dreams. I’ll keep my fingers crossed I don’t have a bigger problem. Take care.
After seeing video I don’t understand what you are doing. Are you brewing coffee 5:31? 🎉what is white in plastic being poured in coffee?
Thank you for sharing that. I need to go back & view the video, make changes, perhaps remake it with more consistency in the main idea shared. Thank you so much. I'll watch it & respond soon. 😊 💜💙🩵🩷
Yes, I brewed coffee, poured either flavored dairy based creamer or oat milk creamer in to the coffee. Since watching the video just now, there were just to many ideas, to long etc. An updated version with KISS method would be great to make, on my radar now. 💜💙🩵🩷
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 [email protected]. 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. 💜💙🩵🩷
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. 💜💙🩵🩷
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. 💜💙🩵🩷
Mam from how many years u have sjogens syndrome..
I've had this dry mouth and lips non stop for weeks despite constant water. White dry saliva. No other symptoms.
Thank you for sharing. Very often those are the only symptoms & what leads to seeking medical care. A lot of conditions cause dryness so is important to see a medical professional to get it sorted. My biggest symptom that led me to doctor was terrible brain fog. I thought I was loosing my mind. I hope you're able to find a cause & treatment. Hopefully it's not autoimmune disease & have simple solution. But if it is sjogren's you're not alone & treatment, lifestyle changes, natural therapies all make a big difference. 💜💙🩵🩷
Tnank you for you advise, regarding to diagnostic assessment and specially '''' what to say to primary health provider if they refuse referral '' .Hag a struggle for two years to get referral to rheumatologist.
Your welcome. I've learned from others. I hope all is going well for you. Gaslighting hurts. Hope you're feeling well. 💜💙🩵🩷
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. 💜💙🩵🩷
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. ❤️🩹💜💙🩵🩷
Mam oregano oil capsule gd for health..pls tell me
Hi. Thank you for your question. I don't know but will find out. I'm going to see a naturopath doctor who specializes in Sjogren's autoimmune disease & diet & suppliments for autoimmune disease. I would be very careful about high potency suppliments too. This will be good to cover in a video once I'm educated more. Thank you again. I hope you are feeling well. 💜💙🩵🩷
Vitamind3+K2, Omega3, VitaminQ 10, Magnesium, Selen, Vitamin B complex
👍
hi what about constipation i have a problem with it which medicine do you take now thank you very much for your help and support
Yes I too struggle with constipation & diarrhea. There never seems to be a consistent balance. I have a sensitive gut so I'm avoiding gluten, dairy, lowered my sugar intake a lot, no soda or carbonated beverages, trying to reduce caffien. Trying to eat more protien, limiting corn. I also have a potato grain issue
I lost my reply, 🤦♀️. I struggle with back & forth constipation & lose stool to diarrhea. A naturopath doctor advised me to cut out dairy ( my worst offender), glutten, sugar, corn & to not eat grains and potatos within 8 hours of eachother per a blood test showed sensitivity to the combination. I cut out carbonation & reduced my caffien to 1.5 cups coffee per day. He said take prebiotics to boost my gut healing as well as a probiotic. Lots of water all day. I notice that when I cheat on my self imposed diet restrictions my constipation & gassiness increases. I've also added more protine to my diet too & reduced animal fats as those irritated inside walls of my intestinal tract which causes diarrhea very quickly leaving no time for the nutrients to absorb. Moving a lot helps too but that's a problem for many people with fatigue & body pains, Winter makes that worse. I hope i didnt so too much over share. I've heard real licorice tea helps too especially for digestion. Hope your feeling good. Thank you again. 💜💙🩵🩷
@@livingwithsjogrensdisease1550 thank you very much for quick replay so what medication do toy take now?
Thank you so much for this video. Listening to your video felt like I was explaining my battle and symptoms to others. May God continue to bless you.
God bless you too! 💜💙🩵🩷
God bless you too! 💜💙🩵🩷
Think about carnivore diet🙏 , it‘s all about lekay gut. And plants are not friends for people with autoimmune deseases
Thank you so much for your info. I appreciate it much. Yes, I need to learn more about it & initiate change. We tend to grill all Summer so that may be a good jump start in to carnivor diet. Hope you are well. 💜💙🩵🩷
Women, don‘t use birth control pills🙏 it‘s soo bad and makes hormones dysballance .. and this causes many deseas. Agnus castus pills helped me a lot. My gynocologist gave them to me
thank you for sharing, ive not heard of agnus castus pills, nice to know something that works good. I need to find out about it. thank you. 💜💙🩵🩷
You‘re welcome🍀 it helped me a lot to regulate my period cycle from 21 days ( horror pms symptoms) to now 28-30 days again🙏 I am 44 years old now and in perimenopause. I went to my gynologist to get progesterone because i thougt my estrogene level were too high, but he told me to try agnus castus, which helps womes body to regulate the hormone balance. It helps me a lot. I also take omega 3, vitamin Q 10, Selenium, vitaminD3+K2 and vitamin b complex
@user-kc7tx2lk3w awesome about your cycles better & more balanced projesteron/estrogen balance. I'll pass on the magnus castus to my daughter too, might order for us both. I've not been taking selenium or an omega 3 suppliment so will start. I do take fish oil but it's a humongous pill, 🥴. I sure appreciate your sharing info. Thank you. 💜💙🩵🩷
Thank you for your videos. There's hardly any and the ones except two which one no longer does video are not detailed enough. Have you heard of sound therapy.
I haven't. What is sound therapy? Is it something we can do at home? Thank you so much for sharing this. Also if you've not seen channel, My Djogren's Journey, her name is Raha, has Sjogren's, very sweet personality. She has a video of interview with an naturopathic doctor, Jeremy, who specializes in Sjogren's, dietary & functional health. He does video appts. I plan to seek him out. Hope your day is awesome 💜💙🩵🩷
Ì had hphylori that gave me inflammation ..then I had sogrens..once treated for hphylori my dry mouth went away but now I have gut issues I think SIBIO
Thank you for sharing. Hphylori can be so severe. I'm glad was found & treated. Awesome that post treatment the dry mouth went away. Reminds me about important role our gut health plays in our immune system & overall health. Hope your day is awesome! 💜💙🩵🩷
Just wish this insomnia will go away
Yes, & wish I knew what causes it, am on trazodone 50mg at bedtime & take 6 to 9mg Melatonin each night, does help. But I also find that if I eat anything at all past 5:30 or 6pm I'm awake till 2 or 3am. Oh wait, I recall reading in a study that found a fair amt Sjogren's patients have a melatonin production & or release issue. I need to look up that. Hope your able to sleep well tonight. 💜💙🩵🩷
Omg I can relate to the vibrations because I always think my phones on vibrate in my pocket or nearby but it’s upstairs
It's weird isn't it. Freaks me out every time. Hope your day is awesome! 💜💙🩵🩷
There are so many things that regular people don’t have to think about. Like wearing your underwear inside out so the seams don’t dig into your flesh.
🤣 I do that. Oh my gosh that's so funny, so true 👍. You made me giggle this morning. Oh how I needed that. Thank you so much. 💜💙🩵🩷
Very interesting and important info. Thank you. 🙏❤️💕
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This is interesting! Thank you for sharing.
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Look into Peter Attia MD discussing HRT and the risk of breast cancer. He has discussed this topic with many other doctors and obgyns.
Thank you. I will definately look for his videos! Hope you are feeling well. 💜💙🩵🩷
Try Restasis, Cequa or Xidra and miebo drops. Maybe even IPL for the dry eye. There a sjorgens and dry eye subreddits that have alot of good info.
Thank you! I'll look for those & talk to my opthamologest too! Hope you are feeling well. 💜💙🩵🩷
Times are getting tough for me Vickie. Jeez, I am considering applying for disability and that's kind if a big deal for me!! Send positive energy my way as I navigate this decision
Im sorry your journey is getting tough. Definately will be sending up good vibes for you. 💜💙🩵🩷
Thanks for sharing. Does the heat from the sun increases the flare up on your skin?
Thank you for your question. Yes, I have to be careful in sun & heat, usually ware a floppy hat or visor, use sunscreen, when outside esp when at my favorite swimming lake. I go in a few brif times to cool off & don't stay longer than 90 min. 💜💙🩵🩷
I primary sjogens syndrome what i will do pls suggest me 🙏
Hi Lakshmi. Is always best to start with your rhumatologest recomendations. currently I'm taking calcium with vitamine D3 with potassium & magnesium. Also Doctor Burg on youtube is a wealth of great info on suppliments. Also Jeremy is a naturopath doctor who specializes in Sjogren's & diet & coaching people through it. He can see patients vertually too. You can see an interview with him on youtube channel, My Sjogren's Journey with Raha. Im planning to start with him soon & get his advice as im flairing several months now. I'm also avoiding sugar, glutten, dairy, & processed foods. But it's hard for me to always stick to it. Also another great resourse is Facebook group Living with Sjogren's; a lot of support there & helpful advice from other Sjogren's sufferers. Also plan rest periods between tasks if you can. I hope these💜💙🩵🩷🙏 things help. I'll be lifting you in prayer as well.
I have sjogruns and I use to walk a lot but then I started having a lot of pain and loosening my balance and now I don’t go walking anymore more I’m scared to fall and I live by my self my son moved out a couple of months ago so I’m in my apartment most of the time I hate sjogruns and rumitoef arthritis I have both it awful 😢
It's really hard. I too fear falling, have fallen several times & when least expected. If I go by my self I use a cain. But a walking partner & walker or rollator might give you options & some freedom. Trusted people to partner with though can maybe hard to find & get to know. 🙏💜💙🩵🩷
Some times I cannot troupe through it, I try hard
Gentle cyber hugs. Sjogren's is a hard burden. At times the very strongest thing we can do is lay our burden down, ask for lots of help, complain, cry lots of tears, rest our soul, feed our spirit. Even Jesus rested. A song from the 80s or 90s, The battle belongs to the Lord, give comfort that we don't have to keep on by our strength alone. There's a higher power who love & cares for you a much physically as spiritually. I believe too that Satan throws difficulties to knock us down so we can't shine. But when we lay our burden down God picks them up. I be lifting you in prayer. ❤️🩹🙏💜💙🩵🩷
It is so misunderstood and wow it changes your life forever, feels like fight fight after fight just to feel normal!
I received my diagnoses on like ok Easter , followed it with 5 days of revival. Hearings bad and eyes are not bad but dry and I can’t have lasik because of this so readers it is. My throat always feels swollen. How how do we know if we have cancer . Note I have taken serrepeptase from Amazon and it took inflammation from 12 down to 3 with test hs-crp lab.
Sounds like you have been through a lot of life changing difficulty, much like mine. I'm glad you've found something that helps. I'd not heard of serrepeptase till you mention it. Wow! I'll try that. Sjogren's can be so up & down. Thank you for sharing. 💜💙🩵🩷
What age did any of us find out ? I’m 57 but feel 55 it hit w throat in fire . I feel covid Omnicrom triggered it
I agree that covid omnicrom can trigger autoimmune disease. I found out at age 40. Looking back I had symptoms long before then. Rhumatic disease runs in my family, I have allergies, sensitivities, had trauma grow8ng up & at 15 was hit by a car, left femur badly broken. I think the trauma to my body sort of woke up the gene for it & developed into Sjogren's. Covid omnicrom & other viruses definately in some people trigger such a strong immune response that it goes way overboard to attacking self. I hope you are doing well. 💜💙🩵🩷
I found out just 3 weeks ago so mentally I am not okay. I never drank or smoked in life and I feel like this is just horrible. Also some odd spots found on lung and kidney in 2021 and pcp won’t ultrasound them again to make sure nothings going on. I feel I’m begging for care. There has to be a Dr somewhere that knows this , indicated Dr or specialty holistic or integrative Dr ? I’m near Los Angeles , I asked for Pepcid and asked a kit pretosone for flare ups and he basically said no to everything . I hope someone who’s had it awhile can let me know the protocol . What tests let us know if there is cancer ? My mom lived 80 yrs always thinking it was fibermyalgia, she always was choking and had issues with swallowing. It was never diagnosed. I believe living a calm life helps . I noticed flare ups are based around stress. Wonder if anyone else noticed that. I’m still in shock as it’s only been 3 weeks knowing this. Gods going to Guide me , I just know Gods got me.
It's a total shock hearing it & so frustrating knowing something's wrong but no diagnosis. The diagnosis, treatment battle for so many of us is like clearing a path in the jungle with a butter knife. I'll do a labs video today & standard follow up pis & neg based on Sjogren's Foundation info, comments sections & my journey thus far. Plus, come to think of it there's a web site that gives effective statements to say to medical providers when advocating for care.. I'll try to find it & post here. 💜💙🩵🩷
Such a cosy video and I love how well you explain things. And yep, I got early menopause. And I’m sure it was due to Sjögren’s. My mother and grandmother had periods up to their late 50’s, whereas mine ended in my 40s.
Thank you. Autoimmune disease robs so much. 💜💙🩵🩷
Here is a link to the Facebook group Sjogren's in Christ, I'm hoping it will work. facebook.com/share/TUTyatWXTyQpx3Yg/?mibextid=A7sQZp
Oops it doesn't seem to. Hmm
I'll put one here soon. I'm tech challenged & still learning how it all works & how to make it so that members can post on it. Hmm. ❤💜💙🩵🩷
sjogruns is so misunderstood and under treated by doctors they have no clue to the suffering we have to indure and they just think oh you have dry eyes take some eye drops and here is some gabapentin have a nice day
🙋♀️Hi, thank you for sharing. I agree with you 100%. New issues as they are occuring have been met with attitude of dismissal. ☹️ 💜💙🩵🩷
@@livingwithsjogrensdisease1550 yes and primary dr have no idea about any o f this and in my case iI have been in sever pain on and off dr wont prescribe predizon they dont want you taking it Just that messed up drug gabb aka nurotin bad enough your in severe pain lets make you mental with this off label seziour drug nurotin gabb there have been studies that gabb actually makes the condition worse over time i was haveinn bad side affects at 900 mg dr wanted to up it to 4000 I said no thanks
kzread.info/dash/bejne/lX-DuqSNccu2p7A.htmlsi=YWG2HxbKVyzjjrMZ
Wow! Your story and attitude is exactly like how l feel. My strength always comes from my Lord Jesus Christ. I had lupus for about 4 years. So sick that sometimes l couldn't get out of bed. Next came my kidney failure and on dialysis for 6 years and that was most definitely very hard on my body. Next my eyes, mouth very dry, than mouth sores. Next had cataract surgery in both eyes. Than finally a wonderful rheumatologist diagnosed me with Sjogrens. But depend on my Jesus to get through each day. In May of 2020 Jesus lead me to a WHOLE FOOD PLANT BASE diet and it has truly helped with my energy and l'm so grateful. Thank you Jesus. God bless you. Thank you for your story. GOD BLESS YOU ❤ IM CHRIST JESUS LOVE ❤️
Wow!!!.you are such an inspiration and testimony of perseverance and faith!!! Thank you so much for sharing. 💜💙🩵🩷
Can I send an email with my questions???
Absolutely. Emai is [email protected] 👍
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I was diagnosed in 2019 with rheumatoid arthritis. I had a family member that suggested naltrexone. I did notice a big difference being able to walk down the stairs in the morning although it hasn’t been a cure I have had flareups.
Thank you for sharing. May I ask how you were able to get your LDN? I've wanted to try it for about a year now for pain & fatigue but, none of my docs prescribe.💜💙🩵💚
@@livingwithsjogrensdisease1550 I asked my GP and they said they didn’t know anything about it but would look into it. Luckily they were willing to after what ever information they looked into. I think it was introduced for helping things like fibromyalgia as well.
I have just been diagnosed with Sjogrens, thank you for your video, I subscribed. I have also changed my diet since I found out I have it, I'm extremely dry, eye's, mouth and skin. I have went to eating more fish, greens, and half and half coffee 2 cups a day, I also a diabetic and changing to this has helped me too.
Thank you for watching. I'm sorry you have to deal with Sjogren's & health issues. I'm glad diet change has helped. It's constant uphill for Twinky lovers, that's me lol. 😊💜💙🩵🩷