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Thank you. Not getting answeres & a plan is frustrating. You deserve clear, timely communication/answeres. I just found an article on Time magazine about it. I usually look for info on .org sites but this article is good. time.com/6312720/what-to-do-if-your-doctor-isnt-listening-to-you/ 💜💙🩵🩷

@@livingwithsjogrensdisease1550 thank you for sharing this!

Hi. I've heard a little of scleral lenses but not moist chamber goggles till now. I want to try them. Great idea!!! I'll read on it today, try to get some. 👍 I sure hope your insomnia improves soon. 💜💙🩵🩷

@@livingwithsjogrensdisease1550 I have mixed feelings about my scleral lenses: at the end of the day, it's either my eyes are killing me because I'm not wearing my lenses, or because of them. That's why I'm wondering whether moist chambers would be better. But I'm not too excited about spending 200 bucks + shipping (I live in France) just on a plastic frame with a silicone seal, for something that might not work in the end (and make you look like a disabled person). I already spent 400 bucks for each scleral, and they're not even corrective lenses, just a shield for my eyes. If I may, another important topic would be scales: scales for assessing fatigue, and scales for pain. There are different scales in the literature, but doctors don't always use them. It would be good to be able to assess fatigue and pain throughout the day, with a simple and workable scale. All the best.

I agree that a consistent use of scale is very bennificial. In the US patients report pain levels by a number 1-10, 10 being the worst & or faces scale. I'd like to see level of suffering add to the scales. This could provide more information to accurately assess need for treatment. Scales don't take into account how people with same symptoms differ in how the mind & body handles it. If two people with same pain severity or fatigue level measure themselves differently such as one says 5/10 pain while the other says 8/10 one could potentially recieve less than adequate treatment for condition no less severe. Still, as an RN I believe the pain scale is an important tool that should always be used in assessment. And the patient should always be believed. 💜💙🩵🩷

In nursing we learned to, Start low & go slow" and at your own pace. Hope it works well for you. 💜💙🩵🩷

Lots of love & prayers 💜💙🩵🩷

Hi. Thank you for your question. Yes, I took plaquinill 400mg each morning from 1999 to 2021, 22 years. I had to stop due to early retinal cell damage noted by opthamologest. Since then the damage has been stable. Plaquinill made a big difference in my fatigue , brain fog & systemic inflammation. It allowed me to get through nursing school, & work as a RN from 2005 to 2017. It did give me some itching after showers though ice packs to my legs about 10 min just after shower made it stop. After stopped plaquinill no more itching after showers. I am itchy just not severe. Many people have no side effects at all from plaquinill. It's a hard decision. 💜💙🩵🩷

@@livingwithsjogrensdisease1550 I’m sorry to hear that you had eye damage from plaquenil. I’ve been taking it for about 5 years and I assume it is helping. Don’t really want to see what things would be like without it. I also have fibromyalgia and I think most of my weird symptoms are from that but doctors never find anything wrong so I’m thankful for that! Thanks so much for the information! Wishing you the best ❤️❤️

Thank you for sharing your story! Glad you are able to be on lower MTX dose. My daughter takes Arava for her RA, works well for her. I tried Arava last March but had bad reaction. I was told by provider that about 10% of patients have a reaction. So I'm back to MTX 20mg injection/ wk. I too am homebound these days more due to fatigue, vision issues, neuro, unsteadiness ugh, using cane & rollater walker now. Funny thing, I'm 64 so one might think my age + disease + walker = rational but even at 64 some of the people in my life are uncomfortable when with me. IDK if they feel embarrased or denial. So me being 64 & dealing with that I can imagine how tough it is for younger people deaing with social stigma regarding mobility issues. I hope that Fall brings cooler weather & conditions & opportunities to enjoy yourself away from the house. God bless you in your journey. 💜💙🩵🩷

@@livingwithsjogrensdisease1550 God bless you too, best wishes 💕

Thank you for being here. I agree it's maddening when providers do that. Sometimes they just don't get definitive answeres from the various tests, and don't even agree with eachother. I'm greatful to have medical care. 💜💙🩵🩷

There are several medications that work to reduce inflammation and immune system attack on the body. Best to consult rhumatologest which meds are best for each patient. I can only say what I've had experience with. Plaquinill worked well for me, made my skin itch sometimes. Many people have no side effects from it. Eye damage began so had to stop plaquinill 3.5 years ago. Methotrexate worked good for my systemic inflammation but side effects were hard for me. I had a little nausea next day, increased fatigue 2 - 3 days after weekly doses. Some people have no issues with it at all. Last summer I quit methotrexate, just couldnt deal with side effects anymore. Feb 2024 rhum agreed to try me on Arava. A family member takes it, says it works great & no side effects for them. I tried it March 2024 but had bad reaction. I read only 10% of people have reaction so 90% people do great. So now can't take Arava & rhum won't try me on anything else till I try methotrexate again. So restart it soon. Diet change has helped me a lot, am doing anti-inflammatory diet. I take a lot of suppliments based on my conditions, provider recomendations, viewer comments & Dr Burg on youtube. Currently take: (calcium magnesium & potassium) twice a day, vit D3 so calcium can get back into my bones per Dr Burg. Also taking fish oil, CoQ10, turmeric, cranberry, vit B complex, B1 (thiamine), & take Folic Acid-needed daily with methotrexate per it depletes Folic acid. There are other meds, some given by IV infusion. I'd really like to try low dose naltrexone but my docs don't/won't prescribe it. I also saw a naturopath doc who did labs then started me on a magnesium suppliment drops for too low magnesium in my cells. It really made a big difference while on it. Sorry this is so long.

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Thank you very much for your help and support good job I'm on hidroxquianel but not happy about it we need better treatment good week

Thank you for sharing. I'm glad you've found something good. I've been looking on the web site. 💜💙🩵🩷

Thank you for sharing. You put into perfect words what so many of us experience daily! 💜💙🩵🩷

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. 💜💙🩵🩷

@@livingwithsjogrensdisease1550 Awww hope you feel better really soon. And no rush! You just concentrate on feeling better. I'm ok. Just got over the dreaded co*&d!! Much better now, but it was awful. Much love to you!

@mysjogrensjourney oh no!!! Yes, it's awful! Glad you are better.

Wow! I'll look that up, see if available in my area. Thank you. 💜💙🩵🩷

God bless you too. 💜💙🩵🩷

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. Hope you are well. 💜💙🩵🩷

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. 💜💙🩵🩷

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. 💜💙🩵🩷

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.

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. 💜💙🩵🩷

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. 💜💙🩵🩷

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. 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. 💜💙🩵🩷

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. 💜💙🩵🩷

Your welcome. I've learned from others. I hope all is going well for you. Gaslighting hurts. Hope you're feeling well. 💜💙🩵🩷

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'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. ❤️‍🩹💜💙🩵🩷

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. 💜💙🩵🩷

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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?

God bless you too! 💜💙🩵🩷

God bless you too! 💜💙🩵🩷

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. 💜💙🩵🩷

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. 💜💙🩵🩷

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 💜💙🩵🩷

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. 💜💙🩵🩷

It's weird isn't it. Freaks me out every time. Hope your day is awesome! 💜💙🩵🩷

🤣 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. 💜💙🩵🩷

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Thank you. I will definately look for his videos! Hope you are feeling well. 💜💙🩵🩷

Thank you! I'll look for those & talk to my opthamologest too! Hope you are feeling well. 💜💙🩵🩷

Im sorry your journey is getting tough. Definately will be sending up good vibes for you. 💜💙🩵🩷

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. 💜💙🩵🩷

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.