I thank God for you and your way of sharing. Everything I learn from u is helping me wit new complications to try and get some relief! I want to be strong and do what I can but it’s getting less ! I am 80 yrs old and look forward to going to my heavenly home but if God wants me here to pray and love those around I want to fight each day! Thank you so much for your light! Sandy Johns wife! ♥️

@livingwithsjogrensdisease1550

11 ай бұрын

You are precious in His sight! I'm learning everyday that the fight, my fight, belongs to the Lord. Praise God for you. You have encouraged me so much! 💜💙🩵🙏❤️‍🩹

Vickie, sending you a lot of support and best wishes! You’re very inspiring and wonderful woman! I’m very sad that you have to experience these symptoms and feelings! I’ve just diagnosed with SS feeling a little bit strange cause from one point of view I understand I can handle especially that I still don’t have the symptoms really bad, but on another hand knowing that still science doesn’t have enough information o treatment for this disease makes me feel unsafe… but the most important is to be true to myself and supportive, so will be going to have psychology sessions to help to deal with all that. Sending you love and support!! Thanks a lot for sharing your story!

@livingwithsjogrensdisease1550

40 минут бұрын

Thank you for your kind words. Not truely knowing how your sjogren's will progress is scary. I wish you didn't have to experience it. Researchers are learning more everyday. There's a lot of hope. Therapy is a very good thing, has helped me so much. Please never let go of that beautiful you & fighting spirit you have, k. 💜💙🩵🩷

Oh wow I'm the first here. My sjogies is super bad at the moment. Eyes are so dry I'm using a 10ml bottle of eye drops a day, skin is itching horribly and hopelessly dry and I'm tired beyond belief. I can barely stand up and living at an extremely minimal level and on a liquid diet of high protein soya milk and fruit smoothies so tired that I do not actually feel any hunger and too tired to chew Still on the stinging nettle and thankfully have not felt a great deal of pain

@livingwithsjogrensdisease1550

11 ай бұрын

Oh my, that's a lot of eye drops. I'm sorry it's been so bad. You are a true Sjogie warrier! Lately, with the heat & dryness here in Eastern WA I've been using a humidifier at my bed side. I've been using gel drops by Systane & helps. It does have preservative. I also use types without preservatives but haven't found thicker drops in that type. Also, I began using Caster oil on my skin before bed 2 or 3 times a week which has helped with the itching & dryness lately. One idea, I've heard that warm moist cloth over the eyes helps too. The prob is nothing lasts long once the air gets to the eyes & inside tissues. 🙈

Lupus and Sjorens and Fibromyalgia and something called MSD itching all the time! Hait loss headaches extra time to think like im lagging constipation so rest assured i understand and pray for all of us.

@suzanneladue5828

9 ай бұрын

Use natural remedies for dry skin Organic olive oil has been a God sent for me ❤

@livingwithsjogrensdisease1550

9 ай бұрын

Thank you for sharing. So many of these autoimmune diseases, bone & muscle diseases cause so many of same symptoms, especially fatigue, migrains & pain. It's a triple whammy. Poor sleep is hard to get under control too. It seems like a spinning cycle with so many factors constantly feeding it. 😳 It's overwhelming. May I ask how you were diagnosed with the MSD?

Oh yeah and terrible sleep and easily exhausted 😞

Thank you so much for your videos. ❤️🙏🏻

@livingwithsjogrensdisease1550

11 ай бұрын

Awah, 😊. Thank you too for yours. I'm still watching your naturopath interview videos, some parts over & over cuz there's a lot of info, hard to remember stuff. Now that I'm home from Summer travels my plan is to contact Jeremy to set up virtual first visit. Also, after hearing his Tree & roots description, lol, I'm fixated on 🌳 s. I've always had a thing for trees & stumps, wierd, don't know why, but now I'm even more fascinated by trees & the roots! You've really done a special thing for us Sjoggies! 😊💙

@mysjogrensjourney

11 ай бұрын

@@livingwithsjogrensdisease1550 Haha! I love that you're even more fascinated by trees and their roots! I love that! And definitely let me know how it goes with your first free consultation. I haven't posted about this on my channel yet, because I want much more time to go by to see if it continues, but between you and I, after only doing a tiny portion of his protocol (due to lack of money of not being able to buy all the supplements yet and not doing any testing yet), just by change of diet and one supplement, I haven't had any fatigue since about 5 days after I started that minimum part of the protocol!!!!! And that was around 3 weeks ago. I have zero fatigue and I also feel healthier. He said a few people get such quick results, but some do, and I have, and others take longer but they still see results. Fingers crossed for us both! 🙏❤

@livingwithsjogrensdisease1550

11 ай бұрын

Wow! That's amazing! Yay 🎉

@livingwithsjogrensdisease1550

11 ай бұрын

Do you have an Etsy shop or on line market type shope for your photography & other arts?

@mysjogrensjourney

11 ай бұрын

@@livingwithsjogrensdisease1550 actually I’m going to post about it as can’t wait.. BUT, though my fatigue feeling has gone and I have more energy, I’m realising I need to slow down and pace myself as I’ll crash at this point. But it’s a great step forward.

Maybe thats why I hardly ever feel hungry.

@livingwithsjogrensdisease1550

11 ай бұрын

👍

@livingwithsjogrensdisease1550

11 ай бұрын

I hadn't thought of that as a cause, geepers, it totally makes sense!

Hey Vickie 👋👋 I absolutely love the lake and campground where you are 😀 I miss Washington Oregon and California for its amazing lakes and parks 😊

@livingwithsjogrensdisease1550

11 ай бұрын

We were blessed to visit Glacer National Park in July. It was incredible! I didn't do any hiking per knees, fatigue etc but was able to take short walks around the camp area. It was very peaceful & soothing to my soul. I did some video of the lake & photos of animals we've seen over summer so I can revisit the experiences & the feels. Perhaps others may enjoy a youtube video of the waters & waves. God's glory & majesty was prevalent through our entire experiences, His grand creations take my breath away. I hope you are finding rest & peace & pain relief. Praying for you & our group here on channel. Hugs & 💞

@toryberch

11 ай бұрын

@@livingwithsjogrensdisease1550 That would awesome to see 😃 I understand about hiking days being over. But just walking the trails would be awesome 😎

Hi, I'm new to your channel. I'm in the process of possibly being diagnosed with sjogrens. Your videos are very informative. I'm currently on Omeprazole and been on it for years. How did you come off of it?

@livingwithsjogrensdisease1550

9 ай бұрын

Hi, thank you. I stopped omeprazole abruptly but should have weaned slowly, had acid reflux for 2 months after, PCP said takes 2 months to go away after stopping. Still have some at times but mild not severe burning in throat. I'm glad I took it, needed it. If reflux get worse like before I'll go back on it for quality of life. 🙏💜💙🩵

@christinec2306

9 ай бұрын

Thank you for your feedback. It is much appreciated. I've been binge watching your videos. I'm finding them helpful. God is using you to bless us.

@livingwithsjogrensdisease1550

9 ай бұрын

Thank you for that validation. My heart is full. I also recieve blessing from viewers & all the personal stories shared & advices. 💞

Question do you ever feel like vomiting right after you eat? Because it seems like every time I eat I feel super nauseous seconds after swallowing the last bite and sometimes I have to stop eating in the middle of a meal because im having trouble swallowing feeling as if the food is going to come back up. Do you know if this is a commonality with Sjogren's?

@livingwithsjogrensdisease1550

10 ай бұрын

I began having similar issues about 2007. I couldn't swallow the awesome food at my daughter's wedding. It simply wouldn't go down. I was in pain from the pressure in my chest, Finally I had to induce vomitting to clear it out & get relief. From that point on I've had swallowing issues. Small bites & drinking fluid for chewing & more fluid to swallow has helped me a lot. I would get diarrhea if I got up to soon after eating, relaxing a good hour to let it all digest helps, started omeprazole, made it better but still have to rest gut. I advocated for about 2 years for an endoscopy, showed hiatal hernia & 3 stomach ulcers. PT helped. A few years later it was all cleared up. I chose to stop omeprazole after over 10 years from side effects last Spring. Acid reflux continued a good 2 months & occurs from trigger foods & or laying down too soon after eating. Now I've stopped or limited eating trigger foods (dairy, glutten, sugar, coffee, animal fats & potatos). It's helped a lot. Still get some nausea from (trigger odors, my taboo foods, my weekly methotrexate, anxiety/stress esp with close family member's irritation with my "stuff", & me when I'm flaring. My family gets it but hey do get it but forget when I semm better for a time. My "stuff" affects them too. We're not the same mommy, wife, friend when we are sick. So it's hard for them to cope with, denial maybe. Things that help me are: as needed Zofran for nausea, mental health therapy, pacing my energy use, prioritizing my chores, giving myself grace to leave dishes or laundry un done, keeping up my dietary changes, being my best supporter with self truth telling & positive self talk, believing myself helps me be patient doctors, family, others who don't get it or don't believe its real, calmly explaining yet again letting them know what im experiencing, and at time lanching into the physiology medical definitions of autoimune diseases which i admit is a bit manipulative, maybe, but turns them off and so they roll their eyes, or turn their ears off, stop LOL. We supporting each other too and lifting oneanother up is so important because we do get it, we live with it too. 💜💙🩵❤️‍🩹

@PrettyEyesz

10 ай бұрын

@livingwithsjogrensdisease1550 thank you!! I'm learning to validate my own feelings even if others don't. It's not easy, but I think it helps me from going crazy, and I'm starting to actually listen to my body first and create boundaries with my family and telling them NO I DON'T FEEL GOOD SO I'M NOT GOING TO DO that whatever right now. Sometimes they listen and leave me alone and sometimes they don't. I realize I have to rest and not push my body too hard because stress gets to me easily and both mental and physical stress can cause me to be physically sick so that's why I'm being more self caring these days. Some of my family don't understand me taking time to myself because they never do it for themselves, there constantly on the go and rarely rest, and I'm the complete opposite. I can no longer go, go, go anymore like I use too, my body won't allow me to. I'm starting to just accept and readjust to this new illness and new life and not beat myself up for it. I know I'm not lazy, and it's not a matter of working or trying hard enough, it's me finally accepting my body us sick and constantly fighting and sometimes I need to rest even when I don't want to. I'm in counseling right now and taking better of my physical health, so I'm slowly working on it. But things are worse when flares up happen or I'm dealing with my chronic headaches, popping Tylenol like it's candy. But I'm living through it day by day.

@livingwithsjogrensdisease1550

10 ай бұрын

I realise I don't know you, but I'm proud of you! You have faced a lot & making great choices. 😊

@PrettyEyesz

10 ай бұрын

@livingwithsjogrensdisease1550 thank you!!

@pamcarter3214

3 ай бұрын

Get an endoscopy