The Sjogren's Book 5th edition
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@mysjogrensjourney
@mysjogrensjourney Күн бұрын
These reality / realistic videos are so important. ❤️❤️
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 12 сағат бұрын
😊💜💙🩵🩷
@mysjogrensjourney
@mysjogrensjourney Күн бұрын
Sending you so much love and sending healing prayers. 🙏🏻 ❤️❤️💕💕🙏🏻🙏🏻. I’m so glad you’re giving yourself the TLC you deserve. Wishing you better asap!
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Күн бұрын
Awah, thank you. Been watching you & Jeremy video on your progress, not finished it yet. Very encouraging. 💜💙🩵🩷
@mysjogrensjourney
@mysjogrensjourney Күн бұрын
@@livingwithsjogrensdisease1550 Don’t worry about the video atm Vickie. Just rest and look after yourself. (I’m editing the second part of the video now - it will be three parts- you can watch when you feel up to it. )Take good care of yourself. Sending all my love. 💕💕💕
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Күн бұрын
@mysjogrensjourney hugs 💜💙🩵🩷
@kimmieshimmie76
@kimmieshimmie76 2 күн бұрын
Thank you for this I was just diagnosed with this and rheumatoid arthritis. I've been experiencing pain since young and now I know what has been happening. Jesus is with us all thank you for your testimony ❤️❤️❤️.
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Күн бұрын
Thank you for sharing & for your faith share & reminder that He sees our sufferings. Though we don't feel it when suffering He's carrying us through it. Bless you. 💜💙🩵🩷
@remynonan1506
@remynonan1506 3 күн бұрын
I was diagnosed with SJOGRENS thank you for sharing🙏
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 2 күн бұрын
Thank you. Sjogren's is so complex & so many crossover symptoms. Hope you are feeling well today. 💜💙🩵🩷
@NonieK2267
@NonieK2267 4 күн бұрын
Oh Vicki, I’m sorry I’m going to not say anymore to you about this but goodbye lupus book is so easy to read and it’s a small book because she doesn’t go into details that aren’t important just how she reversed her lupus and this is the same protocols she’s using for other people with auto immune disease OK Vicky I’m out of here. I’m not going to, come in on your channel and say anymore about this. I just want people to know about it. I’m so excited because I found her.
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 3 күн бұрын
Thank you, no apologies needed. What a great thing to share! I want to buy the book! I'm glad you commented on it! 💜💙🩵🩷
@NonieK2267
@NonieK2267 4 күн бұрын
By the way, Vicky, I have really chronic asthma and eating her protocol. The smoothies and stuff is gotten me off of my inhalers goodbye lupus that’s all I can say. Please check out her channel goodbye lupus Dr. Brooke Goldner lupus is not the only thing that she’s helped people reverse
@NonieK2267
@NonieK2267 4 күн бұрын
Hi Vicki, I’ve just found your channel and have gone over several of your videos and have left the same missed messages but they were like a year and two years old and I just found this one that said it was 13 days ago so I’m telling you I want to tell you about a doctor Brooke Goldner, who has a KZfaq channel called goodbye lupus she has helped so many people and people with your auto immune disease. She is 19 years free of symptoms of her lupus. If you haven’t found her, I beg you to look up her channel and her website and I really encourage you to read her book. Goodbye lupus, she also has some cookbooks a couple. They’re not expensive. She’s not getting rich off of this her husband and her both have a mission to help others reverse their diseases as much as possible where the scarring will allow scarring there still helped with her protocol. This was an accident. She just wanted to lose weight, she was getting married. Her husband had accepted that he might not have her very long together along with her own diet protocol that she followed lose weight before she realized that with losing weight and then continuing on this eating protocol suddenly she realized that she had no more lupus symptoms. She has been lupus free for 19 years, please please please look up her channel. She’s not selling anything except she does sell her books. She gives so much information online free. She has Instagram, KZfaq and another one of the other programs but her husband also has a book out. I think his name is Thomas Tadlock and, he’s really really knowledgeable too and they have a Facebook channel. If you go to smoothieshred.com you’ll get the Facebook page and then the recipes free recipes for the smoothies and stuff. They don’t sell any ingredients for your smoothies. They don’t sell anything like that they give their free, all of their information is free all the time you can her Wednesdays or live and she answers questions and she’s just a genuine person. This is not a scam. I just beg you to look at her KZfaq channel. She is known all over on the health channels, they have her as guest speaker, I just beg you to look at it. It can’t hurt but it sure might help and I am also doing her eating protocol. I’m just I have to say I’m not as good at it, but I know that the days the weeks that I have been on it really good. My symptoms of my auto immune disease go away, I just happen to be one of those people addicted to food and she also works with people and has many conversations about how to overcome these addictions which I keep following her because I’m going to do it but I know that there are a lot of people that write in and make Comments on her websites I mean on her videos about how her protocol has gotten them rid of their problems and yours is one of hers that she one of the things that she’s had a lot of success with. May God bless you and I just hope that God will let you open your heart to know that I am on the up and up and that checking her outcan’t hurt but it might help many people are having their reversal, including people with your auto immune disease. God bless you.
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 3 күн бұрын
Hi. I'm so glad you did not give up on reaching out to me. Im sorry for missing messages. Regarding food I definately related to your food journey. Praise God for bringing this to me. His timing is so perfect. My rhumatologest put me back on methotrexate & wants me to get off of prednisone,, 6 doses mtx done, 2 shots left in the pk, about intolerable, haven'tbeen able to do videos much or quality exercise video. In past has taken at least 7 wks before the missery subsides into a couple days of "under the weather" feeling. I was just talking to the Lord this morning about what to do, decisions to make about my path forward, quality of life, the medications, diet etc. Now I see your advice & seems like the Lord is bringing me an option. I checked out the website & will watch the videos today. Thank you, thank you. 💜💙🩵🩷
@NonieK2267
@NonieK2267 4 күн бұрын
Vicky have you found goodbye lupus yet? It’s a book written by Dr. Brooke Goldner and she also has a KZfaq channel goodbye lupus she has written a book goodbye auto immune disease. She is helping many many people reverse their auto immune diseases and yours is one of them along with lupus, Hashimoto psoriasis and many other things and there are many many benefits from her protocol and it’s not something she sell you. The books are the only thing that she sells and she gives so much of her information. Everything she has she gives for free however it’s easier to have that little book and it’s not expensive. She also has a recipe book to recipe book one of them is called. Goodbye, hello delicious she has a website. Goodbye lupus her husband, and she accidentally found this formula of food eating that reversed her lupus as she was losing weight. The protocol was developed to help her lose weight. It’s just normal every day plant exclusive eating. I just can’t not tell you about it, I know that this is not what you have your channel for this isn’t advertising. I’m someone who is getting help from her protocol. She is so giving and her husband is and she are both so giving and they’re just interested in helping other people like her several times, she almost died from her lupus she had lupus at 16. She has been symptom-free for 19 years, I hope that anyone seeing this would at least look it up is nothing to lose. It’s not a scam. Her books are sold on Amazon. She has has a wide presence on KZfaq with people inviting her and other people who have had good results with her plan her program she’s Not in there to make money she’s just an awesome person and her husband is an awesome guy. She does not encourage anyone to get off of their medication’s until their doctor takes them off, but many people are getting their auto immune diseases reversed with this protocol. Goodbye. Auto immune disease is a book that has a lot of testimonials from people who have done her private program, and been healed with it, which is the same protocol as she lives in her goodbye lupus book. For people who can’t chew a lot of veggies and plants smoothies can be made and I do the smoothies and I love them. She is such a bright positive thinking person. I hope that you will check this out. If you see my text you’ll see that it’s not a scam that this is real every day wonderful things happening. Of course mainstream doctors are not willing to say that anyone is cured, but for those 19 years, she has been symptom-free for lupus. She was a very sick dying woman may God bless you checking this out just can’t help but it sure might help.
@NonieK2267
@NonieK2267 4 күн бұрын
Have you heard of a book or an eating protocol called good life goodbye lupus bye Dr. Brooke Goldner? She has a KZfaq channel called goodbye lupus. She has helped many many people with auto immune diseases and other problems with her eating protocol. She accidentally reversed her lupus that she had had for many years since she was 16 years old and was expected several times to die. She has helped people with your type of auto immune with the Sjogren’s Hashimoto’s MS psoriasis, etc. this is strictly a plant-based protocol she wrote a book called goodbye lupus you can find her on KZfaq by putting in goodbye lupus. She has a Wednesday program. She shares all of her info for free and does have a program for connecting with people who are not able for some reason to stick to her program but still want help, but for the most part, everything is free all of her information she doesn’t hold back anything. Her husband is also in this with her and was one that helped her develop a protocol for losing weight as that’s his expertise and his degree is in fitness this is an amazing program, I have shared these books with many people. She also has written a book by auto immune disease anybody going through any of these things to check her out and there are other mini other doctors who have changed to plant-based they talk about the plants having too many oxalates however she has you drinking a lot of water unless you have like a kidney problem that you have to hold back on the water then she modifies the protocol until they’re able to take more but drinking a lot of water is one of the key things too, but she has been symptom-free for 19 years. She has a website goodbye lupus.com. So many people that I have talked to you about this now I am not on her program and the way that I want to be mainly because I have a problem with food addiction, but she has helped me so much and I’m getting closer and closer to being completely plant exclusive and I am I feel so much better my auto immune diseases much better at those times until I fall off the wagon however, many people are much better at things than I am however, I am not going to continue saying this because I am going to do it myself because I believe in this and I see so many people recovering and reversing their illnesses that were expected to die even people have commented that other diseases like heart problems and things have disappeared. I like her because she won’t lie to you if she doesn’t know if her protocol will help she won’t tell you it will and she always tells you don’t get off of your medication just because you’re going on this protocol you have to make sure that you’re OK before and have your doctor take you off of it so she’s a legitimate doctor, she’s has a wonderful program and many doctors returning to her for their illnesses. Many people are having her on their programs on KZfaq. She’s been asked to talk at seminars and things she’s been. She’s just an admit her program is amazing. I just beg you guys to look at it won’t hurt won’t hurt to investigate it.
@preachergirl611
@preachergirl611 16 күн бұрын
Hello VIckie. I am newly diagnosed with sjogrens about 3 months ago after insisting that my doctor do blood tests. There is a shortage of rheumatologists in my area so I do not have one. Do you get nausea and diarrhea out of the blue? I get nausea and diarrhea out of the blue and have to rest for a week or so until I feel better. Also sometimes I get overly tired and have to rest a week at the time. If I get bit by a mosquito or stung by an insect it causes an itchy rash that takes weeks to heal. Thank you for your channel and sharing with me.
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 16 күн бұрын
Yes, I do have GI symptoms & often unexpected nausea, diarrhea, constipation, indigestion & esophagus spasm to the point of nothing gng down, pain & not relieved till induced vomiting, a stomach ulcer & stomach hernia: all before & after diagnosis. I didn't know i also had food sensitivities with dairy & animal fats being my worst offenders. I mostly see a rhumatology nurse practitioner. We also don't have enough rhumatologests in my county & surrounding area. I tried to change rhum doctor 2 yr ago but was told 300 + patients were waiting for their referral intakes. Also that accross my state, Washington if a patient already has been under rhum care they have to.go back there or wait 5 years before can see a new one. I'm blessed that I have a nurse practitioner to see per have poor repor with my rhum doctor. Sometimes primary care can manage rhum med & monitoring untill pt can be seen by rhum clinic. There are a few things though that you can do in the mean time. Gaining understanding about autoimmune disease, learning your symptom triggers, new ones, past one's etc. An elimination diet can help show foods, liquids, herbs etc that your body doesn't seem to like. That sort of thing. Also connecting with others like you have here. We can learn from & support & give affirmation to eachother. All of my symptoms seem interconnected. So diarrhea can make my fatigue worse, that kind of thing. Hormons play a big roll in over stimulating the immune system, also stress. There's a Sjogren's book, 5th edition, is like a full on sjogren's dictionary, can order from sjogren's foundation & or Amazon. I pray God paves an open path for you & the care you need. He can & does move mountains but in His own timing. Sorry for my long response. Love & prayers, Vickie 💜💙🩵🩷
@preachergirl611
@preachergirl611 16 күн бұрын
@@livingwithsjogrensdisease1550 Thanks Vickie and God Bless You!!
@kokilapatel1566
@kokilapatel1566 16 күн бұрын
I just decided after 2 years of cellcept and 2 bowel obstruction that no more meds! Now just my bp meds, vitamin supplements and a day full of either work or outside activities as much as I can tolerate.
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 16 күн бұрын
Thank you for sharing. I can relate so much. Sounds like the cellcept did more harm than good. I love your determination to enjoy all you can as you can. You're encouraging! 💜💙🩵🩷
@ROKgem
@ROKgem 17 күн бұрын
Oh my, we are a lot alike. Please take care. ❤
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 17 күн бұрын
Thank you for connecting with me. We are never alone! ✌️💜💙🩵🩷
@lakshmi.g423
@lakshmi.g423 18 күн бұрын
How many years u have this disease..
@JillCrochetsStuff
@JillCrochetsStuff 21 күн бұрын
I have so much trouble swallowing pills as well and have to take them 6 times a day and that is not including my supplements. I have to wake at 4 am and take my thyroid meds because they have to be taken alone and 4 hours away from my other meds. I had thyroid cancer and have no thyroid so need optimal hormones from meds only. I have multiple autoimmune and chronic illnesses and am pretty much in agony every waking moment now. I do hide it well though. Not sure how much longer I will be able to do that. Thanks for the video! Helps to know you are not alone even though I would not wish this sort of life on anyone.
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 21 күн бұрын
You are a brave hero warrier indeed and somehow with all of the hard things you are gracious & suportive of others. 💜💙🩵🩷
@PhyllisAnderson777
@PhyllisAnderson777 21 күн бұрын
My Rheumatologist put me on Humira. It helped my skin dramatically, as well as fatigue.
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 21 күн бұрын
Wow, that's wonderful! PTL. Hope you can have more energy too to do some fun things before Summer is over. I had reaction to Arava so back on methotrexate for high systemic inflammation. I'd like something else. So I'll ask rhum about humira. Hugs to you Phyllis 💜💙🩵🩷
@doesnotFempute
@doesnotFempute 21 күн бұрын
love this 💕
@gailward1400
@gailward1400 25 күн бұрын
My eye dr. said one blood test for Sjogens and said it came back negative yet I have all the symptoms. Not sure what to do?
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 25 күн бұрын
Thanks for sharing your journey. In 1999 my labs done by primary care, high CRP (c - reactive protine), no signs of RA, referred to rhumatology, extensive labs, lip biopsy. Tests, symptoms, history were positive Sjogren's. I'm nearsighted, optometry never never saw Sjogren's nor labs done. Great they are aware now but it affects whole body. If able I'd seek primary care, Rhumatology, in depth labs , 2nd opinion, entire medical history taken into account. I sure hope a path opens for diagnosis, treatment avenues, so hard going through Sjogren's diagnosis. 💜💙🩵🩷
@gailward1400
@gailward1400 25 күн бұрын
@@livingwithsjogrensdisease1550 Thnx for the info!
@rekhamodampuri7521
@rekhamodampuri7521 27 күн бұрын
Im from India im also sjogren's syndrome patient my age is 37 but im suffering with dry mouth dry eyes swollen gland and rashes
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 27 күн бұрын
❤️‍🩹 It's so hard being young with disease. I dont know how you do it with all your resonsibilities & busy life. You surely are brave & strong. I'm sorry you are suffering. Thank you for sharing about it, hope your flare calms down so you can have some relief. Cyber hugs & TLC to you. 💜💙🩵🩷
@machelleswartz9746
@machelleswartz9746 28 күн бұрын
We're going to live until we die if it kills us!
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 27 күн бұрын
Well said!!!!!! 👏 😁
@rithi_0343
@rithi_0343 28 күн бұрын
Sjogrens affected my kidney function my serum creatinine level is now 1.6 it should be 0.9(normal range) my nephrologist gave me steroids to control inflammation. I can't survive without water bottle everytime i feel thirsty. My eyes get dry i carry refresh tears all the time...
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 28 күн бұрын
Sjogren's is such a rough disease. It can rob a person of so much. I'm so sorry this is happening to you. I pray your kidney function improves with time & TLC. Thank you for sharing your story and journey. 💜💙🩵🩷
@kathykoenderink3742
@kathykoenderink3742 28 күн бұрын
Thank you for your videos. I wrote you several months ago. I now have a diagnosis of vasculitis. The way you described the veins and arteries makes so much sense. My shines get red spots if I do to much and if I scrape my leg the skin feels like it's going to pull apart. I also now have very dry skin so am doing self care by moisturizing nightly. 💜
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 28 күн бұрын
Great job with your selfcare. Thank you for sharing & giving up date on how your stmptoms are. I always wonder how everyone is doing. I hope, pray your vasculitis calms & you can have some relief from that. 💜💙🩵🩷
@mariazaynullina962
@mariazaynullina962 28 күн бұрын
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
@livingwithsjogrensdisease1550 27 күн 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. 💜💙🩵🩷
@mysjogrensjourney
@mysjogrensjourney 28 күн бұрын
Loved this! I’m actually doing a at home mini facial today with moisturising mask. And I’ve made an appointment with physio for so many things! We need it! I loved that book when I was a child. Loved Judy Bloom. I haven’t forgotten our collab. I’ll send you a message in September as I’ll be more settled and freeer then. 💕💕
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 28 күн бұрын
Oooh, sounds nice. Enjoy your facial. I'll do one too! 💜💙🩵🩷
@MamaBearOf7Cubs
@MamaBearOf7Cubs 29 күн бұрын
Thank you so much for sharing! After being diagnosed with sjogren’s disease by my endocrinologist, I then made an appointment with a rheumatologist. Unfortunately, she for two years has blown me off and had acted like this disease causes no issues. So now I’m trying to find a new specialist but your channel has really helped me to realize the symptoms I’ve been having are legit and not in my head. It’s all about community to help each other through these diseases and to not feel alone.
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 28 күн бұрын
Very well said. Community is everything. I've learned more from others than my own rhumatologest. Bless you. Hoping you find a good doc soon. 💜💙🩵🩷
@MamaBearOf7Cubs
@MamaBearOf7Cubs 28 күн бұрын
@@livingwithsjogrensdisease1550 Thank you! 🥰
@toryberch
@toryberch 28 күн бұрын
Oh goodness nothing could be further from the truth lol as Vicky and I both know the intense muscle pain from inflammation body aches dry eyes mouth loss of teeth I have never tested positive for my diseases like Rheumatoid Arthritis but my rheumatologist finally diagnosed me ( this was over 7 yrs ago) but it took a lip biopsy to get Sjogren's diagnosed I was out on Plaquenil and it is how I function much better I hope you find a Dr that will listen and help you 😊 best wishes
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 28 күн бұрын
@toryberch Tory, you are so lovely inside & out. Hope you are feeling good today. 💜💙🩵🩷
@tammmy2170
@tammmy2170 29 күн бұрын
How do you get rid of the dizziness? I have neuropathy almost everywhere and when my husband suddenly died I began to stutter and my memory is messed up I also lost my teeth
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 29 күн бұрын
Hi. Im sorry you've lost someone so dear. Grief can be a trigger. The dizziness is a tough one. There several causes of it. Consulting primary care doc, rhumatologest etc best if not already done. cardiologist too. I have neuropathy & dizziness. I try to pace my activity, drink fluids throughout the day to be sure it's not from dehydration. I have a neurologest now who prescribed propranolol for my tremer & seems to help my dizziness a little. Fatigue & poor sleep makes mine worse. Also stressful life circumstances have make my sjogren's/SLE flairs worce. Supplemental B vitamines help too esp B1 thiamine. Mine doesn't fully go away but it does subside for a time. Saw an ENT who concluded its not from my inner ears but so is neurological. 💜💙🩵🩷
@mysjogrensjourney
@mysjogrensjourney Ай бұрын
❤❤
@rithi_0343
@rithi_0343 Ай бұрын
Hii I'm also affected with sjogrens I'm from India I want to communicate with you more...
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
Hi. Id love to hear from you. My email is [email protected] 💜💙🩵🩷
@rithi_0343
@rithi_0343 Ай бұрын
@@livingwithsjogrensdisease1550 thanks for your reply ❤️
@AnaŠtimac-n1n
@AnaŠtimac-n1n Ай бұрын
Prevedi na hrvatski
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
My cost for gluten free, sugar free, dairy free foods are higher. Can cost lower per serving if buy in bulk. Not sure exact costs for items. In US costs can vary between stores. Here is link to Amazon, gluten free oats, a box of 4, 1.5lb bags is $29.40. That is about $7 per bag. One bag 1.5 lb only can cost as high as $16 depending on type oats. I look for coupons, discount items to help lower my costs. Bob's Red Mill Old Fashioned Rolled Oats, Gluten Free, 32 Ounces (Pack Of 4) Bob's Red Mill Old Fashioned Rolled Oats, Gluten Free, 32 Ounces (Pack Of 4) a.co/d/9SjYxZi 💜💙🩵🩷
@mysjogrensjourney
@mysjogrensjourney Ай бұрын
Great video! You’re such a good instructor! This is motivation for me to do these every morning with you! 🥰
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
Awah, thank you. 💜💙🩵🩷
@LadyKestrel23
@LadyKestrel23 Ай бұрын
You’re videos are so helpful and I’m so thankful for them! My rheumatologist is the most unhelpful doctor I have. My primary care doctor tells me I’m stressed. Wishing you the best ❤❤
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
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/ 💜💙🩵🩷
@LadyKestrel23
@LadyKestrel23 Ай бұрын
@@livingwithsjogrensdisease1550 thank you for sharing this!
@fernandavazao7177
@fernandavazao7177 Ай бұрын
You are too boring enough
@guitargeek6182
@guitargeek6182 Ай бұрын
Thanks for sharing. I have every single symptom you've presented (brain fog and insomnia are hitting big time). And I'm a guy, so not a typical Sjogren patient. I use scleral lenses. Have you tried moist chamber goggles?
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
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. 💜💙🩵🩷
@guitargeek6182
@guitargeek6182 Ай бұрын
@@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.
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
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. 💜💙🩵🩷
@JillCrochetsStuff
@JillCrochetsStuff Ай бұрын
Thank you Vickie! I will give these a try. :)
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
In nursing we learned to, Start low & go slow" and at your own pace. Hope it works well for you. 💜💙🩵🩷
@brendabrenner2891
@brendabrenner2891 Ай бұрын
Tu..healing prayers tomall.of us🙏❤️
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
Lots of love & prayers 💜💙🩵🩷
@Nisha-kl8rl
@Nisha-kl8rl Ай бұрын
Living with Sjogren’s Syndrome was hard, but Planet Ayurveda’s amazing treatment gave me relief.
@LadyKestrel23
@LadyKestrel23 Ай бұрын
Hello friend. Have you ever taken plaquenil for Sjögren’s ?
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
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. 💜💙🩵🩷
@LadyKestrel23
@LadyKestrel23 Ай бұрын
@@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 ❤️❤️
@MarisaPaola-um5yb
@MarisaPaola-um5yb Ай бұрын
I have had life celiac, Rheumatoid Arthritis, Sjogrens, vasculitis since I can remember about age 4, and i was misdiagnosed repeatedly until I was too sick to move, had pleurisy, bursitis became blind (temp) and lost most of my hair at age 38. I've tried everything. I've been told I'm unlucky to be in the 1per cent who have life threatening symptoms. After 20yrs I've gone down to 15mg methotrexate, 10mg Arava. Have had two knee replacements..I've been told that my liver is now enlarged and 'fatty' due to all the built up of meds. beware. An infusion helped greatly..but I developed TB (I am home bound, from a neighbour) but was dismissed by my rheumatologist as 'a little bit of pleurisy' I argued that it wasn't, but she wouldn't budge for two years..I live a very isolated life. I can't work, recently told it was mainly Chronic fatigue with ra..I call bs
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
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. 💜💙🩵🩷
@MarisaPaola-um5yb
@MarisaPaola-um5yb Ай бұрын
@@livingwithsjogrensdisease1550 God bless you too, best wishes 💕
@LadyKestrel23
@LadyKestrel23 Ай бұрын
Thanks for your video! It’s so maddening to have weird symptoms and when a doctor actually bothers to look into it they just say “I don’t know”. Wishing you and everyone here the best ❤
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
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. 💜💙🩵🩷
@SuperMichaeljackson1
@SuperMichaeljackson1 Ай бұрын
Look up LDN ( low dose naltrexone) research trust . V informative re chronic auto immune disorders. Has helped my sjogrens exponentially. Produce more tears , saliva etc .
@mlaniado98
@mlaniado98 Ай бұрын
what do you think the best medicine and supplement ? thank you
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
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.
@mlaniado98
@mlaniado98 Ай бұрын
❤😊
@mlaniado98
@mlaniado98 Ай бұрын
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
@Nisha-kl8rl
@Nisha-kl8rl Ай бұрын
I've tried various treatments for Sjogren’s Syndrome, but nothing compares to the results I've seen with Planet Ayurveda. Their treatment is the best!
@Nisha-kl8rl
@Nisha-kl8rl Ай бұрын
Living with Sjogren’s Syndrome has been much more manageable since I started using Planet Ayurveda's treatment. Their approach is the best!
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
Thank you for sharing. I'm glad you've found something good. I've been looking on the web site. 💜💙🩵🩷
@lesliebucari4096
@lesliebucari4096 Ай бұрын
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 . 🙏🙋‍♀️💕
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
Thank you for sharing. You put into perfect words what so many of us experience daily! 💜💙🩵🩷
@mysjogrensjourney
@mysjogrensjourney Ай бұрын
Looking lovely, Vickie! Exciting about giveaway!
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
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. 💜💙🩵🩷
@mysjogrensjourney
@mysjogrensjourney Ай бұрын
@@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!
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
@mysjogrensjourney oh no!!! Yes, it's awful! Glad you are better.
@Nisha-kl8rl
@Nisha-kl8rl Ай бұрын
I've found the best relief for my Sjogren's Syndrome with Planet Ayurveda. Their treatment is top-notch and truly works.
@Nisha-kl8rl
@Nisha-kl8rl Ай бұрын
I struggled for years with Sjogren’s Syndrome, but Planet Ayurveda’s treatment has given me new hope. They’re the best
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
Wow! I'll look that up, see if available in my area. Thank you. 💜💙🩵🩷
@elaineelliott6996
@elaineelliott6996 Ай бұрын
thank you god bless
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 Ай бұрын
God bless you too. 💜💙🩵🩷
@VeronicaLuis-ok9qk
@VeronicaLuis-ok9qk 2 ай бұрын
Please help what are the kind of food that are ok to eat
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 2 ай бұрын
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. 💜🩵💙🩷
@lyndajones6113
@lyndajones6113 2 ай бұрын
Thank you for sharing’
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 2 ай бұрын
Thank you. Hope you are well. 💜💙🩵🩷
@Sallie424
@Sallie424 2 ай бұрын
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
@livingwithsjogrensdisease1550
@livingwithsjogrensdisease1550 2 ай бұрын
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. 💜💙🩵🩷