I really enjoyed your video today. I’m 78 so when I have days like you are today, I totally rest. My preference is to read books but when my eyes are bothering me I can’t do that. However, I also love to crochet so I can sit in my recliner and crochet and mostly watch KZread videos. I have the extreme light sensitivity too. I was diagnosed in 2010 but had no idea what SJ was. I still research a lot. I bought a new bed about 3 years ago which has totally changed my life. I can raise the foot or head area. Plus is does several different massages. It was expensive but is so worth it. Bless you dear one. Please don’t feel like you have to push yourself every day. Several years ago I bought a “Backnobber II” it is also a life saver. I use it to reach any part of my body(neck, back, etc.) that is sore or has a catch in it or is really stiff. I can’t remember the cost but think it was around $30. There may be cheaper ones on Amazon. I bought mine at our local drug store.

@livingwithsjogrensdisease1550

10 ай бұрын

Helo Glenda, thank you for your tips. I just checked out the Backnobber on Amazon. I like the simple S curve. My daughter has complicated type with all the knobs sticking out. I just got tangled up in it. So I'm excited now to purchase a Backnobber. I enjoy crochet, knitting & tatting but sadly had to give it all up due the the way it tangles & tightens my tendons, bursa & muscles in my neck & shoulders. I gave almost all the yarn away but couldn't bare to part with the hooks, needles & shuttles, esp my mom's knitting needles as she's past on. When the muscles round my eyes hurt I eventually rest in bed, complete darkness with heat pack to them & liston to autio books, KZread and or Netflicks. I'm currently addicted to Call The Midwife. I watch or liston to Llama Moma Kala on KZread. If you've not seen her she mainly chrochets. She has a compelling health story, has lost 7 of her fingers from raynads related to systemic scleroderma yet she still chrochets & beautifully. She shares stories about her day to day life, people, events and is just so sweet. I'm just a viewer, lol, but I feel like she's my friend! Thank you so much for your comment & suggestions. Can't wait to try out the Backnobber. 😊

Hope you are alright I haven’t seen a video in awhile. Just sending good thoughts your way. 💕🙏❤️

@livingwithsjogrensdisease1550

4 ай бұрын

You are so sweet. Yes, I've been unwell, compared to my regular base line type flairs. I weaned off of prednisone per the kidney & bone effects. That took a while, slow weaning & withdrawl effects. Then I started propranolol for my essential tremor, worked great. Then I started Arava. 1st & only dose caused reaction, pain from head to toe, gastritis etc. It's finally ebbing away praise God! I do have video plans lined up for sjogrens, hormones & early menopause. Hoping to finally start soon. How are you feeling?

Thank you for your honesty. I am glad to find your channel. I was diagnosed one year ago after lung symptoms led to a CT scan that showed interstitial lung disease. Many blood tests later, I was told I have Sjogren’s and have suffered lung fibrosis. I’m on oxygen at night and on Cellcept, an autoimmune med. I was sad to know of my permanent lung damage from the Sjogrens disease, but relieved to know the other symptoms were not in my mind. I’m only 72 but sometimes feel 92! (Fortunately, not all the time.) I had wondered for the past four to five years what the heck was going on in my body. So, it was a relief, in a way, to know there was a reason for the days when I could hardly swallow dry food like a cookie, or barely read a book due to dry eyes, or keep up with my grandchildren. Sjogrens accelerated the aging process that I feel at my age. But understanding the disease helps me cope with it and enjoy life!

@livingwithsjogrensdisease1550

9 ай бұрын

Thank you for sharing your story Anita. The lung disease is scary, a big obsticle. I'm glad you have the oxygen support at night though not easy coping with a nasal canula & tubing during the night. Bless you in this battlefield. 💜💙🩵💚

Just found your channel. Going to watch the other videos.

@livingwithsjogrensdisease1550

9 ай бұрын

Thank you. I'm open to suggestions, desired content. Hope you are well & enjoying Fall. 💜💙🩵

Awesome ❤ keep being a shining light ❤loving your creativity ❤❤❤❤

@livingwithsjogrensdisease1550

9 ай бұрын

Thank you for your awesome encouragement!

@onelove132

9 ай бұрын

@@livingwithsjogrensdisease1550 you’re so welcome!! 🩷💖💕❤️

Vickie, you are such a positive inspiration for those of us with Sjogren's. I'm noticing menopause symptoms lately( I'm 59) have you experienced anything in particular to share with menopause and Sjogren's?

@livingwithsjogrensdisease1550

10 ай бұрын

Yes, oh my yes! Early menopause & about 45 yrs old no more cycle. I'll do a short video on that because Sjogren's, Lupus, many autoimmune diseases, plaquinill, prednisone, and other meds definately effects hormones, adrenal glands etc. I had early menopause & was told both Sjogren's & plaquinill likely caused it, but I think it was, MS neurologest or maybe the Rhumatology NP, not sure. That's also when my mood, depression & OCD became worse. I'm so glad you reached out Tory. I'll be lifting you in prayer ok. 🙏💞

@toryberch

10 ай бұрын

@@livingwithsjogrensdisease1550 Wow 😳😯 I didn't know all that was mixed in with Sjogren's and meds. I had a hysterectomy in 2011 and I kept my ovaries but I think they have stopped producing hormones sometime ago now. That would be great to see a video on this and thank you for your prayers for me 😊

@livingwithsjogrensdisease1550

9 ай бұрын

Hi Tory, I've been in a flare but after 2 months finally beginning to feel better yay. I've been learning a lot about menopause & how we are affected by: various hormones. How hormones are affected by autoimmune disease, medications, diet, historectomy, stress etc. Is all vary interesting & inlightening. I also found a great article about the hormones & their effects both when not at balanced levels both for natural males & females. The article is easy to read and comprehend. I'll post it here if you or others would like to read it. Hope yours & everyone's day is awesome.

@livingwithsjogrensdisease1550

9 ай бұрын

Here's a link to article about hormones affect on immune system. www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=drbrighten.com/immune-system-hormone-guide/%23:~:text%3DWhile%2520estrogen%2520boosts%2520the%2520immune,cells%2520to%2520focus%2520on%2520repair.&ved=2ahUKEwjuwM3aw_iBAxUPLzQIHVxVDH8QFnoECA8QBQ&usg=AOvVaw0IRpQDhFXA3OR7DA-ddcAv

Thanks for sharing. Does the heat from the sun increases the flare up on your skin?

@livingwithsjogrensdisease1550

2 ай бұрын

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. 💜💙🩵🩷