Yup, I’m just shy of 200. Using a means that is accessible for my disabilities, doesn’t make it lesser.
I have some e-books, some physical books, but most are audio. I can’t hold onto things for very long without my hands going numb or hurting. And eyestrain sucks with sjögrens.
I have some e-books, some physical books, but most are audio. I can’t hold onto things for very long without my hands going numb or hurting. And eyestrain sucks with sjögrens.
December 29, 2025 at 6:09 PM
Yup, I’m just shy of 200. Using a means that is accessible for my disabilities, doesn’t make it lesser.
I have some e-books, some physical books, but most are audio. I can’t hold onto things for very long without my hands going numb or hurting. And eyestrain sucks with sjögrens.
I have some e-books, some physical books, but most are audio. I can’t hold onto things for very long without my hands going numb or hurting. And eyestrain sucks with sjögrens.
I'm sorry you gotta deal with POTS too, Ive known some folks with it and it's not horrible :( one of my best friends has sjogrens and thats another rough one 😞 I seriously hate it too. she had to fight doctors a lot her life, and it's truly insane to see how many actually are so shitty
December 27, 2025 at 2:02 PM
I'm sorry you gotta deal with POTS too, Ive known some folks with it and it's not horrible :( one of my best friends has sjogrens and thats another rough one 😞 I seriously hate it too. she had to fight doctors a lot her life, and it's truly insane to see how many actually are so shitty
Having Sjögrens while living in Calgary is a nightmare lmao
The air is so fucking dry that my organs are not functioning properly 🤡 I’m in so much pain and so tired.
The air is so fucking dry that my organs are not functioning properly 🤡 I’m in so much pain and so tired.
December 26, 2025 at 8:11 PM
Having Sjögrens while living in Calgary is a nightmare lmao
The air is so fucking dry that my organs are not functioning properly 🤡 I’m in so much pain and so tired.
The air is so fucking dry that my organs are not functioning properly 🤡 I’m in so much pain and so tired.
I would actually suggest "complex" and "invisible" are the wrong terms. Such conditions as ME/CFS, POTS, Ehlers Danlos, Sjogrens and Long Covid are very, very visible and painfully obvious to patiens and their families, friends and colleagues.🧵
December 26, 2025 at 7:56 AM
I would actually suggest "complex" and "invisible" are the wrong terms. Such conditions as ME/CFS, POTS, Ehlers Danlos, Sjogrens and Long Covid are very, very visible and painfully obvious to patiens and their families, friends and colleagues.🧵
Everybody with suspected #TED or sub-clinical #hypothyroidism should be tested thoroughly, proactively.
How lucky I've been to be able to contain thyroid eye disease over the last five 5 years, overlapping #Sjogrens. This article documents the worst cases, and a new treatment.
How lucky I've been to be able to contain thyroid eye disease over the last five 5 years, overlapping #Sjogrens. This article documents the worst cases, and a new treatment.
Case report: Oral tofacitinib achieved rapid and sustained remission in cases of refractory thyroid eye disease, targeting proinflammatory cytokine pathways implicated in orbital fibroblast activation. ja.ma/3YF1QtU
December 25, 2025 at 11:05 PM
Everybody with suspected #TED or sub-clinical #hypothyroidism should be tested thoroughly, proactively.
How lucky I've been to be able to contain thyroid eye disease over the last five 5 years, overlapping #Sjogrens. This article documents the worst cases, and a new treatment.
How lucky I've been to be able to contain thyroid eye disease over the last five 5 years, overlapping #Sjogrens. This article documents the worst cases, and a new treatment.
Funny you mention Sjogrens…
December 24, 2025 at 10:45 PM
Funny you mention Sjogrens…
Sjogrens brain fog sucks.
December 23, 2025 at 6:52 PM
Sjogrens brain fog sucks.
I'm super excited for the rainy days but my body is in full revolt. I can't tell you how happy I am not to be going anywhere this Christmas. I'm gonna be under a blanket with my heating pad, probably embroidering something.😊
#sjogrens #fibromyalgia
#sjogrens #fibromyalgia
December 23, 2025 at 1:56 PM
I'm super excited for the rainy days but my body is in full revolt. I can't tell you how happy I am not to be going anywhere this Christmas. I'm gonna be under a blanket with my heating pad, probably embroidering something.😊
#sjogrens #fibromyalgia
#sjogrens #fibromyalgia
Elevated Levels of IL-9 Fail to Suppress Pathogenic T helper 17 cells in Sjogrens Disease https://www.medrxiv.org/content/10.64898/2025.12.19.25335657v1
December 22, 2025 at 10:55 PM
Elevated Levels of IL-9 Fail to Suppress Pathogenic T helper 17 cells in Sjogrens Disease https://www.medrxiv.org/content/10.64898/2025.12.19.25335657v1
My Mother, at 95, is dealing with two autoimmune diseases, Sjogrens & CMT. Her mind is 100% there, but she is in a wheelchair & very weak.
I wish the big drug companies would put more resources into curing these conditions.
Anyway, have a wonderful holiday season & keep up the good fight!
I wish the big drug companies would put more resources into curing these conditions.
Anyway, have a wonderful holiday season & keep up the good fight!
December 22, 2025 at 9:02 PM
My Mother, at 95, is dealing with two autoimmune diseases, Sjogrens & CMT. Her mind is 100% there, but she is in a wheelchair & very weak.
I wish the big drug companies would put more resources into curing these conditions.
Anyway, have a wonderful holiday season & keep up the good fight!
I wish the big drug companies would put more resources into curing these conditions.
Anyway, have a wonderful holiday season & keep up the good fight!
🩸Be proactive when you have #lupus #SLE #Sjogrens. After lab draws, go online to look at results. Look up each abnormal lab to learn more about how they may relate to your situation. ALWAYS ask your doctor as well. "How do these pertain to my situation?":
www.lupusencyclopedia.com/lupus-lab-te...
www.lupusencyclopedia.com/lupus-lab-te...
Lupus Lab Tests Explained: What Blood Tests Mean for Diagnosing and Monitoring Lupus
Live Longer and Better with Lupus! Whether you are a lupus patient seeking practical, easy to understand tips, or a healthcare provider wanting to treat your patients better, The Lupus Encyclopedia pr...
www.lupusencyclopedia.com
December 21, 2025 at 9:02 PM
🩸Be proactive when you have #lupus #SLE #Sjogrens. After lab draws, go online to look at results. Look up each abnormal lab to learn more about how they may relate to your situation. ALWAYS ask your doctor as well. "How do these pertain to my situation?":
www.lupusencyclopedia.com/lupus-lab-te...
www.lupusencyclopedia.com/lupus-lab-te...
❄️ It is that time of the year! Dry, itchy skin!
#SLE #lupus and #Sjogrens patients are especially affected. I updated my dry skin care blog with tips from a dermatologist specializing in dry skin. I updated the recommended soaps:
www.lupusencyclopedia.com/dry-skin-in-...
#SLE #lupus and #Sjogrens patients are especially affected. I updated my dry skin care blog with tips from a dermatologist specializing in dry skin. I updated the recommended soaps:
www.lupusencyclopedia.com/dry-skin-in-...
Top Dermatologist Tips For Itchy, Dry Skin in Lupus and Sjögren’s [December 2025 Update]
Itchy, dry skin is common in lupus. Many lupus patients also have Sjögren’s disease overlap syndrome that causes dry skin, eyes, and mouth. Read this blog post to learn top dermatologist tips on dry s...
www.lupusencyclopedia.com
December 21, 2025 at 7:18 PM
❄️ It is that time of the year! Dry, itchy skin!
#SLE #lupus and #Sjogrens patients are especially affected. I updated my dry skin care blog with tips from a dermatologist specializing in dry skin. I updated the recommended soaps:
www.lupusencyclopedia.com/dry-skin-in-...
#SLE #lupus and #Sjogrens patients are especially affected. I updated my dry skin care blog with tips from a dermatologist specializing in dry skin. I updated the recommended soaps:
www.lupusencyclopedia.com/dry-skin-in-...
👁️ Many #SLE #lupus patients have dry eyes that worsen during Winter. Often, it is due to also having #Sjogrens (occurs in one fourth of SLE patients and most are undiagnosed).
I updated my dry eye care post and included newer and better therapies:
www.lupusencyclopedia.com/dry-eyes-and...
I updated my dry eye care post and included newer and better therapies:
www.lupusencyclopedia.com/dry-eyes-and...
Dry Eyes and Lupus: Eye Doctor Tips and Tricks [December 2025 Update]
Live Longer and Better with Lupus! Whether you are a lupus patient seeking practical, easy to understand tips, or a healthcare provider wanting to treat your patients better, The Lupus Encyclopedia pr...
www.lupusencyclopedia.com
December 21, 2025 at 6:53 PM
👁️ Many #SLE #lupus patients have dry eyes that worsen during Winter. Often, it is due to also having #Sjogrens (occurs in one fourth of SLE patients and most are undiagnosed).
I updated my dry eye care post and included newer and better therapies:
www.lupusencyclopedia.com/dry-eyes-and...
I updated my dry eye care post and included newer and better therapies:
www.lupusencyclopedia.com/dry-eyes-and...
I am reading this book. I read a tip in it that saved me from being invalidated, coercively controlled and blocking my healthcare! It rocks. I’ve been advocating for myself for years but Sjogrens is a bear to get proper care. Thank you to Kristina Kelly the Author!
December 21, 2025 at 1:53 AM
I am reading this book. I read a tip in it that saved me from being invalidated, coercively controlled and blocking my healthcare! It rocks. I’ve been advocating for myself for years but Sjogrens is a bear to get proper care. Thank you to Kristina Kelly the Author!
Dealing W th swollen eyes and tested negative for Sjögrens, anyone have any ideas? I live with multiple autoimmune diseases.#rawarrior #sjogrens #autoimmune
December 20, 2025 at 5:50 PM
Dealing W th swollen eyes and tested negative for Sjögrens, anyone have any ideas? I live with multiple autoimmune diseases.#rawarrior #sjogrens #autoimmune
My fellow autoimmune disease sufferers… has anyone with RA, fibromyalgia and or celiac disease had eye issues? This is the second time my eyes have done this. I’ve been tested for sjogrens but the bloodwork was negative. Any clues?
December 20, 2025 at 5:43 PM
My fellow autoimmune disease sufferers… has anyone with RA, fibromyalgia and or celiac disease had eye issues? This is the second time my eyes have done this. I’ve been tested for sjogrens but the bloodwork was negative. Any clues?
Going live soon to start my belated birthday charity stream weekend! Today, I'm playing Terraria with a bunch of awesome friends! Come by and hang out with us! I'm raising money for Sjogrens Foundation. More info about Sjogrens here: sjogrens.org/understandin...
Understanding Sjögren’s
Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas.
sjogrens.org
December 19, 2025 at 9:30 PM
Going live soon to start my belated birthday charity stream weekend! Today, I'm playing Terraria with a bunch of awesome friends! Come by and hang out with us! I'm raising money for Sjogrens Foundation. More info about Sjogrens here: sjogrens.org/understandin...
Every part of my body is dry as a bone except my nose, which has the snot of a thousand teething babies pouring out of it 24/7.
#sjogrens
#sjogrens
December 19, 2025 at 2:37 PM
Every part of my body is dry as a bone except my nose, which has the snot of a thousand teething babies pouring out of it 24/7.
#sjogrens
#sjogrens
And since my MEDICAID is denying my infusion that treats lupus and Sjogrens so I'm late, everything is a little bit worse.
December 19, 2025 at 3:18 AM
And since my MEDICAID is denying my infusion that treats lupus and Sjogrens so I'm late, everything is a little bit worse.
Outside my normal system bc they said "this is all we can do for you" (lyrica). Phlp.
And it took like 8 months. That's not bad for stuff I've had to do on my own.
Sjogrens is "associated with" many many terrible "idiopathic" things I have and they can't tell me why, like gastroparesis also. 🤷🏻♀️
And it took like 8 months. That's not bad for stuff I've had to do on my own.
Sjogrens is "associated with" many many terrible "idiopathic" things I have and they can't tell me why, like gastroparesis also. 🤷🏻♀️
December 19, 2025 at 3:05 AM
Outside my normal system bc they said "this is all we can do for you" (lyrica). Phlp.
And it took like 8 months. That's not bad for stuff I've had to do on my own.
Sjogrens is "associated with" many many terrible "idiopathic" things I have and they can't tell me why, like gastroparesis also. 🤷🏻♀️
And it took like 8 months. That's not bad for stuff I've had to do on my own.
Sjogrens is "associated with" many many terrible "idiopathic" things I have and they can't tell me why, like gastroparesis also. 🤷🏻♀️
From my Sjogrens. It's nasty business.
Lupus give me 2 kinds of arthritis in my feet, osteoarthritis and synovitis, I think. And all the meat is disappearing, just gnarled bones, special shoes... Hard to get an explanation AND treatment in 15 minutes. I got this bc I researched at length + acted
Lupus give me 2 kinds of arthritis in my feet, osteoarthritis and synovitis, I think. And all the meat is disappearing, just gnarled bones, special shoes... Hard to get an explanation AND treatment in 15 minutes. I got this bc I researched at length + acted
December 19, 2025 at 3:05 AM
From my Sjogrens. It's nasty business.
Lupus give me 2 kinds of arthritis in my feet, osteoarthritis and synovitis, I think. And all the meat is disappearing, just gnarled bones, special shoes... Hard to get an explanation AND treatment in 15 minutes. I got this bc I researched at length + acted
Lupus give me 2 kinds of arthritis in my feet, osteoarthritis and synovitis, I think. And all the meat is disappearing, just gnarled bones, special shoes... Hard to get an explanation AND treatment in 15 minutes. I got this bc I researched at length + acted
It's a good question...
I bounced around as a "making it up" or "anxious patient" then stuff got worse as just a "anxious fibro patient."
Fibro, lupus, POTs, and Sjogrens which is poorly understood. Probably the latter.
They Like to say Type 2 diabetes but I was diagnosed w neuropathy years...
I bounced around as a "making it up" or "anxious patient" then stuff got worse as just a "anxious fibro patient."
Fibro, lupus, POTs, and Sjogrens which is poorly understood. Probably the latter.
They Like to say Type 2 diabetes but I was diagnosed w neuropathy years...
December 19, 2025 at 3:05 AM
It's a good question...
I bounced around as a "making it up" or "anxious patient" then stuff got worse as just a "anxious fibro patient."
Fibro, lupus, POTs, and Sjogrens which is poorly understood. Probably the latter.
They Like to say Type 2 diabetes but I was diagnosed w neuropathy years...
I bounced around as a "making it up" or "anxious patient" then stuff got worse as just a "anxious fibro patient."
Fibro, lupus, POTs, and Sjogrens which is poorly understood. Probably the latter.
They Like to say Type 2 diabetes but I was diagnosed w neuropathy years...
I would like to be included with these brave folks. POTS, SJÖGRENS, hEDS, to name a few.
December 18, 2025 at 4:12 PM
I would like to be included with these brave folks. POTS, SJÖGRENS, hEDS, to name a few.
Sjogrens syndrom can cause a cough
December 18, 2025 at 4:24 AM
Sjogrens syndrom can cause a cough
also finding out about Sjögrens
December 17, 2025 at 11:35 PM
also finding out about Sjögrens