Living with Autoimmune Disease in the PNW

31/08/2026

18/08/2026

🌿Sometimes we look okay.

😊We smile.
😄We laugh.
🙋We show up.
👌We say, “I'm fine.”

🫣But what you see on the outside may be very different from what is happening on the inside.

😥Living with a chronic illness like Sjögren’s can mean constantly managing symptoms that other people simply cannot see.

💙We Are Exhausted
Not just tired. Exhausted from managing our bodies, our symptoms and constantly explaining what we are experiencing.

💛We Mourn
We may grieve the person we were before illness changed our lives.

💙Rest is not a Luxury.
Sometimes rest is what allows us to get through the next day.

💛 Pushing through has Consequences.
We may be able to force ourselves through something today, but the price can be paid tomorrow or for several days afterwards.

💙 We are not Lazy.
We are managing pain, fatigue, brain fog, dryness, neurological symptoms and countless invisible symptoms that you may never see.

💛We don't want to Cancel.
We cancel because sometimes our bodies leave us no choice.

💙 We miss our old lives.
More than we can probably put into words.

💛 Looking “well” doesn't always mean feeling well.
Sometimes we become very good at hiding how much we're struggling.

💙“Just exercise.” “Sleep more.” “Think positive.”
These words may be well intentioned, but they can feel incredibly dismissive when someone is already doing everything they can just to function.

☀️Perhaps most importantly we want to be believed.

🌀We don't need everyone to understand exactly what we're going through.

⭐We just need people to believe that what we're experiencing is real.

🌊Chronic illness can change your life in ways that aren't always visible to the outside world.

🧑‍🚀So if someone you love has a chronic illness, perhaps ask “How are you really doing?", and then give them space to answer honestly.

💠Sometimes the greatest gift isn't advice.

🌱It's understanding.
🌱It's patience.
🌱It's kindness.
🌱It's simply saying “I believe you. I'm here. You don't have to explain everything.”

💠To everyone living with Sjögren’s or another invisible illness:

💛You are not lazy.
💙You are not weak.
💛You are not exaggerating.
💙You are not alone.
💛Your struggle is real.
💙Your feelings are valid.
💛And you matter.

18/08/2026

Mixed Connective Tissue Disease (MCTD)

13/08/2026

The UV Index is forecasted to be really high here the next 10 days. I am one of those that doesn't do well with UV exposure (and heat, humidity, too).

"Photosensitivity is common in people with lupus: 40% to 70% of people with lupus will find that their disease is made worse by exposure to UV rays from sunlight or artificial light.

Why are people with lupus so sensitive to light?
Exposure to UV light causes damage to everyone’s cellular DNA, explains Sabrina Newman, MD, a board-certified dermatologist. “UV radiation is what causes cell damage, regardless of whether it’s coming from the sun or a lamp,” she says.

It’s what happens next that differs. “In people with lupus, the cells are much more sensitive to the damage caused by UV radiation,” Newman says. “Once the cells are damaged, the immune system clears them, but people with lupus have a much slower clearance of these cells.”

The dead cells stick around in the body, triggering an immune system attack. “We have antibodies in our immune systems that typically are used to fight infection. But in people with lupus, the antibodies wrongly target proteins within normal cells and cause an immune reaction,” explains Benjamin Chong, MD, associate professor in the Department of Dermatology at the University of Texas Southwestern Medical Center in Dallas." (SOURCE: Lupus Foundation of America)

What steps do you use to protect yourself from UV exposure?

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This information does not constitute advice, always consult a medical professional.

12/08/2026

If you live in the Portland, OR area the Working Class Acupuncture school is a great resource. They have free clinics with their students twice a week. Appointments can be made online or by calling.

Acupuncture is an art you learn by doing. We believe acupuncture is a beautiful intervention.

11/08/2026

Why does the heat make me so sick and tired?

One of the key issues for lupus patients during the summer is photosensitivity, a condition where the skin reacts abnormally to sunlight. From 50% to 80% of lupus patients experience some form of photosensitivity, which can trigger skin rashes, flares, and systemic symptoms like fatigue and joint pain.

Heat can exacerbate lupus symptoms. High temperatures and humidity can increase fatigue, dehydration, and heat intolerance, making it harder for you to stay active and enjoy summer activities.

Heat makes you feel sick and tired because elevated temperatures increase blood flow and metabolic activity, which can amplify underlying immune system inflammation.

People with lupus often experience trouble regulating body temperature, high levels of nitric oxide that dilate blood vessels, and increased photosensitivity, turning standard warmth into severe physical exhaustion and flares.

Increased Inflammation:
High ambient temperatures speed up metabolic processes, which can stimulate an overactive immune system and worsen joint pain or swelling.
Blood Vessel Changes:
Research shows that people with lupus can have higher levels of nitric oxide, a chemical that widens blood vessels. This traps heat in the body and prevents effective cooling.
Photosensitivity:
Sunlight and UV rays frequently accompany heat, damaging cells and triggering systemic symptoms like deep fatigue, rashes, and low-grade fevers.
Medication Side Effects:
Certain prescriptions used to manage lupus can affect how your body sweats and handles temperature changes.

Ways to Cope and Stay Cool
Limit Peak Sun Hours:
Stay indoors during the middle of the day when outdoor temperatures and UV radiation are highest.
Hydrate Constantly:
Drink plenty of water to help your body regulate its core temperature and prevent dehydration-related fatigue.
Wear Protective Layers:
Choose loose, lightweight, and UV-protective clothing if you must go outside.
Use Cooling Gear:
Apply cold compresses or cooling neck wraps to lower your skin temperature quickly when you feel an energy crash coming on.

SALE: Subscribers Group subscription is only 99¢ for a limited time only. But when you subscribe you lock in that price, and it will stay that price even when the subscription goes back to normal pricing.

Our Subscribers Group link is in the Facebook comments. All of our top fans get a free trial.
Join us on Instagram, YouTube, TikTok, and Facebook.
Images designed exclusively for ©The Lupus Warriors Community by KJS Digital Images.

SOURCES: Global Autoimmune Institute, Altus Biologics, Healthline, Johns Hopkins Lupus Center
This information does not constitute advice, always consult a medical professional.

10/08/2026

What were your first symptoms with lupus? What did you notice that made you start looing for answers?

10/08/2026

Acupuncture has proven to be very beneficial for people who experience chronic pain.

Some research shows great effectiveness while others have not experienced relief.

With the heterogeneity of supportive evidence, acupuncture's low-risk profile under standardized techniques and potential cost-effectiveness suggest consideration as a neuromodulation/practical nonpharmacological management of pain therapy. ...

08/08/2026

Mast Cell Activation Syndrome (MCAS)

Mast cell activation syndrome (MCAS) is an immune disease with an estimated prevalence of 17%. Mast cell chemical mediators lead to heterogeneous multisystemic inflammatory and allergic manifestations. This syndrome is associated with various ...