Joanna

Reader, writer, animal advocate, living w/ #lupus, #polymyositis & #fibromyalgia

[Joanna @castlesburning]

#Dazzle4Rare For nearly 20 years, I have lived with a rare muscle disease called #polymyositis - most people haven't even heard of it. Please take a moment to learn a little and share!

[Joanna @castlesburning]

Looking back, magazines were actually a huge part of childhood and teen years. I wish today's youth could enjoy the same experience.

[𝐍𝐚𝐝𝐢. @luvblessingz]

I miss magazines. The smell of fresh pages, the glossy covers, the quizzes, the interviews, the ads we’d actually read. Social media just doesn’t hit the same.

[Joanna @castlesburning]

#Fibromyalgia #FibromyalgiaAwareness

[Joanna @castlesburning]

#Fibryomyalgia #FibromyalgiaAwareness

[Joanna @castlesburning]

#Lupus #LupusAwareness #LupusAwarenessMonth

[Joanna @castlesburning]

#Lupus #LupusAwareness #LupusAwarenessMonth

[Joanna @castlesburning]

#Lupus #LupusAwareness #LupusAwarenessMonth

[Lupus Association @LADAOrg]

#Fatigue is the most prevalent and incapacitating symptom experienced by about 85 to 92% of people with #lupus, resulting in decreased physical and mental function, and 50% of patients rated it as the most disabling symptom. #LupusAwarenessMonth #LupusAwareness

[Lupus Association @LADAOrg]

It is estimated that as many as one in every 250 African American women in America has #Lupus. #LupusAwarenessMonth #LupusAwareness

[Joanna @castlesburning]

@MillieandGriff That smile!! 😍

[Dr Mark Williamson @markwilliamson]

Remember: time spent ‘being’ rather than ‘doing’ is not wasted time

[Joanna @castlesburning]

Also May... #RainyDay #ChronicPain #ChronicIllness #Spoonies

[Rich DeAugustinis @rdeaugustinis]

Please take 5 minutes to do this at the link below, and to reshare and ask your followers to do the same. Thank you @RepMcCormick and @TheMyositisAssc for leading from the front! #myositisawareness

[The Myositis Association @TheMyositisAssc]

Research continues to improve understanding of dermatomyositis and the role myositis-specific antibodies may play in diagnosis and treatment.

#Dermatomyositis #MyositisResearch #MyositisAwarenessMonth

[Joanna @castlesburning]

May is #MyositisAwarenessMonth! I was dx with PM 20 years ago at age 25 - and most people have never even heard of it! Please take a moment to learn about this rare autoimmune disease:

What is Polymyositis? Symptoms, Diagnosis andTreatment
https://t.co/EidqdoZOj0 @CreakyJoints

[CreakyJoints.org @CreakyJoints]

If asking for help feels hard, start small:
• Be specific — “Can you help me with ___?”
• Choose safe people — not everyone deserves access to your vulnerability
• Set boundaries — support doesn’t mean overexposing yourself
• Use tools — reminders, delivery services, telehealth, support groups
• Let it be imperfect — you don’t have to explain everything to be understood
Needing support doesn’t mean you’re failing. It means you’re adapting.
#ChronicIllness #Spoonie #SelfAdvocacy

[CreakyJoints.org @CreakyJoints]

Supporting someone with chronic illness isn’t about fixing them.

It’s about:
• Listening without minimizing
• Avoiding unsolicited advice
• Offering real help (not just words)
• Letting them feel what they feel
Support isn’t loud—it’s consistent.
Learn more:
https://t.co/Vx0y0oyk0V

[CreakyJoints.org @CreakyJoints]

May brings awareness to more than just one condition—it highlights a range of chronic and autoimmune diseases that impact millions of people every day.

Arthritis. Lupus. Vasculitis. Myositis. Gout. Osteoporosis.

Different diagnoses—but often the same reality:
• Delayed or difficult diagnosis
• Symptoms like pain, fatigue, and inflammation that aren’t always visible
• Unpredictable flares that disrupt daily life
• The need for ongoing, long-term care
These conditions don’t look the same—and they don’t affect everyone the same way. Some are more common with age, others impact younger people—but together, they reflect how complex and interconnected chronic illness can be.
Awareness matters. Not just for recognition—but for earlier diagnosis, better care, and stronger support for the people living with these conditions every day.
#ChronicIllness #AutoimmuneDisease #ArthritisAwareness #LupusAwareness #HealthEquity

[CreakyJoints.org @CreakyJoints]

May 12 is International ME/CFS & Fibromyalgia Awareness Day 💙

ME/CFS and fibromyalgia are complex chronic illnesses that affect millions of people worldwide and are often misunderstood, underdiagnosed, or dismissed.

These conditions can impact every aspect of daily life — including pain, fatigue, cognition, mobility, sleep, work, and mental health.

Awareness matters. Research matters. Listening to patients matters.

To everyone living with chronic invisible illness: we see you, and WE BELIEVE YOU.

#MECFSAwarenessDay #FibromyalgiaAwarenessDay #ChronicIllness

[Joanna @castlesburning]

#Myositis #MyositisAwareness #MyositisAwarenessMonth #Spoonies #ChronicIllness