A picture of the Giza Pyramids challange medal at 100% completed in 106 days. Distance walking 46.354 mi

One of two completed!! Getting my first medal!!

#conquerorchallange #medal #disabled #disabled #chronicillness #spooniesky #walking #movment

FLaB/SAM background with quote from Sarcoidosis News column: "When we say 'look at me' with our purple hair and accessories, we're taking advantage of an opportunity. While we have your attention, we can share our experiences: what we feel physically, how we're limited by this disease, how that makes us feel, and what we need from others. And it's an opportunity for our friends, colleagues, and loved ones to say, 'I'm here with you, and I'm here for you." Kerry Wong Sarcoidosis News Columnist

From "The power of purple during #SarcoidosisAwarenessMonth":

"When we say 'look at me' with our purple hair and accessories, we're taking advantage of an opportunity."
💜🦋
sarcoidosisnews.com/columns/power-purple-during-sarcoidosis-awareness-month
#sarcoidosis #awareness #community #SpoonieSky

FLaB/SAM background with text Life & Breath Foundation Sarcoidosis Support Group The Life & Breath Foundation’s mission for this support group is to provide support, empowerment, and hope to individuals and families affected by sarcoidosis. Through a compassionate and understanding community, we strive to create a safe space where members can share their experiences, find valuable resources, and gain knowledge about this complex condition. Thursday, April 9, 2026 8:00 - 9:00 pm ET Register to attend at lifeandbreath.org

Life & Breath Foundation
#Sarcoidosis #SupportGroup

Thursday, April 9, 2026 | 8:00 - 9:00 pm ET

L&B’s mission is to provide #support, empowerment, and #hope to individuals and families affected by sarcoidosis.
Register at lifeandbreath.org
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#SarcoidosisAwarenessMonth #RareDisease #SpoonieSky

FLaB/SAM background with AnCan logo and text that reads: Sarcoidosis Support Group Virtual support group for patients and caregivers affected by sarcoidosis. Join via online link (GoTo Meeting) or by phone (international call-in numbers available). Wednesday, April 8, 2026 7:00 - 8:00 pm ET AnCan’s vision is to provide easily accessible, inclusive virtual peer support for every serious disease and condition allowing widespread participation, especially to those geographically, physically or socially disadvantaged. AnCan.org/sarcoidosis

@ancan501c3.bsky.social #Sarcoidosis #SupportGroup
Virtual support group for patients and caregivers affected by sarcoidosis. Join online or by phone.

Wednesday, April 8, 2026 | 7:00 - 8:00 pm ET
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ancan.org/sarcoidosis
#SarcoidosisAwarenessMonth #support #RareDisease #SpoonieSky

FLaB Sarcoidosis Awareness Month background with purple ribbon and text that reads: What is Sarcoidosis? Sarcoidosis is a disease marked by an overactive immune system that leads to the formation of small clumps of inflammatory cells called granulomas in different tissues and organs, affecting how well they work. Over time, granulomas can become calcified or bone-like and cause permanent damage. Because it can affect any organ, or multiple organs at the same time, sarcoidosis takes on different forms. In some people, the condition manifests itself as a one-time episode, with inflammation resolving by itself while in others, it may come and go episodically. In others yet, sarcoidosis can be a chronic and ongoing problem. The chronic form of the disease is the most serious and the most likely to damage organs and become resistant to treatment.

#Sarcoidosis is a disease marked by an overactive immune system that forms small clumps of inflammatory cells (granulomas) in various tissues and organs, affecting how well they work. Over time, they can become calcified and cause permanent damage.
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#SarcoidosisAwarenessMonth #awareness #SpoonieSky

Using our role as ‘professional patients’ to learn and pay it forward Columnist Kerry Wong considers herself a "professional patient," which means she has much to offer others this Sarcoidosis Awareness Month.

Knowledge is power. That’s especially true when it comes to chronic illness, especially w/ a rare disease like #sarcoidosis, as I share in this week’s Sarcoidosis News column.
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sarcoidosisnews.com/columns/usin...
#SarcoidosisAwarenessMonth #PatientEducation
#ChronicIllness #RareDisease #SpoonieSky

Spoonies want you to know... Most people who are chronically ill were once very active, physically capable individuals. I used to go to the gym daily, use my lunch break everyday to walk my dog, and had an active job as a preschool teacher. Sometimes people assume we are sick because we "let ourselves go" or "deconditioned leads to illness" it is quite the opposite. Illness stops us in our tracks without our consent.

#spoonie #spoontheory #spooniesky

S & Y Brand Paper "when I say I'm almost out of spoons, I don't mean in the "I have a few left" kind of way. It's more like 'the ones I have left took a spin in the garbage disposal and are all banged up and covered with dried melted goo from last night's mac & cheese I made with slightly spoiled milk because I was too tired to go buy more" kind of way.

#spoonie #spooniesky #SppoonTheory

"I listen to my body without judgment".
"I treat myself with kindness and compassion".
"My voice matters, and my experience is valid".
"I am proud of myself for navigating this hard day"

#spooniesky

I forgot to add my actual bio part to my bio joining this app. I'm tired. Brain fog is foggy. 😂

#DisabledSky #SpoonieSky #chronicfatigue

I've used this app before, but it's been a while. Adjusting to an app again is difficult as a disabled person to me at least.

What's up bluesky? 👋

#disabledsky #newsky #spooniesky

A night of nostalgia proves compassion counts with chronic illness Witnessing acceptance and inclusion onstage at a multi-act concert was proof that compassion counts, writes columnist Kerry Wong.

The New Edition Way Tour was beyond anything I'd anticipated ... but for so much more than just the music! In this week's Sarcoidosis News column, I share what made it so emotional for me.
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sarcoidosisnews.com/columns/nigh...
#ChronicIllness #disability #PatientExperience #sarcoidosis #SpoonieSky

Just had such a stressful phone call. I hate medical phone calls... i have been waiting to get a case worker for 2 months now. Hopefully I get one soon. I need the help...

#disabled #disability #chronicillness #chronicpain #spooniesky #spoonie #caseworker

THIS. 🦋
#ChronicIllness #SpoonieSky

Another really bad pain day. Guess the last week of highs/good days was just building up to this. 😵‍💫

#chronicillness #chronicpain #disabled #disability #pain #spooniesky #spoonie #lowspoons

27 items people have splurged on to help them manage their chronic illness 1. robot vacuum cleaner 2. massage chair 3. adjustable bed frame 4. weighted blanket 5. CBD products 6. finger splints 7. planner 8. heating pad 9. iPad 10. memory foam mattress cover 11. comfortable car 12.air purifier 13. heated jacket 14. rolling laundry basket 15. electric blanket 16. shoes with good support 17. mobility aid 18. smart watch 19. recliner 20. house cleaning service 21. pajamas 22. leggings 23. orthopedic pillows 24. noise cancelling headphones 25. massage 26. audio books 27. mattress

#chronicillness #spoonie #spooniesky

Flyer reads: RAISING RHIA: A MOTHER'S FIGHT FOR A JOYFUL LIFE, TERENA SCOTT

My friend Terena has launched her new book!
This is a #Memoir on caring for her daughter, who has a #MitochondrialDisease.
Simple, direct, powerful. Highly recommend.

terenascott.com

#CareGivingLife #SpoonieSky

It should be illegal for people with chronic illness to become sick with "normal" sickness. #medsky #chronicillness #spoonie #spooniesky

Stop dehumanizing us…. I recently received a letter regarding my healthcare and the upcoming changes being planned. The first sentence includes the following sentence, “the impacts of inflation and costs incurred f…

Language matters. Words have impact.
when it comes to #healthcare, "first, do no harm" should apply to more than just doctors.
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asmyjointsturn.com/2026/03/07/s...
#ChronicIllness #SpoonieSky

FLaB background with screenshot of Sarcoidosis News column titled, "How do you celebrate Autoimmune Awareness Month?" A potential new autoimmune diagnosis highlights the need for diligence

There are plenty of great ways to honor #AutoimmuneAwarenessMonth. Getting a new #autoimmune diagnosis is not what I would have chosen. But it may be what I've got.

Read now: sarcoidosisnews.com/columns/how-...
🦋
@ifaiarthritis.bsky.social
#awareness #ChronicIllness #sarcoidosis #SpoonieSky

#raredisease #pharmamarketing #healthcarestrategy #patientengagement #lifesciences #healthcareinnovation #agencylife #pharmaleadership | Bionews, Inc. Treatment decisions in rare disease aren’t made in a single moment. They’re shaped before the appointment. Influenced inside the room. And often finalized long after the visit ends. On March 26 at 1...

We all want to be in the room where it happens (the room where it happens, the room where it happens 🎶), but it doesn't all happen in one room.

I'm excited to take part in this Bionews, Inc. discussion about when, why, & how #RareDisease treatment decisions are made.
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#ChronicIllness #SpoonieSky

Chronic pain patients are not drug-seeking they are really seeking from their torturous, insidious, and incessant pain. Please do not judge stigmatitis or assume you know our journey. Rest assured I know 90% of you could not handle a day or an hour of our daily normal

#chronicpain #spoonie #spooniesky #medsky

Tweet by the migraine Network one of the hardest parts of chronic illness? The isolation. Not just staying home, but feeling like life is happening without you. Everyone keeps going, and you're stuck in a body that hit pause.

#chronicillness #chronicallyill #spoonie #spooniesky

I thibk what scares me the most is not that im chronically ill but the fact that I suddenly had a day with no pain and genuine sleep/peace with no explanation. Pain is starting to return today but it actually kinda scared me and made me question myself... #spooniesky #chronicillness #disabled

The pain scale for chronic pain sufferers 1 existence is pain 2 everything in my head is tv static 3 sneezing is a contact sport 4 it's impolite to scream as much as I'd like 5 Pokemon critical hit noise playing on repeat 6 standing is a contact sport 7 I still feel it in my dreams there's no escape 8 if I give an honest description of my pain everyone just thinks I'm lying 9 being alive is a contact sport 10 [vacant eyed stare of one who lives in hell and knows they may never be saved]

#painscale #chronicpain #spoonie #medsky #spooniesky

At least it's not life threatening -- maybe not but it's life altering. Not every chronic illness is fatal, but that doesn't mean it's not devastating. We lose energy, jobs, relationships, dreams. We rebuild routines around symptoms and survival. Just because we're alive doesn't mean we're living we want to. And we deserve support without having to be a desk door. In my shoes: imagine being told to be grateful you're not dying while barely managing to live.

#chronicillness #spoonie #spooniesky #medsky

FLaB background with screenshot of Sarcosine News column titled "The Best advice I ever got for dealing with a rare disease"

On All-Star Weekend, I was reminded of the best advice I ever got for dealing with a #RareDisease. In this week's #SarcoidosisNews column, I share what I learned, how it's served me well, and how it can work for you.
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#ChronicIllness #sarcoidosis #SpoonieSky
sarcoidosisnews.com/columns/best...

I think i started a war between my phycologist (Med managment) and my neurologist about medication. Phych actually cares about my health and neuro just put me on something that counteracts all the hard work we have done for my mental health. 👀😬🤭
#chronicillness #spooniesky #depression #anxiety

FLaB promo for Kaleidoscope: Rare Disease Stories features Bitmoji of me holding print and e-book versions. Text reads NEW LOW PRICES Available on Amazon E-book was $15 now $9.99 Paperback was $25 now $19.99 Hardcover was $30 now $24.99 Proceeds donated to the National Organization for Rare Disorders. Alone we are rare. Together we are strong.

In anticipation of #RareDiseaseDay, you can now get Kaleidoscope: #RareDisease Stories at a new, lower price.

🦓 Proceeds donated to National Organization for Rare Disorders (NORD) 🦓

Order your copy at a.co/d/06pXcqzk
~🦋
#PatientExperience #PatientVoice #sarcoidosis #SpoonieSky #ZebraStrong

FLaB background with screenshot of Sarcoidosis News column titled "Paatients and healthcare providers should approach AI with caution

#AI isn't just the wave of the future; it's here now (whether we like it or not). But when it comes to its use in #healthcare, we've got to approach with caution. Read all about it in my latest #Sarcoidosis News column.
sarcoidosisnews.com/columns/pati...
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#ChronicIllness #RareDisease #SpoonieSky