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
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
Language matters. Words have impact.
when it comes to #healthcare, "first, do no harm" should apply to more than just doctors.
🦋
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-...
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@ifaiarthritis.bsky.social
#awareness #ChronicIllness #sarcoidosis #SpoonieSky
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.
🦋
#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
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.
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]](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:k7dbfvslwrrmfpbz4pz2p6hr/bafkreiecn3rt7eq57cjwmlond2hocvtdg6yyo5ufgodtwk4axu2z6o7bjm)
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]
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.
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
Did you know that my #spoonie support is all over the web? I call it The Spoonie Support Network. You can find all my links at www.linktr.ee/SoftGritSpoo...
#spooniesky #DisabledCreator #promosky #chronicillness
Im standing in a hallway near some electrical boxes. I am wearing a rainbow crochet sweater i had just completed, paired with Grinch pajama pants and snow boots. A single floating eye is edited over top of my face *to hide my weird hair*. Im giving the camera a thumbs up. Im happy to be here.
Im standing in a hallway near some electrical boxes. I am wearing a rainbow crochet sweater i had just completed, paired with Grinch pajama pants and snowboots. A single floating eye is edited over top of my face *to hide my weird hair*. My body is slightly bent in an unusual position. Its slightly menacing. Just slightly.
Im standing in a hallway near some electrical boxes. I am wearing a rainbow crochet sweater i had just completed, paired with Grinch pajama pants and snow boots. A single floating eye is edited over top of my face *to hide my weird hair*. Im positioned sideways. Hand on hips and sassy as hell.
hi crochet pals!¡ i made a sweater and I wanna brag about it!!! Its a lil rainbow number and guess what else¡? It's made of 90% scrap yarn recycled from other projects. Im very very proud 🩷
🧶✨️👁
#spooniesky #crochet #knitting #weirdcore #crochetsweater #rainbowart #slowfashion
Had a really bad pseudoseizure today. They have been getting worse. Neuro had me go in for testing to make sure they werent "real" which i guessed but today i couldn't breathe during this one. Was really scary and then just had a nose bleed... #disabled #disability #spooniesky #chronicillness
Tiktok wants access to your religious belief, chronic illness status, if you're queer or not, if you do kink or not, if you're polyamory or not, if you're queer or not, if you're in the LGBT+ community, your immigration status
What. The. Fuck. Tiktok. As much as I hate it, I'm uninstalling Tiktok and deleting my stuff because this is a HUGE overreach #tiktok #lgbt #disabled #disability #spoonie #disabilitysky #disabledsky #spooniesky #polyamory #nsfwsky #nsfwva
2/
I'm nervous, for some reason.
I have more answers now, than I did. And I have better boundaries (rather than trying to work myself to death).
🤞
#chronicillness #chronicpain #spooniesky #disabledsky
FLaB background w/ screenshot of Sarcoidosis News column titled "The questions of menopause mirror the uncertainty of sarcoidosis
A #RareDisease like #sarcoidosis can leave us with more questions than answers. #Menopause seems to do the same. And when the two combine ... yeesh!
Read all about it in this week's #SarcoidosisNews column:
sarcoidosisnews.com/columns/meno...
~🦋
#ChronicIllness #SpoonieSky #GYN #WomensHealth
The valley of the kings map (they use google maps with a highlighted path). My friend and i used cipywritten images for our pfp so i covered them with emojis. Im the ghost and he is the alien. The red marker a little ways back behind the ghost shows my pace marker. I am 12% of the way in while he is about 45+% in. He agreed to do this with me for fun and because he loves the medals you get at the end. He is doing 2 others, Appalachian mountains and scooby doo, but this one we did together. I may be slow but I'm going!!
The Giza pyramid map. Once again im a ghost emoji. I am much farther from the red pace marker on this being 22% in. This path seems to be a bit shorter then the valley of the kings but still fun!
Wanted to show you guys my progress in my journey in the Conquerer Challanges.
#progress #Conquererchallange #walking #disabled #spooniesky
FLaB background with screenshot of Sarcoidosis News column titled "To scoot or not to scoot: Using a mobility scooter with a dynamic disability
I've been using a #MobilityScooter for a little over 10 years now ... and my latest trip made me reevaluate the whole experience. Read all about it in this week's #Sarcoidosis News column.
~🦋
sarcoidosisnews.com/columns/chal...
#arthritis #ChronicIllness #disabled #disability #SpoonieSky #travel
A private masseuse? 😭 Being able to massage out the Fibro/Migraine muscle-pain and tension a couple of times a week instead of once a month would be massively transformative for me. 🥺
#spoonieSky
If you want to know what an IR based inflammation headache is like, just imagine a level of pain where an overheated, too-hot rice pack on your forehead is preferable to raw-dogging it.
Oh, and pain killers don't work.
I just had to have that big slice of Butterscotch bread. 😑
#spooniesky
It looks like a TV “Aches & Pains Forecast” graphic from a First Alert Weather segment. The chart links upcoming barometric-pressure changes to how people with certain conditions might feel over the next several days. Here’s what it shows: Across the bottom is a timeline from Friday through Thursday, split into AM/PM periods. The yellow line represents forecast pressure trends. The color bands behind it indicate expected symptom impact levels: Green = Low impacts Yellow = Increasing sensitivity (fibromyalgia risk zone) Red = Higher-impact zone associated with things like Headaches & migraines Arthritis pain Autoimmune flares The text at the top mentions: “Cold front arrives Monday, pressure rise & cold air follow.” That pressure rise is likely what pushes the line into the yellow/red zones early- to mid-week. On the left, a figure clutching their knee reinforces the theme of joint or body aches.
Barometric pressure said “fibromyalgia season starts Monday.” Guess I’ll be scheduling my pain like a weather alert 😂⛈️
#spoonie #SpoonieSky #ChronicPain #medsky
