I am a surgical candidate, but only if I loose weight. Because of the condition that I am not allowed to have surgery for, I need to take meds that have a side effect of gaining weight. I have had a gastric sleeve, I count calories and insurance does not cover GLP-1s. Ugh #chroniclife

Oh man, don't ever get a sequestered disc. That shit is painful and debilitating! #degenerativediscdisease #spine #chronicpain #neuropathy #radiculopathy

Nothing amplifies your chronic issues like an acute incident. Traumatic injury on Friday night requires non weight bearing (wheelchair for me because other side knee and same side wrist are bad). Follow up with hematology and pcp, and preventative antibiotics. Ugh.

You know how they say if you go to work hungover, that’s addiction and it’s time to get help? IMO that’s the metric we should apply to disability: if you’re going to work when normies with the same symptoms would call out and/or go to the doctor, here’s your benefits, that’s disability

You know who the best person in the world is? Its the one who puts your icepack back in the freezer in the morning. #bestpartnerever #psoriaticarthritis #chronicpain

#chrinicallycrafting! Join us ever Sunday & post what you're working on!

Sunday is #chronicallycrafting day! If you have a chronic condition & craft - share what you're working on with the #chronicallycrafting hashtag!

This week I am continuing work on a sensory blanket made up of different textures. 🧶

#crochet
#craft
#chroniclife
#chronicpain
#disability
#neisvoid

Getting ready to fly to a work event. My #psoriaticarthritis is an invisible disability. I use a wheelchair for distance in airports in hopes that it saves stress on my body. I dread the responses of the general public and potential co-workers about not looking disabled #chronicillness #notfaking

Has anyone created a bluesky #disabilityactivist starter pack? I used to have a good list on twitter back in the day, but here looking for disability sky

#spoonie #neisvoid #disability #chronicpain #fibromyalgia #medsky #psoriaticarthritis #chroniclife

Packing to go on my annual company trip to Mexico sounds glam, until I start packing first aid kits, backup steroids, backup pain meds, just in case antibiotics, CPAP, psoriasis skin creams & ointments. I think my disease needs its own bag and I don't want to take it with me

If the democrats don't show a dramatic display of resistance to trump/musk tonight I will be looking for a new party that really represents my values.

Oh, and can someone start a new party please?

I am absolutely terrified about what is to come for our seniors and disabled Americans. I have been fully disabled for more than a decade, and depend on social security.

Stress actually exacerbates MANY disabilities. People WILL die because of this.

At my Rheumatologist's office today and she mentioned how many patients had come in crying in the past two months. She asked them if they were in pain and they said that's not it. It's just everything. Everything is too much

Has anyone created a bluesky #disabilityactivist starter pack? I used to have a good list on twitter back in the day, but here looking for disability sky

#spoonie #neisvoid #disability #chronicpain #fibromyalgia #medsky #psoriaticarthritis #chroniclife

Train trip to the city
Rheumatology✅
Labs✅
Dermatology ✅
Dexa scan✅
Finished it all in time for the early train home: Priceless

#Chroniclife
#Chronicillness

Spending some PTO traveling to the city for routine appointments at the academic medical center today.

Why do people still watch videos on their phones at top volume in public places?

#chroniclife #Etiquette #publicspaces

Nothing like hitting your deductible and out of pocket max in the first two months of the year. #psoriaticarthritis

One more time for the people in the back:

300m people in the world live with rare diseases, and they aren’t always visible.

But we exist.