Caffeine, Chaos, and Taylor
@caffeine-chaos-tay.bsky.social
Navigating rare disease caregiving with coffee in hand.
Pinned
This song is crying in the rocking chair. Looking across the hospital room not knowing what is happening to your infant.
Listening for Every. Single. Breath.
I still feel it in my chest a full year post diagnosis.
#Party4U #cystinosis #rarediseasecaregiver
Listening for Every. Single. Breath.
I still feel it in my chest a full year post diagnosis.
#Party4U #cystinosis #rarediseasecaregiver
Silence is compliance. Time to get loud. A mom has been gunned down on the way home from school drop off, schools shut to avoid further state-violence related lockdowns. When one family isn’t safe from this, none of us are. #AbolishICE #immigrantsmakeamericagreat
Say her name. Renee Nicole Good.
Say her name. Renee Nicole Good.
January 9, 2026 at 9:58 PM
Silence is compliance. Time to get loud. A mom has been gunned down on the way home from school drop off, schools shut to avoid further state-violence related lockdowns. When one family isn’t safe from this, none of us are. #AbolishICE #immigrantsmakeamericagreat
Say her name. Renee Nicole Good.
Say her name. Renee Nicole Good.
Reposted by Caffeine, Chaos, and Taylor
You’re invited! Join Outagamie Dems for a Volunteer Fair on Jan 24, 11am–2pm at the DPOC office. 🌟
Meet teams, explore roles (canvassing, events, data & more), and find your place in the work of electing #Democrats locally.
https://dpoc.to/volunteerfair
#Volunteer #NewYearsResolution
Meet teams, explore roles (canvassing, events, data & more), and find your place in the work of electing #Democrats locally.
https://dpoc.to/volunteerfair
#Volunteer #NewYearsResolution
January 6, 2026 at 8:30 PM
You’re invited! Join Outagamie Dems for a Volunteer Fair on Jan 24, 11am–2pm at the DPOC office. 🌟
Meet teams, explore roles (canvassing, events, data & more), and find your place in the work of electing #Democrats locally.
https://dpoc.to/volunteerfair
#Volunteer #NewYearsResolution
Meet teams, explore roles (canvassing, events, data & more), and find your place in the work of electing #Democrats locally.
https://dpoc.to/volunteerfair
#Volunteer #NewYearsResolution
Reposted by Caffeine, Chaos, and Taylor
What is happening in MN and across the US is not “public safety." It’s tyranny.
Renee Nicole Good should be alive today.
Act now locally to push back: come to our 01/24 volunteer fair, stay tuned here; help us move the needle: https://www.mobilize.us/mobilize/event/878239/
#MN #ICE #PoliceViolence
Renee Nicole Good should be alive today.
Act now locally to push back: come to our 01/24 volunteer fair, stay tuned here; help us move the needle: https://www.mobilize.us/mobilize/event/878239/
#MN #ICE #PoliceViolence
January 8, 2026 at 4:29 PM
What is happening in MN and across the US is not “public safety." It’s tyranny.
Renee Nicole Good should be alive today.
Act now locally to push back: come to our 01/24 volunteer fair, stay tuned here; help us move the needle: https://www.mobilize.us/mobilize/event/878239/
#MN #ICE #PoliceViolence
Renee Nicole Good should be alive today.
Act now locally to push back: come to our 01/24 volunteer fair, stay tuned here; help us move the needle: https://www.mobilize.us/mobilize/event/878239/
#MN #ICE #PoliceViolence
Reposted by Caffeine, Chaos, and Taylor
Everyone deserves to be treated with respect and dignity, no matter who they are or who they love.
January 1, 2026 at 11:01 AM
Everyone deserves to be treated with respect and dignity, no matter who they are or who they love.
Reposted by Caffeine, Chaos, and Taylor
Ready to go! See you in an hour for the Progressive play-date. Decorate a Cookie, color a Christmas card, play games or just hangout.
#playdate #appleton #thingstodotoday #kiddos #parents #democrats
#playdate #appleton #thingstodotoday #kiddos #parents #democrats
December 6, 2025 at 7:02 PM
Ready to go! See you in an hour for the Progressive play-date. Decorate a Cookie, color a Christmas card, play games or just hangout.
#playdate #appleton #thingstodotoday #kiddos #parents #democrats
#playdate #appleton #thingstodotoday #kiddos #parents #democrats
Reposted by Caffeine, Chaos, and Taylor
US Rep/WI Governor candidate Tom Tiffany (R) just reintroduced a bill to block refugees in WI.
On the other hand, we believe humans should be treated with dignity. Good thing his 7th district seat has Dems running to replace him.
Ready to make your voice heard? Volunteer: OutagamieDems.org
On the other hand, we believe humans should be treated with dignity. Good thing his 7th district seat has Dems running to replace him.
Ready to make your voice heard? Volunteer: OutagamieDems.org
December 5, 2025 at 1:22 AM
US Rep/WI Governor candidate Tom Tiffany (R) just reintroduced a bill to block refugees in WI.
On the other hand, we believe humans should be treated with dignity. Good thing his 7th district seat has Dems running to replace him.
Ready to make your voice heard? Volunteer: OutagamieDems.org
On the other hand, we believe humans should be treated with dignity. Good thing his 7th district seat has Dems running to replace him.
Ready to make your voice heard? Volunteer: OutagamieDems.org
Reposted by Caffeine, Chaos, and Taylor
Candidate Sara Rodriguez for WI Governor, speaking now at the office. Come on out if you're close by.
With all the candidates coming forward who's primary campaign will you support? Drop your thoughts in the comments or give us a question for Sara! ⏬
With all the candidates coming forward who's primary campaign will you support? Drop your thoughts in the comments or give us a question for Sara! ⏬
December 3, 2025 at 11:33 PM
Candidate Sara Rodriguez for WI Governor, speaking now at the office. Come on out if you're close by.
With all the candidates coming forward who's primary campaign will you support? Drop your thoughts in the comments or give us a question for Sara! ⏬
With all the candidates coming forward who's primary campaign will you support? Drop your thoughts in the comments or give us a question for Sara! ⏬
Reposted by Caffeine, Chaos, and Taylor
Holiday Progressive Playdate!
Join us for an afternoon of cookie decorating, holiday card crafting, and community connection.
Kids play, adults connect, and everyone leaves a little sweeter!
📅 Friday, Dec. 6
⏰ 2–4 PM
📍 DPOC Office – 516 W College Avenue, Appleton
Join us for an afternoon of cookie decorating, holiday card crafting, and community connection.
Kids play, adults connect, and everyone leaves a little sweeter!
📅 Friday, Dec. 6
⏰ 2–4 PM
📍 DPOC Office – 516 W College Avenue, Appleton
December 1, 2025 at 6:30 PM
Holiday Progressive Playdate!
Join us for an afternoon of cookie decorating, holiday card crafting, and community connection.
Kids play, adults connect, and everyone leaves a little sweeter!
📅 Friday, Dec. 6
⏰ 2–4 PM
📍 DPOC Office – 516 W College Avenue, Appleton
Join us for an afternoon of cookie decorating, holiday card crafting, and community connection.
Kids play, adults connect, and everyone leaves a little sweeter!
📅 Friday, Dec. 6
⏰ 2–4 PM
📍 DPOC Office – 516 W College Avenue, Appleton
Reposted by Caffeine, Chaos, and Taylor
Hunger’s rising in Wisconsin. Families were stuck in limbo as SNAP benefits run out due to the ongoing GOP shutdown, leaving kids and working families going hungry.
Read the full story → NBC26: Hunger on the Rise
💙 Take action → OutagamieDems.org
#OutagamieDems #FoodShare #SNAP #WisconsinFamilies
Read the full story → NBC26: Hunger on the Rise
💙 Take action → OutagamieDems.org
#OutagamieDems #FoodShare #SNAP #WisconsinFamilies
November 10, 2025 at 6:02 PM
Hunger’s rising in Wisconsin. Families were stuck in limbo as SNAP benefits run out due to the ongoing GOP shutdown, leaving kids and working families going hungry.
Read the full story → NBC26: Hunger on the Rise
💙 Take action → OutagamieDems.org
#OutagamieDems #FoodShare #SNAP #WisconsinFamilies
Read the full story → NBC26: Hunger on the Rise
💙 Take action → OutagamieDems.org
#OutagamieDems #FoodShare #SNAP #WisconsinFamilies
Reposted by Caffeine, Chaos, and Taylor
Our plan is to keep fighting for lower costs, for stronger communities, and for leadership that earns trust through action, not words.
#senatevote #shutdown #outagamiedems #protectourfuture #AffordableCareAct #SNAP
#senatevote #shutdown #outagamiedems #protectourfuture #AffordableCareAct #SNAP
November 10, 2025 at 10:01 PM
Our plan is to keep fighting for lower costs, for stronger communities, and for leadership that earns trust through action, not words.
#senatevote #shutdown #outagamiedems #protectourfuture #AffordableCareAct #SNAP
#senatevote #shutdown #outagamiedems #protectourfuture #AffordableCareAct #SNAP
Part 1: Origin Story
When my son was born we had no idea what his little boys would be put through all before turning one. Follow along for the full series. #rarediseasecaregiver #cystinosis
When my son was born we had no idea what his little boys would be put through all before turning one. Follow along for the full series. #rarediseasecaregiver #cystinosis
October 30, 2025 at 12:18 AM
Part 1: Origin Story
When my son was born we had no idea what his little boys would be put through all before turning one. Follow along for the full series. #rarediseasecaregiver #cystinosis
When my son was born we had no idea what his little boys would be put through all before turning one. Follow along for the full series. #rarediseasecaregiver #cystinosis
Here comes the hate. Food is a human right. I’ve paid taxes my whole adult life and I’m okay with them feeding families who need food. Now that we are in that category I understand even better the immense need for this program. #SNAP #rarediseasecaregivers
October 30, 2025 at 12:00 AM
Here comes the hate. Food is a human right. I’ve paid taxes my whole adult life and I’m okay with them feeding families who need food. Now that we are in that category I understand even better the immense need for this program. #SNAP #rarediseasecaregivers
Reposted by Caffeine, Chaos, and Taylor
Still buzzing, Appleton 🙌🍎 Spot yourself in the crowd? Tag yourself then click over to OutagamieDems.org to stay plugged in #NoKings #NoKingsAppleton
October 26, 2025 at 5:02 PM
Still buzzing, Appleton 🙌🍎 Spot yourself in the crowd? Tag yourself then click over to OutagamieDems.org to stay plugged in #NoKings #NoKingsAppleton
Over/under on egg prices in November? What are you doing to prep and stock up? Even if you’re not on SNAP, we’re all going to feel this one.
If you are able please donate to your local food bank. #governmentshutdown
If you are able please donate to your local food bank. #governmentshutdown
October 26, 2025 at 1:47 AM
Over/under on egg prices in November? What are you doing to prep and stock up? Even if you’re not on SNAP, we’re all going to feel this one.
If you are able please donate to your local food bank. #governmentshutdown
If you are able please donate to your local food bank. #governmentshutdown
My little #CystinosisWarrior and some of the people who love him.
Instead of focusing on what he’s not, here’s what Oliver is. He is smart, he is witty, he is kind, he is interesting, he is stylish, and he is worthy of a life of dignity. #savemedicaid #rarediseasecaregivers
Instead of focusing on what he’s not, here’s what Oliver is. He is smart, he is witty, he is kind, he is interesting, he is stylish, and he is worthy of a life of dignity. #savemedicaid #rarediseasecaregivers
October 26, 2025 at 1:14 AM
My little #CystinosisWarrior and some of the people who love him.
Instead of focusing on what he’s not, here’s what Oliver is. He is smart, he is witty, he is kind, he is interesting, he is stylish, and he is worthy of a life of dignity. #savemedicaid #rarediseasecaregivers
Instead of focusing on what he’s not, here’s what Oliver is. He is smart, he is witty, he is kind, he is interesting, he is stylish, and he is worthy of a life of dignity. #savemedicaid #rarediseasecaregivers
Replying to a comment: long story short, when the monthly budget doesn’t add up and certain meds cost more for one month than a full years salary… then it’s time to get both creative with your budget and patient with red tape in the systems. #medicallycomplex #caregiver
October 10, 2025 at 9:05 PM
Replying to a comment: long story short, when the monthly budget doesn’t add up and certain meds cost more for one month than a full years salary… then it’s time to get both creative with your budget and patient with red tape in the systems. #medicallycomplex #caregiver
Oliver’s feeds: 7 syringes x 65mL x 4 feeds/ day. His tolerance of this is up, but one little sniffle, a planet in retrograde (probably), or his mood can cause more puking. But the data/ growth charts say this cadence is working. He is growing, labs are good. #cystinosis #rarediseasecaretaker
October 8, 2025 at 6:56 PM
Oliver’s feeds: 7 syringes x 65mL x 4 feeds/ day. His tolerance of this is up, but one little sniffle, a planet in retrograde (probably), or his mood can cause more puking. But the data/ growth charts say this cadence is working. He is growing, labs are good. #cystinosis #rarediseasecaretaker
Being a rare disease caregiver means every small break is a big deal. The pool of resources available is always appreciated, handled carefully, and the priority is Kiddo/Medical/Bills, then verrry last: me. The hate is coming, but thats why its important to talk about, break the stigma. #RareDisease
October 7, 2025 at 5:20 PM
Being a rare disease caregiver means every small break is a big deal. The pool of resources available is always appreciated, handled carefully, and the priority is Kiddo/Medical/Bills, then verrry last: me. The hate is coming, but thats why its important to talk about, break the stigma. #RareDisease
We celebrate half chewed goldfish in the couch cushions around here and measure the success of the meal by the chunks in the puke, because despite better tolerance puking feeds is still very much a daily occurrence. #raredisease #caregiver
October 7, 2025 at 5:18 PM
We celebrate half chewed goldfish in the couch cushions around here and measure the success of the meal by the chunks in the puke, because despite better tolerance puking feeds is still very much a daily occurrence. #raredisease #caregiver
Reposted by Caffeine, Chaos, and Taylor
As I was saying…
Jimmy Kimmel is Back!
YouTube video by Jimmy Kimmel Live
youtu.be
September 24, 2025 at 4:27 AM
As I was saying…
Reposted by Caffeine, Chaos, and Taylor
When someone asks you how you are....
September 24, 2025 at 3:37 PM
When someone asks you how you are....
September 23, 2025 at 9:12 PM
Reposted by Caffeine, Chaos, and Taylor
Passionate about supporting Democratic values & want to make a real difference locally? We’d love to have you on the team! #TakeAction #DemocraticParty
✍️ Content Writing
🎉 Event Promotion
🎨 Graphic Design
🖌️ Art & Illustration
📸 Photography
🎬 Videography/Video Editing
💻 Website Coordination
✍️ Content Writing
🎉 Event Promotion
🎨 Graphic Design
🖌️ Art & Illustration
📸 Photography
🎬 Videography/Video Editing
💻 Website Coordination
July 29, 2025 at 6:03 PM
Passionate about supporting Democratic values & want to make a real difference locally? We’d love to have you on the team! #TakeAction #DemocraticParty
✍️ Content Writing
🎉 Event Promotion
🎨 Graphic Design
🖌️ Art & Illustration
📸 Photography
🎬 Videography/Video Editing
💻 Website Coordination
✍️ Content Writing
🎉 Event Promotion
🎨 Graphic Design
🖌️ Art & Illustration
📸 Photography
🎬 Videography/Video Editing
💻 Website Coordination
My 2yo son has a rare genetic disorder called #nephropathicCystinosis this is considered a #lysosomalstoragedisorder meaning his cells don’t properly dispose of a protein called cystine and when that builds up it creates crystals which cause organ damage. #caretaker #raredisease #momlife #cystinosis
July 25, 2025 at 4:44 PM
My 2yo son has a rare genetic disorder called #nephropathicCystinosis this is considered a #lysosomalstoragedisorder meaning his cells don’t properly dispose of a protein called cystine and when that builds up it creates crystals which cause organ damage. #caretaker #raredisease #momlife #cystinosis