It’s ok to let a doctor’s office know you are a medically complex patient and to request that they book you for more than the regular amount of allotted time. #Zebra #RareDisease #MedicallyComplex #DisabledLife

Abled comfort is not more important than the disabled being heard and getting support.

Even casual ableism can have devastating consequences. Work on your empathy and compassion.

#ableism #spoonie #disability #chronicillness #medicallycomplex #chronicallyill #disabledmodel #disabledartist

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

A woman rests, sitting up on a hospital stretcher looking at the camera with an oxygen canula in her nose and a colorful headscarf pulling her brown curly hair back.

Early morning surgery
- fingers crossed🤞

If successful, we'll be doing this procedure every few months

#Dysphagia
#Botox #Collagen

#MedicallyComplex
#22q11

Please Presume Competency Every parent wants to help their child, regardless of their abilities be their best. However at times the education system and IEP goals do not presume competency.

Every parent wants to help their child be their best, regardless of their abilities. However, the education system and the process of setting #IEP goals can feel defeating when a child is #medicallycomplex.

courageousparentsnetwork.org/blog/please-...

a sticker that says I Got A Thicc Chart & I Cannot Lie in a gradient font color of pinks and teals. A set of files with an anime style face on it is in the middle of the text

Who else has a thicc chart? Likes and shares are always welcome on this design, as well as the other items in my shop! www.etsy.com/listing/4304... Thank you so much for the support! #Disabled #Disability #ChronicallyIll #ChronicIllness #CancerSurvivor #MedicallyComplex

The kiddo wasn't scheduled to perform, but decided she fancied it, so she negotiated herself a last-minute signing spot for the last song! #camdenmusicfestival #bsl #Camden #deaf #inclusion #tracheostomy #proudmama #medicallycomplex #deafgirl #bslchoir #signlanguage ##royalalberthall #rah

photo of sticker that says "tube fed and well read" made for others using a feeding tube.

one of my most popular stickers, inspired by being NPO/tube fed for over 6 mo. in 2021 recovering from an esophageal-aortic fistula. No purchase needed, giving it a like on my shop is enough! #disabled #disability #tubie #zebra #medicallycomplex #ehlersdanlos #eds #heds www.etsy.com/listing/1739...

Well, kidney surgery recovery was ok until Wednesday. I’m in urgent care with what looks like a kidney infection. Waiting on the rest of the labs to see, and then I’ll get meds. Not the news I was hoping for, but it explains my symptoms. #immunosuppressed #medicallycomplex #zebra #chronicallyill

a medical id button and a sos button are shown ALT: a medical id button and a sos button are shown

Pssst .... Update your/your child(ren)'s #MedicAlert bracelets, #EmergencyApp, #EmergencyContacts, etc. & back up your #MedicalRecords ( #DigitalCopies #Smart911 #PersonalFiles #PersonalDocuments)

#ChildrenWithDisabilities #DisabilityCommunity #SupportNeeds #MedicallyComplex #MedicallyFragile

Still inpatient and having a #swallowstudy early Monday morning 🩻 🗣️

Then, this #medicalmom predicts, the big #NPO talk 😫with the #SpeechLanguagePathologist and her doctors before 🏥 discharge on full #jtubefeeding

#medicallycomplex
#familycare
#homecare
#dysphagia
#22q11

Replying to @Caroline and Claire❤️ YES. TikTok video by stephrunsherlegsandmouth

TLDR: Apparently "presume competence" only applies to them, not all us rando illiterate unwashed peasants.

#Moms #Mothers #Caregivers #KinshipCare #RelativeCaregivers #MomLife #Parenting #WhiteSaviorism #Ableism #DisabledChildren #MedicallyFragile #MedicallyComplex

www.tiktok.com/@stephrunshe...

a picture of pink flowers with the words hello march written on it ALT: a picture of pink flowers with the words hello march written on it

Maybe it's all the coffee I drink during Zoom trainings but I swear I get out of these sessions feeling so optimistic, rejuvenated, and re-committed to #CommunityCare and #CommunityBuilding through supporting #Families of #MedicallyFragile #MedicallyComplex, and #DIsabledChildren.

Foreign trip 15 with our trachy daughter Freya. #Stargazing in the #desert #sharmelsheikh #Egypt #trachy #tracheostomy #bsl #signlanguage #medicallycomplextravel #trach #medicallycomplex #deaf #deafgirl #deaftravel

Look at my new hat! 😍

A wonderful deaf/blind creator from IG made it for me.

IG: @blindlove.woodburning

#advocate #blind #deaf #medicallycomplex #nystagmus

January 27th, we will celebrate Leilani Reign. To honor her, we ask that you join us & wear your favorite Tiara and help bring awarenesss to the dangers of Pediatric Traumatic Brain Injury.

#inclusivity #Accessability #support #TBI #MedicallyComplex #SPED #accessability4all

3. If you do have a major medical event, you can pay a lot out of pocket even with great full coverage.
4. Not everything that is needed is covered, you will pay out of pocket AND have it not count towards your maximum.

I know because all of these things happen to me every year.
#medicallycomplex

I prioritize my daughter's needs differently depending on who and what my listener generally relates to most.

Health care in medical, community and home settings is always at the top of her needs.

#disability #medicallycomplex

Hawaiian superstar Anuhea's Moyamoya Disease PSA YouTube video by Ray Sinsay

#MoyaMoyaDisease #Aloha #StrokeAwareness #BrainHealth #music #healing #medicallycomplex #Anuhea #aphasia #raredisease #neurology #Hawaii #Anuhea #lotus #musicishealing #brain #neurovasular #neurosurgery #sandiego #stanford