This gene targeted chemo better work, istg... 🥴

I started looking at lace wigs ngl Video Description: Samantha showing green screens of her hair before vs during the botched haircut vs then showing how the haircut came out.

Not the powerhouse of the cell 🥴 Video Description: Samantha laying down, wearing striped pj's with an oversized collar, talking about her diagnostic journey and getting hella genetic testiNg

Now I know why my pain mgmt always told me "your 4 is most people's 10" LMAOOOO 💀 Video Description: Samantha wearing hair rollers with red lipstick and red sunglasses. The text overlay reads "me retrospectively realizing my pain was way worse than I realized now that my pain is actually control

It's hard enough living with chronic pain. The stigma makes it worse. Video Description: Samantha in her car talking to the camera. She's wearing hair rollers, red lipstick, and red sunglasses with a halter dress #ChronicPainAwareness #IntrathecalPainPump #ChronicPainLife #Intractabl

The crunching noise... Girl. Video Description: Samantha taking out pink hair curlers and struggling.

Replying to @Jaclyn answered: are intrathecal pain pumps new technology? Video Description: Samantha laying down and talking to the camera. She's wearing red lipstick. #IntrathecalPainPump #IntractablePain #ChronicPainAwareness #PainPump

Replying to @Leigh Sugar my theories about Maffucci syndrome and Olliers Disease having association with Ehlers-Danlos Syndrome 👀

Some people point to the fact that I’m functioning more right now as “proof” that I must not be dealing with the level of health issues I do. So, let’s clear something up: functioning is not the same thing as being pain-free. I live with intractable pain, which means pain so severe that it does

Replying to @Debbie Beedge At midnight, the night before a wedding I was attending alone, I lost the dress I was supposed to wear. So, I did what any rational person would do: I went to my pain pump appointment, begged my doctor for a dose adjustment, had my device break and get fixed, came home… a

At midnight, the night before a wedding I was attending alone, I lost the dress I was supposed to wear. So, I did what any rational person would do: I went to my pain pump appointment, begged my doctor for a dose adjustment, had my device break and get fixed, came home… and made an entire dress fro

Who thinks I should make this dress? 👀 Video Description: Samantha draping an orange fabric over her body to mimic a dress. The text overlay reads "Me contemplating making a wedding guest dress from scratch for a wedding tomorrow, at the last possible moment the night before, after I lost the dr

Almost 6 weeks on gene-targeted chemo for my ultra-rare disease. My dad told me he thinks my tumors are shrinking because I’m visibly in less pain and also smiling more. I can’t even put into words how much that means to me 🥺💫 Video Description: Samantha in her car talking to her dad. The text

DIY Ring Splints Tutorial ✨💍 Okay icons, welcome to my little corner of the internet where fashion and chronic pain management hold hands like soulmates. Today we’re diving into DIY ring splints (aka the cutest way to keep your hypermobile joints from acting out) 💅 If your fingers love to ben

Why is this so hard for people to not only understand, but to care about my life and health? Video Description: Samantha is outside in her backyard, wearing a lemon-y blue two piece strapless top + maxi skirt set that she sewed herself. She's wearing red lipstick. Her dark hair is up in a bun a

I was literally about to put my magnetic eyelashes on to finish this makeup look 🥴 #MakeupTok #MakeupLife #Sneeze

The most powerful love story is Disabled girlies realizing they never have to settle. We are worthy of the romance, the dream, the everything ✨🕊️ Video Description: Samantha and her boyfriend having a romantic & cinematic moment straight out of a movie. Her outfit is extra, maximalist, and all w

Replying to @wedont_deservedogs this would change the trajectory of my lifeeee

I almost gave up on sewing. Between the pain, burnout, and learning curve… I really thought I was done. But today, I left the house (rare) wearing something I made. I used a pattern from @Etsy for this one (usually I design my own), but I just needed something soft and joyful for a hard d

Made a shirt for the baddies with chronic back pain 💅 dropping this weekend on my merch brand @Thanks Icon™️ 💄💋 Video Description: Samantha wearing her iconic baby blue Chronic Back Pain Club crop top from her brand Thanks Icon. The text is glittery white and in a maximalist fonot. The back of t