What is FDMAS? FDMAS stands for Fibrous Dysplasia / McCune–Albright Syndrome. It’s a spectrum of a rare genetic condition caused by a post-zygotic (mosaic or in-utero) mutation in the GNAS gene. What it is Fibrous Dysplasia (FD): Normal bone is replaced by fibrous (scar-like) tissue, making bones weaker, prone to deformity, pain, or fracture. It […]
FDMAS Awareness Week 2026 Read More »
Expert-Backed Resources For Spoonies to Share with Your Doctors, Friends, and Family Who Think You’re Overly Cautious Talking with other Spoonies, like my friend in Australia who is struggling with particularly vicious Long Covid, I realized that it’s past time for me to post some helpful resources for spoonies. With COVID-19 long off most healthy
5 Helpful Resources for Spoonies Trying to Stay Healthy Read More »
In the past few days I’ve tried my best to avoid politics, news, and anything else that provokes panic. Instead of doomscrolling, I’ve watched hours of Terry Pratchett’s Discworld series (delightful and available free on Prime right now), calmly researched my newest diagnosis from the cardiologist, and focused on living in the moment, not thinking
Relaxing Glimmers for a Post-Election America Read More »
https://youtu.be/ZoMMu1_i9Gw Today was the first day I put on a little makeup (some powder foundation) and some mascara since before surgery. Also, I won an Apple Watch from Oklahoma Chronic Magazine by posting some of my purchased medicine to Instagram and tagging the relevant dispensary for each photo (where I got the medicine)…next month’s promotion
Post Surgery Update – Improved Face Movement Read More »
https://youtu.be/kaMS_hTKblg Yep, I’m scared to get my head wet after a recent craniotomy to remove an egg-sized fibrous dysplasia near my ear and jaw (benign, so NO cancer detected!). I’m really afraid of fainting and potentially hitting my head so soon after surgery (just under 2 weeks since I was under the knife for about
Woman Terrified to Wash Hair Post Head Surgery Read More »
https://youtu.be/Zpe3XUG6fHY For the newest update video, please click on the video above. Video Transcript: “Hi everyone! It’s only a few more days until Neo levels up and leaves the matrix for good. I’ve been cleared for surgery after last week’s and yesterday’s pre-op tests so finishing some light cleaning around the house and trying to
Only 2 Days Until Neo Leaves the Matrix! Read More »
https://youtu.be/5IQDzgEQ9O8 See the above video for the latest news about scheduling the craniotomy. Video Transcript: Hi everyone. This morning was rough–got up really early, took Don to go get his surgery so his kneecap is back in place. Everything’s good, he’s recovering well after surgery and he’s gonna be up and walking before you know
Surgery is SCHEDULED! Read More »
See the video above for the latest news. Video transcript According to Ashley–Dr. Dunn’s nurse–the final paperwork to approve my replacement skull flap is on Dr. Dunn’s desk, ready for signing. She is also coordinating with the three surgeons to find a date that works for all three. Once the surgeons agree on a date
Getting Closer to Setting a Surgery Date Read More »
https://youtu.be/Gfv6SzJaJA0 See the video for the latest news. Video Transcript Hi, Hat Lady Nicole here. No news yet–we’re waiting on the doctors to set the schedule for the surgery. Haven’t heard back on that yet but they are working on my replacement skull plate so that should be done soon– hopefully within the next month.
https://youtu.be/6iq1JSVi214 Don and I met with Dr. Alex Bien, a highly-recommended Ear/Nose/Throat doctor with a specialty in middle ear surgery. Much of the appointment was spent going over my medical history in detail (that’s the majority of what I cut from the video, to avoid repetition), as Dr. Bien is very thorough, which Don and
ENT Surgeon Appointment Read More »
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