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@adaptivemagic

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SF Bay Area NorCal 🌲
I talk fashion and accessibility 💚
Whimsical Wheely Wizard 🪄
Sparkles make everything better ✨
CURE CMT4B3

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You can put bows on your braces, by the way. Try it, it's fun 🧸

#CMT #charcotmarietooth #disability #AFOs #orthotics by @adaptivemagic

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3 days ago

I bought this cute little "port cover" from @turkeytotcustoms thinking it looked perfect for my high flow cannula. And it is, look how cute!! Just thought I'd share. Genuinely makes wearing this thing a lot comfier and interestingly it's been absorbing sweat well too.

#adaptive #cmt4b3 #charcotmarietooth #neuromusculardisease #autumnfashion by @adaptivemagic

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a month ago

For me, sketching & other art-on-paper media has been difficult to attempt ever since CMT started eating away at the nerves in my fingers & hands. Because I now have claw-hand contractures, holding a pencil is tricky to make work because of stability challenges and soreness. The device I'm using to sketch some trees here is called Guided Hands, which is a brilliant solution dreamed up by @imaginable.solutions and uses a tracking arm system much like the arm of a sewing or quilting machine to glide your writing utensil across the paper at the control of your shoulder and elbow rather than wrist and fingers.

This is the beginning of a painting, and I expect I'll use a mix of gouache & acrylic. I had a beautifully mysterious but slightly jarring dream recently that I have not been able to get out of my head, but thanks to this device I will be able to pour it out onto paper. by @adaptivemagic

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2 months ago

yeah idk i got nothin

still working on finding a better venue for my compass gala hopefully i have the energy to make it happen in the next month or so by @adaptivemagic

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3 months ago

I got to see The Fray @thefray live in Oakland and truly after a year where nothing good seemed to happen I had one of the best nights of my life. I was able to share my love of glitter with the band and even though I can't sing that well anymore I still belted my heart out. On the third slide is a video of myself singing one of their songs, before the cardiac arrest, before the coma and tracheal resection, before the respiratory failure, when I was able to sing the way I wanted. Their songs were my favorite to practice. I still try to sing sometimes, I hope there is a cure or something someday so that I can do it again. CMT sucks, Porphyria sucks, The Fray rocks. by @adaptivemagic

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3 months ago

Old photo since I'm currently bedbound but I wanted to just say hi hi I am alive I'm here just sleepy. I'm working on a lot here in the background and also hoping to get my etsy up and running soon 🙂‍↕️

Somehow there's been a measles outbreak in my city (?!) so I am also a little stressed about that because despite being vaccinated for it it's freaking MEASLES 😭 by @adaptivemagic

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4 months ago

If you know me you know I LOVE a good accessibility hack. Well, earlier this year, I bought an ergonomic positioning device called the CabSupport M3 on a whim. I was drawn to it because it's the first one like it I've seen with lateral (side) trunk supports. I quickly realized that because of its universal fit, I was able to effortlessly attach it to any wheelchair. I also realized it is compatible with a chest strap. This is a GAME CHANGER. It's literally like an entire rehab positioning system all in one that can be retrofitted to use on all sorts of mobility aids. Because it is designed to be used anywhere and has no legs, I have been able to use it to sit up in my bed and on the floor, and that's something I haven't been able to do independently for quite a while.

After realizing how useful it is for disability related uses, I emailed the company (@cabevibe_official) to just let them know how helpful it was and that their product doubled as a positioning device for those with disabilities. I mentioned that I thought it would be really awesome to develop a version with a thicker cushion so that it could be used as an all-in-one wheelchair seating system. They were immediately responsive! I asked them for some printed promotional materials so that I could spread the word at an event I'm hosting this summer (more on that later!). Not only did they do that, they offered to send me the rest of their lineup so that attendees could make sure they knew which model worked best for them. They also provided three M3s to give back to the community through the event. We discussed the possibility of a waterproof option, to be useable as a bath or shower chair.

And they came through!!! They have developed a new version of the M3 with a padded seat. It can be used as a positioning system on a wheelchair, or a standalone unit. My M3 was $70- pennies compared to the exorbitant prices a rigid backrest, laterals, and cushion would have cost me. All in all this company is one of the coolest groups of people I've ever talked to. And if you want an M3 of your own, you can use the code "Fern" for $10 off ✨ by @adaptivemagic

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5 months ago

I wanted to do a little series of posts about the medical treatments that have made a difference in my life- it's my hope that someone else with porph or neuromuscular conditions might learn something new that could help improve their quality of life.

So here's the first!

I use a machine called the Breas Vivo 45ls, which is a portable ventilator. It *can* be used for life support, CPAP, biPAP, but I use a setting called High Flow Nasal Therapy (HFNT). My chest wall is pretty weak and my trachea & bronchioles are not rigid enough, plus, I had to get a few inches of my trachea removed because it had developed horrible scarring that was starting to choke me. Usually for people with this kind of issue, continuous biPAP or AVAPS is what they use to stent their airways open and support their respiratory rate. At first, I was prescribed that method, but eventually my pulmonologist (who I love, shout-out Dr Uma you rock) brought up the idea of HFNT. She discussed with me that utilizing it could help me stay off the ventilator for longer by making me do a little bit of the work of breathing myself.

So during the day, that's what I do! It's great to be able to wear such a small mask/cannula. The machine provides constant, steady high pressure airflow, stenting my airways open and helping with inhalation. I am the only person I know who is on HFNT, and my pulm's first patient on it. I'm not sure why it isn't more common, honestly. It's a really great solution for those who are having respiratory weakness but aren't in need of full time ventilation. It has nearly eliminated my hypercapnia-induced migraines and improved my baseline oxygen level. If you think HFNT might be helpful for you or improve your quality of life, see if you can talk to a pulmonologist about it! And if you'd like to know more about how it works and experience with it, totally reach out to me so I can give you the details! 🫶🏼

P.S. my DMs are always open for respectful questions and connections. I am an open book and the entire reason I decided to get on Instagram was to put my ideas and advice out there so that those in the same boat could find more quality of life resources! by @adaptivemagic

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5 months ago

These past few months have been nothing but stressful so today I didn't do makeup, I didn't brush my teeth, I didn't even get out of bed. Blood disorders are really frustrating to manage and live with and sometimes life needs to be put on hold to tackle the things that come with it. After my coma in 2024, I've never been able to get back to the same level of functioning as before it. It is really hard to sit here watching my quality of life go down and being unable to do much of anything about it.

That said, I've been sitting on an announcement for a WHILE and I feel like it's time to share: come the 31st of this month, I'll finally be opening an Etsy shop. I have developed a collection of accessories and clothes inspired by fantasy literature and adaptive to many disabilities. I have been fed up with the lack of truly whimsical adult adaptive products. Right now there really aren't adaptive ballgowns or ren faire costumes or reticules or...need I go on? In the next few days I will share more and I will also be doing a prelaunch giveaway as a thank-you to all of you 🤎

Tags- #disability #neuromusculardisease #metabolicdisease #wheelchair #wheelchairuser by @adaptivemagic

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5 months ago

I had an amazing time at the @abilities_expo down in Long Beach. The drive was well worth it. I met so many awesome people and saw so many awesome innovations. I got to try walking, thanks to @amylior.inc and their Grillo gait trainer exhibit. I got some super useful gripping tools from @abilitease. I even got to meet the genius minds behind @makegoodnola! If you have an Expo location within reasonable distance, this is an event I would 100% recommend going to. You will make meaningful, lasting connections and find resources you didn't even know about! Best weekend of my LIFE. by @adaptivemagic

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7 months ago

Trying new eyeliner! Sorry I don't have much else to say 🥲 by @adaptivemagic

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7 months ago

🛏️🌙 🌃

#disability #accessibility #chronicillness #neuromusculardisease #wheelchairuser by @adaptivemagic

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8 months ago