Welcoem to posts!!
in the future - u will be able to do some more stuff here,,,!! like pat catgirl- i mean um yeah... for now u can only see others's posts :c
Recently, my friend @AaronBlocker and his story were used for a @MrBallen 'Medical Mysteries' podcast episode - except Aaron was never contacted nor consulted about this. Details of Aaron's story with hypophosphatasia (and Crohn's) were incorrectly shared, which is quite disappointing as Aaron is an incredible patient advocate sharing his experience to create awareness. I wish MrBallen had consulted with Aaron to confirm details rather than use it for 'entertainment'. There is an opportunity to consult with Aaron about HIS story to not only create an engaging podcast, but also to educate about the rare disease community. I hope this can be rectified swiftly!
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I have to share with you the difference a couple of days made using the StomaCloak! When I wear my favorite high-waisted bike shorts & I haven't thoroughly dried my ostomy, I get an irritating fungal rash under my appliance. I wanted to see if using the StomaCloak would help keep enough moisture off of my skin to prevent it from getting worse!
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https://youtu.be/5VitaNovsj8
Tonight, I am sharing the transition I have had over the last few months going off of IV fluids!
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Tonight's YT video is my honest advice to those facing proctocolectomy surgery. I've gotten a number of messages specifically asking for tips and advice for preparing. If you're curious about this, you can find the full video here: https://youtu.be/_7QU4sXe-TE
#proctocolectomy #panproctocolectomy #proctectomy #colectomy #ostomy #permanentostomy
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If you saw my recent video, I took one of my swimsuits to the beach! And my StomaCloak came with me 🙂
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Just shared a video of this summer's picks for swimsuits. Are they completely ostomy-friendly? Eh, but they make me feel confident! https://youtu.be/Hhf8lPG5Ihs
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I wanted to share some of the ways I have been healing and moving forward mentally after April's ectopic pregnancy loss. I share some of it in tonight's video! https://youtu.be/s9qTz_apY6E
Thank you to all of the wonderfully kind comments left on Tuesday's post. ♡
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30 was quite the year! It was filled with success and heartbreak, but we survived! Time to thrive with 31 :)
Thank you so much for all of the warm wishes on my recent videos! 🩷
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Living beyond disease - it isn't about ignoring your illness, but it also isn't about living in darkness. It's the active work a person does to balance their chronic disease health and their ability to do what they chose with their lives. It is almost never picture-perfect, but its so worth it, I cannot tell you how thankful I am to share my "living beyond disease" with you!
♡ Maggie