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What an amazing surprise to get today! Meran, you are the sweetest! This could not have come at a better time. ❤️ This beautiful necklace was made by Jamie Rage at @delightandrage. She is also amazing and super sweet! Thank you for creating the perfect necklace for me. I can feel the love that was put into making this. I LOVE it so much! Thank you both! ❤️❤️ #sharkiesunite #handmade #etsyjewelry

I just want to apologize to everyone who has written me, or called me in the last few years. I seriously have over 100 voicemail messages, countless emails and private messages, that I’ve never listened to or read. I don’t mean to blow off everyone, I’m just so sick, and most of the time it is so hard to focus. What was once an easy task (like listening to a voicemail) feels impossible, I don’t want to do it until I know I can respond, and then they pile up and I feel overwhelmed. I feel really guilty about it and I’m so sorry, it’s me being sick! So if you need me and I’m not getting back to you, please get ahold of my husband Thano. He will let me know any important messages. ❤️ #chronicillness #pseudoxanthomaelasticum #pxe #pixielife #lifeofapixie

Today was the first day I was able to leave my house in almost a week. My pxe flareups have kept me inside. I hope I can get out more often, sitting inside is getting old. I want to be able to enjoy where I live. ❤️ #home #tahoe #southlaketahoe #California #winter #snow #mountains #getoutside #chronicillness #pxe #pseudoxanthomaelasticum #spoonie #pixielife #lifeofapixie

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