My disease recently progressed a lot, leaving me with a difficult decision, deciding to go on hospice.
This lovely man is my best friend, and together we are going to live the rest of my life, including getting married.
I move to the hospice center on December 26th where I’ll spend my final days, or hopefully weeks.
Once on hospice I will stop receiving all treatments. I will no longer have hospital trips, and my pain will be managed.
It’s difficult to process but I’m glad to have so much support
i check in with you and your socials every single day and this news just shatters my heart, but i am simultaneously so very excited for your well-deserved, eternal reign in peace and ever-lasting glory.
congratulations on your wedding, you and your best friend are absolutely glowing!
please, as your energy and time allow of course ♡, keep us informed about your thoughts, short-term goals, dreams, fears, and any and everything you want or need throughout this next step. you are not, and have never been, alone, and we all would love to hear from you for as long as we possibly can. i am so grateful for you and all of the light you have shared xx
I’ll do my absolute best.. pinky promise 😉
My sweet friend Rose. I have watched and listen to your story for over a year now. I remeber when you needed alcohol wipes and i told tou id send them. I still have your sweet message saved. You are the most loving human i have ever met. Even on your hardest days your kind spirit was always seeing the bright side. I will always remember you dancing in pjs your love for others and most of all your strength. Forever my pj dancing friend. Ill look for you in the sky.
aw, thank you so much for the reply, sweet girl :’) ♡
i just wanna clarify in regards to my last comment: as much as i love hearing from and seeing you as often as we all possibly can, especially now, *please* don’t in any way feel the need to pressure yourself to spend this precious time you have left here doing anything less than what you 100% want to be doing at each and every given moment ♥︎, if that means logging out of socials completely, do it — if it ever inhibits your happiness, then social media be damned; or if it means sharing new posts several times per hour, do it! we never ever tire of you ofc. ♥︎ but no matter what, please please please spoil you and your dearest loved ones with as much time and energy as God is giving you, and (only as a suggestion, ultimately do whatever feels right to you) maybe even try to rely on social media as just *your* support system; in other words, please don’t ever feel pressured to support any of US any more than you already generously have, no matter how much we truly miss and adore you and your content. ♡ make sure you unapologetically plug ALL of the ways we can lavish you, from a safe distance, in: love, financial support, gifts, wishlists, you name it. in my opinion, it’s the absolute least the public can do in return for the relatable, preciously vulnerable moments you’ve shared online; your monumental contributions to the advancement of science by subjecting your body, in its rare condition, to all of those invasive, uncomfortable tests – not only to fight for yourself and for your family, but for the greater good of those just like you ♡; and for the invaluable lessons you’ve taught just by living through an unimaginably difficult circumstance with your unique form of SPS, bravely and boldly in the public eye. you are such a fearless icon of pure-hearted resilience and impossible to comprehend inner-strength, and inner light. you are the truest beacon of hope, down to the very end.
as far as sharing your journey goes, you’ve clearly already done above and beyond your “best” for SO many of us in the world, please know this, forever and always. you’ve provided hope, peace, wisdom, and education that will last several lifetimes on this earth, and then several more; you will NEVER be forgotten. 🌹🌹🌹
sincerely, rose, thank you, from the bottom of my heart, for putting into such insightful words and thoughtful content, sooo many of the thoughts and feelings those of us with trauma, chronic/terminal illnesses, and mental health issues face on a daily basis. thank you for choosing not just to live, but to truly truly thrive 🌹👑 and also lift so many people up along with you. in sharing your inner most feelings so vulnerably and transparently, i can personally attest that you’ve seen me and picked me up from a very dark, lonely place without even realizing it.
i do not know you personally, but i love you and i cherish you and i will miss you, unwaveringly.
p.s. as my sister in the progressive, inclusive, and unconditional act of loving Christ ✝️, i truly cannot wait to see you on that other side; i can only hope for myself, of course. idk about me lol, but paradise is exactly where you belong, forever. 💝
I wish I could hear your sweet voice and see your outfit for the day. I feel like ive lost my sister.
miss Rose you are a very special person I’m happy your able to do things your way. I can visualize you running up in heaven in beautiful grassy field. It was a nice to meet you on social media
God bless you on your journey. I’m praying it’s a smooth transition and you’re no longer suffering. You have a beautiful spirit n soul. Stay strong keep fighting. God bless
Hey rose this mystical dimples know as tangie I am one mod on TikTok you be very miss and throught about I love you I pray that you be in no more pain
Thank you Tangie
Thanks for joining me
Thinking if you rose and hoping the transition will be pain free and simple, and you’ll be free to run wild ina feild of flowers into eternity…you have been such a sweet soul to have followed on TT, I admire your strength and dignity…May the other side be all you’ve hoped for…you are so loved across the globe! Rest easy and wake up ready to take on whatever’s in the afterlife…stay beautiful as always. PEACE BE WITH YOU AND ALL WHO LOVE YOU!
Ah, a field. Freedom
God bless you on your journey. I’m praying it’s a smooth transition and you’re no longer suffering. You have a beautiful spirit n soul. Stay strong keep fighting. God bless
Thank you so much. I will use every bit of strength I have to create lasting memories
Hey rose this mystical dimples know as tangie I am one mod on TikTok you be very miss and throught about I love you I pray that you be in no more pain
Good to have you
You’re a lovely soul, and I wish you an incredible wedding day, and absolutely beautiful and comfortable hospice journey. I’m in your live right now, and it’s wonderful to see you. Thank you for your open and gracious heart, and your unconditional love you show to the community.
Thank you so so much!!!
Hi Rose, this is Mary, your hairstylist. I’ve also sent a text. My daughter has shared with me your story, I’m sad that everything changed so quickly. If there’s anything I can do to help with your transition, please let me know. Love you my dear soul ❤️
Thank you Mary, you were such an amazing person to me. I truly appreciate the confidence you gave me and how hard you worked to make your salon work for me.
I love you my friend 🧡 please know your spirit will live on. I will truly miss you in your physical form, but I know you will be around spiritually, assisting all of your peeps that you connected with on your journey
Don’t be afraid, you’ll just be sharing your life a different way, and in different places. Let your soul soar to the highest heights and shine like the Star 🌟 You Are. Love you!
Rose I have always looked forward to your educational, informative, fashionable posts.I have learned so much from you about disability accomadations and stiff person syndrome plus. Your sweet smile and kind heart will be missed so much. I feel like Im losing a close personal friend. I pray for a peaceful and beautiful transition to heaven.
I’ve followed your story on IG for over a year, watching every photo and video you posted. I was angered to find your account was hacked. Did you by chance keep all your photos and videos from then so that they could perhaps (if you wanted) to upload them to your new account? Your story is one of immense inspiration, especially to anyone with a chronic medical condition, and often just the joy and entertainment you provided kept us engaged. All that history gives people a picture of you and your life before this.
Blessings to you and your husband. Are you going to introduce him (only if you want to)?
You are a sweetheart. I wish you all the best. ✨
I’ve been watching your videos on Tik tok and I just want to say, you are incredibly brave and strong. I can only hope to have half of your courage one day. May your final weeks be full of peace, joy, and lots of love from those around you. And congratulations on marrying your best friend, I know he will forever cherish that. Thank you for sharing your story and inspiring others to fight and be brave. We got it from here girl, may you go peacefully and pain free❤️
I pray that you are still with us not seeing your updates and smiling face has me worried at the same time if god forbid your not I pray that you are at peace and out of pain
Your biggest fan
Praying for you, miss seeing your videos and smiling face❤️🙏🏼 You are so strong.
You’re a beautiful soul. Miss seeing your posts on reddit. Only love and hugs 💙🩵💚💛🧡🩷❤️