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Not Today, Lupus
28 members • Free
3 contributions to Not Today, Lupus
Jan 9 •
Happy New Year!
I did not mean to slip away from activity in this group lately. Holidays, work, studies and the battles my son has at times consume! Staying as positive as we can and know we will figure this new path out. Wishing all a good minute, good hour, good day, good week, good month, good year. One step at a time 👣
Dec '25 •
ANNOUNCEMENT
I am doing something a little crazy here 👀 I am going to launch my program NEXT WEEK 👀 THE ONLY REQUIREMENTS; Full participation, open and honest conversations, honest feedback and a full testimonial and post on social media somewhere if possible. IF NOT socials, permission to share your testimony on mine ❤️ What is this program you ask? 🤔 💥Phase 1: Mindshift 💥Phase 2: Redesign 💥Phase 3: Integrate Check the Calendar Tab, calls will be recorded, lets GOOOOOOOOO 🤪
1 like • Dec '25
This is great, thank you! I might have to scoot early from the meeting but hope to attend at least some of it, if not all!
1 like • Dec '25
@Stasia Clark fantastic! Thank you! ❤️
Sep '25 •
Welcome Post
Hello and WELCOME!!!! So excited to have you here and would love to learn a bit about you! Please introduce yourself, share a little or a lot about yourself (totally up to you) and what brought you into the community/hoping to gain from it ❤️ Also your favorite pet (photos are highly encouraged) ☺️
2 likes • Nov '25
Hi, my name is Kim. My son, RJ, was diagnosed in July 2025 with Lupus SLE. He started with a butterfly rash in the spring that the dermatologist determined was skin lupus. He acted fast and get RJ tested and into a pediatric Rheumatologist soon after the blood work showed he needed to go. He is currently on Hydroxychloroquine and we are working on anti inflammatory diet adjustments. RJ loves sports, I often joke that as soon as he was born his first request was a sports ball to throw, kick or hit. We are doing all we can to reach his HS senior year goal of being recognized with the award of a student athlete. We are learning about Lupus in his body as we go. The mid month of November has been the worst of it since being diagnosed. It has brought depressed feelings, tears and fear to us both. Thank you for including me in this group, he may not want to talk in the group but he has shared with me that he is thankful I am doing all I can to help him, therefore he is thankful for Stasia and this group! I have three fur babies, but this photo is when RJ was a puppy for Halloween!
0 likes • Nov '25
@Stasia Clark thank you! ❤️
1-3 of 3
@kim-tingley-8799
Mom of 12 year old boy recently diagnosed with Lupus SLE. I am thankful to be in this group to help my son and I navigate in the best possible way!
Active 60d ago
Joined Nov 29, 2025
LaFayette, NY
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