Activity
Mon
Wed
Fri
Sun
May
Jun
Jul
Aug
Sep
Oct
Nov
Dec
Jan
Feb
Mar
Apr
What is this?
Less
More

Memberships

Not Today, Lupus

25 members • Free

10 contributions to Not Today, Lupus
I never thought I’d be posting this. I am completely shattered.
I’ve spent my life as an emergency doctor, but nothing prepared me for the moment the tables turned. Two days ago, my 7-year-old daughter, Lily, was rushed into the ICU. I am now sitting here watching her fight a severe Lupus flare that has attacked her system with a ferocity I’ve never seen. I’m struggling to even breathe as I write this. I’ve already lost my wife, and Lily is my entire world along with my son. Seeing her hooked up to these machines is pushing me into a darkness I can't describe. I feel like I’m at the end of my rope honestly, I feel like I’m losing my mind and my will to keep going. The isolation of this hospital room is suffocating. I don't use the messaging apps on here much because I’m constantly on my work phone. If anyone has the heart to just be a human connection for a grieving father—if you can send a text or a supportive voice note to help me stay grounded so I don't give up please just comment 'I'm here' below.
0 likes • 5d
Hi William, I am truly sorry to hear about your sweet little girl Lily. I I have been where you are right now my baby girl which is now 22 has Ehlers-Danlos syndrome EDS. She was in a sixth grade when this horrible disease came to play. She spent a lot of time in and out of the hospitals not able to go to school very heartbreaking, but I can now say my little girl has a full-time job in School full-time and she has traveled across the Watters twice once by herself I never dreamed that she would have this quality of life, i myself have lupus and I have been in a flare since January 28 of this year I know where you're coming from hold on It's going to get better even though it may not seem like it's gonna get better. You guys are in my prayer and I'm glad you found this amazingGroup. This is a wonderful place to be very educational and very supportive. We are here for you.
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 👣
1 like • Jan 11
Hi kim thank you for all the well wishes 🥰 i wish you and your family as well 💜💪🏽🫶🏾
Positive Word of the Day:
Indomitable -----Impossible to defeat, break,or suppress; Possessing a spirit that rises no matter the weight of the day. 💜🫵🏽
3
0
Happy Sunday
If your like me you stay in when its so cold and damp outside 💜🙌🏽💪🏽🫵🏽🫵🏽
2
0
Happy Sunday
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
Awesome
1-10 of 10
Peaches Parker
2
8points to level up
@peaches-parker-6502
57 year-old that has been dealing with Lucas 16 years now I'm a country girl I love outdoors. I love sports and I love people. I love to love.

Active 5d ago
Joined Nov 5, 2025
Powered by