#lupusadvocacy Instagram Photos & Videos

lupusadvocacy - 2860 posts

Latest Instagram Posts

  • iamnotmylupus - Jillian Gomes @iamnotmylupus 2 weeks ago
  • #Repost @jillian_gomes with @get_repost
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THIS WEEK..important dates forever etched in the opus of my life 2 years ago. September 3, 2017 (Let go of the rest of my hair)...September 5, 2017 (Finally diagnosed: Lupus/Sjogrens Syndrome)..and September 7, 2017 (First post finally sharing what had been going on and well my new look) 💜👩🏻‍🦲👩🏻‍🦲.
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It’s ironic that this week I’ve been flared up..BUT 2019 has literally been the antithesis of 2017! Aside from challenges of just doing regular shit I couldn’t ENJOY myself..my life..I really reached a low I had never experienced and I couldn’t find or see the JOY..makes me cry as I write this. This year I’ve received some feedback at times about my attitude..my actions at times..I recognize it..and I NEVER want to make anyone feel anything negative that’s not my heart and please accept my apologies. What people may see as different, anti-social, doing my own thing, uninterested, checked out, maybe even not caring..It comes from this..it’s a real tangible experience of the reality that time is finite..in the blink of an eye it can all change..and this year I have felt so GOOD and ABLE..and found JOY again. So I don’t want to waste time..energy..moments..experiences..2019s mantra has been JUST GO! Simply because I really CAN (again)
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To my friends who have stayed on this roller coaster with me emotionally &
physically..shown me grace..understanding..compassion I appreciate and love you..I am a work in progress..To my lupus warriors KEEP FIGHTING..the JOY is there and I hope that this gives you encouragement to find it again. Lupus isn’t a death sentence..there is plenty of life for you to live!! JUST GO!! 💜💜💪🏼💪🏼🦋🦋
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TODAY WE CELEBRATE LIFE AND JUST GOING!!!! 💜💜💜💜 #repost @jillian_gomes with @get_repost ・・・ THIS WEEK..important dates forever etched in the opus of my life 2 years ago. September 3, 2017 (Let go of the rest of my hair)...September 5, 2017 (Finally diagnosed: Lupus/Sjogrens Syndrome)..and September 7, 2017 (First post finally sharing what had been going on and well my new look) 💜👩🏻‍🦲👩🏻‍🦲. . . It’s ironic that this week I’ve been flared up..BUT 2019 has literally been the antithesis of 2017! Aside from challenges of just doing regular shit I couldn’t ENJOY myself..my life..I really reached a low I had never experienced and I couldn’t find or see the JOY..makes me cry as I write this. This year I’ve received some feedback at times about my attitude..my actions at times..I recognize it..and I NEVER want to make anyone feel anything negative that’s not my heart and please accept my apologies. What people may see as different, anti-social, doing my own thing, uninterested, checked out, maybe even not caring..It comes from this..it’s a real tangible experience of the reality that time is finite..in the blink of an eye it can all change..and this year I have felt so GOOD and ABLE..and found JOY again. So I don’t want to waste time..energy..moments..experiences..2019s mantra has been JUST GO! Simply because I really CAN (again) . . To my friends who have stayed on this roller coaster with me emotionally & physically..shown me grace..understanding..compassion I appreciate and love you..I am a work in progress..To my lupus warriors KEEP FIGHTING..the JOY is there and I hope that this gives you encouragement to find it again. Lupus isn’t a death sentence..there is plenty of life for you to live!! JUST GO!! 💜💜💪🏼💪🏼🦋🦋 . . TODAY WE CELEBRATE LIFE AND JUST GOING!!!! 💜💜💜💜
  • #repost @jillian_gomes with @get_repost ・・・ THIS WEEK..important dates forever etched in the opus of my life 2 years ago. September 3, 2017 (Let go of the rest of my hair)...September 5, 2017 (Finally diagnosed: Lupus/Sjogrens Syndrome)..and September 7, 2017 (First post finally sharing what had been going on and well my new look) 💜👩🏻‍🦲👩🏻‍🦲. . . It’s ironic that this week I’ve been flared up..BUT 2019 has literally been the antithesis of 2017! Aside from challenges of just doing regular shit I couldn’t ENJOY myself..my life..I really reached a low I had never experienced and I couldn’t find or see the JOY..makes me cry as I write this. This year I’ve received some feedback at times about my attitude..my actions at times..I recognize it..and I NEVER want to make anyone feel anything negative that’s not my heart and please accept my apologies. What people may see as different, anti-social, doing my own thing, uninterested, checked out, maybe even not caring..It comes from this..it’s a real tangible experience of the reality that time is finite..in the blink of an eye it can all change..and this year I have felt so GOOD and ABLE..and found JOY again. So I don’t want to waste time..energy..moments..experiences..2019s mantra has been JUST GO! Simply because I really CAN (again) . . To my friends who have stayed on this roller coaster with me emotionally & physically..shown me grace..understanding..compassion I appreciate and love you..I am a work in progress..To my lupus warriors KEEP FIGHTING..the JOY is there and I hope that this gives you encouragement to find it again. Lupus isn’t a death sentence..there is plenty of life for you to live!! JUST GO!! 💜💜💪🏼💪🏼🦋🦋 . . TODAY WE CELEBRATE LIFE AND JUST GOING!!!! 💜💜💜💜
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  • lupusla - Lupus LA @lupusla 2 weeks ago
  • Save the date for #LupusLA's most anticipated event of the fall, the #HollywoodBagLadies Luncheon! This fundraising event brings together the most stylish of LA’s “ladies who lunch," while featuring some of the most prominent names in fashion and haute couture.👗👜 ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
In recognition of the fact that 90% of #lupus patients are women, this year’s luncheon will be focused on celebrating women, and will create an environment of beauty, empowerment and strength!🧡Tap our link in bio for tickets! Save the date for #lupusla's most anticipated event of the fall, the #hollywoodbagladies Luncheon! This fundraising event brings together the most stylish of LA’s “ladies who lunch," while featuring some of the most prominent names in fashion and haute couture.👗👜 ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ In recognition of the fact that 90% of #lupus patients are women, this year’s luncheon will be focused on celebrating women, and will create an environment of beauty, empowerment and strength!🧡Tap our link in bio for tickets!
  • Save the date for #lupusla's most anticipated event of the fall, the #hollywoodbagladies Luncheon! This fundraising event brings together the most stylish of LA’s “ladies who lunch," while featuring some of the most prominent names in fashion and haute couture.👗👜 ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ In recognition of the fact that 90% of #lupus patients are women, this year’s luncheon will be focused on celebrating women, and will create an environment of beauty, empowerment and strength!🧡Tap our link in bio for tickets!
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  • lupusla - Lupus LA @lupusla 2 weeks ago
  • In June of 2006, Sheba Family was diagnosed with #Lupus and #Nephritis following struggles with frequent fevers, joint/muscle pain, debilitating fatigue, visibly swollen lymph nodes, rashes and hair loss. Now, she is working to give back to the community as a lupus advocate, ensuring awareness and funding for research. Sheba is also using her voice, story and experience to help other patients along their journeys as a #LupusLA guest blogger!🗣 Read Sheba’s story via our link in bio.📲 In June of 2006, Sheba Family was diagnosed with #lupus and #nephritis following struggles with frequent fevers, joint/muscle pain, debilitating fatigue, visibly swollen lymph nodes, rashes and hair loss. Now, she is working to give back to the community as a lupus advocate, ensuring awareness and funding for research. Sheba is also using her voice, story and experience to help other patients along their journeys as a #lupusla guest blogger!🗣 Read Sheba’s story via our link in bio.📲
  • In June of 2006, Sheba Family was diagnosed with #lupus and #nephritis following struggles with frequent fevers, joint/muscle pain, debilitating fatigue, visibly swollen lymph nodes, rashes and hair loss. Now, she is working to give back to the community as a lupus advocate, ensuring awareness and funding for research. Sheba is also using her voice, story and experience to help other patients along their journeys as a #lupusla guest blogger!🗣 Read Sheba’s story via our link in bio.📲
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  • thelupustrainer - Sara 🙋🏻‍♀️ The Lupus Trainer @thelupustrainer 3 weeks ago
  • This was @thelupuswifey and I leaving the @lupusfl Lupus Empowerment Summit this past weekend and as you can see by my face redness and rash, I was struggling. 🥵 It was at the end of a very rough lupus week for me and my moods were all over the place last week which is why I haven’t posted much on here besides a few IG stories. The truth is that each time I tried to write a post last week it didn’t seem to make any sense and I would struggle to find the proper words. Then I would get frustrated with it, delete the whole thing before posting it, and abandon it. ✌️🤷🏻‍♀️⠀
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Today however I’m questioning why I ever cared about making sense at all. Most of my social media stuff probably doesn’t make much sense unless someone either lives with this disease or is a caregiver/spouse/close family member to someone else who has it. And even then it might not make much sense to them right now but one day if they go through something similar, it might. 💜⠀⠀
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As uncomfortable as it is for me and as unsafe as it sometimes feels to be so open and vulnerable, I continue to share my story and talk about my struggles publicly because I know it’s making a difference. And after attending the @lupusfl Lupus Empowerment Summit this past weekend and talking to so many other lupus warriors I was reminded again why it’s so important for me to not stay quiet about my disease. I was also reminded how desperately this lupus community needs those of us who are able to speak up to do so and to advocate for all of us. 📣🐺💜 ⠀⠀⠀
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My main point here is that I think we should all just say what we really want to say and not worry about it making sense. I know personally I’ve gone a little quiet and I need to be braver and hit that post button more. And I think it’s also important to recognize that our illness-related posts won’t necessarily be understood by everyone. But they’re very helpful for us and for those who can relate to us. And that’s enough. 💯📣🐺🐺💜💜💜⠀⠀⠀
#lupusawareness #lupusadvocacy This was @thelupuswifey and I leaving the @lupusfl Lupus Empowerment Summit this past weekend and as you can see by my face redness and rash, I was struggling. 🥵 It was at the end of a very rough lupus week for me and my moods were all over the place last week which is why I haven’t posted much on here besides a few IG stories. The truth is that each time I tried to write a post last week it didn’t seem to make any sense and I would struggle to find the proper words. Then I would get frustrated with it, delete the whole thing before posting it, and abandon it. ✌️🤷🏻‍♀️⠀ ⠀⠀⠀ Today however I’m questioning why I ever cared about making sense at all. Most of my social media stuff probably doesn’t make much sense unless someone either lives with this disease or is a caregiver/spouse/close family member to someone else who has it. And even then it might not make much sense to them right now but one day if they go through something similar, it might. 💜⠀⠀ ⠀⠀⠀ As uncomfortable as it is for me and as unsafe as it sometimes feels to be so open and vulnerable, I continue to share my story and talk about my struggles publicly because I know it’s making a difference. And after attending the @lupusfl Lupus Empowerment Summit this past weekend and talking to so many other lupus warriors I was reminded again why it’s so important for me to not stay quiet about my disease. I was also reminded how desperately this lupus community needs those of us who are able to speak up to do so and to advocate for all of us. 📣🐺💜 ⠀⠀⠀ ⠀⠀⠀ My main point here is that I think we should all just say what we really want to say and not worry about it making sense. I know personally I’ve gone a little quiet and I need to be braver and hit that post button more. And I think it’s also important to recognize that our illness-related posts won’t necessarily be understood by everyone. But they’re very helpful for us and for those who can relate to us. And that’s enough. 💯📣🐺🐺💜💜💜⠀⠀⠀ #lupusawareness #lupusadvocacy
  • This was @thelupuswifey and I leaving the @lupusfl Lupus Empowerment Summit this past weekend and as you can see by my face redness and rash, I was struggling. 🥵 It was at the end of a very rough lupus week for me and my moods were all over the place last week which is why I haven’t posted much on here besides a few IG stories. The truth is that each time I tried to write a post last week it didn’t seem to make any sense and I would struggle to find the proper words. Then I would get frustrated with it, delete the whole thing before posting it, and abandon it. ✌️🤷🏻‍♀️⠀ ⠀⠀⠀ Today however I’m questioning why I ever cared about making sense at all. Most of my social media stuff probably doesn’t make much sense unless someone either lives with this disease or is a caregiver/spouse/close family member to someone else who has it. And even then it might not make much sense to them right now but one day if they go through something similar, it might. 💜⠀⠀ ⠀⠀⠀ As uncomfortable as it is for me and as unsafe as it sometimes feels to be so open and vulnerable, I continue to share my story and talk about my struggles publicly because I know it’s making a difference. And after attending the @lupusfl Lupus Empowerment Summit this past weekend and talking to so many other lupus warriors I was reminded again why it’s so important for me to not stay quiet about my disease. I was also reminded how desperately this lupus community needs those of us who are able to speak up to do so and to advocate for all of us. 📣🐺💜 ⠀⠀⠀ ⠀⠀⠀ My main point here is that I think we should all just say what we really want to say and not worry about it making sense. I know personally I’ve gone a little quiet and I need to be braver and hit that post button more. And I think it’s also important to recognize that our illness-related posts won’t necessarily be understood by everyone. But they’re very helpful for us and for those who can relate to us. And that’s enough. 💯📣🐺🐺💜💜💜⠀⠀⠀ #lupusawareness #lupusadvocacy
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  • lupusgeorgia - lupusgeorgia @lupusgeorgia 1 month ago
  • Thank you @rep_hice for taking the time to meet with us this afternoon! Your support means the world to us! We are grateful to Chris Reed for sharing his story and to Crystal Reeves for allowing us to share her story! Crystal was not able to attend today’s meeting because she received a new kidney yesterday! We are keeping her in our prayers. #lupusadvocacy #lupusawareness #lupusga Thank you @rep_hice for taking the time to meet with us this afternoon! Your support means the world to us! We are grateful to Chris Reed for sharing his story and to Crystal Reeves for allowing us to share her story! Crystal was not able to attend today’s meeting because she received a new kidney yesterday! We are keeping her in our prayers. #lupusadvocacy #lupusawareness #lupusga
  • Thank you @rep_hice for taking the time to meet with us this afternoon! Your support means the world to us! We are grateful to Chris Reed for sharing his story and to Crystal Reeves for allowing us to share her story! Crystal was not able to attend today’s meeting because she received a new kidney yesterday! We are keeping her in our prayers. #lupusadvocacy #lupusawareness #lupusga
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  • lupushealthshop - Lupus Health Shop @lupushealthshop 1 month ago
  • Double tap if you support our community, no matter who lupus has effected!⁠ #protip from Ray:
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🦄If you're having a rough day🦄
 #mobbdeep, "Quiet storm" is his go-to and I fully support 90s rap because it's the best.
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You don't want to miss this YouTube video today:⁠
⁠.
🎥When: today (8/6/19) @1pm EST
Where: YouTube (link in bio) or search for our channel
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Men can have Lupus. Even though current statistics are 1/10, I truly believe this number is higher to about 3/10.⁠
⁠
The issue is that because if Lupus is even thought of in general, Doctor's will never even think of Lupus as a diagnosis for men.⁠
⁠
The more we raise awareness about Lupus, let's not forget about men who are suffering too.⁠
@big_ray76 is one of many Lupus warriors who was a silent follower, meaning he was a little shy in becoming involved because there are hardly any men on social media.⁠
But, he is awesome and we're so glad he's made the first step in becoming more active.⁠
⁠.
He has similar stories to us all.⁠
10 years of symptoms before a diagnosis⁠
Symptoms like fatigue, brain fog, joint pain⁠
He's got a wonderful support system though and a great sense of humor.⁠
⁠.
Show your support and share this to help spread awareness of Lupus affecting men!⁠
⁠.
#menwithlupus #lupusfighter #lupuswarrior #youtubeguest #youtubevideo #newvideo #lupuslifehacks #dealingwithlupus #doctorpatientadvocate #lupusadvocacy #lupusawareness⁠ #spooniewarrior #lupus #menwithhealth #healthymen #warrior Double tap if you support our community, no matter who lupus has effected!⁠ #protip from Ray: . 🦄If you're having a rough day🦄 #mobbdeep, "Quiet storm" is his go-to and I fully support 90s rap because it's the best. . You don't want to miss this YouTube video today:⁠ ⁠. 🎥When: today (8/6/19) @1pm EST Where: YouTube (link in bio) or search for our channel . Men can have Lupus. Even though current statistics are 1/10, I truly believe this number is higher to about 3/10.⁠ ⁠ The issue is that because if Lupus is even thought of in general, Doctor's will never even think of Lupus as a diagnosis for men.⁠ ⁠ The more we raise awareness about Lupus, let's not forget about men who are suffering too.⁠ @big_ray76 is one of many Lupus warriors who was a silent follower, meaning he was a little shy in becoming involved because there are hardly any men on social media.⁠ But, he is awesome and we're so glad he's made the first step in becoming more active.⁠ ⁠. He has similar stories to us all.⁠ 10 years of symptoms before a diagnosis⁠ Symptoms like fatigue, brain fog, joint pain⁠ He's got a wonderful support system though and a great sense of humor.⁠ ⁠. Show your support and share this to help spread awareness of Lupus affecting men!⁠ ⁠. #menwithlupus #lupusfighter #lupuswarrior #youtubeguest #youtubevideo #newvideo #lupuslifehacks #dealingwithlupus #doctorpatientadvocate #lupusadvocacy #lupusawareness⁠ #spooniewarrior #lupus #menwithhealth #healthymen #warrior
  • Double tap if you support our community, no matter who lupus has effected!⁠ #protip from Ray: . 🦄If you're having a rough day🦄 #mobbdeep, "Quiet storm" is his go-to and I fully support 90s rap because it's the best. . You don't want to miss this YouTube video today:⁠ ⁠. 🎥When: today (8/6/19) @1pm EST Where: YouTube (link in bio) or search for our channel . Men can have Lupus. Even though current statistics are 1/10, I truly believe this number is higher to about 3/10.⁠ ⁠ The issue is that because if Lupus is even thought of in general, Doctor's will never even think of Lupus as a diagnosis for men.⁠ ⁠ The more we raise awareness about Lupus, let's not forget about men who are suffering too.⁠ @big_ray76 is one of many Lupus warriors who was a silent follower, meaning he was a little shy in becoming involved because there are hardly any men on social media.⁠ But, he is awesome and we're so glad he's made the first step in becoming more active.⁠ ⁠. He has similar stories to us all.⁠ 10 years of symptoms before a diagnosis⁠ Symptoms like fatigue, brain fog, joint pain⁠ He's got a wonderful support system though and a great sense of humor.⁠ ⁠. Show your support and share this to help spread awareness of Lupus affecting men!⁠ ⁠. #menwithlupus #lupusfighter #lupuswarrior #youtubeguest #youtubevideo #newvideo #lupuslifehacks #dealingwithlupus #doctorpatientadvocate #lupusadvocacy #lupusawareness⁠ #spooniewarrior #lupus #menwithhealth #healthymen #warrior
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