#lupusadvocacy Instagram Photos & Videos

lupusadvocacy - 2054 posts

Latest Instagram Posts

  • lupushealthshop - Lupus Health Shopโ„ข @lupushealthshop 1 day ago
  • What a touchy subject - healthcare in the USA. So many of us have high deductible health plans, are on Medicaid or may go months without healthcare. I'm in that boat with you.โ €โ €โ €โ €โ €โ €โ €โ €โ €
Commonly, I hear many #lupies talk about how their doctor doesn't listen to them or they prescribe so many meds and nothing works or their tests are fine, but they feel horrible.โ €โ €โ €โ €โ €โ €โ €โ €โ €
โ €โ €โ €โ €โ €โ €โ €โ €โ €
Here are 3 ways to ensure you're being taken care of properly whether you have "good" insurance and a crappy doctor or "bad" insurance or no insurance at all.โ €โ €โ €โ €โ €โ €โ €โ €โ €
1๏ธโƒฃSpeak Up! Don't let your medical team bully you into you thinking you're crazy for having symptoms of medications and feel uncomfortable about it. Compare the pros vs. cons. If the medication reduces your quality of life MORE than it's not worth it. If it's preventing organ damage, it's worth it.โ €โ €โ €โ €โ €โ €โ €โ €โ €
2๏ธโƒฃALWAYS bring a notepad, journal, or have your phone ready with notes on what you feel and when, what you ate, and what you did each day. This will help you and your team determine easy ways to reduce symptoms that you may not realize you're causing.โ €โ €โ €โ €โ €โ €โ €โ €โ €
Plus, this will force doctors to spend more time with you and be thorough to review all of this together.โ €โ €โ €โ €โ €โ €โ €โ €โ €
Don't just give your worst symptom when they ask, this is a systemic disease and there are a lot of connections between pains in one spot as compared to another more often than not.โ €โ €โ €โ €โ €โ €โ €โ €โ €
3๏ธโƒฃLearn to read your lab results and understand what is happening with your body so YOU can control your health and symptoms easily.
_โ €โ €โ €โ €โ €โ €โ €โ €
๐Ÿ’‰๐Ÿ’‰If your bloodwork is "fine" or "not bad enough yet", find a new doctor.๐Ÿ‘ฉโ€โš•๏ธ๐Ÿ‘จโ€โš•๏ธโš–๏ธ
_
Your doctor shouldn't care about your health and wellbeing only when you've hit rock bottom. They should be preventing this from happening! The best type of doctor who practices a method of prevention and not managing symptoms are doctors who have switched fields to #integrativemedicine or #functionalmedicine.
_
Are you knew to this concept? Check out my #lupusblog 
_
๐Ÿ‘ฉโ€๐Ÿ’ป"Everything You NEED to Know About Functional Medicine"โ €โ €โ €โ €โ €โ €โ €โ €โ €
#advocate #lupusadvocacy #lupuslifehacks What a touchy subject - healthcare in the USA. So many of us have high deductible health plans, are on Medicaid or may go months without healthcare. I'm in that boat with you.โ €โ €โ €โ €โ €โ €โ €โ €โ € Commonly, I hear many #lupies talk about how their doctor doesn't listen to them or they prescribe so many meds and nothing works or their tests are fine, but they feel horrible.โ €โ €โ €โ €โ €โ €โ €โ €โ € โ €โ €โ €โ €โ €โ €โ €โ €โ € Here are 3 ways to ensure you're being taken care of properly whether you have "good" insurance and a crappy doctor or "bad" insurance or no insurance at all.โ €โ €โ €โ €โ €โ €โ €โ €โ € 1๏ธโƒฃSpeak Up! Don't let your medical team bully you into you thinking you're crazy for having symptoms of medications and feel uncomfortable about it. Compare the pros vs. cons. If the medication reduces your quality of life MORE than it's not worth it. If it's preventing organ damage, it's worth it.โ €โ €โ €โ €โ €โ €โ €โ €โ € 2๏ธโƒฃALWAYS bring a notepad, journal, or have your phone ready with notes on what you feel and when, what you ate, and what you did each day. This will help you and your team determine easy ways to reduce symptoms that you may not realize you're causing.โ €โ €โ €โ €โ €โ €โ €โ €โ € Plus, this will force doctors to spend more time with you and be thorough to review all of this together.โ €โ €โ €โ €โ €โ €โ €โ €โ € Don't just give your worst symptom when they ask, this is a systemic disease and there are a lot of connections between pains in one spot as compared to another more often than not.โ €โ €โ €โ €โ €โ €โ €โ €โ € 3๏ธโƒฃLearn to read your lab results and understand what is happening with your body so YOU can control your health and symptoms easily. _โ €โ €โ €โ €โ €โ €โ €โ € ๐Ÿ’‰๐Ÿ’‰If your bloodwork is "fine" or "not bad enough yet", find a new doctor.๐Ÿ‘ฉโ€โš•๏ธ๐Ÿ‘จโ€โš•๏ธโš–๏ธ _ Your doctor shouldn't care about your health and wellbeing only when you've hit rock bottom. They should be preventing this from happening! The best type of doctor who practices a method of prevention and not managing symptoms are doctors who have switched fields to #integrativemedicine or #functionalmedicine. _ Are you knew to this concept? Check out my #lupusblog _ ๐Ÿ‘ฉโ€๐Ÿ’ป"Everything You NEED to Know About Functional Medicine"โ €โ €โ €โ €โ €โ €โ €โ €โ € #advocate #lupusadvocacy #lupuslifehacks
  • What a touchy subject - healthcare in the USA. So many of us have high deductible health plans, are on Medicaid or may go months without healthcare. I'm in that boat with you.โ €โ €โ €โ €โ €โ €โ €โ €โ € Commonly, I hear many #lupies talk about how their doctor doesn't listen to them or they prescribe so many meds and nothing works or their tests are fine, but they feel horrible.โ €โ €โ €โ €โ €โ €โ €โ €โ € โ €โ €โ €โ €โ €โ €โ €โ €โ € Here are 3 ways to ensure you're being taken care of properly whether you have "good" insurance and a crappy doctor or "bad" insurance or no insurance at all.โ €โ €โ €โ €โ €โ €โ €โ €โ € 1๏ธโƒฃSpeak Up! Don't let your medical team bully you into you thinking you're crazy for having symptoms of medications and feel uncomfortable about it. Compare the pros vs. cons. If the medication reduces your quality of life MORE than it's not worth it. If it's preventing organ damage, it's worth it.โ €โ €โ €โ €โ €โ €โ €โ €โ € 2๏ธโƒฃALWAYS bring a notepad, journal, or have your phone ready with notes on what you feel and when, what you ate, and what you did each day. This will help you and your team determine easy ways to reduce symptoms that you may not realize you're causing.โ €โ €โ €โ €โ €โ €โ €โ €โ € Plus, this will force doctors to spend more time with you and be thorough to review all of this together.โ €โ €โ €โ €โ €โ €โ €โ €โ € Don't just give your worst symptom when they ask, this is a systemic disease and there are a lot of connections between pains in one spot as compared to another more often than not.โ €โ €โ €โ €โ €โ €โ €โ €โ € 3๏ธโƒฃLearn to read your lab results and understand what is happening with your body so YOU can control your health and symptoms easily. _โ €โ €โ €โ €โ €โ €โ €โ € ๐Ÿ’‰๐Ÿ’‰If your bloodwork is "fine" or "not bad enough yet", find a new doctor.๐Ÿ‘ฉโ€โš•๏ธ๐Ÿ‘จโ€โš•๏ธโš–๏ธ _ Your doctor shouldn't care about your health and wellbeing only when you've hit rock bottom. They should be preventing this from happening! The best type of doctor who practices a method of prevention and not managing symptoms are doctors who have switched fields to #integrativemedicine or #functionalmedicine. _ Are you knew to this concept? Check out my #lupusblog _ ๐Ÿ‘ฉโ€๐Ÿ’ป"Everything You NEED to Know About Functional Medicine"โ €โ €โ €โ €โ €โ €โ €โ €โ € #advocate #lupusadvocacy #lupuslifehacks
  • 22 2
  • thelupustrainer - Sara ๐Ÿ™‹๐Ÿปโ€โ™€๏ธ The Lupus Trainerยฎ @thelupustrainer 4 days ago
  • ๐Ÿšจ EXCLUSIVE VIDEO ๐Ÿšจ (thatโ€™s what TMZ always says and it sounds so cool so roll with me ๐Ÿ˜‚๐Ÿ˜‚) of @kazytauginas speaking on March 4, 2019 at the @lupusorg National Lupus Advocacy Summit last month in Washington D.C. about why he made the @standingeightfilm (about a champion boxer diagnosed with Lupus right before the biggest fight of his career). ๐ŸฅŠ๐ŸŽฅ๐Ÿ’œ
.

Missing from the video is Kazy explaining that his Mom Victoria has battled Lupus for the past 40 years and is the drive behind why he got involved in Lupus Advocacy with both his parents. ๐Ÿบ๐Ÿบ๐Ÿบ๐Ÿ’ช๐Ÿ’œ๐Ÿ’œ
.
But Kazy wanted to do more. He has such an awesome gift and talent ๐ŸŽฅ๐ŸŽฌโœ๏ธโญ๏ธ plus a Hollywood platform ๐Ÿคฉ #equalizer2 #ari #heknowsdenzel ๐Ÿ™Œ๐Ÿ˜‚๐Ÿ˜‚ so he assembled a badass team and produced his labor of love, โ€œStanding Eightโ€. ๐ŸฅŠ๐ŸŽฅ๐Ÿ’œ
.
This 27 minute short film has been played at 33 International Film Festivals and has taken home 11 Award Wins and 13 Nominations, including: Best Film, Best Short Film, Best Cinematography, Best Actor, Best Supporting Actor in a Short Film, and a โ€œWish it Were Longerโ€ Award. ๐Ÿ†โญ๏ธโญ๏ธโญ๏ธโญ๏ธโญ๏ธ๐Ÿ’œ
.
Kazy dedicates the film on screen to his Mother Victoria and to all the Lupus Warriors across the globe. ๐Ÿฆ‹๐Ÿฆ‹๐Ÿฆ‹๐Ÿบ๐Ÿบ๐Ÿบ๐ŸŒŽ๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ And now thanks to all his hard work and incredible talent we have this beautiful short film about Lupus to use either as an advocacy tool or to watch while curled up in pain on a rainy afternoon when we really just need to not feel so alone in this fight. ๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ
.
Kazy from the bottom of our hearts thank you for all your efforts and for producing this amazing film. Thank you for everything you do for this community, you are so loved and appreciated. ๐Ÿ™๐Ÿ’ช๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ
.
Peep that new trailer on my last post yaโ€™ll ๐Ÿ‘€ and GET HYPED!!! ๐ŸฅŠ๐Ÿ’ช๐Ÿ’œ๐Ÿ”ฅ๐Ÿ”ฅ๐Ÿ”ฅ๐ŸŽฌ๐ŸŽฅ๐Ÿฟ๐Ÿฟ๐Ÿฟ
.
#knockoutlupus๐Ÿ’ฅ๐ŸฅŠ ๐Ÿšจ EXCLUSIVE VIDEO ๐Ÿšจ (thatโ€™s what TMZ always says and it sounds so cool so roll with me ๐Ÿ˜‚๐Ÿ˜‚) of @kazytauginas speaking on March 4, 2019 at the @lupusorg National Lupus Advocacy Summit last month in Washington D.C. about why he made the @standingeightfilm (about a champion boxer diagnosed with Lupus right before the biggest fight of his career). ๐ŸฅŠ๐ŸŽฅ๐Ÿ’œ . Missing from the video is Kazy explaining that his Mom Victoria has battled Lupus for the past 40 years and is the drive behind why he got involved in Lupus Advocacy with both his parents. ๐Ÿบ๐Ÿบ๐Ÿบ๐Ÿ’ช๐Ÿ’œ๐Ÿ’œ . But Kazy wanted to do more. He has such an awesome gift and talent ๐ŸŽฅ๐ŸŽฌโœ๏ธโญ๏ธ plus a Hollywood platform ๐Ÿคฉ #equalizer2 #ari #heknowsdenzel ๐Ÿ™Œ๐Ÿ˜‚๐Ÿ˜‚ so he assembled a badass team and produced his labor of love, โ€œStanding Eightโ€. ๐ŸฅŠ๐ŸŽฅ๐Ÿ’œ . This 27 minute short film has been played at 33 International Film Festivals and has taken home 11 Award Wins and 13 Nominations, including: Best Film, Best Short Film, Best Cinematography, Best Actor, Best Supporting Actor in a Short Film, and a โ€œWish it Were Longerโ€ Award. ๐Ÿ†โญ๏ธโญ๏ธโญ๏ธโญ๏ธโญ๏ธ๐Ÿ’œ . Kazy dedicates the film on screen to his Mother Victoria and to all the Lupus Warriors across the globe. ๐Ÿฆ‹๐Ÿฆ‹๐Ÿฆ‹๐Ÿบ๐Ÿบ๐Ÿบ๐ŸŒŽ๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ And now thanks to all his hard work and incredible talent we have this beautiful short film about Lupus to use either as an advocacy tool or to watch while curled up in pain on a rainy afternoon when we really just need to not feel so alone in this fight. ๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ . Kazy from the bottom of our hearts thank you for all your efforts and for producing this amazing film. Thank you for everything you do for this community, you are so loved and appreciated. ๐Ÿ™๐Ÿ’ช๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ . Peep that new trailer on my last post yaโ€™ll ๐Ÿ‘€ and GET HYPED!!! ๐ŸฅŠ๐Ÿ’ช๐Ÿ’œ๐Ÿ”ฅ๐Ÿ”ฅ๐Ÿ”ฅ๐ŸŽฌ๐ŸŽฅ๐Ÿฟ๐Ÿฟ๐Ÿฟ . #knockoutlupus๐Ÿ’ฅ๐ŸฅŠ
  • ๐Ÿšจ EXCLUSIVE VIDEO ๐Ÿšจ (thatโ€™s what TMZ always says and it sounds so cool so roll with me ๐Ÿ˜‚๐Ÿ˜‚) of @kazytauginas speaking on March 4, 2019 at the @lupusorg National Lupus Advocacy Summit last month in Washington D.C. about why he made the @standingeightfilm (about a champion boxer diagnosed with Lupus right before the biggest fight of his career). ๐ŸฅŠ๐ŸŽฅ๐Ÿ’œ . Missing from the video is Kazy explaining that his Mom Victoria has battled Lupus for the past 40 years and is the drive behind why he got involved in Lupus Advocacy with both his parents. ๐Ÿบ๐Ÿบ๐Ÿบ๐Ÿ’ช๐Ÿ’œ๐Ÿ’œ . But Kazy wanted to do more. He has such an awesome gift and talent ๐ŸŽฅ๐ŸŽฌโœ๏ธโญ๏ธ plus a Hollywood platform ๐Ÿคฉ #equalizer2 #ari #heknowsdenzel ๐Ÿ™Œ๐Ÿ˜‚๐Ÿ˜‚ so he assembled a badass team and produced his labor of love, โ€œStanding Eightโ€. ๐ŸฅŠ๐ŸŽฅ๐Ÿ’œ . This 27 minute short film has been played at 33 International Film Festivals and has taken home 11 Award Wins and 13 Nominations, including: Best Film, Best Short Film, Best Cinematography, Best Actor, Best Supporting Actor in a Short Film, and a โ€œWish it Were Longerโ€ Award. ๐Ÿ†โญ๏ธโญ๏ธโญ๏ธโญ๏ธโญ๏ธ๐Ÿ’œ . Kazy dedicates the film on screen to his Mother Victoria and to all the Lupus Warriors across the globe. ๐Ÿฆ‹๐Ÿฆ‹๐Ÿฆ‹๐Ÿบ๐Ÿบ๐Ÿบ๐ŸŒŽ๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ And now thanks to all his hard work and incredible talent we have this beautiful short film about Lupus to use either as an advocacy tool or to watch while curled up in pain on a rainy afternoon when we really just need to not feel so alone in this fight. ๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ . Kazy from the bottom of our hearts thank you for all your efforts and for producing this amazing film. Thank you for everything you do for this community, you are so loved and appreciated. ๐Ÿ™๐Ÿ’ช๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ . Peep that new trailer on my last post yaโ€™ll ๐Ÿ‘€ and GET HYPED!!! ๐ŸฅŠ๐Ÿ’ช๐Ÿ’œ๐Ÿ”ฅ๐Ÿ”ฅ๐Ÿ”ฅ๐ŸŽฌ๐ŸŽฅ๐Ÿฟ๐Ÿฟ๐Ÿฟ . #knockoutlupus๐Ÿ’ฅ๐ŸฅŠ
  • 155 15
  • iamnotmylupus - Jillian Gomes @iamnotmylupus 1 week ago
  • Just had my 6 week check up with my Rheumy...#LupusWarriors know the drill..assessment, check up on meds, then draw blood lots of blood. Given where I started my latest results motivate me and have me so happy. With lupus it is hard at times to feel progress or see it. Having this kind of information to help you โ€œseeโ€ positive progression is life changing. So important to celebrate these mini wins!! ๐Ÿ’œ๐Ÿ’ช๐Ÿผ๐Ÿฆ‹
.
.
At the start my C3 levels were between 30-36. My C4 levels were between 4-6.
.
.
Do you have any mini wins to share? Just had my 6 week check up with my Rheumy...#lupuswarriors know the drill..assessment, check up on meds, then draw blood lots of blood. Given where I started my latest results motivate me and have me so happy. With lupus it is hard at times to feel progress or see it. Having this kind of information to help you โ€œseeโ€ positive progression is life changing. So important to celebrate these mini wins!! ๐Ÿ’œ๐Ÿ’ช๐Ÿผ๐Ÿฆ‹ . . At the start my C3 levels were between 30-36. My C4 levels were between 4-6. . . Do you have any mini wins to share?
  • Just had my 6 week check up with my Rheumy...#lupuswarriors know the drill..assessment, check up on meds, then draw blood lots of blood. Given where I started my latest results motivate me and have me so happy. With lupus it is hard at times to feel progress or see it. Having this kind of information to help you โ€œseeโ€ positive progression is life changing. So important to celebrate these mini wins!! ๐Ÿ’œ๐Ÿ’ช๐Ÿผ๐Ÿฆ‹ . . At the start my C3 levels were between 30-36. My C4 levels were between 4-6. . . Do you have any mini wins to share?
  • 13 2
  • thelupustrainer - Sara ๐Ÿ™‹๐Ÿปโ€โ™€๏ธ The Lupus Trainerยฎ @thelupustrainer 2 weeks ago
  • #Repost ๐Ÿ˜๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ@kellirosetaatmorethanlupus
ใƒปใƒปใƒป
We all have those supporters, advocates, and allies who mean so much to us and sometimes don't get the recognition they deserve. More Than Lupus wants to acknowledge them weekly through a new post called #sundayshoutout

If you would like to give a shout out to someone who supports you through your lupus journey, private message us with a picture, and quote of how they support you!

SUNDAY SHOUT OUT!
"Hi my name is Sara and this is Amy.  It took me 36 years to find her. 15 of those years I have had Lupus and dating was one of my biggest challenges with my disease. But then she showed up. She drives me to appointments when I am unable to drive myself and thinks ahead to get us there 20 mins early because she knows I will need to rest before we go in. She does all the little things that make my life with lupus a little easier and it means so much to me. She has seen the good, the bad, and the ugly of my disease and she loves me hard through it all. She pulls me out of my bad moods and can make me laugh no matter how sick I am. Me battling this disease with her by my side makes me feel like we have the strength of an army behind us.

She advocates for me (not kidding- she literally drove us to Washington D.C. last month to advocate for Lupus research funding on Capitol Hill), she goes to battle for me, and she is my biggest supporter and my rock. My hope for anyone suffering from lupus or a chronic illness is that they donโ€™t give up and they keep searching to find their โ€œAmyโ€ whether thatโ€™s a male or female version. Everyone who is chronically ill deserves to be loved through and made to feel like they are enough the way Amy does for me. So donโ€™t give up, they do exist!!โ€ A HUGE #sundayshoutout to you AMY!
-
-
-
-
#sundayshoutout
#lupussupport
#lupuslovedones
#morethanlupus #repost ๐Ÿ˜๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ@kellirosetaatmorethanlupus ใƒปใƒปใƒป We all have those supporters, advocates, and allies who mean so much to us and sometimes don't get the recognition they deserve. More Than Lupus wants to acknowledge them weekly through a new post called #sundayshoutout If you would like to give a shout out to someone who supports you through your lupus journey, private message us with a picture, and quote of how they support you! SUNDAY SHOUT OUT! "Hi my name is Sara and this is Amy. It took me 36 years to find her. 15 of those years I have had Lupus and dating was one of my biggest challenges with my disease. But then she showed up. She drives me to appointments when I am unable to drive myself and thinks ahead to get us there 20 mins early because she knows I will need to rest before we go in. She does all the little things that make my life with lupus a little easier and it means so much to me. She has seen the good, the bad, and the ugly of my disease and she loves me hard through it all. She pulls me out of my bad moods and can make me laugh no matter how sick I am. Me battling this disease with her by my side makes me feel like we have the strength of an army behind us. She advocates for me (not kidding- she literally drove us to Washington D.C. last month to advocate for Lupus research funding on Capitol Hill), she goes to battle for me, and she is my biggest supporter and my rock. My hope for anyone suffering from lupus or a chronic illness is that they donโ€™t give up and they keep searching to find their โ€œAmyโ€ whether thatโ€™s a male or female version. Everyone who is chronically ill deserves to be loved through and made to feel like they are enough the way Amy does for me. So donโ€™t give up, they do exist!!โ€ A HUGE #sundayshoutout to you AMY! - - - - #sundayshoutout #lupussupport #lupuslovedones #morethanlupus
  • #repost ๐Ÿ˜๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ@kellirosetaatmorethanlupus ใƒปใƒปใƒป We all have those supporters, advocates, and allies who mean so much to us and sometimes don't get the recognition they deserve. More Than Lupus wants to acknowledge them weekly through a new post called #sundayshoutout If you would like to give a shout out to someone who supports you through your lupus journey, private message us with a picture, and quote of how they support you! SUNDAY SHOUT OUT! "Hi my name is Sara and this is Amy. It took me 36 years to find her. 15 of those years I have had Lupus and dating was one of my biggest challenges with my disease. But then she showed up. She drives me to appointments when I am unable to drive myself and thinks ahead to get us there 20 mins early because she knows I will need to rest before we go in. She does all the little things that make my life with lupus a little easier and it means so much to me. She has seen the good, the bad, and the ugly of my disease and she loves me hard through it all. She pulls me out of my bad moods and can make me laugh no matter how sick I am. Me battling this disease with her by my side makes me feel like we have the strength of an army behind us. She advocates for me (not kidding- she literally drove us to Washington D.C. last month to advocate for Lupus research funding on Capitol Hill), she goes to battle for me, and she is my biggest supporter and my rock. My hope for anyone suffering from lupus or a chronic illness is that they donโ€™t give up and they keep searching to find their โ€œAmyโ€ whether thatโ€™s a male or female version. Everyone who is chronically ill deserves to be loved through and made to feel like they are enough the way Amy does for me. So donโ€™t give up, they do exist!!โ€ A HUGE #sundayshoutout to you AMY! - - - - #sundayshoutout #lupussupport #lupuslovedones #morethanlupus
  • 158 7
  • thelupustrainer - Sara ๐Ÿ™‹๐Ÿปโ€โ™€๏ธ The Lupus Trainerยฎ @thelupustrainer 2 weeks ago
  • ๐Ÿ˜‚๐Ÿ˜‚ @thechroniccommunity posted this a few days ago and Iโ€™ve been laughing ever since. Oh the struggle. Weโ€™ve all been there. Our bodies telling us NOPE โœ‹๐Ÿšซ๐Ÿ™…๐Ÿปโ€โ™€๏ธ SHUT IT DOWN because you already did enough and need to rest today. But then our friends/ family/ and literally ALL THE FUN ACTIVITIES IN THE WORLD are screaming at us LETS GOOO because itโ€™s SUNDAY FUNDAYYYY!!! ๐Ÿค—๐ŸŽ‰๐Ÿณ๐Ÿฅž๐Ÿฅ“โ˜•๏ธโ˜•๏ธ (Unfortunately this is definitely not me today due to it being day 2 post chemo lol ๐Ÿ™…๐Ÿปโ€โ™€๏ธ๐Ÿ˜ท๐Ÿค’๐Ÿคข๐Ÿค•๐Ÿคง๐Ÿ˜ด๐Ÿ‘Ž)
.
Now to be clear- on most days itโ€™s just not physically possible to push through it, once weโ€™ve exhausted our very limited energy supply that day weโ€™re D-O-N-E both physically and mentally. We will have to rest the remainder of the day if we want to be able to function on even a basic level that next day. And if we donโ€™t rest and we choose to push through it we will pay for it probably for the next couple days (or longer) or we could even trigger a flare.
.
Sometimes just pushing through for a couple hours to cook dinner, clean up, put the kids to bed, etc. can have the same effect too. It doesnโ€™t always have to be fun and wild activities, ALL tasks require sooo much energy out of us and become increasingly difficult when weโ€™re hurting/sick/flaring. On those bad days we barely have anything left in the tank to get out of bed and do basic tasks let alone go out with friends.
.
However, every now and then we get this magically tempting window of unexpected symptom relief where we look around like THEYโ€™VE LEFT ME UNSUPERVISED ๐Ÿ‘€๐Ÿ˜ณ๐Ÿ‘€ #suckers ๐Ÿคญ๐Ÿคฃ OH ITโ€™S TIME TO PARTYYYYYY NOW ๐Ÿค—๐ŸŽ‰๐Ÿ˜‚๐Ÿ˜‚
.
My dark hoodie Kermit voice has a lot to say about everything in my life and really is my main decision maker at this point ๐Ÿ˜‚๐Ÿ˜‚ sooooo this is why @thelupuswifey is now in charge and has been promoted to the boss of me lol ๐Ÿ˜‚๐Ÿ‘‘๐Ÿ’๐Ÿ’• #itsafulltimejob ๐Ÿคฆ๐Ÿปโ€โ™€๏ธ #bigwifeenergy ๐Ÿ’‹โšก๏ธ๐Ÿ”ฅ๐Ÿ’˜ #ittakesavillage ๐Ÿบ๐Ÿบ๐Ÿป๐Ÿฆ‹๐Ÿ’œ #darkhoodiekermittakeover ๐Ÿธ๐Ÿ˜ˆ#whatcouldgowrong ๐Ÿ˜๐Ÿคญ
#inmydefenseiwasleftunsupervised ๐Ÿ™ƒ๐Ÿ˜ฌ ๐Ÿ˜‚๐Ÿ˜‚ @thechroniccommunity posted this a few days ago and Iโ€™ve been laughing ever since. Oh the struggle. Weโ€™ve all been there. Our bodies telling us NOPE โœ‹๐Ÿšซ๐Ÿ™…๐Ÿปโ€โ™€๏ธ SHUT IT DOWN because you already did enough and need to rest today. But then our friends/ family/ and literally ALL THE FUN ACTIVITIES IN THE WORLD are screaming at us LETS GOOO because itโ€™s SUNDAY FUNDAYYYY!!! ๐Ÿค—๐ŸŽ‰๐Ÿณ๐Ÿฅž๐Ÿฅ“โ˜•๏ธโ˜•๏ธ (Unfortunately this is definitely not me today due to it being day 2 post chemo lol ๐Ÿ™…๐Ÿปโ€โ™€๏ธ๐Ÿ˜ท๐Ÿค’๐Ÿคข๐Ÿค•๐Ÿคง๐Ÿ˜ด๐Ÿ‘Ž) . Now to be clear- on most days itโ€™s just not physically possible to push through it, once weโ€™ve exhausted our very limited energy supply that day weโ€™re D-O-N-E both physically and mentally. We will have to rest the remainder of the day if we want to be able to function on even a basic level that next day. And if we donโ€™t rest and we choose to push through it we will pay for it probably for the next couple days (or longer) or we could even trigger a flare. . Sometimes just pushing through for a couple hours to cook dinner, clean up, put the kids to bed, etc. can have the same effect too. It doesnโ€™t always have to be fun and wild activities, ALL tasks require sooo much energy out of us and become increasingly difficult when weโ€™re hurting/sick/flaring. On those bad days we barely have anything left in the tank to get out of bed and do basic tasks let alone go out with friends. . However, every now and then we get this magically tempting window of unexpected symptom relief where we look around like THEYโ€™VE LEFT ME UNSUPERVISED ๐Ÿ‘€๐Ÿ˜ณ๐Ÿ‘€ #suckers ๐Ÿคญ๐Ÿคฃ OH ITโ€™S TIME TO PARTYYYYYY NOW ๐Ÿค—๐ŸŽ‰๐Ÿ˜‚๐Ÿ˜‚ . My dark hoodie Kermit voice has a lot to say about everything in my life and really is my main decision maker at this point ๐Ÿ˜‚๐Ÿ˜‚ sooooo this is why @thelupuswifey is now in charge and has been promoted to the boss of me lol ๐Ÿ˜‚๐Ÿ‘‘๐Ÿ’๐Ÿ’• #itsafulltimejob ๐Ÿคฆ๐Ÿปโ€โ™€๏ธ #bigwifeenergy ๐Ÿ’‹โšก๏ธ๐Ÿ”ฅ๐Ÿ’˜ #ittakesavillage ๐Ÿบ๐Ÿบ๐Ÿป๐Ÿฆ‹๐Ÿ’œ #darkhoodiekermittakeover ๐Ÿธ๐Ÿ˜ˆ#whatcouldgowrong ๐Ÿ˜๐Ÿคญ #inmydefenseiwasleftunsupervised ๐Ÿ™ƒ๐Ÿ˜ฌ
  • ๐Ÿ˜‚๐Ÿ˜‚ @thechroniccommunity posted this a few days ago and Iโ€™ve been laughing ever since. Oh the struggle. Weโ€™ve all been there. Our bodies telling us NOPE โœ‹๐Ÿšซ๐Ÿ™…๐Ÿปโ€โ™€๏ธ SHUT IT DOWN because you already did enough and need to rest today. But then our friends/ family/ and literally ALL THE FUN ACTIVITIES IN THE WORLD are screaming at us LETS GOOO because itโ€™s SUNDAY FUNDAYYYY!!! ๐Ÿค—๐ŸŽ‰๐Ÿณ๐Ÿฅž๐Ÿฅ“โ˜•๏ธโ˜•๏ธ (Unfortunately this is definitely not me today due to it being day 2 post chemo lol ๐Ÿ™…๐Ÿปโ€โ™€๏ธ๐Ÿ˜ท๐Ÿค’๐Ÿคข๐Ÿค•๐Ÿคง๐Ÿ˜ด๐Ÿ‘Ž) . Now to be clear- on most days itโ€™s just not physically possible to push through it, once weโ€™ve exhausted our very limited energy supply that day weโ€™re D-O-N-E both physically and mentally. We will have to rest the remainder of the day if we want to be able to function on even a basic level that next day. And if we donโ€™t rest and we choose to push through it we will pay for it probably for the next couple days (or longer) or we could even trigger a flare. . Sometimes just pushing through for a couple hours to cook dinner, clean up, put the kids to bed, etc. can have the same effect too. It doesnโ€™t always have to be fun and wild activities, ALL tasks require sooo much energy out of us and become increasingly difficult when weโ€™re hurting/sick/flaring. On those bad days we barely have anything left in the tank to get out of bed and do basic tasks let alone go out with friends. . However, every now and then we get this magically tempting window of unexpected symptom relief where we look around like THEYโ€™VE LEFT ME UNSUPERVISED ๐Ÿ‘€๐Ÿ˜ณ๐Ÿ‘€ #suckers ๐Ÿคญ๐Ÿคฃ OH ITโ€™S TIME TO PARTYYYYYY NOW ๐Ÿค—๐ŸŽ‰๐Ÿ˜‚๐Ÿ˜‚ . My dark hoodie Kermit voice has a lot to say about everything in my life and really is my main decision maker at this point ๐Ÿ˜‚๐Ÿ˜‚ sooooo this is why @thelupuswifey is now in charge and has been promoted to the boss of me lol ๐Ÿ˜‚๐Ÿ‘‘๐Ÿ’๐Ÿ’• #itsafulltimejob ๐Ÿคฆ๐Ÿปโ€โ™€๏ธ #bigwifeenergy ๐Ÿ’‹โšก๏ธ๐Ÿ”ฅ๐Ÿ’˜ #ittakesavillage ๐Ÿบ๐Ÿบ๐Ÿป๐Ÿฆ‹๐Ÿ’œ #darkhoodiekermittakeover ๐Ÿธ๐Ÿ˜ˆ#whatcouldgowrong ๐Ÿ˜๐Ÿคญ #inmydefenseiwasleftunsupervised ๐Ÿ™ƒ๐Ÿ˜ฌ
  • 362 29
  • thelupustrainer - Sara ๐Ÿ™‹๐Ÿปโ€โ™€๏ธ The Lupus Trainerยฎ @thelupustrainer 2 weeks ago
  • @selmablair gets it, sheโ€™s one of us you guys. She commented on this post of mine last night and it doesnโ€™t even matter that we donโ€™t have the same disease or all the same symptoms- she understands what itโ€™s like to have to battle her own body day in and day out too. ๐Ÿ˜ท๐Ÿค• .
To hear her describe how debilitating her fatigue is to @robinrobertsgma on @abcnews and how she had to pull over a mile from her sonโ€™s school and rest before she could physically drive again...๐Ÿ˜ญ๐Ÿ˜ญ that was an incredibly emotional yet comforting moment for me when I saw that interview. Not even a few weeks prior the same exact thing happened to me when I tried to drive myself to get a haircut. I couldnโ€™t make it home and had to pull over just a mile from my house and sit there. It was incredibly frustrating and humiliating and I actually made a video post about it cursing Lupus up and down lol. ๐Ÿคฌ๐Ÿคฌ .
I felt kinda dumb afterwards for going off so hard about it on IG but then when I saw Selma get emotional and have the same reaction I had but on National Television in front of millions of viewers I realized Iโ€™m not crazy and Iโ€™m not alone in this fight. ๐Ÿ’ฏ๐Ÿ’ชโค๏ธ .
Thank you @selmablair for stepping out and sharing your MS story. You have already brought so much more disability awareness to the table and have sparked many new conversations for those of us living this chronic illness life. ๐Ÿ™๐Ÿงก๐Ÿ’œ
.
To anyone who is currently sharing their own story...PLEASE KEEP GOING. ๐Ÿ™๐Ÿ’ชโš”๏ธ๐Ÿ’œ I know itโ€™s hard because I struggle with it every day too- itโ€™s sooo much to deal with and much of it is very hard to show publicly. People can also be cruel and not understand it but WE NEED YOU OUT HERE!! The more of us there are the louder we will be and the faster we will get what we need to survive this brutally cruel disease. Not to mention we must work together and tirelessly so we can set our #wolfpackcubs (children with Lupus and their families) up with the tools, support, education, and safe & effective treatments so they wonโ€™t have to struggle as hard as we all have had to manage their disease in the future. ๐Ÿ’ช #LUPUSWOLFPACK ๐Ÿ’ฅ๐Ÿ“ข๐Ÿบ๐Ÿบ๐Ÿบ๐Ÿ’œ๐Ÿ—ฃ๐Ÿ—ฃ๐Ÿ—ฃ #lupusadvocates ๐Ÿฆ‹ #lupuswarriors โš”๏ธ @lupus_wolfpack_official ๐Ÿพ @selmablair gets it, sheโ€™s one of us you guys. She commented on this post of mine last night and it doesnโ€™t even matter that we donโ€™t have the same disease or all the same symptoms- she understands what itโ€™s like to have to battle her own body day in and day out too. ๐Ÿ˜ท๐Ÿค• . To hear her describe how debilitating her fatigue is to @robinrobertsgma on @abcnews and how she had to pull over a mile from her sonโ€™s school and rest before she could physically drive again...๐Ÿ˜ญ๐Ÿ˜ญ that was an incredibly emotional yet comforting moment for me when I saw that interview. Not even a few weeks prior the same exact thing happened to me when I tried to drive myself to get a haircut. I couldnโ€™t make it home and had to pull over just a mile from my house and sit there. It was incredibly frustrating and humiliating and I actually made a video post about it cursing Lupus up and down lol. ๐Ÿคฌ๐Ÿคฌ . I felt kinda dumb afterwards for going off so hard about it on IG but then when I saw Selma get emotional and have the same reaction I had but on National Television in front of millions of viewers I realized Iโ€™m not crazy and Iโ€™m not alone in this fight. ๐Ÿ’ฏ๐Ÿ’ชโค๏ธ . Thank you @selmablair for stepping out and sharing your MS story. You have already brought so much more disability awareness to the table and have sparked many new conversations for those of us living this chronic illness life. ๐Ÿ™๐Ÿงก๐Ÿ’œ . To anyone who is currently sharing their own story...PLEASE KEEP GOING. ๐Ÿ™๐Ÿ’ชโš”๏ธ๐Ÿ’œ I know itโ€™s hard because I struggle with it every day too- itโ€™s sooo much to deal with and much of it is very hard to show publicly. People can also be cruel and not understand it but WE NEED YOU OUT HERE!! The more of us there are the louder we will be and the faster we will get what we need to survive this brutally cruel disease. Not to mention we must work together and tirelessly so we can set our #wolfpackcubs (children with Lupus and their families) up with the tools, support, education, and safe & effective treatments so they wonโ€™t have to struggle as hard as we all have had to manage their disease in the future. ๐Ÿ’ช #lupuswolfpack ๐Ÿ’ฅ๐Ÿ“ข๐Ÿบ๐Ÿบ๐Ÿบ๐Ÿ’œ๐Ÿ—ฃ๐Ÿ—ฃ๐Ÿ—ฃ #lupusadvocates ๐Ÿฆ‹ #lupuswarriors โš”๏ธ @lupus_wolfpack_official ๐Ÿพ
  • @selmablair gets it, sheโ€™s one of us you guys. She commented on this post of mine last night and it doesnโ€™t even matter that we donโ€™t have the same disease or all the same symptoms- she understands what itโ€™s like to have to battle her own body day in and day out too. ๐Ÿ˜ท๐Ÿค• . To hear her describe how debilitating her fatigue is to @robinrobertsgma on @abcnews and how she had to pull over a mile from her sonโ€™s school and rest before she could physically drive again...๐Ÿ˜ญ๐Ÿ˜ญ that was an incredibly emotional yet comforting moment for me when I saw that interview. Not even a few weeks prior the same exact thing happened to me when I tried to drive myself to get a haircut. I couldnโ€™t make it home and had to pull over just a mile from my house and sit there. It was incredibly frustrating and humiliating and I actually made a video post about it cursing Lupus up and down lol. ๐Ÿคฌ๐Ÿคฌ . I felt kinda dumb afterwards for going off so hard about it on IG but then when I saw Selma get emotional and have the same reaction I had but on National Television in front of millions of viewers I realized Iโ€™m not crazy and Iโ€™m not alone in this fight. ๐Ÿ’ฏ๐Ÿ’ชโค๏ธ . Thank you @selmablair for stepping out and sharing your MS story. You have already brought so much more disability awareness to the table and have sparked many new conversations for those of us living this chronic illness life. ๐Ÿ™๐Ÿงก๐Ÿ’œ . To anyone who is currently sharing their own story...PLEASE KEEP GOING. ๐Ÿ™๐Ÿ’ชโš”๏ธ๐Ÿ’œ I know itโ€™s hard because I struggle with it every day too- itโ€™s sooo much to deal with and much of it is very hard to show publicly. People can also be cruel and not understand it but WE NEED YOU OUT HERE!! The more of us there are the louder we will be and the faster we will get what we need to survive this brutally cruel disease. Not to mention we must work together and tirelessly so we can set our #wolfpackcubs (children with Lupus and their families) up with the tools, support, education, and safe & effective treatments so they wonโ€™t have to struggle as hard as we all have had to manage their disease in the future. ๐Ÿ’ช #lupuswolfpack ๐Ÿ’ฅ๐Ÿ“ข๐Ÿบ๐Ÿบ๐Ÿบ๐Ÿ’œ๐Ÿ—ฃ๐Ÿ—ฃ๐Ÿ—ฃ #lupusadvocates ๐Ÿฆ‹ #lupuswarriors โš”๏ธ @lupus_wolfpack_official ๐Ÿพ
  • 818 94
  • marcohaamans - Join Together To Fight Lupus @marcohaamans 3 weeks ago
  • #lupusEadvocate Rowan ๐Ÿ’ช

3000 dollar head shaving and 4000 dollar cake smashing๐Ÿ˜‚

Help him reach his 5000 dollar goal this year. ๐Ÿ’ช

Hero!! Join his team here: http://chapters.lupus.org/goto/Rowanslupusarmy

Donate to Rowanโ€™s efforts here: http://chapters.lupus.org/goto/Rowan 
For more information on Rowanโ€™s Head Shaving Party and Lemonade for Lupus and any future events (yup there might be more!) follow the 
TOGETHER, WE CAN SOLVE THE CRUEL MYSTERY LUPUS

JOIN US๐Ÿ˜‰

LET'S JOIN TOGETHER TO FIGHT AGAINST LUPUS ๐Ÿ’ช If you really want to join a Worldwide focused Lupus Group? Like the Facebookpage of the World Lupus Federation and support the WorldLupusDay 2019.๐Ÿ’ช #LUPUS 2019 ๐Ÿ’ช๐Ÿ’ช๐Ÿ’ช #Lupusadvocacy
#lupusadvocate ๐Ÿ’ช๐Ÿ’ช๐Ÿ’ช #LUPUSEUROPE

Do you want better #Treatment, more #Education and a #Cure one day, LIKE๐Ÿ‘ the Facebook page World Lupus Federation and we fight #Worldwide #Together

STILL A MISTERY AND NO CURE! 
LET'S UNITE TO FIGHT AGAINST LUPUS

Please let al World Lupus Warriors come together this year! 
WWW.WORLDLUPUSFEDERATION.ORG

LIKE AND SHARE! 
Do you have Lupus or do you know someone with Lupus, please join the #WorldLupusFederation #WorldLupusDay #LupusResearchAlliance #LupusOrganisation of the world

Connecting 6 million poeple around the world and fight together for a future without Lupus!

To solve the cruel mistery and find a Cure one day!  World Lupus Federation in the hope that many LupusWarriors will join in 2019 to fight together for a future without Lupus.

To make World Lupus Federation and World Lupus Day great!

www.worldlupusfederation.org

#SolveTheMistery #Lupus

Lupus is often diagnosed wrong or diagnosed too late.

It is important to raise awareness worldwide for this cruel disease that still has no cure yet.

#MorethanLupus
#LupusVoice

#SystemicLupusErythematosus #SystemicLupusErythematodes

@Lupusorg For more #LupusResearch @lupusresearchalliance around the world better #LupusTreatment #LupusEducation and a #LupusCure one day for every #LupusWarrior #LupusWarriors

#Lupusfff
#LupusEurope #lupuseadvocate Rowan ๐Ÿ’ช 3000 dollar head shaving and 4000 dollar cake smashing๐Ÿ˜‚ Help him reach his 5000 dollar goal this year. ๐Ÿ’ช Hero!! Join his team here: http://chapters.lupus.org/goto/Rowanslupusarmy Donate to Rowanโ€™s efforts here: http://chapters.lupus.org/goto/Rowan For more information on Rowanโ€™s Head Shaving Party and Lemonade for Lupus and any future events (yup there might be more!) follow the TOGETHER, WE CAN SOLVE THE CRUEL MYSTERY LUPUS JOIN US๐Ÿ˜‰ LET'S JOIN TOGETHER TO FIGHT AGAINST LUPUS ๐Ÿ’ช If you really want to join a Worldwide focused Lupus Group? Like the Facebookpage of the World Lupus Federation and support the WorldLupusDay 2019.๐Ÿ’ช #lupus 2019 ๐Ÿ’ช๐Ÿ’ช๐Ÿ’ช #lupusadvocacy #lupusadvocate ๐Ÿ’ช๐Ÿ’ช๐Ÿ’ช #lupuseurope Do you want better #treatment, more #education and a #cure one day, LIKE๐Ÿ‘ the Facebook page World Lupus Federation and we fight #worldwide #together STILL A MISTERY AND NO CURE! LET'S UNITE TO FIGHT AGAINST LUPUS Please let al World Lupus Warriors come together this year! WWW.WORLDLUPUSFEDERATION.ORG LIKE AND SHARE! Do you have Lupus or do you know someone with Lupus, please join the #worldlupusfederation #worldlupusday #lupusresearchalliance #lupusorganisation of the world Connecting 6 million poeple around the world and fight together for a future without Lupus! To solve the cruel mistery and find a Cure one day! World Lupus Federation in the hope that many LupusWarriors will join in 2019 to fight together for a future without Lupus. To make World Lupus Federation and World Lupus Day great! www.worldlupusfederation.org #solvethemistery #lupus Lupus is often diagnosed wrong or diagnosed too late. It is important to raise awareness worldwide for this cruel disease that still has no cure yet. #morethanlupus #lupusvoice #systemiclupuserythematosus #systemiclupuserythematodes @lupusorg For more #lupusresearch @lupusresearchalliance around the world better #lupustreatment #lupuseducation and a #lupuscure one day for every #lupuswarrior #lupuswarriors #lupusfff #lupuseurope
  • #lupuseadvocate Rowan ๐Ÿ’ช 3000 dollar head shaving and 4000 dollar cake smashing๐Ÿ˜‚ Help him reach his 5000 dollar goal this year. ๐Ÿ’ช Hero!! Join his team here: http://chapters.lupus.org/goto/Rowanslupusarmy Donate to Rowanโ€™s efforts here: http://chapters.lupus.org/goto/Rowan For more information on Rowanโ€™s Head Shaving Party and Lemonade for Lupus and any future events (yup there might be more!) follow the TOGETHER, WE CAN SOLVE THE CRUEL MYSTERY LUPUS JOIN US๐Ÿ˜‰ LET'S JOIN TOGETHER TO FIGHT AGAINST LUPUS ๐Ÿ’ช If you really want to join a Worldwide focused Lupus Group? Like the Facebookpage of the World Lupus Federation and support the WorldLupusDay 2019.๐Ÿ’ช #lupus 2019 ๐Ÿ’ช๐Ÿ’ช๐Ÿ’ช #lupusadvocacy #lupusadvocate ๐Ÿ’ช๐Ÿ’ช๐Ÿ’ช #lupuseurope Do you want better #treatment, more #education and a #cure one day, LIKE๐Ÿ‘ the Facebook page World Lupus Federation and we fight #worldwide #together STILL A MISTERY AND NO CURE! LET'S UNITE TO FIGHT AGAINST LUPUS Please let al World Lupus Warriors come together this year! WWW.WORLDLUPUSFEDERATION.ORG LIKE AND SHARE! Do you have Lupus or do you know someone with Lupus, please join the #worldlupusfederation #worldlupusday #lupusresearchalliance #lupusorganisation of the world Connecting 6 million poeple around the world and fight together for a future without Lupus! To solve the cruel mistery and find a Cure one day! World Lupus Federation in the hope that many LupusWarriors will join in 2019 to fight together for a future without Lupus. To make World Lupus Federation and World Lupus Day great! www.worldlupusfederation.org #solvethemistery #lupus Lupus is often diagnosed wrong or diagnosed too late. It is important to raise awareness worldwide for this cruel disease that still has no cure yet. #morethanlupus #lupusvoice #systemiclupuserythematosus #systemiclupuserythematodes @lupusorg For more #lupusresearch @lupusresearchalliance around the world better #lupustreatment #lupuseducation and a #lupuscure one day for every #lupuswarrior #lupuswarriors #lupusfff #lupuseurope
  • 15 0