#lupussupport

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#lupussupport#lupus#lupuswarrior#lupusawareness#lupusfighter#knowlupus#chronicillness#lupusstrong#lupusfacts#chronicpain#lupussucks#lupussurvivor#lupuscommunity#lupusproblems#lupuschick#lupuslife#autoimmune#autoimmunedisease#beauty#lupusflare#spoonie#thelupustrainer#lupie#Repost#lupuswarriors#lupustruth

Hashtags #lupussupport for Instagram

My 2 new bedmates:
cbd sublingual spray.
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We were able to elimimate 4 pills with these.
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Now that I know that it works for me, I need to look into more options! .
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#lupus #lupussuck #lupie #lupussupport #lupusawareness #lupuswarrior #cbd #marijuanaismedicine #naturalmedicine #holistic #cannabis #cbdspray #canada #lupuschick #painmanagement #pain #chronicillness #chronicpain #autoimmunedisease #chronicallyill #ulcerativecolitis #sarcoidosis #myositis #rhumatoidarthritis


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Well, ever since my test results came back positive (twice) for Lupus, I've been waiting to hear from the Rheumatologists office. I haven't, so I just called my Neurologist and talked to one of the nurses. They resent the referral to Rheumatology associates of Portland and they will call me in a week or so to make sure that I've heard back from the Rheumatologist. They apologized for me not getting set up by now, but I guess the Rheumatologists office is slammed busy. Still, I want to get this taken care of and do whatever needs to get done. #lupus #lupusfacts #lupussupport #lupusresearch #autoimmunedisease #systemicdisease #diagnosis #research #signsandsymptoms #autoimmuneprotocol #autoimmune #rheumatology #rheumatologist #signs #symptoms #lupussymptoms #invisibleillness


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Did you know... Ginger tea helps reduce inflammation and strengthen immunity! ✨ With its strong antioxidant effects it also helps repair nerve damage and improve muscle functionality! Add some lemon to your Ginger tea, sit back and relax! 🌾 Make sure to check out @thesimpleveganista ‘s recipe for her Lemon Ginger Detox Tea - link in bio!
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https://simple-veganista.com/lemon-ginger-detox-tea_21/


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(Regarding pain) “DON’T FUCKING ACKNOWLEDGE IT, SARA. IT WILL ONLY STOP YOU IF YOU LET IT.” -Pete @futurefitnesspro screaming in my ear many times when he was coaching me through one of his rigorous training sessions. I was a college basketball player and a skinny little freshman when I met Pete, he was our strength & conditioning coach. 🏀💪 I was the gym rat who would hang around and ask Pete a million nerdy questions after 🤓 so finally one day he asked me if I wanted to do an internship at his gym that summer. 😳🙌🤗 I said yes and became obsessed with training and learning everything I could from him, I WANTED HIS JOB. He also coached me as an athlete, he turned me from a skinny freshman into a machine. He’s the reason I earned a starting position my soph, junior, and senior years. Heading into my senior season I was as strong and well conditioned as I had ever been thanks to Pete. I was co-captain, second leading scorer on the team, and our team was preseason picked as the #1 seed in our conference that year. NOTHING COULD STOP ME. Ohhh except maybe a Lupus diagnosis 😑😑😑 NOPE, definitely hadn’t considered that, AAAND THEN BOOM 💥⚡️🌪 LUPUS HIT 🙍🏻‍♀️🥊😷🤒🤢🤧🤮🤕😵😴 I was passing off a lot of symptoms as the rigorous Div. I training schedule taking a toll on my body but then one day I got sick and never got better. 😷 A few months later I was diagnosed with Lupus at the age of 20, 6 months before my senior 🏀 season.
Enter Pete’s voice in my ear. He knew this was serious. He would always tell me to take care of myself and rest more than I think I should when I’m sick, but “once you step onto that court DON’T FUCKING ACKNOWLEDGE IT, SARA. IT WILL ONLY STOP YOU IF YOU LET IT.” He’s why I could separate myself from it mentally when I needed to and get done what I needed to get done despite having Lupus.

So maybe this whole time Pete wasn’t just making me tough for basketball, maybe unbeknownst to both of us he was preparing me and instilling in me the resiliency I would need for my lifelong battle with Lupus. He got me through that final bball season and his voice has gotten me through the last 15 years that I’ve battled this brutal disease. 💜


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I don’t think it’s a secret a jump when I get excited! 😁🤷🏻‍♀️ Last night I tried the FREE 20 minute sample workout...and I CANNOT wait for the full program to be released.

Yes, it involves a step but this is not your classic “step aerobics” class. This involves body weight movements with cardio and lots of modification options.

20 minutes. And done.

What more could you ask for? Quick, fun, results.

Id love to have a team of ladies doing the program with me! Interested?! Lets do it together!


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On the ELEVENTH day of Christmas, Lupus WA gave to me… colouring fun!
The holidays are a busy time for all of us but it’s important, especially as Lupus patients, that we remember to take time out to recharge. We keep hearing about the awesome benefits of mindfulness colouring so we’re giving you this Lupus constellation colouring page from supercoloring.com. If you’re keen for more you might like to visit Amazon for a sneaky gift to yourself (you find the link on our Facebook page!): https://www.amazon.com/Lupus-Living-Color-Antistress-Activity/dp/0997193409.


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The holidays are normally my favorite time of the year but this year has been really rough without my dad here.
We miss you, Dad! We never stop thinking about you <3
I can honestly say I am really looking forward to 2019!!
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#heaven #holidays #Christmas #holiday #dad #father #thenewyear #bereavement #lupus #lupuschick #newyear #holidayseason #dadloveyou #lupussupport


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@christa9524 had a question Nurse practitioner put me on cellcept today, she had a puzzled look on her face, cause they use to say my lupus was mild and she wondering why plaquenel not working, well truth be told I never used as directed. One every day until I can get up to two a day because I have stomach issues, a lot of inflammation in esophagitis, stomachitis,and duodeum inflammation. Anyway, I havent really took every day even once. But feel bad every day, from pain, too fatigue, and just malaise. But I feel dizzy and more fatigue when I do take it. I heard others say they take it and side effects go away but if I get side effects I stop. I know this is a more stronger drug, chemo I read and hate to try something so strong and not need it cause I didnt try plaquenel but Im feeling worse every day. Im scared of this pill but more scared if dont take. I think the longest consecutive time I took it was a,month. Have no organ involvement. Any advise will be appreciated. Have other health issues as we all do. Diastolic dysfunction, heart but say loose weight, sodium reduction and pseudo tumor cerebri, increased intracranial hypertension benign but same treatment as heart. I asked if lupus related, rheumatologist say the pseudo tumor cerebri can be, and some lupus members do have this but sorry for long post, but any advice, know we're not Drs but we know some things to look for than they do. #lupus_strong_together #lup_US #lupus #lupussupport #Jesuschrist


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Hey, I'm Brittany and this little baby here is my unexpected holiday miracle.
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I was diagnosed with lupus nephritis back in 2012. I was told to never get pregnant again. I have a sweet 12 year old already. I know.. I'm starting all back over again.
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When I first found out I was pregnant I went searching for women who were pregnant with Lupus and sharing their story. I really couldn't find anyone to connect with. Someone that would understand how fear can overtake your happiness when your dealing with a chronic illness!
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So, I decided to share my journey with those who are going through the same thing and need someone to laugh and cry with! I'll share the good and bad with you. I hope me being an open book can help someone else through their journey! .
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#lupusandpregnant #lupusandpregnancy #highriskpregnancy #lupuspregnancy #lupusproblems #lupusawareness #lupuswarrior #lupusfighter #lupusfacts #lupus #lupusnephritis #highriskpregnancies #pregnancy #pregnancyannouncement #preggolife #pregnantlife #lupiechick #spooniecommunity #lupuscommunity #lupussupport #mommytobeagain #myjourneys #sonogram #openbook #mommyof2 #lupielife #knowlupus


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There is something to be said about individuals who don’t give up when things get difficult.
Sure, im 25 pounds heavier in the picture on the left but its not only about the weight.
I am healthier.
I have more energy.
I am stronger.
I am more confident.
I am more positive.
I am fighting lupus.
I am improving my lifestyle.
Don’t give up on yourself if you are on the left.
Because you can work toward the woman on the right.
Its your choice.
Why wait?!


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You never know what someone else may be going through so be kind to one another today, Warriors. 💜 Keep smiling!


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Anyone need these medicines DM me ill send it free if you are out turkey you’ll only pay the shipping fee (plaquenil 200mg, folic acid 5mg, prednisolon 5mg, methotrexate 2.5mg, concor 5mg), because I won’t fight anymore I gave up... #lupusfight #lupuswarrior #lupusjourney #lupus #lupusawareness #lupusfighter #autoimmunedisease #autoimmune #healthyfood #healthylifestyle #positivevibes #fightlikeagirl #methotrexate #lupussupport #support #chemotherapysupport #lupusawareness #lupusturkey #giveup


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Can't believe how close the holidays are? Same! It can be stressful this time of year, so check out our link in bio for ways to deal with the holiday stress. Whether or not you have lupus, we could all learn how to better stay 'present' during this season of giving 🎁🎁🎁


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#Repost @lupuschickofficial with @get_repost
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It's amazing what simple words like "I believe you" can mean to someone dealing with an illness that is wreaking havoc on their life. When my husband and I travel around the U.S. speaking, we often share a story of how certain members of both of our families didn't really think I was sick until I went on chemo. The word "chemo" all of a sudden perked up ears and all of a sudden I was getting calls and cards and gifts.
But, for real? I honestly thought, are these people kidding me?  I had already been sick for TEN years - in and out of the hospital, mini strokes, brain anuerysm, wheelchairs, and countless IV treatments, dr appts and drugs.
I think for a lot of us, we push ourselves so much that people think we are doing just fine - they don't know the amount of energy exerted just to get to work, or school, or make it through a family affair. Or, we don't technically look sick, or maybe we want to put on a little makeup and feel extra pretty that day. Like if we were able to put on makeup or actually do our hair then our illness must not really be that bad.
If you know someone with a chronic illness (and you don't have one), sentences like "It's not that bad" or "You're overreacting" are not helpful. They are not affirming, they are not supporting. But a simple "I believe you" could literally change someone's life...
Who agrees?
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#lupus #lupuschick #mentalhealth #warrior #sle #iamalupuschick #ibelieveyou #chronicpainwarrior #lupusawareness #lupussupport #lupusisreal #chronicillnesscommunity #lupuscommunity #lupuswarrior💜 #spoonie #autoimmune #chronic #chronicillness #fibromyalgia #lyme


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It's amazing what simple words like "I believe you" can mean to someone dealing with an illness that is wreaking havoc on their life. When my husband and I travel around the U.S. speaking, we often share a story of how certain members of both of our families didn't really think I was sick until I went on chemo. The word "chemo" all of a sudden perked up ears and all of a sudden I was getting calls and cards and gifts.
But, for real? I honestly thought, are these people kidding me?  I had already been sick for TEN years - in and out of the hospital, mini strokes, brain anuerysm, wheelchairs, and countless IV treatments, dr appts and drugs.
I think for a lot of us, we push ourselves so much that people think we are doing just fine - they don't know the amount of energy exerted just to get to work, or school, or make it through a family affair. Or, we don't technically look sick, or maybe we want to put on a little makeup and feel extra pretty that day. Like if we were able to put on makeup or actually do our hair then our illness must not really be that bad.
If you know someone with a chronic illness (and you don't have one), sentences like "It's not that bad" or "You're overreacting" are not helpful. They are not affirming, they are not supporting. But a simple "I believe you" could literally change someone's life...
Who agrees?
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#lupus #lupuschick #mentalhealth #warrior #sle #iamalupuschick #ibelieveyou #chronicpainwarrior #lupusawareness #lupussupport #lupusisreal #chronicillnesscommunity #lupuscommunity #lupuswarrior💜 #spoonie #autoimmune #chronic #chronicillness #fibromyalgia #lyme


54

My 2018 summed up 🥊
Here’s what the past year with Lupus looked like for me... 6 hospitalizations
40 hours of chemotherapy infusions
1 kidney biopsy
1 upper endoscopy
4 ultrasounds
2 chest x-rays
4 CT Scans
3 24 hour urine tests
37 urine spot tests
26 blood draws
4 continuous glucose monitors worn
29 doctor appointments
4 new drug treatments introduced, only 1 out of 4 was effective (chemotherapy)
New 2018 Diagnoses:
Acute Kidney Failure (from Lupus Nephritis)
Primary Adrenal Insufficiency (Addison’s disease)
Non-Diabetic Hypoglycemia
Anemia (previous iron deficiency issue that resurfaced)

My Lupus Organ Involvement:
Kidneys (Class IV Lupus Nephritis)
Lungs (pleurisy)
Bone Marrow
Skin (rashes, scarring, thinning from Prednisone)
Liver (caused by Lupus drugs)
Pancreas (still being diagnosed)
Brain (daily cognitive dysfunction)
Averages:
Pills taken per day: 9-10
Days per week spent mostly in bed: 4-5
Number of days spent while on corticosteroids (Prednisone or Hydrocortisone): 365
Number of days spent while on chemotherapy: 268
The number of times I whisper “what the fuck” to myself each day: COUNTLESS
Sooooo I’ve had some better years lol 2018 was quite the doozy and was my absolutely worst in terms of my health/ my disease activity. It was a lot of pain and crushing defeats but you know what else happened despite all that suffering? I found her. ❤️ @amyvforme walked into my life just when I needed her the most. And I’d suffer through a list 10x longer than the one above if I knew she was waiting for me at the end of it. 😍

I hope all of you Lupus Warriors have someone in your life who makes you want to keep going because this disease is too difficult to face alone. If you do feel all alone please know that you’re welcome to DM myself or Amy over at @caregiver_corner. (Just FYI I’m running about a week or more behind on my DMs because my inbox was flooded with love over the weekend when I was in the hospital ☺️, so please be patient in waiting for a response). I hope ya’ll had a better 2018 than me and I hope better health days await us all!! 🦋💜 #lupusadvocate #lupusawareness #yearinreview


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Remember, many people with lupus can continue to work or go to school, though you will probably have to make some adjustments. #lupus #lupusawareness #lupussupport #lupusmanagement #lupuscure #hiddenillness #chronicpain #lupuswarrior #lupusfighter


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‘Tis the season to be jolly! Christmas is upon us and celebrations are in full swing. As you begin to give to your friends, family and community, we at Lupus WA want to remind you to also give to yourself. That’s why we’re counting down the twelve days until Christmas with twelve self-care activities that will help you to give your body the gentleness it deserves. Here’s to a festive season of wellness!

On the TWELFTH day of Christmas, Lupus WA gave to me… the sound of music!
Music is an incredible stress reliever. Whether you’re belting out a Christmas carol or getting your body moving with a good old-fashioned dance off, let this be your reminder to let music into your life today. You can read more about music and Lupus at the Lupus Corner (also available via our Facebook page): https://lupuscorner.com/stress-lupus-music/.


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We'll take it from here babygirl...
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.Fly high butterfly!@ms.alfred_
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Thank you for always being positive, always spreading awareness about this awful disease, thank you for being strong and fighting...but thank you for never giving up
You fought so strong that you deserve a standing ovation.
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May You Rest In Peace.
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This one hurts...these never get easy!! .
YOU BEAT LUPUS HOW YOU LIVE. WHY YOU LIVE AND IN THE MANNER IN WHICH YOU LIVE!
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#lupussista #restinpeace #flybutterfly #lupuswarrior #lupuschick #lupusfigther #lupussupport #lupussurvivor #lupusstrong #fightlupus #livingwithlupus #lupuslife #lupussucks #beatlupus #strength #courage #lupus #lupusisreal #lupusfacts #lupuscommunity #heartbroken #iprayforbetterdays #weneedacure #godgotme #godsplan #prayers #rip #lupuskills #lupusproblems #lupusnephritis


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Had to get a new CGM (Continuous Glucose Monitor) installed today because the one I’ve been wearing for the last 2 weeks had a malfunction. Due to that malfunction it only recorded 1 out of the 14 days so unfortunately we have to redo it for another 2 weeks. This also means we will have to postpone my hospital admittance (that was supposed to happen tomorrow) for the overnight insulinoma fasting test until after the holidays.
I’m honestly relieved it isn’t happening tomorrow because I’m still recovering from being in the hospital this past weekend. It hit me hard and I haven’t been right since I got home. The thought of being admitted again tomorrow for a 24 hour fast seems unfathomable. Although the CGM malfunction was inconvenient and annoying I’m grateful it has allowed me more time to recover and prepare for another hospital stay. 🙏🏥🛌 I was having a lot of lightheadedness and nausea today so my girlfriend @amyvforme drove me to the Endocrinologist. I’m very lucky to have a girlfriend like Amy who always wants to help and wants to listen and remember what questions I need to ask when I’m in these doctor appointments. The brain fog and low blood sugar issues make it very challenging for me to retain all the info and instructions my docs tell me. It helps so much to have her there 😍🦋💜 Thank you Amy 😘❤️ @caregiver_corner


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"I've been unapologetically honest about my bad days. Being upfront about when I'm in pain or not feeling well has been a struggle for me ever since I got diagnosed with #lupus. I used to sugarcoat my experience because I was afraid to be seen as negative, dramatic, or overreacting. I've been pushing myself to be honest about how I feel, no matter how it may sound or be perceived. Sometimes things just suck and that's the reality. Being open about it helps me to process my own experience while giving the people in my life insight into what it's really like to be chronically ill. It's truly been liberating." - @ericaloops for our @awesomenesstv Mobilize episode by @visiblemobile 📸: @sirjakethomas


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Want 30% off your LupaVita order?! 🌟 Use coupon code: ‘xmas2018’ at www.lupavita.com for 30% off your holiday shopping! 🎁
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Link in bio!


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Have you registered for The Lupus Project 2019? If not, check the link in bio and be sure to have your family and friends mark their calendars and register as well💜


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Thank goodness we’re halfway though the week! 🙌🏻 We definitely have this secret talent 😂 Who else can relate?!


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3 years ago today my story on my experience at the pain management clinic in Children’s Hospital LA was featured on their page. Going through services like breathing therapy , and acupuncture really did wonders for my pain , i would recommenced either to anyone seeking some non-drug options to relief pain. This hospital literally saved my life when I just got admitted for two months this was my new home. To this day I still am very close to my CHLA family . And that’s what we are family ! I still go back now as a young adult to support younger patients and speak in the name of awareness . #LupusBlog #LupusBlogger #LupusLife #LupusPain #LupusSupport #LupusChick #LupusArticle #SLE #SystemicLupus #SystemicLupusErythematosus #LupusAwareness #LupusAdvocate #Lupie #LupieLife #LupieSupport #Spoonie #SpoonieLife #SpoonieSupport #SpoonieBlog #ChronicPain #ChronicIllness #ChronicallyIll #AutoimmuneDisease #ButYouDontLookSick #Fibromyalgia #InvisibleIllness. https://www.chla.org/blog/patient-stories/second-home-vania


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