7221 posts


#DidYouKnow , Lupus Has Gotten So Bad That Doctors Are Calling It a 2nd Cancer? πŸ’­ Well... Did You??? #LupusFact Never Be Ashamed Of Your Illness ! #FIGHT #LupusStrong #DoItForKay πŸ’œ

There are days that I can't see too great and my sentences don't form properly. Some days, I tell myself the pain doesn't exist or that the pigment changes on my face aren't too visible. I also like to pretend that my energy is the same as everyone else in their 20's so I face no limitation or discrepancies with my peers. A big part of living with a chronic illness is lying to yourself to get through the day.. but an even bigger part is reminding yourself that you are strong, beautiful and capable of anything. So although Lupus has definitely disrupted pieces of my life, does it define me? Nope. #autoimmuneawareness #lupuslife #lupusstrong

Last year this time I had major flare that made me lose a lot of hair, needless to say I cried... for a while lol, because I didn't feel "pretty", l but mainly because it was a reminder that I had no control over my body anymore. In December of last year I decided to just go natural to avoid putting chemicals on my already sensitive scalp, HOWEVER, Lupus decided to throw another curve ball my way and I got these MASSIVE painful cuts all over my head. Again I felt defeated, I could barely even touch my scalp but I just left it and kept it moving ( I still cried lol), but it's six months later now and this mane of mine is flourishing and I'm so happy, I may not wear it out much because I'd rather not expose my scalp to the sun too much due to my photosensitivity and how sensitive my scalp is but I'm so happy I got to this point. I feel like growing up in Jamaica we put so much emphasis on hair and the length determining how "beautiful" you are which is what I thought for a while. But now I feel more beautiful with my little mane that has represented how much I've been through and how much I've grown. This is me, this is my mane and we're out here flourishing. πŸ’œπŸ€ΈπŸ½β€β™€οΈβœ‹πŸΎ#LsUp #LupusStrong #lupuswarrior #lupusawarenessmonth #knowlupus

ShaVaughn is an inspiration to us all! If you would like to have your story heard, send it to us.
"My name is ShaVaughn White. I was diagnosed with Discoid Lupus in 2008. By 2011 it became the full SLE which resulted in me having a stroke at 28. I developed vasculitis of the brain and lost my ability to walk and talk. I held on tight to God during those hard times and stayed very strong in faith and I started going through physical and speech therapy. Lupus almost claimed my life 3 times but I am so determined to not let it beat me. My body has gone through some major changes but my faith has not! I am now a strong advocate for lupus! I do all I can to help other organizations and others who fight against lupus! Lupus: You make me brave!" @swhite414
#lupusfughter #lupuswarrior #lupusstrong

"He liked her with long hair, so she cut it short" #LupusStrong

a battle i constantly fight every dayπŸ’œβ™‘οΈπŸšΊπŸŽ†πŸ’’β˜‚οΈπŸ‘ΈπŸΌ #lupusawarenessmonth #lupuswarrior #lupusfighter #lupuslife #lupusstrong πŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œπŸ’œ

πŸ’œπŸ’œπŸ’œNow put ya L's Up πŸ’œπŸ’œπŸ’œ each & everyday this month. Lupus Month, I thought y'all knew. πŸ’πŸ½ #LupusStrong #LupusSurvivor #lupusawarnessmonth

On the road to recovery one infusion at a time. #LupusStrong πŸ’œπŸ’‰πŸ’ͺ🏽


I had a wonderful weekend, I went down to the beach with one of my Best Friends... crashed at her Mothers, ate well, gambled, stayed out/up all night and went to the beach. All love πŸ’œ #nottodaylupus

πŸ™ŒπŸ½πŸ™ŒπŸ½πŸ™ŒπŸ½ #jenniferklifechanger starts with me!

SO, I know a lot of people don't like to see "negative" posts come up on their feeds, but I keep sharing cause we need awareness cause some of us can't get away from this being our constant reality.
After spending the morning getting my monthly IV, I ended up needing to go to the ER. I knew my body wasn't going to be able to fight anything on its own since I had just gotten the IV, which weakens my immune system. Heck, dentists require I get written medical release for treatment from my rheumatologist before they treatment because of the lupus. Kinda stuff most people don't have to worry about.
I ended up needing to have a procedure done that is nothing short of traumatizing to me (I've had to have it done once before) ... & then ended up having the pericardiatis flare up... & they thought I might be having a heart attack. While in in the middle of that flaring, I simply can't talk... it's one of the worst and scariest things I deal with linked to the lupus. I couldn't explain that, unfortunately, it's something I deal with more regularly than I would care to & its lupus related.
So it was another IV...morphine this time, a procedure including getting cut up, more bloodwork, a pelvic scan, chest xray, EKG, urinalysis, etc, etc, etc, & few hours before I could go back to my parent's.
We were supposed to have come down for 2 nights and have gone home today, instead we had to stay so I can go back to the ER tomorrow to follow up on the procedure, then follow up with specialists next week. πŸ˜•

I would love to not have to spend so much of my life having to deal with all this medical stuff.

So, seriously, don't take your health for granted... if you're not CHRONICALLY ill, don't have to worry about how your body can't fight things on its own, or about crazy medications to try to keep your body from attacking itself, or deal with all sorts of other crazy symptoms on a regular basis or crazy stuff that can randomly come up without any warning... do not take your health for granted and be thankful to be "normal." #Lupus #LupusAwareness #SLE #KnowLupus #NoLupus #ChronicIllness #FindACure #LupusSurvivor #LupusSTRONG

Thank you @jjourneytowellness, Steve for coming out and supporting me today. Meant alot!! #LHandSign #lupusstrong #life #TEAMSUNITA #lupus

It's 7$ Saturday. Your generosity will help ensure that we won't go another 50 YEARS without a new drug for Lupus treatment 😳 Check out the link in my profile to make your donation. I'm SO grateful for your support, as is every person fighting Lupus #lupusstrong #payitforward #sevendollarsaturdays #donate #chronichope #spoonsfullofhope #spoonielife

Had to be here at 8:30 AM to start today's IV. I normally just come in for the IV and any labs, etc., which are done by my nurse. But, I normally don't have to see the doctor EVERY single time unless something "comes up" or I have new concerns. The past few months, I've had to see my doctor EVERY time.
Today I was told the doctor wanted to see me again, to which my automatic response was a loud, "oh crap!" The doctor was standing around the corner, waiting for me to go in to the back, which I didn't realize and she started to laugh cause she heard me. So I just asked her, "what the heck did you find this time?" This is a new rheumatologist I'm starting with cause my previous specialist left the practice. I HATE having to start with me specialists cause it takes forever to get them to understand yuppie specific issues and how the lupus and other illnesses related to it are affecting you, individually. She just wanted to go over the labs from last month that showed her how severe the anemia and vitamin D and other deficiencies are, even with prescription medication. I had already told her, since I've been dealing with it for decades, but she confirmed it with the labs. She's now decided to do more labs to see if we can figure out what type of anemia this is specifically and she realizes why I'm always so tired and why the fatigue and everything is so extreme. Ha! To say I feel like I'm literally crawling through the day and push beyond what most understand in an understatement. Still, I guess it is what it is and we push on.
I mostly share because we REALLY need awareness and to get more research funded so we can get better medications and eventually a cure! Because living a life with a chronic and debilitating illness, which can be deadly without warning, and not have enough knowledge or understanding of it and its effect on those living with it, as there is with other illnesses, is way more than just exhausting.

#Lupus #LupusAwareness #SLE #KnowLupus #NoLupus #ChronicPain #ChronicIllness #FindACure #LupusSurvivor #LupusWarrior #LupusSTRONG #Spoonies

Don't give up like Bolt πŸ’ͺ🏽 Help sponsor us to make it over the finish line against Lupus. 1$ per mile, you decide which to sponsor! If I can gain 13 sponsors we'll have another 91$ for our goal!! #runtoendlupus #lupusstrong #donate #payitforward #dontbeabolt #linkinbio #runbend #womensrunningcommunity #inspiringwomenrunners

Having lupus with a cold is he worse. For someone who doesn't have lupus they can take anything for colds. But for people with lupus we can't. I been using these all natural medicine that help fights colds. Teas by traditional medicinals they are Throat Coat and Breathe Easy, Vaporizing Rub, Astragalus by Natures way, Cough relief by NatraBio, Cold calm, Ear relief by Similasan and Honey Loquat syrup by Ham's. I hope these helps you guys out with colds I know it helps me. Also lots of rest. #coldseason#naturalmed#lupusawareness #lupusstrong#lupuswarrior πŸ’œπŸ’ͺπŸΌβ˜•οΈ

I'm just about finished my SIBO diet and let me tell you guys, this one has been H A R D! I've been paleo for years, had success with the candida diet, and then switched over to a ketogenic diet which I loved, but for some reason I just haven't been able to get my head into the SIBO diet.
It's a combo of low FODMAP and SCD and is super duper strict. The purpose is to eat foods easily digestible so the bad bacteria have no food sitting around in my gut to munch on. Plus you want to give at least 3hrs between meals to allow your little cilia in the small intestine to get to work brushing food through.
I find myself discouraged often and second guessing myself constantly. I'm still in pain and can get so weak, dizzy, and nauseous most days that I'm unable to make myself proper meals so I just end up eating a fried zucchini and that doesn't really lift my spirits!
But I still want to give this my all because following the diet properly has an equivalent effectiveness to antibiotics! Plus I don't like to do anything unless I know I'm doing it to the best of my ability.
Pictured: Zach helps me A TON with prep so I can have success. I still heavily rely on his help and if you swipe through, you'll see why - he's the only reason I'm still eating so well!

Winter is just around the corner. So this calls for cold nights. With having lupus I know our muscles and joints hurt mostly in the morning or on cold days. I turn mine on before I wake up completely so my body can basically unfreeze, it helps with the pain in my joints and muscles. Keeps me warm of course but having something to relax my muscle and joints is a plus. #heatingpad#heatingblanket#lupusawareness #lupusstrong #lupuswarrior#livingwithlupus πŸ’ͺπŸΌπŸ’œ

Here are some ways that help me with cold nights or winter nights. Even going out with my friends I always have one with me. You can put it in your gloves, hold on to it, put it in your shoes. These have saved my finger and toes from turning purple.#hothands#lupusstrong#lupusawerness πŸ’œπŸ’œ

2 Week βœ” up πŸ™ŒπŸ’ͺπŸ’œ #ISupportLupus #LupusStrong. God Never Lets Me Down Keeping A Positive Vibe Is The πŸ”‘

Most Popular Instagram Hashtags