#systemiclupuserythematosus

Instagram photos and videos

#systemiclupuserythematosus#lupus#TABR2018#TransAmBikeRace#lupuswarrior#LupusWarrior#Lupus#SystemicLupusErythematosus#LupusAwareness#lupusawareness#SLE#LupusCure#LupusTreatment#TeamMakeYourMark#MAKEYOURMARK#CyclingToEndLupus#rideforvinny#LupusWarriors#VincentToensing#LupusResearch#chronicillness#lupuschick

Hashtags #systemiclupuserythematosus for Instagram

今週も飲めた💊

あとは少しの間の飲食お預けのみ🍴

この系の薬ー
服用後30分は…というのは有名だけど
では『その前は❔
と調べてみると…
基本的には
『服用前に6時間くらい以上 水以外の飲食をしていなければ』🆗らしい❔

ナルホド起きている間に飲もうとすると このシバリが食事時間の間隔との兼ね合いで それは結構難しい⁉️💦

#アクトネル #骨粗鬆症予防薬 #食事 #服用 #闘病 #闘病中 #闘病生活 #全身性エリテマトーデス #プレドニン #免疫抑制剤 #難病 #難病指定 #膠原病 #自己免疫疾患 #緑内障 #抗リン脂質抗体症候群 #ワーファリン #脳梗塞 #ヘルプマーク #ハートプラスマーク
#SLE #Systemiclupuserythematosus #connectivetissuedisease #connectivetissuedisorder #glaucoma


2

A shout out to my boyfriend 😊. Dating someone or being in a relationship already takes hard work from both partners and energy. But dating someone with Lupus just adds onto that ! I get tired easily , especially after school and working with young children for hours I don’t have energy most days to go out afterwards. I have my days where I’m in pain and must cancel plans or stay in . Living with my illness I also have some things I must limit myself from (like the sun) and make bring up issues when planning stuff to do or go out . But if your partner really cares about you they will understand and not make you feel bad about it at all because they only want the best for YOU . Which is your health . I’m so blessed my boyfriend is understanding when I’m not up to things or too tired . Not just anyone can date someone with a chronic illness . It takes a mature , strong , special , understanding person to be able to deal with it . I’m blessed my guy is 😊💜. #LupusBlog #Lupus #SLE #SystemicLupus #SystemicLupusErythematosus #ChronicIllness #ChronicPain #LupusLife #LupusPain #LupusSupport #LupusWarrior #Spoonie #SpoonieLife #SpooniePain #SpoonieWarrior #AutoimmuneDisease #InvisibleIllness #LupusWarrior #LupusAwareness #LupusAdvocate #LupusAdvocacy #Lupie #Lupies #LupieLife


5

Yesterday’s pizza didn’t stay down so im trying again #pizza #systemiclupuserythematosus


3

この間の 薬箱の投稿の頃に 箱内を工夫して プレドニン1mgの場所を作り 今はプレ減らして飲んでます💊

10mg→9mg✨

減薬の症状なし💞

通院日の翌日には貰っていたけど ストックを飲んでおり
やっと飲み始めました

プロフ写真 今撮ったものに変更
(白黒に変換すると あまり変わってない)

#プロフ写真 #減薬 #通院  #闘病 #闘病中 #闘病生活 #全身性エリテマトーデス #プレドニン #免疫抑制剤 #難病 #難病指定 #膠原病 #自己免疫疾患 #緑内障 #抗リン脂質抗体症候群 #ワーファリン #脳梗塞 #ヘルプマーク #ハートプラスマーク
#SLE #Systemiclupuserythematosus #connectivetissuedisease #connectivetissuedisorder #glaucoma


2

No kidney damage, and compliment c4 went up 1 point, and c3 up 2! All good things! Just waiting on the concentration of the ANA and if the anti-smith is still positive. They did send me an email saying my labs had no acute clinical abnormality, which I think means they're fairly similar to the first round? I think the mention of it was because the rheumatologist coded it as "lupus exacerbation" to have insurance cover it.
Here's hoping if the Smith antibody is still positive Plaquinil comes with few side effects, and if negative, we figure out some sort of management until doc can figure out my weird symptoms otherwise!
#spoonie #chronicillness #undiagnosed #arthralgia #photosensitivity #kidneyretention #steroidresponsive #autoimmune #lupus #systemiclupuserythematosus


0

Help Keith to the finishline💪

#TransAmBikeRace #TABR2018

THE VINCENT TOENSING CYCLING TO END LUPUS FUND

#LupusWarrior #LupusWarriors Please follow and thank Keith Rahn for raising Awareness

Rider: Keith Rahn #rideforvinny

https://www.cyclingtoendlupus.com/
#CyclingToEndLupus

#TransAmBikeRace #TABR2018

#MAKEYOURMARK #TeamMakeYourMark for #Lupus #SystemicLupusErythematosus

Please donate:

http://support.lupus.org/site/TR?px=2186374&fr_id=1390&pg=personal

For more worldwide @lupusorg
@LupusResearchAlliance #LupusResearch better #LupusTreatment and a #LupusCure one day #LupusAwareness ❤️ @vindog37 #VincentToensing @selenagomez


0

If every #LupusWarrior donate this Fund at least 1 dollar it would be great✋

#TransAmBikeRace #TABR2018

THE VINCENT TOENSING CYCLING TO END LUPUS FUND

#LupusWarrior #LupusWarriors Please follow and thank Keith Rahn for raising Awareness

Rider: Keith Rahn #rideforvinny

https://www.cyclingtoendlupus.com/
#CyclingToEndLupus

#TransAmBikeRace #TABR2018

#MAKEYOURMARK #TeamMakeYourMark for #Lupus #SystemicLupusErythematosus

Please donate:

http://support.lupus.org/site/TR?px=2186374&fr_id=1390&pg=personal

For more worldwide @lupusorg
@LupusResearchAlliance #LupusResearch better #LupusTreatment and a #LupusCure one day #LupusAwareness ❤️ @vindog37 #VincentToensing @selenagomez


0

What my night currently looks like. Despite needing a Valium and voltaren earlier to deal with the shitstorm that is periods and fibromyalgia (mine always make my fibro go haywire 🙄) I had a really restorative nap and now I’m up hating the world and daring anyone to annoy me 😂 honestly, I’ve been kicked in the guts so many tiny (and not so tiny) ways this month that have really tested me and I’m so proud of my perseverance and courage through it all. Some of the stuff I’m dealing with is uber crappy but I’ve let myself feel what I need to (and feel as much of it as I needed to) about these things and then said ‘right. up ya get, keep moving forward.’ Goals for the coming week:
• advocate STRONGLY for my pain management with my rheumy
• deal with whatever comes re my iron + ferritin levels during that appt
• make more effort to create solid routines in the weeks coming up to placement
• bust outta here (or at least have a discharge date in the works!)
#complextrauma #risingfromptsd #lupus #lupuswarrior #systemiclupuserythematosus #fibromyalgia #chronicallyill #chronicillness #chronicpain #periodssuck


4

Some days especially a lot lately my body is making a statement by visually showing off my “not so invisible” diseases haha. Then tend to be much more obvious in the summer or when it is warm out because I can’t cover them up with clothes. For instance... my shoulder popping out all to often and needing to be taped up along with bracing several other joints... hard to hide when I can’t just hide them under clothes 😉Then there are my legs and why I am refusing to wear shorts when it is 90 degrees and 69%+ humidity because they give a lot away... they turn purple, have blotchy patches of discoloration, red rashes all pointing to my many medical problems and lastly the million purple tiny spots. The rash is #SLE #lupus, discoloration is mostly from #fibro and #raynauds and the spots classic markings of my #vasculitis that led to my stroke in 03/17.... and of course this evening I’m rocking the lovely butterfly 🦋 rash to top it all off haha guess during my big flares these last few weeks my diseases have been quite too invisible if you look 👀. Need to get feeling better so I can enjoy the summer at least a tiny bit!! ************************************ #chronicillness #chronicpain #chronicmigraine #chronicfatigue #chronicwarrior #chronicillnessawareness
#systemiclupuserythematosus #SLE #lupusawareness #lupusflare #lupusrash #lupus
#fibromyalgia #connectivetissuedisease #interstitialcystitis
#ehlersdanlossyndrome #EDS #hypermobility #sublexedshoulder #sublexationssuck #gastroparesis #gifailure #dysautonomia #pots


9

A small treat from a friend on her travels. I found this to be strangely satisfying.
#lupus #systemiclupuserythematosus #lupuscerebritis #lupusstreet #tourist #travels #blog #blogger #thislupuslife #lupie


1

Ok so update .. let me tell y’all what happen. Iv suffered from high blood pressure for about two years already. Sometimes it’s a problem sometimes it’s not. What I majority get out of it is me vomiting and headaches after dialysis! Last week on Monday I told you guys that I did not feel good , I had a horrible migraine that I could not see ! My vision was horrible , I couldn’t even see the txts on my phone no matter how close I held it up to my face. I went to bed that night hoping it would go away and all I remember was my sister helping me from my bed and I went blank ! I don’t remember anything. My family reminded me that I was throwing up all night , I was pale and sweaty .. my mom took me to the hospital and she got a big scared that’s when I got my seizure ! Anyways this is what I experienced.. it’s called #pres #lupus #systemiclupuserythematosus #dialysis #hemodialysis


0

I look like crap have barely slept feel like a bus hit me and I have a malar rash.My gp dr carol collins basically agreed with the pain specialist and said all of my symptoms are all in my head.Take one look at this photo and tell me I’m “not sick”.I dare ya.#chronicpain #uselessdoctors #itsnotinmyhead #systemiclupuserythematosus#nofilter #nomakeup


6

#dialysis .. oh how much I hate it but it keeps me alive .. thank God for it. I go Tuesdays, Thursday’s and Saturday’s..what about you? My symptoms after is a major headache, NO energy .. i will lay in bed all day if I could, iv had moments where I will throw up while sitting in the chair , it’s worse when you feel your blood pressure drop , but i also suffer from high blood pressure (it’s an everyday thing) take your meds you don’t wanna get a stroke. Anyways I make the best of these 3hrs15min by just listening to music or I sometimes read a book but at the end of the day my anxiety wins.. iv cried bc of how impatient I am. Lol the honest truth oh and my back hurts!! I catch muscle cramps all the time !! Places where iv never had ...my hips my thighs my stomach!! Most common my feet ..horrible #lupus #lupuswarrior #lupusstrong #kidneydonor #systemiclupuserythematosus #lupussucks #lupuschick #lupusnephritis #lupusfighter #dialysis #hemodialysis I don’t ever look this good in dialysis (but it was my bday so I tried) my usual outfit is pjs and dark circles lol @selenagomez


4

If every #LupusWarrior donate this Fund at least 1 dollar it would be great✋

#TransAmBikeRace #TABR2018

THE VINCENT TOENSING CYCLING TO END LUPUS FUND

#LupusWarrior #LupusWarriors Please follow and thank Keith Rahn for raising Awareness

Rider: Keith Rahn #rideforvinny

https://www.cyclingtoendlupus.com/
#CyclingToEndLupus

#TransAmBikeRace #TABR2018

#MAKEYOURMARK #TeamMakeYourMark for #Lupus #SystemicLupusErythematosus

Please donate:

http://support.lupus.org/site/TR?px=2186374&fr_id=1390&pg=personal

For more worldwide @lupusorg
@LupusResearchAlliance #LupusResearch better #LupusTreatment and a #LupusCure one day #LupusAwareness ❤️ @vindog37 #VincentToensing @selenagomez


0

Was told at pain clinic yesterday that all of my illnesses were all in my head and down to my depression 😡😡😡😡BULLSHIT ALERT There are two medical records on me one under Amanda sheehan and one under my actual name mandy sheehan and the secretary keeps confusing me for the mandy sheehan as the mandy sheehan file shows me as healthy and a drug seeker but my normal file shows me as very sick indeed ugh 😑 such a bloody mess and I wish I was taken seriously for once.On another note I dyed my hair back to purple and I love 💖 it now #uselessdrs #fibromyalgia #chronicpain #kneeinjury #trigeminalneuralgia #rheumatoidarthritis #hamstringtear #newhaircolour #ilovemyhair #systemiclupuserythematosus #swarzkopf #myotonicdystrophy #myalgicencephalomyelitis #imnotadrugaddict


1

The UPs and DOWNs will remind people with Lupus of their clinical picture.

Fighting and persevering to get over it too.

For that reason alone I would like to ask to make a small contribution to this great action by a hero Keith Rahn who continues the fund of LupusWarrior Vincent Toensing, who died sadly in 2016.

An inevitable workout during the TransAm Bike Race

If every #LupusWarrior donate this Fund at least 1 dollar it would be great✋

#TransAmBikeRace #TABR2018

THE VINCENT TOENSING CYCLING TO END LUPUS FUND

#LupusWarrior #LupusWarriors Please follow and thank Keith Rahn for raising Awareness

Rider: Keith Rahn #rideforvinny

https://www.cyclingtoendlupus.com/
#CyclingToEndLupus

#TransAmBikeRace #TABR2018

#MAKEYOURMARK #TeamMakeYourMark for #Lupus #SystemicLupusErythematosus

Please donate:

http://support.lupus.org/site/TR?px=2186374&fr_id=1390&pg=personal

For more worldwide @lupusorg
@LupusResearchAlliance #LupusResearch better #LupusTreatment and a #LupusCure one day #LupusAwareness ❤️ @vindog37 #VincentToensing @selenagomez


0

A couple that Gunplas together, stays together 😂😂 She's working on her second kit (first was a petitguy) the HG YMS Act Zaku from MSD Origins. Meanwhile I'm working on my entry for the #lupusforlupus contest. Can't think of a better way to spend a sunday morning.

#gunpla #gundam #gundammsd #gunplabuilder #gunplamalaysia #mobilesuitdiscovery #systemiclupuserythematosus #hobby #couplegoals


0

When your rheumatologist gives you a stick note with things to research.
He is rerunning some of the tests to make sure they're true positives, but he believes they are. He wants to treat with an antimalarial if so. If it comes back negative then he just wants to monitor to see what my symptoms tell him.
#spoonie #chronicillness #undiagnosed #lupus #systemiclupuserythematosus #autoimmune


0

No filter. Not a very flattering picture of me but whatever .. so iv kept this in for a while but j struggle with depression. I’m sad all the fkin time I guess i can’t get over what my life turned too when I got sick in 2012. I always dwell on it. Others think cus you go out or you have a smile on your face your ok when in fact your not. Allot of days I do well then I go home at night and I cry. Lately this month has been a bitch due to personal issues .. on Monday I threw up and was having the worst migraine! It was so bad I couldn’t see. I went to bed and the next day I woke up at the hospital. I had a seizure. My first seizure ever ! Turns out i was vomiting all night , i was dehydrated and to top it off I struggle with high blood pressure. Which is what caused the seizure. But at the end of the day it is my fault for letting it get this way. I always let my emotions get the best of me. If you have high blood pressure take care of it !!! #depression #lupus #systemiclupuserythematosus #dialysis #hemodialysis #lupusnephritis #lupuschick


84

#dialysis .. oh how much I hate it but it keeps me alive .. thank God for it. I go Tuesdays, Thursday’s and Saturday’s..what about you? My symptoms after is a major headache, NO energy .. i will lay in bed all day if I could, iv had moments where I will throw up while sitting in the chair , it’s worse when you feel your blood pressure drop , but i also suffer from high blood pressure (it’s an everyday thing) take your meds you don’t wanna get a stroke. Anyways I make the best of these 3hrs15min by just listening to music or I sometimes read a book but at the end of the day my anxiety wins.. iv cried bc of how impatient I am. Lol the honest truth oh and my back hurts!! I catch muscle cramps all the time !! Places where iv never had ...my hips my thighs my stomach!! Most common my feet ..horrible #lupus #lupuswarrior #lupusstrong #kidneydonor #systemiclupuserythematosus #lupussucks #lupuschick #lupusnephritis #lupusfighter #dialysis #hemodialysis I don’t ever look this good in dialysis (but it was my bday so I tried) my usual outfit is pjs and dark circles lol @selenagomez


5

If every #LupusWarrior donate this Fund at least 1 dollar it would be great✋

#TransAmBikeRace #TABR2018

THE VINCENT TOENSING CYCLING TO END LUPUS FUND

#LupusWarrior #LupusWarriors Please follow and thank Keith Rahn for raising Awareness

Rider: Keith Rahn #rideforvinny

https://www.cyclingtoendlupus.com/
#CyclingToEndLupus

#TransAmBikeRace #TABR2018

#MAKEYOURMARK #TeamMakeYourMark for #Lupus #SystemicLupusErythematosus

Please donate:

http://support.lupus.org/site/TR?px=2186374&fr_id=1390&pg=personal

For more worldwide @lupusorg
@LupusResearchAlliance #LupusResearch better #LupusTreatment and a #LupusCure one day #LupusAwareness ❤️ @vindog37 #VincentToensing @selenagomez


0

If every #LupusWarrior donate at least 1 dollar it would be great✋

#TransAmBikeRace #TABR2018

THE VINCENT TOENSING CYCLING TO END LUPUS FUND

#LupusWarrior #LupusWarriors Please follow and thank Keith Rahn for raising Awareness

Rider: Keith Rahn #rideforvinny

https://www.cyclingtoendlupus.com/
#CyclingToEndLupus

#TransAmBikeRace #TABR2018

#MAKEYOURMARK #TeamMakeYourMark for #Lupus #SystemicLupusErythematosus

Please donate:

http://support.lupus.org/site/TR?px=2186374&fr_id=1390&pg=personal

For more worldwide @lupusorg
@LupusResearchAlliance #LupusResearch better #LupusTreatment and a #LupusCure one day #LupusAwareness ❤️ @vindog37 #VincentToensing @selenagomez


0

If every #LupusWarrior donate at least 1 dollar it would be great✋

#TransAmBikeRace #TABR2018

THE VINCENT TOENSING CYCLING TO END LUPUS FUND

#LupusWarrior #LupusWarriors Please follow and thank Keith Rahn for raising Awareness

Rider: Keith Rahn #rideforvinny

https://www.cyclingtoendlupus.com/
#CyclingToEndLupus

#TransAmBikeRace #TABR2018

#MAKEYOURMARK #TeamMakeYourMark for #Lupus #SystemicLupusErythematosus

Please donate:

http://support.lupus.org/site/TR?px=2186374&fr_id=1390&pg=personal

For more worldwide @lupusorg
@LupusResearchAlliance #LupusResearch better #LupusTreatment and a #LupusCure one day #LupusAwareness ❤️ @vindog37 #VincentToensing @selenagomez


0

Mechanical breakdown costs Keith Rahn half a day, but more importantly he is safely on his way again.

#TransAmBikeRace #TABR2018

THE VINCENT TOENSING CYCLING TO END LUPUS FUND

#LupusWarrior #LupusWarriors Please follow and thank Keith Rahn for raising Awareness

Rider: Keith Rahn #rideforvinny

https://www.cyclingtoendlupus.com/
#CyclingToEndLupus

#TransAmBikeRace #TABR2018

#MAKEYOURMARK #TeamMakeYourMark for #Lupus #SystemicLupusErythematosus

Please donate:

http://support.lupus.org/site/TR?px=2186374&fr_id=1390&pg=personal

For more worldwide @lupusorg
@LupusResearchAlliance #LupusResearch better #LupusTreatment and a #LupusCure one day #LupusAwareness ❤️ @vindog37 #VincentToensing @selenagomez


0

June 19th (today!) is the last day to join my team and donate on my behalf!
If you’re reading this, go donate $5! 💜💚 #LinkInBio
——————————————
We’ve done really well this year. I have appreciated all the support. Your donations both directly and indirectly impact my well-being—physical and mental health! 🐺 🦋 #LinkInBio
#WalkForTash18 #LFANC #lupuswalk #lupuswalknc #chronicloveclub —————
#blackgirlmagic #blackwomanmagic #kNOwlupus #chronicillness #chronicfatigue #invisibleillness #uveitis #degenerativejointdisease #sijointdysfunction #humanexperience #humanvariability #latasharjonesblog #livingwithlupus #wolfbite #lupus #SLE #systemiclupuserythematosus #thisislupus #lupuslife #lupuswarrior


0

#TransAmBikeRace #TABR2018

THE VINCENT TOENSING CYCLING TO END LUPUS FUND

#LupusWarrior #LupusWarriors Please follow and thank Keith Rahn for raising Awareness

Rider: Keith Rahn #rideforvinny

https://www.cyclingtoendlupus.com/
#CyclingToEndLupus

#TransAmBikeRace #TABR2018

#MAKEYOURMARK #TeamMakeYourMark for #Lupus #SystemicLupusErythematosus

Please donate:

http://support.lupus.org/site/TR?px=2186374&fr_id=1390&pg=personal

For more worldwide @lupusorg
@LupusResearchAlliance #LupusResearch better #LupusTreatment and a #LupusCure one day #LupusAwareness ❤️ @vindog37 #VincentToensing @selenagomez


1

今日の地震😱
自分の所は全く影響はなかったけれど
もし大災害が起きたらと考えると改めて自分は必ずこれを持ち出して避難しなければ❗️と思った

幸い 薬さえ飲んでいれば見た目も生活も かろうじて普通の人と同じようにできるけど
もし避難することになってそれが長引くと 直接の被害から免れてもこれがなければ結局 命にかかわる💦💊

#地震 避難 #災害 #避難所生活# #難病者 #闘病 #闘病中 #闘病生活 #全身性エリテマトーデス #プレドニン #免疫抑制剤 #難病 #難病指定 #膠原病 #自己免疫疾患 #緑内障 #抗リン脂質抗体症候群 #ワーファリン #脳梗塞 #ヘルプマーク #ハートプラスマーク
#SLE #Systemiclupuserythematosus #connectivetissuedisease #connectivetissuedisorder #glaucoma


15

#TransAmBikeRace #TABR2018

THE VINCENT TOENSING CYCLING TO END LUPUS FUND

#LupusWarrior #LupusWarriors Please follow and thank Keith Rahn for raising Awareness

Rider: Keith Rahn #rideforvinny

https://www.cyclingtoendlupus.com/
#CyclingToEndLupus

#TransAmBikeRace #TABR2018

#MAKEYOURMARK #TeamMakeYourMark for #Lupus #SystemicLupusErythematosus

Please donate:

http://support.lupus.org/site/TR?px=2186374&fr_id=1390&pg=personal

For more worldwide @lupusorg
@LupusResearchAlliance #LupusResearch better #LupusTreatment and a #LupusCure one day #LupusAwareness ❤️ @vindog37 #VincentToensing @selenagomez


0

Today’s episode of ‘what the hell is Lupus?’ The Mayo Clinic outlines lupus for me. I experience GI symptoms (including liver inflammation) skin involvement, and joint inflammation, as well as Raynaud’s and fatigue. I also have a raised ANA and whacked out ferritin from inflammation. I am LUCKY. Some people experience lupus that can be life threatening. Mine is life-limiting but NOT life threatening. I may end up with liver disease (ironically ones that I was tested for previous to diagnosis) but I will probably not die from lupus. #lupus #lupuswarrior #lupusawareness #druginducedlupus #SLE #systemiclupuserythematosus #systemiclupus


0

I am now on YouTube! This first brief video and blog post is just a taster of what may be to come. Want to know more and what I'm talking about?

http://www.thislupuslife.com/my-first-lupus-video/

#lupus #systemiclupuserythematosus # lupuscerebritis #blog #blogger #thislupuslife #chronicillness #bellspalsy #video #vlog #vlogger


1

UPDATE💐: Anna is on a liquid diet and had cream of chicken soup at 5:30pm. She has been able to keep it and other fluids down, so far. Thanks for your prayers.❤️ 💐Gracias por sus oraciones.❤️💐 🇲🇽🇲🇽🇲🇽ViVa MéXiCo!!!🇲🇽🇲🇽Bravo Muchachos!!!🇲🇽🇲🇽🇲🇽 ⚽️ #vivamexico🇲🇽 #sisepuede #fifa2018 #fifaworldcup2018 #russia #2018 #queorgullo #festejando 🇲🇽 #mydaughter #mybabygirl 🤩 #lupuswarrior #lupuschick 💐 #lupusflare #lupussucks 😢 #systemiclupuserythematosus #raynaudsphenomenon #blue #hands #brave #young #lady #mamabear🐻 #mominlaw 🌸 #lupusawareness #beauty☀️ #worldcuprussia2018


1

We miss Mille! These two bring the absolute best out in each other! (And a few bad habnits, but that’s alright) 😍 This love is real #thislove #doggy #puppy #puppies #dogsofinstagram #doggies #love #puppylove #dog #lupus #lupusdog #dogswithlupus #SLE #systemiclupus #systemiclupuserythematosus #mixbreed #labrador #labmix #danishspitz #loveisintheair


0

Me with my love, protector and everything. I miss you Damion, more than you know..It is so hard not to have you here by my side as you have been there through it all. Medical staff have come between us and put such a painful brick wall between trying to break apart our bond. My god it has been harder than words without you here in this hospital bed but just think three days and counting and we’ll be together again. We have to show everyone and my lupus which has been so active while fighting to get to you (all this pain will be worth it in the end when I’m in your arms) that we’re stronger than what tried to break us. I thank you God for bringing this man into my life I wish you had let me meet him without lupus but if lupus is the silver lining that made me sail towards him in flight I’ll take every second of pain. Amen. #lupusawareness #lupus #lupusfighters #systemiclupuserythematosus #loveisallyouneed #loveisallcolors #lovehasnocolor #mybabe #myeverything #wewillgetthroughthis #withyou #ifindstrengthinhim 💜 #ourscrapbook #hemadeit #hesmine #mytwinflame #welcometoourjourney - thanks for making this page in honor babe xo Lexi


2

On June 16th, 2012 my life changed forever. That was the day where a team of 5 doctors came into my hospital room to tell me that I have Lupus. That’s something a soon-to-be 21 year old should not be hearing. I had lost 20lb in a span of 3 weeks, my hair was falling out, an awful rash spread across my face, my joints ache and I couldn’t walk,let alone bathe myself. My pride was destroyed. The doctors told me I was super lucky it was caught early, but being the only member in my family having lupus doesn’t seem lucky. I didn’t think I would be able to graduate college like this or enjoy the rest of my life waking up in excruciating pain every morning. That wasn’t the life I wanted. Eventually, I said fuck this and took matters into my own hands. 6 years later, I’m giving a big giant middle finger to lupus 🖕🏼. I’m enjoying my life as best as I can,even though some days my joints swell/hurt or I have 0 amount of energy. I don’t wake up in extreme pain anymore and I’m so thankful for that. Unfortunately, there’s still a lot of research to be done to figure out what they call a “mysterious illness”. There has been breakthroughs here and there in the past recent years and it’s amazing, but I hope one day they can figure what causes it and treat it properly. Be kind to everyone, you don’t know what they’re going through. #lupus #rheumatoidarthritis #systemiclupuserythematosus #autoimmune #yesidohaveahandicaptag #lupuswarrior #invisibleillness


8

In today’s episode of shitposting, I’m going to take you on a wild ride through my diagnosis and treatment of lupus.

So I told my GP about the litres of water I’d been crapping for a while, and she sent me off to a gastroenterologist. He found excess water in my stomach after fasting and diagnosed lymphocytic colitis after biopsies came back. I then had a gastric emptying study to find out why the water (and nausea and vomiting) and that came back clear. So he did a HIDA (gallbladder) scan to see if it was that, as I was also having trouble tolerating fats. That was fine. Then he did a small bowel MRI which was also fine. Then he noticed my liver functions had been elevated for a couple of years but not ‘enough’ for anyone to be too worried. So he did a whole bunch of testing and found a positive ANA and some random other thing. He decided to do a liver biopsy. That came back showing chronic parenchymal inflammation. But nothing was ‘wrong’ with me. A week or so before that my GP noticed I was on meds that could cause lupus. I mentioned this to the gastro and he said ‘yeah could be, but you need a rheumatologist’ and discharged me.

So off I went to Professor Jones and as soon as I walked into the room he said ‘you have lupus. Probably drug induced, and I’ve only seen maybe one other person with this type of lupus.’ So he started me on plaquenil. Which went really well (and also cleared up the colitis 🙌🏻) for a few months. Then I started getting awful swelling in my fingers and pain in my joints. I also had a ‘relapse?’ of the GI symptoms such as slow emptying and nausea and vomiting. So I went to see him again and he put me on Methotrexate. Well. What a nightmare. I got severe acne, lost FAR too much weight and was sick every time I ate, plus I lost so much hair that I actually had a bald spot if I did braids 😂 So he took me off that and put me on leflunomide, which has been my saviour. We also started Lyrica at this time because he also informally (as in he hasn’t written it down anywhere 🙄) diagnosed me with fibromyalgia, which is common in patients with Lupus. Well done if you’ve read this far 🙌🏻💜 #lupus #lupuswarrior #systemiclupuserythematosus


7

The price of hiking: one swollen knee on the left side due to #systemiclupus and on the other side, my entire leg is hyperextended to the right as a result of #ehlersdanlossyndrome. Interestingly, if both of these conditions were effecting the same knee, they would almost cancel each other out! #classictypeehlersdanlos #systemiclupuserythematosus #spoonielife


0

今週の 骨粗鬆症 予防薬
週1のこちらの💊
いちおう ちゃんと飲みました …が 実は最近ー
毎日の薬を飲み忘れることがある💦
正確にいうと朝・昼・夜 飲み忘れ
寝る時になって気づく😅

そして当然 いっきに飲む❗️これが続いたり💦

次の日には普通に飲もうとするも 前晩との💊間隔が近すぎるから その日の薬は遅めにズラしていると また丸1日 その日の薬を飲んでいないことに 寝る前になって気づく。。

…というパターン

かろうじて薬の血中濃度は 上げられているようで⁉️ 体調に変化はない😅

#薬 #飲み忘れ #血中濃度 #闘病 #闘病中 #闘病生活 #全身性エリテマトーデス #プレドニン #免疫抑制剤 #難病 #難病指定 #膠原病 #自己免疫疾患 #緑内障 #抗リン脂質抗体症候群 #ワーファリン #脳梗塞 #ヘルプマーク #ハートプラスマーク
#SLE #Systemiclupuserythematosus #connectivetissuedisease #connectivetissuedisorder #glaucoma


4

Huge Summer milestone yesterday as I spent a couple hours in and out of direct sunlight with no rash or swelling. I did get what I call a “sun headache” which is still with me today... but it’s manageable. Life with lupus is a constant juggling of energy and trigger risks. Should I trade an afternoon of garage sales and @mariagardenscenter for a bad headache the next day? What if it triggers more than a headache? Will I be well for Sunday? Do I have to choose one day or can I have both? At any rate, it was a beautiful and happy day. Perhaps we can do it again next week. Just taking it one day at a time. #lupus #sunsensitivity #sunallergy #systemiclupuserythematosus #autoimmunehealing


4

Does anyone take celexa and Plaquenil together? I take 20 mg of #celexa and I'm starting #plaquenil soon and I was worried about this drug interaction. My rheumatologist is not too concerned. Has a prolonged QT happened to anyone on these drugs combined? #depression #lupus #sle #systemiclupuserythematosus #chronicillness #autoimmunedisease #autoimmune #druginteraction #medication


0

#TransAmBikeRace #TABR2018

THE VINCENT TOENSING CYCLING TO END LUPUS FUND

#LupusWarrior #LupusWarriors Please follow and thank Keith Rahn for raising Awareness

Keith Rahn #rideforvinny

https://www.cyclingtoendlupus.com/
#CyclingToEndLupus

#TransAmBikeRace #TABR2018

#MAKEYOURMARK #TeamMakeYourMark for #Lupus #SystemicLupusErythematosus

Please donate:

http://support.lupus.org/site/TR?px=2186374&fr_id=1390&pg=personal

For more worldwide @lupusorg
@LupusResearchAlliance #LupusResearch better #LupusTreatment and a #LupusCure one day #LupusAwareness ❤️ @vindog37 #VincentToensing @selenagomez


0

Looking healthier but feeling woeful.I have a torn hamstring and a meniscus tear in my left knee. I’m really weak atm,i keep fainting everywhere and ive totally lost my appetite.Ive also gone and broken my nose and i have a bad head injury as well as pneumonia and pleuris.Ive been ordered by my gp to stay in bed.I have a knee brace and im using my walking stick that’s why I didn’t post in a while #systemiclupuserythematosus #myotonicdystrophy #fibromyalgia #myalgicencephalomyelitis #concussion #brokennose #epilepsy #chronicpain #rheumatoidarthritis #rosehair #kneeinjury #hamstringtear #pneumonia #pleurisy


0

Hi guys! As some of you would have known already, I started a GoFundMe to support my medical expenses for Lupus and Fibromyalgia and my other illnesses. It has been a really tough situation for me since last year to go through all of these and support my self while I work and do everything I can for my kids.

The past days has been tougher. I did all my best to mask all the pain I feel but minimal movement already feels like shards of glass are inside my bones and my muscles are ripping apart. I feel so depressed and lethargic and I feel hopeless lately. I am doing my best so I hope you can spare a minute to read my GoFundMe page and help :) there's no such thing as a small help. All support are big and meaningful.
link in bio to view my GoFundMe

For donations:

BDO Account:
Samantha S. Tan Gana
002530128363

You can reach me at below email:
samsammysian@gmail.com


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#TransAmBikeRace #TABR2018

THE VINCENT TOENSING CYCLING TO END LUPUS FUND

The sad side of the race🤔

#LupusWarrior #LupusWarriors Please follow and thank Keith Rahn for raising Awareness

Keith Rahn #rideforvinny

https://www.cyclingtoendlupus.com/
#CyclingToEndLupus

#TransAmBikeRace #TABR2018

#MAKEYOURMARK #TeamMakeYourMark for #Lupus #SystemicLupusErythematosus

Please donate:

http://support.lupus.org/site/TR?px=2186374&fr_id=1390&pg=personal

For more worldwide @lupusorg
@LupusResearchAlliance #LupusResearch better #LupusTreatment and a #LupusCure one day #LupusAwareness ❤️ @vindog37 #VincentToensing @selenagomez


2

#TransAmBikeRace #TABR2018

THE VINCENT TOENSING CYCLING TO END LUPUS FUND

The sad side of the race🤔

#LupusWarrior #LupusWarriors Please follow and thank Keith Rahn for raising Awareness

Keith Rahn #rideforvinny

https://www.cyclingtoendlupus.com/
#CyclingToEndLupus

#TransAmBikeRace #TABR2018

#MAKEYOURMARK #TeamMakeYourMark for #Lupus #SystemicLupusErythematosus

Please donate:

http://support.lupus.org/site/TR?px=2186374&fr_id=1390&pg=personal

For more worldwide @lupusorg
@LupusResearchAlliance #LupusResearch better #LupusTreatment and a #LupusCure one day #LupusAwareness ❤️ @vindog37 #VincentToensing @selenagomez


0

...and great books 📚! My life is complete! #mykidsaremyhappy #myhubbytoo


2

UPDATE 💜: My second semester of college ever I took a class that I worked organization, goals , concentration , and work ethic . My professor asked everyone to write down our personal goals ( immediate , short-term , and long-term goals ) and today coming home from work I revived it in the mail from my professor crazy that almost 5 years ago I put my goal as like getting my drivers license ✔️ working in child care ✔️starting a lupus blog ✔️ start saving $10 I actually save half my check every time I get paid so I’m doing more than $10 😅😂. Feeling motivated to do things ✔️ feels great to look back at these things and I can say I did complete my goals 🤗☺️. Even if I have Lupus I can complete my life goals . 💜💪🏻✋🏻 #LupusBlog #Lupus #LupusLife #LupusAwareness #LupusWarrior #LupusFighter #LupusSupport #LupusChick #SystemicLupusErythematosus #SLE #LupusPain #AutoimmuneDisease #Spoonie #SpoonieLife #SpoonieProblems #SpoonieSisters #SpoonieWarriors #Lupie #LupieLife #LupieProblems #ChronicIllness #ChronicPain #ChronicIllnessLife #ChronicPainWarrior


4

#FactFriday: Systemic lupus accounts for approximately 70 percent of all cases of #lupus. In approximately half of these cases, a major organ or tissue in the body, such as the heart, lungs, kidneys, or brain will be affected. Tap the link in our bio to read more. #lupusFL #lupus #SLE #systemiclupuserythematosus #lupusawareness #knowlupus #nolupus #lupusfacts #autoimmunedisease #endlupusnowFL


0

透明のコーラ買ってみた
まだ開けてないけど😅

先日はカフェラテのクリアウォーター飲んでみたけど
最近ほんと フレーバーウォーター増えた

ついこの間まで コンビニでも売ってる紙パックの『○○水』程度の味バリしか無かったけど
さすがに コーヒーや紅茶が出始めるとは思わなかった 笑

でも透明のコーラって サイダーとどう違うんだろう⁉️ 黒いコーラでさえ 目をつむって飲まされたらサイダーと味わけつかなそうな気がする自分😅

#フレーバーウォーター #サイダー #クリアウォーター #クリアラテ #クリアティー #闘病 #闘病中 #闘病生活 #全身性エリテマトーデス #プレドニン #免疫抑制剤 #難病 #難病指定 #膠原病 #自己免疫疾患 #緑内障 #抗リン脂質抗体症候群 #ワーファリン #脳梗塞 #ヘルプマーク #ハートプラスマーク
#SLE #Systemiclupuserythematosus #connectivetissuedisease #connectivetissuedisorder #glaucoma


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