#spooniepain

Instagram photos and videos

#spooniepain#spoonie#spoonielife#Lupus#LupusPain#SpooniePain#Spoonie#ChronicIllness#LupusBlog#LupusAwareness#ChronicPain#LupusAdvocate#Lupie#LupusWarrior#LupusLife#SpoonieLife#InvisibleIllness#LupusSupport#LupusProblems#pain#SLE#SystemicLupus#SpoonieProblems#AutoimmuneDisease#LupieLife#SystemicLupusErythematosus

Hashtags #spooniepain for Instagram

My first gift to myself arrived! It’s from @sillybadgerdesigns and includes stickers, prints and a card. I’m over the moon with how gorgeous these are! Expert modeling by @homicidaljamdoughnut The last couple of days have been tough, I’ve been in extra pain and all swollen up because of the cold and rain and Em’s been extra sick with her flu, she threw up again this morning and was so unwell I cancelled all our appointments for the week, except the gp on Thursday #hopewegetsomeanswers #fluforthreemonths #sickgirl #unwell #spoonie #gorgeousart #sopretty #loveit #rats #ratties #teacup #moon #lovethemoon #stickers #jamjams #model #ratsarefamily #cold #raining #swollenjoints #pain #spooniepain #tinman #spoonielife #osteoarthritissucks


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A fellow warrior @ladygaga speaks out. Nobody has a normal life, nobody has an easy life, but nobody knows how hard it is to not know your body and what it’s going to give you next.
There are days when we can help others and there are days where we just have to curl into a ball and hope that we are enough. You are strong and you are enough. #loveyourself



#fibromyalgia #fibro #flare #fibrosufferer #chronicpainwarrior #chronicpain #fibrofighter #fibrowarrior #millionreasons #sufferinsilence #suffer #nosuchthingasnormal #depressionhelp #notgivingup #painwarrior #spoonie #spooniewarrior #spooniepain #spooniefamily #spooniecommunity #instacommunity #earlymorningclub #ladygaga


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UPDATE💜✋🏻: Day Five in a row I’ve had pain . I’ve gone to bed every night this week in pain . I have had to use my strong meds every night to just have my sanity . Even as I write this blog entry I am in severe pain and with tears in my eyes . I’m so sick of living in pain . I am . #LupusBlog #Lupus #SLE #SystemicLupus #SystemicLupusErythematosus #LupusPain #LupusLife #LupusProblems #LupusSupport #LupusWarrior #LupusAwareness #LupusAdvocate #LupusAdvocacy #Lupie #LupieLife #LupieChick #ChronicIllness #ChronicPain #Spoonie #SpooniePain #SpoonieLife #SpoonieSupport #SpoonieProblems #InvisibleIllness


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I won movie tickets from @planetbooks_ I can’t wait to see this, I’ve read a lot about Mary Shelley, so I’m excited! We had such a lovely breakfast with my brother this morning, he had a flying stopover, we don’t get to see him often as we’re on opposite sides of the country. Rest and recovery now before an afternoon of pottering #movietickets #won #prize #maryshelley #planetbooks #cantwait #breakfast #brother #goodtoseehim #restandrecover #spoonie #spoonielife #spooniepain #happy #goodtimes


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5 years ago today I had my Rheumatologist at Children’s Hospital Of Los Angles suggest to me I use my story , and learned skills of coping , maturity , lessons learned , and public speaking to reach out and inspire others and advocate for those who cannot ! This was the first step to many many Lupus Awareness Opportunities ! 💜✋🏻🥄 #Lupus #LupusBlog #LupusLife #LupusAwareness #LupusAdvocate #LupusAdvocacy #LupusPain #LupusSupport #SLE #SystemicLupus #SystemicLupusErythematosus #Lupie #LupieLife #LupieSupport #ChronicIllness #ChronicPain #ChronicallyIll #InvisibleIllness #AutoimmuneDisease #Spoonie #SpoonieLife #LupusWarrior #SpoonieWarrior #SpoonieSupport #SpooniePain


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Supporting each other is very important ! Especially when we understand what we are going through when living with a chronic illness . Someone recently asked me to help them with a project recording a video answering a question . “what’s the hardest part of living with Lupus?” I felt honored I could help someone out not only do their project but spread awareness in any way possible . Even though I wasn’t feeling 100% myself I went ahead and recorded me answering the question in my opinion . I think it’s important to support one another when we can 💜✋🏻🥄🥄🥄 Comment Below : What’s the hardest part in your opinion of living with Lupus / Any Chronic Illness?? 💜💜 #LupusBlog #Lupus #LupusLife #LupusAwareness #LupusAdvocate #LupusSupport #LupusSisters #LupusPain #Lupie #LupieLife #LupiePain #Spoonie #SpoonieLife #SpoonieProblems #SpooniePain #SpoonieSupport #ChronicIllness #ChronicPain #InvisibleIllness #AutoimmuneDisease


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UPDATE 💜✋🏻: Day two of pain . Haven’t been in pain all day today but the strong pain meds I took left me dizzy and barely able to get up . And I cannot open my hands all the way . I’m just tired . Tired physically , mentally and emotionally . I’m tired of being in pain . I put on a strong face but sometimes being chronically ill gets to me and I’m just sick of living with Lupus . I’m just tired of all of it !! #LupusBlog #Lupus #LupusLife #LupusAwareness #LupusAdvocate #LupusAdvocacy #LupusWarrior #LupusPain #LupusProblems #LupusSupport #LupusSucks #Lupie #Lupies #LupieLife #ChronicIllness #ChronicPain #ChronicallyIll #InvisibleIllness #AutoimmuneDisease #Spoonie #Spoonies #SpoonieLife #SpoonieProblems #SpooniePain #SpoonieChick


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UPDATE ✋🏻💜: Since yesterday I haven’t felt well . First I had symptoms of getting a cold . Once I started feeling better in my throat & nose my chronic pain was greatly increased . Both my hands are swollen I can’t open my left hand due to all the inflammation :( . And my hand pain feels like someone is stabbing me repeatedly . Barely slept last night 😞 looks like I’m staying in today . #LupusBlog #Lupus #LupusLife #LupusAwareness #LupusAdvocate #LupusPain #LupusProblems #LupusWarrior #LupusSupport #Lupie #LupieChick #LupieLife #ChronicPain #ChronicIllness #ChronicPainWarrior #ChronicPainAwareness #ChronicIllnessWarrior #ChronicallyIll #Spoonie #Spoonies #SpoonieBlog #SpooniePain #SpoonieProblems #SpoonieChick #InvisibleIllness #AutoimmuneDisease


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Thanks to @interrupt.eds I found out I could turn myself into a Funko Pop! Shame they didn’t have my stick or wheelchair. People with disabilities want to be Funko Pops too! @originalfunko #funkopopyourself #funkopop #greatfun #distractsfromthepain #meandthecat #theydidnthavemyratties #spoonie #spoonielife #havesomefun #mademesmile #spooniepain #pain #distraction #ithelps #thankstoinstafriend @princetabbypossum @doggie015 @emmy97xox #dothis


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In (almost) the words of Dory from Finding Nemo... just keep flying #spooniefamily! Just wanted to make something to try and show my admiration of fellow #warriors I see on here, each with their own different battle but each exhibiting extraordinary bravery just by being. Thank you for continuing to inspire me #spooniecommunity and to followers for their words of encouragement and engagement since joining 💜🥄🐝
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#fibromyalgia #fibroflare #chronicpainwarrior #chronicpainawareness #chronicpain #fibrofighter #fibrowarrior #fibromialgia #millionreasons #sufferinsilence #nosuchthingasnormal #depressionhelp #notgivingup #painwarrior #painwarriorcode #spooniewarrior #spooniepain #instacommunity #quoteoftheday #earlymorningclub #letmesleep #massachusetts_lovers #bemorekind #inspiringpeople #justkeepswimming🐠 @fibro_warriors


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From @spoonie_village a perfect description of fatigue. I’m currently resting between waking up and getting up. My kids bring me coffee and breakfast every morning as it’s so difficult and painful for me to move in the morning. Breakfast is usually a tub of yoghurt and a banana, so it’s fairly easy. I have my morning meds, then have to lie here and wait for the pain meds to kick in. It seems so strange to think that I used to get straight up, make my own coffee and eat breakfast at the dining table. Like thinking about someone else’s life #fatigue #tiredness #pain #wakingup #gettingup #morning #meds #breakfast #spoonielife #spoonie #spooniepain #spoinieproblems


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My attempt at some #naturephotography and #mindfulness in action. This week I’m doing the ‘Treasure of Pleasure’ meditation.
Now I am TERRIFIED of bees and wasps, I literally run for the hills if one comes near me... but today, I really wanted to work on my photography with my camera and found a little spot of lavender. With the mindfulness exercise, I am meant to open my mind to the possibility of pleasure. So, instead of finding the presence of the bees scary I thought I’d focus on the pleasure it gave me. I focused on being in the moment and the pleasantness of being in this environment and watching the lil bees at work building nature and rather than being tense... I just totally relaxed. Massive change. In the end, I felt refreshed and the whole day’s been filled with these types of experiences. Rather than feeling frustrated and a victim of the pain, I tried to accept the suffering and breathe WITH it and accept that for the moment, this is how it is. ~
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#fibromyalgia #mindfulnessmeditation #treasureofpleasure #makeyourownkindofmusic #cantsleep #naturephotoportal #beephotography #beephoto #newnaturephoto #sillouettephotography #plantphotos #plantphotographer #instacommunity #spooniewarrior #dontgiveupnow #spooniepain #chronicpainwarrior #chronicpainawareness #spooniefamily #spoonie #spooniephotographer #lifecoachinghappiness #lifecoachingtipoftheday #bettermentalhealth #mentalhealthmatters #lavenderphotography #lavenderfestival #thursdaythoughts


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My morning coffee. We alternate between using reusable and disposable cups for a couple of reasons. Some mornings reusable cups are too heavy for me to hold and some days it’s because we are overwhelmed with dishes in the sink. We recycle as much as we can, but we also rely on plastic plates and cutlery. We were simply drowning in dishes and not coping at all. For different reasons we all find it painful to wash up, so some days it’s what we have to do. I’ve been working on this coffee for a while now, I can never sit up long enough to drink my morning coffee in one go, as the pain is too bad before medication. I drink a lot of cold coffee! #coffee #coffeecup #disposable #toopainful #pain #hands #cantgrip #dishes #cantcope #sinkful #washingup #drowningindishes #disabilities #havetoliedown #spooniepain #spoonieproblems #cantdrinkcoffeeinonego #spoonielife


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NOBODY has a normal life, NOBODY has an easy life, but NOBODY knows how hard it is to not KNOW your BODY and what it’s going to give you next, like @fibro_warriors ! @ladygaga 💜🥄👊🏼
There are days when we can help others and there are days where we just have to curl into a ball and hope that we are enough. Love to any other #spooniewarrior curling up in the heat and wishing for someone or something. You are so so strong and you are enough. xxx
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#fibromyalgia #fibroflare #chronicpainwarrior #chronicpainawareness #chronicpain #fibrofighter #fibrowarrior #fibromialgia #millionreasons #sufferinsilence #suffer #nosuchthingasnormal #depressionhelp #notgivingup #painwarrior #teamsleep #painwarriorcode #spooniewarrior #spooniepain #spooniefamily #spooniecommunity #instacommunity #quoteofday #earlymorningclub #massachusetts_lovers #madeitthroughtheweek #bemorekind #teenlove #insomnia #letmesleep


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Our gorgeous Beeno having some bath time. I’ve been struggling with bathing for a long time. I tend to fall into a habit of showering every second day. I got a fantastic idea from a fellow spoonie to make up a sticker chart for motivation. So if I shower 5 times a week for a month, I get to buy myself a prize. Hopefully this will help on the days when my bathroom seems to be on top of Mt Everest! #bathing #shower #kitty #cat #beeno @princetabbypossum #spoonieproblems #stickerchart #stickers #motivation #prize #bathroom #mteverest #painful #exhausting #smelly #clean #spoonie #spooniepain #spoonielife #catsofinstagram


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This is how I feel right now. One of my fav actors Hugh Laurie expresses it perfectly. Every time I get up, do something, then lie back down, I get excruciating pain in my hip due to bursitis. I got through dinner, changed into my pj’s, thought everything was done, laid down, groaned like a whale giving birth, thanked any gods that be that I’m down for the night...... and now I gotta pee. Ugh. Cue unimitable whale noises #hughlaurie #drhouse #favactor #whalenoises #hipbursitis #ugh #pain #agony #acutepain #gettingup #lyingdown #pjs #done #inbed #needtorest #spoonieproblems #spoonie #spooniepain #excruciating #rollingeyes


6

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


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This is me this afternoon, except I’m curled up in bed, not my grandmothers chair. I had excruciating facet joint pain yesterday, that extended over to my hip and down to my knee. I was so close to calling an ambulance, my absolute dread of emergency departments held me back. I managed to get some sleep thanks to medication and woke up feeling ok. Took my daughter to an appointment and now I’m back in agony. It’s at the “I don’t know what to do with myself” level. Which is on the edge of “I wish I hadn’t been born” Trying to distract myself with social media. What’s everyone else up to? #ow #pain #excruciating #sobad #inbed #hotpack #curledup #beeno #cat #tabby #beans #beanmachine #mightyclean #ohsosqueen #distractme #chronicpain #acutepain #heatpack #medication #tryingeverything #spoonie #spooniepain #spoonieproblems #spoonielife


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The face of someone with a #mentalillness Although I mostly struggle with chronic pain these days, for years I battled Bipolar schizoeffective disorder. I still have difficult days, but for the main part good medication has helped me enormously. As I said, it took years to stabilise and I’ve attempted suicide and been an inpatient on a psychiatric ward. I’m not after sympathy, I just want mental illness to be recognised as the same as any other illness, in need of treatment, potentially fatal, but also a chronic condition that can be managed. My heart goes out to anyone feeling sadness and loss over recent deaths, or finding that all the media coverage is triggering in any way. Please make your voice heard, there are people who will listen #mentalhealth #bipolar #schizoeffective #psychology #medication #stable #occasionalbadday #canbemanaged #tookyears #itsabattle #speakout #findhelp #spoonie #spoonielife #spooniepain #spooniefamily


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5 years ago today I graduated from high school . I almost had the urge to give up my senior year . I had a major flare and a whole other diagnoses of having inflammation in my tendons and not being able to use my hands any longer . I had to do two hand surgeries and recover while keeping up with all my homework and classwork. Being in my last year of high school feeling so close to being done then this happened to me where my hands were immobile . Through the two operations and home study programs during recovery I was able to still graduate on time and with my class of 2013 with my friends ❤️💜❤️#LupusBlog #Lupus #SLE #SystemicLupusErythematosus #SystemicLupus #LupusLife #LupusAwareness #LupusPain #LupusSupport #LupusChick #Lupie #Lupies #LupieLife #LupusProblems #LupieProblems #ChronicIllness #ChronicPain #AutoimmuneDisease #Spoonie #SpoonieLife #SpoonieProblems #SpooniePain #SpoonieSupport #InvisibleIllness


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Prize for most stupid place to put a cannula goes to........
Keep catching it on everything (it won't work i can tell the vein has popped but nobody listening to me, they said without it they won't do MRI - that will be in next 3 days hopefully) especially on wheelchair wheels when I'm pushing myself round.

#spoonie #cannula #hospital #spoonielife #spoonietired #spoonieproblems #spooniepain #doncaster #doncasterisgreat #doncasterroyalinfirmaryisntgreat #doncasterroyalinfirmary #sick #ill #disabled #disabledlife #invisibleillnesses


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Sometimes it’s hard to explain this to friends. It’s not that I don’t care, I’m just not able. Today is a public holiday here and I’ve spent all day in bed so far struggling with g.i. Issues, a pain flare and nausea. My goals are to have a shower and make a pot of soup for dinner. I love soup, because I can just chop everything up and let it bubble away and dinner is done. It’s the sitting up part that’s difficult #badday #difficult #longweekend #inbed #noplans #pain #painflare #osteoarthritis #osteoarthritissucks #bursitis #nausea #giissues #spoonie #spooniepain #spoonielife #exhausted #headache #cantsitup #feelsick #friends #friendsarefamily


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UPDATE💜✋🏻: Just a late night thought as I’m having to spend hours tonight icing my hands because they are having pain and some finger joints are swollen tonight , how wonderful would it be if my ice pack never melted and I didn’t need to keep going into the freezer to switch out my ice pack . 😅❄️🗯️ #LupusBlog #Lupus #SLE #SystemicLupus #SystemicLupusErythematosus #LupusLife #LupusChick #LupusWarrior #LupusPain #LupusProblems #LupusSupport #LupusSisters #LupusAwareness #Lupie #LupieLife #LupiePain #LupieSisters #LupieProblems #LupieStrong #ChronicIllness #ChronicIllnessLife #ChronicIllnessPain #ChronicPain #AutoimmuneDisease #InvisibleIllness #Spoonie #SpooniePain #SpoonieProblems


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@princetabbypossum and I snuggled up on the couch to watch some Friday Night Footy. I was so cold after a very busy day, but dinner warmed me right up. My podiatrist says I need a bone scan, as I seem to have a hairline fracture in my ankle. I’ve had it strapped for the past couple of weeks and it’s not getting any better. I’ve just been adding the pain to all the other pain, but I’ll get it seen to #Tabby #cat #kitty #prettykitty #ourboy #beeno #beans #blackandwhite #closeup #snuggledup #couch #footy #fridaynight #afl #aussierules #freezing #socold #warmdinner #soreankle #hairlinefracture #bonescan #spoonie #spooniepain #spoonielife


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I woke up this morning in agony. My joints are not happy about the colder weather, which is so conflicting, because I always loved the cold. The pain of it is very hard to take though. It took me forever to get ready, but we finally left the house and took a trip to @officeworks We love stationery and I got this cute pencil case to keep medication in. We then had an appointment this afternoon and I’m now very thankfully back in bed. I’ve been hanging out for this cooler weather and I feel so betrayed by the pain 😢 #cold #cooler #weather #pain #agony #question #betrayed #officeworks #stationeryaddict #stationery #pencilcase #medication #conflicted #appointment #spoonie #spooniepain #chronicpain #osteoarthritis #osteoarthritissucks #spoonielife


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My girls 21st party was a great success! The cake was from @babycakesperth and had gorgeous ratties and cat on top (second photo). It was a surprise from me and she loved it! Everything went beautifully thanks to my gorgeous friends who came on Friday and Saturday to help prep and set up. They really are family. It was so good to see everyone and even though I’ve been aching all over all day, I’m so happy my baby girl had an amazing party. She’s a spoonie warrior and she’s been so unwell today as a result, but we made good memories. Love you so much @emmy97xox You’re a true princess and my inspiration 💝💗💕🎀 #21 #21stbirthday #party #spooniewarrior #bestie #bestfriends #friendsarefamily #lovedit #worththepain #aching #agony #unwell #sick #memories #princess #mygirl #inspiration #spoonie #fighter #spoonielife #spooniepain #cake #ratties #cat #tabby @princetabbypossum #pink #birthday


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Tabbs looks just how I feel. In so much pain today I’m stuck in bed while my daughter is getting ready for her 21st party. There’s so much to do and I can’t move. Thankfully some dear friends are coming over later to help. This is what chronic pain robs you of #chronicpain #inbed #flare #feelterrible #party #somuch #canthelp #friends #wonderfulpeople #mykidsareamazing #myfriendsarefamily #spoonie #spooniepain #spoonielife #21 #ugh


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UPDATE 💜✋🏻: Being a preschool teacher I put on a brave face and smile for my students . I don’t want them to see me in pain even though many times I am . Today was a very high pain day for me . Both my knees are swollen and red. I can’t even bend my knees with how huge they got . My hands feel like a knife keeps stabbing me . And through it I put a smile and sing songs with my students . Because they also force me to smile when I hear those sweet voices say “Ms. Vaniaaaaaa here yay!” ❤️ warms my heart like I’m doing something right here. #LupusBlog #Lupus #SLE #SystemicLupus #SystemicLupusErythematosus #LupusPain #ChronicPain #ChronicIllness #SpooniePain #InvisibleIllness


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#Repost @lovely_lupus_life with @get_repost
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UPDATE💜✋🏻: High pain day today ☹️. My hands are so swollen I can’t even make out my knuckles and open up my fingers . Plus the throbbing chronic pain running through my hands . Barely slept last night & just tossing and turning . This picture depicts what my hands feel like today . #LupusBlog #Lupus #LupusPain #LupusAwareness #SLE #SystemicLupus #SystemicLupusErythematosus #Lupie #LupusProblems #ChronicPain #ChronicIllness #ChronicIllnessAwareness #ChronicPainWarrior #LupusWarrior #LupusAdvocate #LupusAdvocacy #LupusFighter #Spoonie #SpoonieLife #SpooniePain #LupusSupport
We have a paid Lupus clinical study - DM me for more information. (305)220-2727


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UPDATE💜✋🏻: High pain day today ☹️. My hands are so swollen I can’t even make out my knuckles and open up my fingers . Plus the throbbing chronic pain running through my hands . Barely slept last night & just tossing and turning . This picture depicts what my hands feel like today . #LupusBlog #Lupus #LupusPain #LupusAwareness #SLE #SystemicLupus #SystemicLupusErythematosus #Lupie #LupusProblems #ChronicPain #ChronicIllness #ChronicIllnessAwareness #ChronicPainWarrior #LupusWarrior #LupusAdvocate #LupusAdvocacy #LupusFighter #Spoonie #SpoonieLife #SpooniePain #LupusSupport


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UPDATE💜✋🏻: So recently I been apart of many different studies . Just today I completed a question interview answering questions about my personal experience with dealing with “Fatigue” . I feel as if I am open and comfortable enough to talk about what I’ve been through then talking and participating in these studies for more research and funding for better understanding these chronic illnesses and what elements go along with it is at least something positive that comes with sharing my experience . How many of you guys have dealt or are dealing with Fatigue with your chronic illness ? 💜✋🏻 I’d love to heard about others experiences ⤵️⤵️⤵️⤵️⤵️ #LupusBlog #Lupus #SLE #SystemicLupus #SystemLupusErythematosus #LupusLife #LupusAwareness #LupusAdvocate #LupusAdvocacy #LupusPain #LupusFatigue #LupusWarrior #LupusFighter #LupusChick #LupusSupport #Lupie #LupieLife #LupusProblems #LupieWarrior #Lupies #Spoonie #SpoonieLife #SpooniePain #SpoonieSupport #SpoonieProblems #ChronicIllness #ChronicIllnessAdvocate #InvisibleIllness #AutoimmuneDisease #ChronicPain


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Last night after I’d made dinner I felt full of rage, pure bottled up fury. As I ate I tried to figure out what was wrong, then I realised, it was pain. I’d overdone things and I was in agony. It’s incredible the effect pain has on your brain. I’m feeling so washed out this morning, completely exhausted and sore, but a doctors appointment beckons! Ugh #paingry #pain #chronicpain #angry #fury #bottledup #overdone #brain #spoonie #exhausted #washedout #doctor #appointment #ugh #spoonielife #spooniepain #osteoarthritissucks #bursitis


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Tomorrow is National World Lupus Day ✋🏻💜. In honor of those who have had Lupus affect our lives whether personally or in your family , close friend , neighbor , classmate , co-worker , or someone you knew wear purple tomorrow in honor of those lives ! Lupus doesn’t just affect those diagnosed it affects all of us ! #LupusBlog #Lupus #LupusAwareness #LupusAdvocate #LupusAdvocacy #LupusChick #LupusPain #LupusAwarenessMonth #LupusSupport #LupusSisters #Lupie #LupieSupport #ChronicIllness #ChronicPain #InvisibleIllness #InvisibleDisease #AutoimmuneDisease #Spoonie #SpoonieLife #SpooniePain #SpoonieSupport #SpoonieBlog #SpoonieSisters


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May 10th is World Lupus Day ! In Honor of Lupus Awareness wear purple to support someone you know that has Lupus or a love one with Lupus. An estimated 1.5 million Americans have Lupus. And over 5 million people world wide have Lupus . Someone you know or have met has Lupus ! 💜✋🏻 #LupusBlog #Lupus #SLE #LupusLife #LupusAwareness #LupusAdvocate #LupusAwarenessMonth #LupusChick #LupusSupport #LupusPain #LupusProblems #LupusStatistics #Lupie #LupieLife #LupieChick #Spoonie #SpoonieLife #SpoonieProblems #SpooniePain #SpoonieSupport #ChronicIllness #ChronicIllnessLife #ChronicPain #InvisibleIllness #AutoimmuneDisease


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Telling me “But you don’t look sick “ or “You don’t look like you’re in pain” is like telling me ; “ I don’t believe you when you say you are in pain “ . Just because you cannot see someone’s pain and suffering doesn’t mean it isn’t there . 💜✋🏻 #LupusBlog #Lupus #SLE #SystemicLupus #SystemicLupusErythematosus #LupusAwareness #LupusAdvocate #LupusChick #LupusWarrior #LupusAwarenessMonth #LupusPain #LupusSupport #LupusSisters #LupusLife #Lupie #LupieLife #LupieProblems #LupusProblems #Spoonie #Spoonies #SpoonieLife #SpoonieProblems #SpooniePain #SpoonieSupport #SpoonieChick #SpoonieSisters #ChronicIllness #ChronicIllnessLife #ChronicIllnessWarrior #ChronicIllnessAwareness


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It’s only about 9.12am and already it’s been a rough morning, with GI issues, rescheduled appointments, an accidental injury etc... This useable hours has really hit home, because I do try to keep up. I’ll never stop trying, but I might be kind to myself and spend the rest of the morning in bed #roughmorning #giissues #rescheduled #appointment #accident #pain #useablehours #trytokeepup #neverstoptrying #bekindtomyself #stayinbed #restandrecover #spoonie #spoonielife #spooniepain


4

Today was one of those incredibly busy, crises after crises days. Beeno and I are now officially hiding from the world and anything resembling responsibility #exhausted #crises #busy #incrediblytired #crisesaftercrises #fullon #hiding #overdone #maxedout #nomore #nomoreresponsibilities #needtorest #restandrecharge #everythinghurts #spoonie #spooniepain #spoonieproblems


5

I’m feeling exhausted and incredibly unmotivated this Monday morning. I have to get up and go to appointments. Ugh. Bring on Friday #monday #morning #ugh #exhausted #unmotivated #getup #appointments #doubleugh #doctor #tough #spoonie #spoonielife #spooniepain #osteoarthritissucks #swollenhands #wokeuptired


0

UPDATE💜✋🏻: Today I went to class early in the morning . I didn’t have a pain free night though I woke up with my same pain of my wrist very stiff and in lots of pain and my hands overall in pain . Today was my day to rest from work & of course today I been in pain all day 😓🙁. When I do get a break it doesn’t feel like much of it because I’m suffering with pain & I don’t even get to enjoy it . So frustrating !! 😭 #LupusBlog #Lupus #LupusBlogger #LupusAwareness #LupusAdvocate #LupusAdvocacy #LupusPain #LupusProblems #LupusChick #LupusLife #LupusWarrior #LupusFighter #SLE #SystemicLupus #SystemicLupusErythematosus #ChronicPain #ChronicIllness #ChronicPainWarrior #Spoonie #Spoonies #SpoonieLife #SpoonieProblems #SpooniePain #InvisibleIllness #AutoimmuneDisease #JRA


11

I got the perfect nose boop on camera! @princetabbypossum only allows them at certain times. Managed to get to an appointment this morning, but am struggling with pain this afternoon #perfect #noseboop #nose #snoot #boopthesnoot #cat #tabby #bestcatever #struggling #pain #appointment #doctor #driving #tinsfordinner #waitingformedicationtokickin #spoonie #spooniepain #spoonielife


0

UPDATE✋🏻💜: So this semester I’m taking a child development class at my college . And a big project I have to do is write a report on an Agency or Foundation that could help a hypothetical student who is dealing with something . I chose to have a hypothetical student suffering from arthritis. And wrote about the AMAZING Arthritis Foundation and all the awesome programs they provide to help children with Arthritis and Arthritis related diseases . I loved being able to write about this Foundation because I’ve lived it and I was passionate about spreading awareness about this great organization to better help others ! And also finish my assignment 📖💜.#LupusBlog #Lupus #LupusWarrior #SLE #SystemicLupus #LupusLife #LupusAwareness #LupusAdvocate #LupusPain #ArthritisFoundation #LupusChick #Lupie #LupieLife #ChronicPain #ChronicIllness #ChronicIllnessLife #Spoonie #Spoonies #SpoonieLife #SpooniePain #SpoonieProblems #LupusProblems #InvisibleIllness #AutoimmuneDisease #KidsGetArthritisToo


6

It’s time for another #truthfultuesday I don’t know who drew this, but it sums up how I feel today. I had a minor procedure yesterday that has set off a whole lot of pain. I didn’t get much sleep last night as a result and I’m still in pain today and may be for a few days. I’ve cancelled all of this weeks appointments and rescheduled them for next week, which was fortunately clear. Nw to rest and recover #unexpected #procedure #awfulpain #restandrecover #takeiteasy #notmuchsleep #feelingmiserable #takemymindoffit #distraction #spoonie #spoonieproblems #spooniepain #spoonielife


6

UPDATE💜: Today I adventured out to down town Los Angles to visit the Children’s Hospital of LA. There was a support group for families , kids & teens with all rheumatic diseases . I go to be as a mentor to younger patients that are still in the process of pediatric care. Today at the support group we talked about coping mechanism to de-stress ourselves . Something I found that’s really help me in talking about it . Now that may seem simple but sometimes or many times it’s not . Talking about something personal , or not positive that makes us feel sad or anger can be hard to express. I find talking to someone helps me ; either to my mom or best friend . Also writing down my feelings helped me through a lot of tough times. I kept a journal for almost 10 years and everyday i would write about two pages about my day or what I was going through . I now journal in a different way through my Instagram blog ! Which is even better because I get to hear from others ! And others who I know understand me supporting me , not judging me , and lifting me up ! In the support group today we took some time to make a vision board . On my board I put some quotes that spoke to me . And also some images . I but the OHANA quote because my family is a big distress for me . And my main support . I wrote to inspire others because I hope I can do that even through all my pain I want something good to come from it . I loved the picture of the cracked tree truck & how a beautiful leaf sport from within it showing something beautiful coming from the cracks of our lives. And lastly a picture of Southern California because that’s my home ❤️. #Lupus #LupusBlog #LupusWarrior #LupusLife #LupusFighter #LupusAwareness #LupusAdvocate #LupusPain #LupusLife #LupusProblems #LupusSupport #LupusStrong #Lupie #Lupies #LupieChick #ChronicPain #ChronicIllness #ChronicIllnessLife #Spoonie #Spoonies #SpoonieLife #SpoonieStrong #SpoonieLife #SpoonieSisters #SpoonieProblems #SpooniePain #InvisibleIllness #AutoimmuneDisease #AutoimmuneDiseaseWarrior #JRA #JuvinileArthritis #KidsGetArthritisToo


2

I had to instagram my sandwich! My daughter @emmy97xox made it and it was seriously the most delicious sandwich I’ve had for a long time. Tuna and salad, so very good! She’s a sweetie, my hip bursitis is bad today, so I got to rest while she made lunch #sandwich #tuna #salad #delicious #yum #lunch #daughter #lucky #hip #bursitis #pain #awesomekids #spoonie #spoonielife #spooniepain


2

Time for some #selfcare. Soothing some #spoonie pain with a hot bath, bath bombs and face mask.
#chronicpain #spooniepain #spoonielife


4

I’m in a huge pain flare, and I couldn’t go out for a coffee, so I brought the coffee to me! Such a nice treat on a difficult day #pain #flare #agony #coffee @sanchurro_belmont #delicious #snackpack #cappuccino #UberEatsAUS #arthritis #osteoarthritissucks #cramps #rest #recover #spoonie #spooniepain #spoonielife


0

UPDATE💜✋🏻: Last week I had a really hard week with my pain . Even with lack of sleep , constant pain , i managed to keep up with my class at my college and keep going into work to teach at the preschool . I had a test last week and with my rough week I tried my best to study and not over stress myself . I wasn’t sure how’d I do . Today I revived my first test back and I ended up only missing two questions & getting a 92% on my test . 📝 I was so happy that this pain didn’t get in the way of my school work . This really made my morning ! I know other students don’t deal with half the things Spoonies go through on top of school, work , and personal lives. Even small achievements matter 📕. #Lupus #LupusBlog #Spoonie #SpoonieStudent #LupusLife #LupusAwareness #LupusAdvocate #LupusPain #LupusSupport #LupusWarrior #LupusFighter #LupusChick #LupusLife #Lupie #Lupies #LupieLife #LupieChick #LupieBlog #Spoonie #Spoonies #SpoonieLife #SpooniePain #SpoonieProblems #ChronicIllness #ChronicPain #InvisibleIllness #InvisibleDisease #JRA #JuvinileArthritis


4

I’ve decided to join in with #truthfultuesday It’s been a hot, sweaty day, starting with an appointment, followed by a pain flare, during which I felt very dizzy and disoriented, so I stupidly petted the cat while he was fast asleep, scaring the crap out of him and causing him to puncture my hand with his claws. Totally my fault, such a dumb thing to do. My elbow swelled up and got red hot, which I think was more to do with the pain flare and I’m now lying here trying to summon enough energy to have a shower. There’s also a pile of clean washing in the middle of my bed that needs putting away. Ugh. #sohot #andhumid #sweating #appointment #painflare #dizzy #disoriented #elbow #cat #claw #mybad #puncture #wound #pain #itchy #stupid #noenergy #ugh #washing #blah #spoonie #spoonielife #spooniepain #icepack #shower


10

So after a long weekend of friends, family, holidays, and errand running, this #spoonie is sore all over. So grateful for the opportunity that @terrafreeze gave me to try out thus extra strength pain relief cream. I've tried it out a few times so far but this will be putting it to the big test since literally everything hurts. This storm coming has even my bones aching. I put it on my sore spots, neck and especially wrists and I'm feeling so much better. Just dont get it on your face .
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#extrastrength #ad #painrelief #painreliefcreme #complimentary #sponsoredposts ##pain #jointpain #backpain #arthritispain #terrafreeze #kneepain #neckpain #productselfie #productpic #smilingselfie #smile #spooniecommunity #spooniepain #painmanagement #management


1

UPDATE ✋🏻💜: I just wanted to update all friends & family because I think it’s important to not only document the hard days but also the good days or better days ! Yesterday Friday 4/30 I literally spent my entire day asleep . I only woke up once to eat the rest of the day I was in bed. I woke up today feel better . My hand was a lot less swollen and I felt my spirit a lot more myself today . I’m not in so much pain today and I’m thankful to everyone who send warm thoughts and sent prayers my way . Thank you to everyone supporting my hard journey through this Flare . Stay Strong My Friends 💜. #Lupus #LupusBlog #LupusLife #LupusPain #LupusAwareness #LupusAdvocate #LupusFighter #LupusSupport #LupusFlare #LupusSucks #LupusWarrior #LupusStrong #Lupie #Lupies #LupieLife #LupusProblems #LupieProblems #Spoonie #Spoonies #SpoonieLife #SpooniePain #SpoonieChick #SpoonieProblems #ChronicIllness #ChronicPain #InvisibleIllness #Fibromyalgia #RA #JRA #JuvinileArthritis


3

UPDATE 💜✋🏻: Literally I’m so much F**ing pain tonight 😭 this entire week I’ve come home in horrendous pain . I haven’t had a break . Taking pain killers and crying myself to sleep . I cannot do this every night I can’t . I took so much meds tonight and it’s barely doing anything why have is so scary . 😭 this means it’s not working and my pain levels are just that excelled . I can’t even remember the last night I went to bed so clam and relaxed 🙁. Tonight i just feel so defeated .... #LupusBlog #Lupus #LupusPain #LupusWarrior #LupusAwareness #LupusAdvocate #LupusSupport #Spoonie #Spoonies #SpoonieBlog #SpooniePain #LupusProblems #LupusChick #Lupie #Lupies #LupieChick #ChronicPain #ChronicIllness #ChronicPainWarrior #ChronicIllnessWarrior #InvisibleIllness #AutoimmuneDisease #Arthritis #JRA #RA


14

UPDATE 💜✋🏻: When I read this it made me smile and just lifted my spirit up ✨. I woke up at 6am to leave my house at 8am to go to school and was in school till 11:30am. Then had to run to get some lunch , change clothes , and get to work by 12:30pm. I then had to work with twelve 2 year olds working on my feet all day . Then when I got off work at 6pm I finally get to rest and now both my hands are swollen and hurt so much . I want to just rip my hands off and live without pain for once !!! I work so hard all day and when I get a second for my rest all this stupid pain hits me . And I get so mad at myself because my own body is hurting me & there’s nothing I can do about it . It’s seriously the most frustrating thing ! I pray for a cure one day 💜😭. #Lupus #LupusBlog #LupusBlogger #LupusLife #SLE #SystemicLupus #SystemicLupusErythematosus #LupusPain #LupusSupport #LupusWarrior #LupusProblems #LupusFighter #LupusAwareness #Lupie #LupieLife #LupieSupport #Spoonie #SpoonieLife #SpooniePain #SpoonieSupport #ChronicPain #ChronicIllness #InvisibleIllness


10

@princetabbypossum has perfect paws. It’s been a very trying day, I’m in great pain with a reaction to a tetanus shot and a cracked rib and our power was out for a couple of hours. One of those days #tetanusshot #ow #swollen #rib #fracture #pain #swelling #reaction #cat #kitty #prettykitty #paws #perfectpaws #powerout #tryingday #spoonie #spooniepain #spoonielife


4

That's me dears, 6pm - toddlers are up later!
Btw grow Brits dying got chick ñ? Ugh don't even know what I was typing fell asleep, oh yes - clocks go forward an hou kg rmm
Argh

Goodnight all

#goodnightpost #tiredaf #spoonietired #spooniepain #chronicillness ft uklgul


1

UPDATE💜✋🏻: Last two days I been in a lot of pain . My hands , shoulder and my back (fibromyalgia ) has been killing me . I been trying to stay busy and keep going to work and school . I been going to bed in pain every night . This weather change in California has my body freaking out . The rain has my joints , in pain and my fibromyalgia is acting up . 😞 #LupusBlog #Lupus #SLE #SystemicLupus #LupusPain #LupusWarrior #LupusLife #LupusSupport #LupusSisters #LupusAwareness #LupusAdvocate #Spoonie #Spoonies #SpoonieSupport #SpoonieLife #SpooniePain #ChronicIllness #ChronicPain #Fibromyalgia #InvisibleIllness #AutoimmuneDisease #LupusAdvocate #SystemicLupusErythematosus


15

Well, after a night of tossing turning to find the comfy position Ive woken with random pains - the worst one being my right thigh .... can barely walk without yelping! It’s a new pain for me and I do not like it one bit! Fibro pain is like a box of chocolates.... #fibromyalgiawarrior #fibromyalgia #fibro #chronicpain #chronicillness #pain #sooonie #spooniepain #spoonielife #invisibleillness #invisibledisability #whatsyourlabel


0

Feeling the strain today ☹️ the exhaustion is over whelming - how is everyone? #fibromyalgiawarrior #fibromyalgia #fibro #fibroexhaustion #spoonie #spoonielife #spooniepain #spoonieexhausted #whatsyourlabel


1

This was the temp just after 5pm today. So. Bloody. Hot. I had to spend the day in bed as my big toe joint is being a baby and is all painful and swollen so I can hardly walk. I’ve tried icing it, which simply kicks the pain up another notch, so I’ve bandaged it up so it can’t move and stayed off it. The heat just made it distressing despite our air conditioning. I wish summer would bugger off!!! #overit #cantcope #painandheat #badcombo #hot #heat #toohot #awful #pain #bigtoe #jointpain #swelling #osteoarthritis #osteoarthritissucks #cantwalk #inbed #spoonie #spoonielife #spooniepain


8

Definitely that kind of day 😪 In bed with the ice pack wondering if a jet pack would be better. Omg best autocorrect ever, I meant heat pack 😂 That made me smile 😊 #pain #coldpack #heatpack #jetpack #smile #ow #hurt #inbed #down #chronicpain #spoonie #spooniepain #spoonielife


20

Fucking fed up
Anyone who thinks this shit is the easy life it fun I'll swap places with you no question.

#miserylovescompany #miserable #spoonie #spooniepain #spoonietired #exhsusted #chronicillness #terminalillness #legaliseeuthanasia


16

Oh yeah! I feel this one! Life sucks when it’s painful to move, painful to sit, painful to stand and painful to lie down and you realise you’re out of options #pain #joints #stiff #lockup #likethetinman #arthritis #osteoarthritis #osteoarthritissucks #painful #outofoptions #liedown #sit #stand #move #hardtoexplain #chronicpain #spoonie #spoonielife #spooniepain


5

Spent all day in bed today. Have another virus that’s again affecting my heart and pain. We went to the chemist and supermarket yesterday and the way I feel today it’s as though a demented donkey kicked me all the way there and back. It’s nice having Beeno curled up at the foot of my bed, he makes me feel a quiet happiness #badday #pain #toomuch #virus #illness #sick #inbed #stillinpjs #cat #tabby #beeno @princetabbypossum #pets #love #happiness #spoonie #spoonielife #spooniepain


6