#spooniefamily

Instagram photos and videos

#spooniefamily#spoonie#spoonielife#chronicillness#spoonieproblems#spooniewarrior#chronicpain#invisibleillness#spoonies#ehlersdanlossyndrome#chronicillnesswarrior#zebra#butyoudontlooksick#fibromyalgia#spooniecommunity#spooniestrong#spooniesunite#chronicallyill#funny#dysautonomia#chronicillnesses#relatable

Hashtags #spooniefamily for Instagram

Today is a crutch around the house kind of day 🙁
Trying hard to be positive and remember that at least I got out yesterday and had a wonderful time. But it’s so frustrating when in my head I’ve filled up a week with days out and activities for the kids but in reality I’ve done one day and the next I’m dead on my feet....well ass seeing as I’m struggling to stand! 😩
My back hurts so much and all the painkillers are doing today is making me high af!
I just wish I could have a normal functioning life for at least the next few weeks. Being a spoonie is hard....being a spoonie mum is even harder! *******************************************
#spooniemom #spooniemum #spoonielifeproblems #spoonielife #spooniesofinstagram #disabledmom #chronicallyfighting #chronicillnessblogger #invisibleillnesswarrior #butyoudontlooksick #instablogger #spooniefamily #chronicillnessblogger #snapchatfilter #babewithamobilityaid #fibromyalgia #ehlersdanlossyndrome #hypermobility #bendybabe #backpain #frustrated #feelingguilty #positivitypost #instagood #postoftheday #spoonieselfie #instadaily


1

I was diagnosed in January 2018 with ME/CFS. But I had definitely had it for months before, and probably had it for years before. 🌼

I was diagnosed with BPD in 2010, but had been showing symptoms for years prior. 🌼

Does this mean I wasn’t sick before the doctors graced me with those diagnoses? No. It simply means I was sick and hadn’t been diagnosed. 🌼

Undiagnosed spoonies deserve our love and support too. Imagine going through all the challenges you face physically, mentally, getting help and treatment, getting support from friends and family, imagine having to face all that without even the validation that a diagnosis provides. I’m disgusted to learn that some people in this community refuse to support others simply because a doctor hasn’t yet recognised what is wrong with them. 🌼

If you’re undiagnosed and chronically sick, please know I see you and I believe you. You don’t have to prove your illness to me or anyone else. 💛


18

#canyondelcolca its the second deepest canyon in the world.
We get down by our little legs... we get up - out of breath- by our strong legs.
He beat his lungs condition. I beat my digestive condition. We beat our apparently weaknesses.
We swimmed in this #Rio okay ?!
#edrecoverycommunity #spooniefamily #edwarrior #fernwehcollective #fernweh #wanderlust #sleepoutside #hiking #hikers #travel_captures #summervibes #trekking #hikeperu #hikingpartner


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Please help, if you’re able. My lovely friend @cosmicalvoyager is crowdfunding for medical bills. The clinic which is able to identify and treat her ME is private so she needs help paying for consultations and implementing a treatment plan. If you’d like to help the link is in her profile! ➡️ @cosmicalvoyager 💙
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#spoonie #spooniesunite #spooniesupport #spooniefamily #me #cfs #myalgicencephalomyelitis #mecfs #chronicfatigue #chronicfatiguesyndrome #invisibleillness #butyoudontlooksick #disabled #disability #wheelchair #wheelchairgirl #health #chroniclife #chronicillness #chronicillnesswarrior #chronicpain #recovery #merecovery #cfsrecovery #mecfsrecovery #millionsmissing #canyouseeMEnow #pwme


2

When everything seems to be going wrong ON TOP of having a chronic illness (and fun new symptoms!! 😖) - my car just stalled and I’m supposed to be in court in the morning because a person is contesting a restraining order I filed against them..... it’s another abuser tactic and there’s no reason a judge wouldn’t grant an order another judge already deemed necessary, right? I only have more evidence that I’m coming with.... but still..... 😰😢😫😞 My life sounds like a shit show all the time and I’m so sick of it. What am I doing wrong??? But yeah SUPER hard to keep being like “oh I’m good!” Cuz I don’t want people to start getting sick of my complaining and my anxiety already says they are etc etc etc....
Idk. I’m trying to keep grounded. Don’t disassociate. Stay here. Sleep.
#mentalhealth #chronicillness #cartrouble #anxiety #friends ...
#Repost @its.not.my.salt
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When you take it out on the people around you, even though you know it’s not there fault at all 😔 #chronicinsta #chronicallyill #chronicillness #chronicillnesses #chronicillnesswarrior #spoonie #spoonies #spoonielife #spooniefamily #invisibleillness #butyoudontlooksick #relatable #funny


1

I’m sorry, what? 🤔
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When the mean girl in my brain says “you’re fat, ugly, old, and worthless” I imagine the me in the pic pushing her right out of the picture screaming “bitch, what?!?!”
She’s not always confident, but when she is it’s fierce.
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Same for the pain- I was in a fair amount when I took this, but I do my best to be a sick girl insisting she’s well. 2 months of this IC flare has been exhausting and pain brain sucks- I don’t remember things, I’m in a fog, losing sleep and taking naps randomly. Something’s got to give.
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#ijustlikethispic #imsorrywhat #confidentwomen #loveyourself #lovemyself #icsucks #interstitialcystitis #interstitialcystitiswarrior #painfulbladdersyndrome #icawareness #painfog #chronicpainwarrior #spoonie #spoonielife #spoonieproblems #spooniefamily #icfamily #chronicpainsucks #chronicillnesswarrior #chronicillnessawareness #chronicpainawareness #selfcarefirst #spooniecommunity #positiveselftalk #raiseyourvibration #vibratehigher #goddessintraining #highvibe #highvibrations


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More passenger seat photography vroom 😄


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🥄Our Pain Life Spoonie Feature @pastywhitegirl3 🥄
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At the age of 2, I was in a car vs train accident. I had a head and spinal cord injury; I was in a coma for 10 days and have partial vision loss in my left eye. I lost the use of my left arm but amazingly enough, my hand always worked. After 2 surgeries, my arm works about 10%. Lifetime of back pain, 24/7.
2010 came the fibromyalgia and migraine diagnosis. 2016 was the RA diagnosis and I have been on methotrexate ever since. My hair is falling out and it’s curly now! I’m in constant pain from the RA, my knees are the worst. That’s my story!


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I don’t know why people don’t get this? What do you think chronic pain means?


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I’m taking a few days off work to try and rest. I have been in excruciating pain for about 2 weeks. My muscles are like stone, I’m having difficulty standing, and my pain is amplified! This is all having a huge impact on my mental health. I don’t have a doctors appointment until mid September so I’m going to try contact the doctors tomorrow. I’m just going to have to be brutally honest with them and admit I’m not coping. I hope they will help. Any advice or tips?


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Feel assured that healthy, pain free urination is at hand! 'Urivo' by @vitasciences.
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DM to get your 20% discount code now!


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Don’t be so quick to judge those you do not know! Many of us live a life of pain daily that most of you non ill people will never experience in your lifetimes !


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The first day of school has been so hard. I’m exhausted. Only about an hour left. I think I’m out of spoons but I will push through 🥄💜 #spooniesunite #spoonieproblems #spoonie #mentalillness #chronicpain #chronicfatigue #chronicillness #chronicfatiguesyndrome #spooniefamily #spooniesupport #support


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So I just received a joke of the day card and I will post a new one each day to cheer my spoonie brothers and sisters up #jokes #dadjokes #lol #spoonielife #spooniefamily #myalgicencephalomyelitis #jokeoftheday


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👫Kids dropped off to summer camp
🚶🏻‍♀️ 2 mile walk done
🍓 breakfast consumed
💅🏻 pedicure while watching housewives .
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Why didn’t I put them in summer camp sooner 😆 but, seriously, the next two weeks before school are going to be packed and fun with summer camp, family beach visit, school shopping, and lots more. .
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I’m sad summer is ending, but I thrive on routine and am looking forward to getting back to routine. 📚
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#mswarrior #msstrong #msfit #spooniefit #spoonielife #spoonieproblems #msproblems #spooniefamily #spooniemoms #msmom #spooniewarrior #fuckms #keepsmyelin #fighttothefinish #overcominganxiety #overcomingdepression #overcomingfear


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For the last 8 weeks, this drug (Humira) has been coursing through my veins, attacking my immune system and trying to get it to behave. It’s not exactly been successful, and my doctors and I have decided to discontinue taking it and change course to see if a better outcome is possible for me.
I’ve written about the entire “journey” with it as I feel that from reading about experiences others have had I have gained a knowledge of the real-not-in-the-leaflet experiences that those who take these medications have and that has helped me a lot.
The link is up in the bio if you want to check it out!

#chronicpain #ankylosingspondylitis #spondyloarthritis #chronicillness #invisibleillness #invisiblefight #spooniewarrior #spoonielife #spoonie #Painmanagement #facetjointsyndrome #spooniestrong #autoimmunedisease #humira #humirapen #thedrugsdontwork #autoimmune #fatigue #fibro #chronicallyill #chronicwarrior #selfinjected #mychronicpainjourney #chronicpainireland #spooniefamily #arthritis #linkisinthebio #healthblogger #irishblogger #ipbig


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While we played Rolling Tides, Leighton zoomed around the house in his walker. Once he realizes that he can go faster running than crawling, and get into more things than in this speedy contraption, we are in for it!
#kacotoolegames #simplyfun #almostatoddler #littlereader


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A friend asked how I manage to stay positive and not let my illness affect my self-esteem too much. This has got me thinking and for me it boils down to these 3 rules. 🌸

1. Be grateful. Although I do get upset by my limitations, I choose not to dwell on it all the time and focus on what I do have rather than what I don’t. Frequently reminding myself what I have to be grateful for helps me stay grounded and improves my perception. 🌸

2. Spread positivity. By sharing positivity with others, here on IG and in my conversations with others, I feel better knowing I’ve helped lift other people up in some way. It becomes an infectious habit, and reinforces my positive attitude. It also improves my relationships with others, which I rely on emotionally, and this in turn makes me happier! 🌸

3. Keep passion alive. Keeping passion alive for something can keep your mind busy and gives an altered life some purpose. While I can no longer run, travel or go out with friends, I can pursue other interests from my bed such as learning about tarot and astrology, watching documentaries, gaming, listening to podcasts and talking to others. Pursuing new hobbies and interests can help add meaning to your life when you can no longer do the things you used to enjoy. 🌼

I hope this is helpful to some. I know I’m privileged in some ways which might make this easier for me than others; but regardless there might be a useful message here. 💖


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So I had a really rough time at the end of last week and over the weekend - I’ve been at women’s refuge since Friday. But things are starting to look up - I can stay here for up to a month, and I saw my nurse this morning, and she’s going to help me during the day to sort through my stuff and downsize so I can go from here to move up to Wellington to be with Bae @caitfights - it’s starting to feel real, like it’s actually happening and I’m getting excited! Miss my main gal so much and it’s gonna be amazing to be reunited after over a year!
I have very little spoons today and nothing else to do but read my book 📖 - I’ll be finished it today! Luckily I have 4 more books 📚 in the series left!
Hope y’all have a good Monday ✌️
🧜🏻‍♀️✨✨✨✨✨✨✨✨✨✨✨✨✨✨🧜🏻‍♀️
#read #reading #novel #book #bookstagram #bookworm #booklover #bookphoto #bookaholic #booknerd 🤓#booknerdigans #bookgeek #ilovereading #ilovebooks 🧜🏻‍♀️✨✨✨✨✨✨✨✨✨✨✨✨✨✨🧜🏻‍♀️
#spoonie #spoonielife #spooniewarrior #spooniefamily #spooniefam #chronicpain #chronicpainsucks #chronicpainwarrior #chronicpainwarriorprincess
🧜🏻‍♀️✨✨✨✨✨✨✨✨✨✨✨✨✨✨🧜🏻‍♀️
#keepsmilingkeepfighting


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I'm one of those people who always see the glass half empty. Luckily my gf is the opposite. Seeing how much more useful it is to see things positively I'm working on changing that mindset. These 4 steps are the ways to get there. Tell me are you a glass half full or half empty person? 🥛🥛🥛
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#spoonieproblems
#spoonieprobs
#spooniefamily
#spooniesisters
#butyoudontlooksick
#womanowned
#spoonie
#spooniestrong
#spoonielife
#chronicallyliving
#mom-boss
#womanbusinessowner
#spoonieartist
#chronicallyawesome
#spoonieblogger
#mompreneur
#spooniebusiness
#mentalhealthwarrior
#momtrepreneur
#spoonieladyboss
#chronicallyfabulous
#spooniewarrior
#womanentrepreneur
#smallbusinessowner
#momtrepreneur


0

So very true and something we must all keep in mind when making choices to start drugs with high risk or known issues....


1

My mom is coming for brunch today, so @paddy282 and I made spinach quiche, maple glazed pork, fresh berries, and snickerdoodle cupcakes. Or, are they muffins since they don't have frosting 😉
What do you usually serve for brunch?
#kacotoolegames #brunch #cupcakes


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500 followers! Wow, I know it might be a drop in the ocean to some but it feels pretty awesome 😎
Thankyou to everyone who continue to support me. I’m still very new to the whole awareness and blog/vlog thing but I’ve started to build such a wonderful network of online support. It really does help me to push through the negativities of my illnesses and keep going.
You’re all amazing and interesting people, I love you all and Thankyou again for your support 💋💖 *******************************************
#chronicallyfabulous #spooniesofinstagram #500followers #followers #thankyouall #spoonieawareness #chronicillnessawareness #chronicillnessblogger #spoonieblogger #instafollowers #fibromyalgia #ehlersdanlossyndrome #mentalhealth #awareness #disabilityawareness #supportnetwork #instagood #instablogger #bloggersofinstagram #networking #spooniefamily #spooniefriends #socialmedia #postoftheweek #positivevibes #loveyouall


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Morning run as well as a little side of the road workout
Wasn't able to get it all on video but had 10 minute jog/walk to start, sumo squats, push ups & burpees.. Another 5 minute jog/walk, lunges, jumping jack's, & more push ups
Ran/walked back home again which was another 5 minute jog/run.

Most importantly STRETCH afterwards!! Did a light yoga to stretch all the muscles out!
#fibrofitness #fitfam #fitness #summer #sundayvibes #run #outside #outdoors #nature #naturelover #goodforthesoul #fibromyalgia #fibrofighter #fibrowarrior #chronicillness #chronicpain #chronicfatigue #spoonie #dontgiveup #keepfighting #spooniefamily #activelife #countrygirl #fitnessmotivation #fitnessjourney #morningrun


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My freckle, and bed head, game is strong 💪🏻😆
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1.5 mile walk done before it started to thunder and rain 🌧️ and now onto my fave breakfast—dairy free vanilla yogurt, GF granola, and fresh strawberries 🤤
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My gut has been off since my gluten binge week in NY, but it’s finally feeling better and I’m not looking 4 months pregnant anymore, so that’s a win in my book 🤣🤷🏻‍♀️
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#bighairday #frecklesfordays #mswarrior #msstrong #msfit #spooniefit #spoonielife #spoonieproblems #msproblems #spooniefamily #spooniemoms #msmom #spooniewarrior #fuckms #keepsmyelin #fighttothefinish #overcominganxiety #overcomingdepression #overcomingfear


5

Hi friends,

My PEM is currently off the charts, especially my brain fog. I can’t even begin to describe it because, well, brain fog. 😂 I’m also really weak physically and my limbs feel so heavy. 😴

I’m completely useless atm so I hope you’ll understand why if I haven’t responded to a message or comment yet, I’ll respond as soon as I get some spoons! Thank you so much for your lovely comments on my last post though! You’re all so wonderful and I’m so glad to be a part of this community. 💗 😘 I hope you’re all having a low-symptom Sunday and looking after yourselves. Today my self care looks like Netflix, naps + leftover cake. Do whatever it is you need to do too! 💖


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I saw @findingmorgantyler do this pose ages ago, and ever since have been working on it. I actually laugh when people tell me “wow, your back is so flexible!” When it’s really not the case. I just work on my back a lot. Strengthening while lengthening, hoping for that open heart one day soon ❤️ I think I’m getting there 😊✨
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#abasanas #thesouthernyogi #bedyoga #omseany #bedtimeflow #holisticwellnesscoach #babesinbusiness #bodybeforeboys #spooniefamily #yogateachertraining #bhakti #heartopeners #invisibleillness #yogaprops #variations


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The kiddos joined us at the end of the #lislefrenchmarket today and we got to play at the Splash Pond. Leighton is as adventurous as his older sister and was quite happy playing monkey see, monkey do. Well, that is except for getting wet. He wanted nothing to do with that. 😆😉
#kacotoolegames #mywhy #siblings #boardgamefamily #simplyfun


1

Early Sunday morning with #nospoons - what better way to spend the day than reading 📖 the next book 📚 in The Tomorrow Series: The Third Day, the Frost by #johnmarsden 🧜🏻‍♀️✨✨✨✨✨✨✨✨✨✨✨✨✨✨🧜🏻‍♀️
#read #reading #novel #book #bookstagram #bookworm #booklover #bookphoto #bookaholic #booknerd 🤓#booknerdigans #bookgeek #ilovereading #ilovebooks 🧜🏻‍♀️✨✨✨✨✨✨✨✨✨✨✨✨✨✨🧜🏻‍♀️
#spoonie #spoonielife #spooniewarrior #spooniefamily #spooniefam #chronicpain #chronicpainsucks #chronicpainwarrior #chronicpainwarriorprincess
🧜🏻‍♀️✨✨✨✨✨✨✨✨✨✨✨✨✨✨🧜🏻‍♀️
#keepsmilingkeepfighting


0

🥄 OUR PAIN LIFE SPOONIE FEATURE 🥄 .
Hello! My name is Monica @trimhealthyketomama and I document my hot mess! I am a 38 year old, Thyca Warrior, that has fought with traditional doctors for 19 years over my Care. I have finally won my battle and I am finally on the medicine that is making the different for my (lack of) thyroid health! In this whole process, I developed another auto immune disease which had another. I document my Journey on Insta. I also take photos of my food! Join me so that we can encourage each other!! ~Monica~


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Who would have thought that a joke picture of me at Disney while on vacation back in the 90’s would turn on me to become my life story.... Kinda Ironic


4

Had a lovely morning out shopping with Brad in Bristol even though I was in agony. Got a dress I think I’ll wear for my hen do! 🤞🏻 fingers crossed it looks ok! Long well deserved afternoon nap when we got back! Now we’re chilling at the in laws waiting for some dinner!


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🎁GIVEAWAY TIME! 🎁
Check it out lovelies! The shop it currently closed but I know you all love a good giveaway and hopefully this summer selfcare package won’t disappoint you!
Everything you see here, including the yearly jar of chronically fabulous acts of self care is up for grabs! As well all.... 3 surprise runner up prizes! 🎊🎊🎊🎊 To enter:
1️⃣Follow @spoonie_village & @jarlyjourneys
2️⃣Tag atleast 2 friends who might be interested below (this post only) 👇
3️⃣ Share any of the giveaway images on your grid for an extra entry! (Please tag image and if private profile send a dm screenshot of your repost)
Giveaway closes at 9pm UK time on the 31st August 2018
It’s that simple! One main winner and 3 runners up will be picked at random by an online random name picker on the 2nd September! Open internationally 🌍
Good luck you gorgeous lot! 🍀🤞🏻🍀


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“I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” - John 16:33 🙏🏻


1

#NeedAdvice : how do you deal with SWEATING!? Part of my fibromyalgia is EXTREME hot flashes and EMBARRASSING⬅️ sweating ! How do you deal with it!? 😓


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Today I am resting, watching tv, had a nap and resting some more. I need this, my body needs it. I wished I didn’t need to rest so much but I do, so I have to deal with it. I am eternally grateful for streaming services for giving me large lists of things to choose to watch so I don’t have to watch ‘daytime tv’ and keep a little of my sanity. It’s hard to listen to your body when it needs rest, it’s hard to fight my brains wants to be doing more than I can but I have to work within my limits or I break myself and need days/weeks rest. I have nothing on this week, nothing apart from care coming over to help me shower and spending time with my bf (the kids are away camping’. So I will rest, and daydream about a productive life that I know I won’t have again #spoonieproblems #spoonie #spooniefamily #fibromyalgia #chronicpain #fibro #chronicfatigue #cfs #sacroiliacjointdysfunction #hidradenitissuppurativa #chronicillness #invisibleillness #fibrowarrior


1

Should have posted yesterday 😅 but here’s another grease inspired one 😉 hope you can have a giggle! I’ll leave this image allllll open to your very own interpretation for this one as there are quite a few! 😉🙃
My own personal one comes down to the experiences I had because, pink ladies had a whole new meaning with my ME/CFS! I used to suffer a lot with night sweats and getting really over heated quickly and sweating more than normal, I was always one sweaty pink lady since I relapsed 😂 thankfully these days, due to heavily detoxing and quite a few lifestyle changes I never suffer with them unless it’s weather related 🙌so although not health related, with this recent heatwave I have been one very pink lady again 😅☀️☀️☀️☀️
P.s Instagram giveaway post will be up this evening so keep an eye out if you want to win some Spoonie Village goodies 😘💕


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