#spooniecommunity

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#spooniecommunity#spoonie#spoonielife#chronicillness#chronicpain#spoonieproblems#invisibleillness#spooniesupport#butyoudontlooksick#eds#spoonies#spooniegirl#fibromyalgia#spooniewarrior#spoonieblogger#endometriosis#spoonielove#lupus#chronicallyill#anxiety#spooniefamily#spoonieprobs#spoonieliving#spooniestrong

Hashtags #spooniecommunity for Instagram

I am a workaholic 😬 I really love my work and my whole life I've always loved working with my hands, however I need to learn to put on the breaks💫when I was in pain from my Ankylosing spondylitis I couldn't work as much and as soon as I got relief I went back to my old ways and I'm trying to learn to be more present and connected. Any other workaholics out there? Any tips? 💛🎨✨💡🌟🗞️💫
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#ankylosingspondylitis #ankylosingspondylitisarthritis #ankylosingspondylitisawareness #ankylosingspondylitiswarrior #spoonie #spoonlife #spooniefamily #spooniewarrior #spooniestrong #spooniesisters #spooniesupport #spoonielove #spooniecommunity #spoonieartist #spoonieart #spooniecrafts #workwithyourhands #workaholic #workaholicartist #artistatwork #fiberartist #creativelifehappylife #creativehealing #artishealing #bodypositive #lovewhatyoudo #learntobepresent #lifeofanartist #creativelifehappylife #sarakicksas #sarabakken


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Yesterday, I met with my new nutritionist who is being trained in EoE. I didn’t have high hopes... BUT she seemed really nice and responsive. She took more time with me than what was given. She even said that she had some homework to do, and by the end of the night, she called saying that she might have found a possible elemental formula for me to try. Plus it was really lovely having my mama push me around in a wheelchair. 😊


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Will it be easy? Certainly not. Worth it? Absofrigginlutely! Whatever it is you need or want to do, but you're scared or worried or nervous about, start to do it! Once youve started thats it, the balls are rolling and you'll suddenly find youre actually doing it! The most challenging times in life often have the greatest reward. It may take months or even years but you can do it! Baby steps or a gigantic leap you can get there! And youll feel so proud of yourselves when you do! 💪💪💪💜💜💜 Hope you're all ok. Lots of love and spoons as always always xxx Jo and Poppy xx
#justdoit #willitbeeasynowillitbeworthitabsolutely #positivityeveryday #positivethinking #thinkpositive #behappy #bebrave #inspiration #motivation #goodvibes #happinessisjustastateofmind #strongereveryday #freshstart #newbeginnings #disabledandcute #lupuslooksgoodonme #sickchickandpoppy #inspirationalpage #chronicallyfabulous #antiphospholipidsyndrome #fibromyalgia #endometriosis #butyoudontlooksick #spoonie #spooniecommunity #spoonielife #invisibleillness


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I’m at the point in my health journey where it feels like every time i leave a doctor i only have more questions. I just saw a hematologist through USC who is an APS expert and he doesn’t think I have APS at all 🤷🏼‍♀️ 3 doctors have told me I do but he doesn’t believe i truly have it sooooooo now idk it’s just laughable at this point. This is after the APS expert in Colorado said I do have it but unfortunately she isn’t seeing any of her patients right now so i needed a doctor out here to manage it. Will i ever have things completely figured out? He said he tends to never get cases that aren’t just cut and dry patients and i clearly fall under that category. He wants to thoroughly review my medical history/blood tests (and new tests he ordered) then we will set up my follow up. This smiling picture was taken before the appointment because now I’m feeling a little defeated 😅. Life is frustrating sometimes.
He said i could have pleurisy too because of the persistent chest pain I’ve had with inhalation. Who knows anymore 🤷🏼‍♀️ Never a dull moment when you have health issues.
#Spoonie #ChronicIllness #InvisibleIllness #AutoImmune #Warrior #AntiPhospholipidSyndrome #UndifferentiatedConnectiveTissueDisease #GERD #POTS #OrthostaticHypotension #IST #MastCellActivationSyndrome #Sjorgens #Raynauds #Potsie #Dysautonomia #Sick #DisabilityAwareness #StayStrong #SpoonieWarrior #SpoonieCommunity #SpooniesUnite #ButYouDontLookSick #Awareness #RareDisease #Advocate #LifeWithChronicIllness


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Vlog #38 is up on the channel! It included a dollar tree haul, and my new single serve drink system that is totally inspired by @coupontoprovide, and her amazing fridge! Click the link in the bio 👆🏻 and check it out! #smallyoutuber #smallyoutubearmy #smallyoutubechannel #smallyoutubesupport #smallyoutubercommunity #dollartree #dollartreefinds #dollartreehaul #dollartreecommunity #dollartreefind #dollartreeaddict #dollartreeobsessed #spoonie #spoonielife #spooniestrong #spoonievlogger #spooniecommunity


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Good morning IG! Thank you for the Insta love and the follows! I appreciate you!!! ❤️🦋


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A small step, but hopefully a good one. That will lead to more understanding of the diversity within the disabled community. The more recognition of how chronic illnesses, and different types of disabilities effect the people under the term “disabled” the closer we are to an equal society. #disabilityequality #disabilitydiversity #disabilityaccess #disabilityactivism #disabilityawareness #spooniecommunity #chronicillnesscommunity #invisibleillness #zebrastrong #spoonielife


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Greatest Mobility Device Ever! I use this Drive Medical Transport Chair Rollator. I have severe SFN (small fiber neuropathy) particularly to my legs & feet. It's excruciating painful to walk or apply full weight bearing on my soles of the feet. So I have to walk short distances on my tippy toes like a ballerina where I have less sensitivity. I also suffer from neuromuscular disease that also causes severe muscle weakness/fatigue very easily. I can walk this way short distances with a cane but use this device for longer distances and when I'm too weak or in too much pain to walk, it converts easily into a wheelchair. Gives my body the much needed rest it needs to recover. Having the option to walk or being pushed is such a blessing🙏🏼. You have such little control when you're disabled, at least this gives me the option to walk a few steps, sit and rest and try to walk again and the wheelchair is there when my body can't go anymore. But I'm still fighting this battle and still hopeful I will find some relief!! Wanted others with mobility impairment like me to know about these rollator/wheelchair combos 👍🏼 #mobilityimpaired #drivemedical #spooniewarrior #spooniecommunity #chroniclymedisease #chroniclyme #lymedisease #lymelife #chroniclymewarrior #lymefighter #lamberteaton #lamberteatonmyasthenicsyndrome #lamberteatonsyndrome #neuromusculardisease


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✧Peace and quite ✧
We love going to this hot spring because of views of the lake and it’s located right next to the water. So beautiful. We ended up spending three hours in the pool last night!
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Feeling terrible today physically though. So resting today and hoping for a better tomorrow.
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Check out my new page for our nature adventures! @naturally.nature.with.rae


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We all have fight in us, never underestimate your strength. We have the power to overcome whatever life throws our way, sometimes we may need encouragement to keep fighting. Don’t be afraid. Just like any boxing match there are rounds. Just because you lost one round doesn’t mean you lost the fight. -
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#spooniecommunity #spoonielife #ibdawareness #invisibleillness #inflammatoryboweldisease #ulcerativecolitis #colitis #crohns #crohnsdisease #invisibledisease #lupus #lymedisease #asthma #cysticfibrosis #endometriosis #anxiety #adhd #staystrong #happy #mentalhealth #bestrong #getup #guthealth #quotesaboutlife #chronicpain #chronicallyill #loveyourself #butyoudontlooksick #chronicillness


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Do any of you Lupies fall asleep in random public places or is it just me?? 🙋🏻‍♀️🤣🤣 Because that may or may not have happened today at my favorite coffee shop in Tampa, #buddybrew 😴😴🤫🤣 I had the best of intentions and came here to get some work done but as soon as I plopped down into this super comfy chair it was lights out 😴😴🤤🤤🤦🏻‍♀️🤷🏻‍♀️ oh and that was after coffee too lol ☕️☕️😐😂 #lupusproblems #itriedtobenormalanddostuff #fail #coffeecanthelpme #lupusawareness 🦋💜


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#Repost @indigoyogipunkin (@get_repost)
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Shes almost there°°
Regrann from @weall_floaton - Getting closer everyday🙏💜🙏 Here's how to enter
🔸Repost this flyer with #weall_floaton1234giveaway for 5 extra entries 🔸 For 10 extra entries comment on this post which bath bomb from @positivecreationss that you would want to try if you won. You can still tag your friends for an entry per tag.

Don't forget to follow myself and all the generous sponsors( I will be checking when I do the drawings): @sashka_co @blueridgehemp @positivecreationss @tcmg_designs @becomingtruth **Instagram in no way sponsored or endorsed this giveaway, and is in no way responsible. Just saying.**
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#giveaway #positivevibes #grateful #spreadlove #yogacommunity #spooniecommunity #positivecreationss #blueridgehemp #tcmgdesigns #becomingtruth #humble #blueridgehemp #tcmgdesigns #becomingtruth - #regrann - #regrann


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Shes almost there°°
Regrann from @weall_floaton - Getting closer everyday🙏💜🙏 Here's how to enter
🔸Repost this flyer with #weall_floaton1234giveaway for 5 extra entries 🔸 For 10 extra entries comment on this post which bath bomb from @positivecreationss that you would want to try if you won. You can still tag your friends for an entry per tag.

Don't forget to follow myself and all the generous sponsors( I will be checking when I do the drawings): @sashka_co @blueridgehemp @positivecreationss @tcmg_designs @becomingtruth **Instagram in no way sponsored or endorsed this giveaway, and is in no way responsible. Just saying.**
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#giveaway #positivevibes #grateful #spreadlove #yogacommunity #spooniecommunity #positivecreationss #blueridgehemp #tcmgdesigns #becomingtruth #humble #blueridgehemp #tcmgdesigns #becomingtruth - #regrann - #regrann


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It's been a rough go lately and today is no different. The things that happen to your body when there's not quite enough oxygen or blood to your brain are vast. I experience migraines, visual disturbances, numb hands and feet, I often pass out, just to name a few.
❤️ But I'm still in really great spirits. I still kid and have fun. I'm still thankful for all I have. I still try to get things done. I just have to take lots of rests. I get extra sleep. And mostly I try to forgive myself and my body for the things I think I/it should do but can't.
❤️ Honestly unless you really know me, you don't recognize the pain in squints or forehead wrinkles. You don't see past the jokes and typical dorkieness. Lots of people never know. "I'm ok" is my biggest lie.
❤️ You know what though, it's perfectly fine to not be ok. It doesn't make you any less. Everyone has their struggles. Just make sure you never let them consume you. 😊 ❤️


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#justacard day 2: JUST A CARD
What does it mean to me? Well, put simply, without my lovely customers buying my products I wouldn't have a business! It may not be the biggest business or the most popular, but every sale matters to me, gives me a bit of pocket money to put towards whatever I need (currently a house deposit!). And I'd like to think that although I just sell jewellery and inspirational bracelets, that they mean something more to the recipient too 💖


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Hi everyone! Just wanted to get all shop related info out for over the summer.
Final date for any orders will be Monday 9th July. All orders from that day will be sent out that week/weekend.
I haven’t got a reopening date in mind at the moment but it wouldn’t be until September earliest. I’m going to play it by ear and see how I am healthwise. I’m taking some time away from shop things to focus on my health and what’s next with it all. I’ve had an especially rough month so decided to bring it forward a little, and as I’ve mentioned previously last year I took a break over summer and was a really good time out to clear my head and take some me time.
I am still planning on being around on insta and posting/new doodles. That will never change shop or no shop. I’m just taking some pressure off myself with sorting orders and keeping up with it all ticking over.
I am beyond grateful for everyone’s love and support with Spoonie Village, it honestly means the world to me hearing how people use their orders and where they go. I have set up a sale to say thank you, everything is 20% off from now until the 9th! (Shop link is in bio or search Spoonie Village on Etsy)
I will of course keep you all posted about future decisions, I am aiming to list the new set of postcards tomorrow so that they will be available for you all!
Thank you for understanding, your encouragement, love and support. 💕💕💕💕💕💕💕💕💕
P.S don’t forget to enter giveaway this week, see the grid and Mondays mug of mantras post!


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To all who care to listen, here's the story of what's been going on healthwise these past few months and years of my life.

I was diagnosed with linear scleroderma at age 10. (#sclerodermawarrior) Little was known about it - like how it easily pairs with other autoimmune issues down the line, as I've recently learned. It was easy to see the disease eat away at the left side of my face (🤘S.O. to my #parryrombergsyndrome fellows), but harder to convince others -including many doctors - to believe the pain I would report over the coming years. From my stomach to my eyes to my back muscles, the pain would slowly grow, taking bodily functions with it. From a sudden inability to carry much weight or exert much cardiovascular strength, to an ever-growing range of food allergies, (#ibs hollaaa) my body slowly became a torture cell for me.
This Winter+Spring, I became so weak from an inability to move through the pain or digest food that I lost first the ability to use my hands, then to walk, then to even hold up my own diminishing weight. I felt like a now ticking timebomb towards death as I watched myself lose my strength to fight this unknown monster of diseases.

Enter who I now affectionately refer to as my apocalypse team.

@autumnsorman . @otawistrasse1 . @meteorbasempls and @simon.mpls.uk and @docjefferson and many more, breaking through my isolation into the reality of my decaying state and choosing to fight for me saved and forever changed my life. Late night phone calls, text chains and ER visits would lead me to the #uofmn hospital where I've since been diagnosed with #fibromyalgia and #sjogrenssyndrome , and am beginning treatments for both.

I'm now working on becoming my own greatest advocate - scheduling appointments + continuing therapies and learning how to ask for help when I'm not strong enough to do it on my own. It's a long journey ahead, rebuilding my muscles and navigating the disability system through immense, non-stop physical pain. I am grateful beyond belief for my friends, and seek to connect with others in the #spooniecommunity
Thanks for being here, ✌️&💗


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Most people with an autoimmune disease have heard this common suggestion before: “So have you tried taking immune boosting supplements or herbs??” Here’s a quick video of me explaining why that could actually hurt us instead of help us. 🦋💜 Also not sure what I’m doing with my hands in this video 😂😂😂 but I’m way too tired today to reshoot it with normal hand motions so just watch it, laugh at my weird claw hand, then keep scrolling and go about your day. 🤣🤦🏻‍♀️🤷🏻‍♀️ #lupusawareness 🦋💜 #theclaw


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Today on the blog @samanthaproeschel is sharing her journey with Ulcerative Colitis💓 she touches on moments of uncertainty, tests of strength and a forever changed heart. To read about her journey follow the link in my story!✨ And lastly, lets show her some love for stepping out of her comfort zone to be vulnerable and real about this nasty disease💪🏼💕👏🏼#uc#ulcerativecolitis#colitis#crohns#ibd#ibdawareness#crohnie#spoonie#spoonieproblems#spooniecommunity#crohnsdisease#ccfa#jpouchlife#jpouch#


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#SclerodermaAwareness : Today I was asked if I'd be willing to give a skin sample for research into #scleroderma and its affects on the skin. Well..Obviously I couldn't miss out on the chance of adding another one to my collection 😝 I've got a nice line going 🙌🏼 lol Seriously though I'm always more than happy to do it- being able to help and offer what I can to research into scleroderma is incredibly important to me. Better understanding and treatment is essential!.. And bless my mum being with me she volunteered too! Also having a skin biopsy done so they have healthy skin to compare against skin affected by scleroderma. Wooohooo Go Us!! 💪🏼😄💕💗#sclerodermaawarenessmonth #sclerodermaresearch #skinbiopsy #sclerodermawarrior #livingwithscleroderma #autoimmuneawareness #rarediseaseawareness #connectivetissuedisease #invisibleillness #sclerolife #livingwithchronicillness #spoonielove #spooniecommunity #stayingpositive xxx


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Sorry I’ve not posted properly recently. Not quite in the land of the living atm.
But I’ve been reading about Nefopam - just checking drug interactions with my other meds. And I read on the internet, that it’s not a narcotic, but they’re not sure how it works as a painkiller. But it has been seen to be effective for chronic pain, however there have been no long term studies of this drug. So there are no known long term side effects.
I was switched onto this one as I was on naproxen which caused me to have a stomach bleed.
Has anyone had any experience of nefopam? Or know much about it? - btw I do trust my doctor, I just need to have all the information I can on these things. For peace of mind. #chronicillnesscommunity #invisibleillness #chronicpain #chronicillness #chronicallyill #chronicpainwarrior #ehlerdanlossyndrome #spoonieproblems #hypermobility #spooniecommunity #spoonielife #dysautonomia #zebrastrong #myalgicencephalomyelitis


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Off to the hairdresser to finally get my blonde back! And Im wearing my cat shoes! I lknow theyre a bit marmite but i loves em! 🐱🐱👠👠💕 Hope you're all feeling as well as possible and are having a good day. If not Im sending you love and spoons as I always do. Keep fighting my lovely spoonies! 💪💪💪 #newhairday #excited #catshoes #shoes #sickgirlchic #lupuslooksgoodonme #littlejoys #thatsdarling #smallpleasures #petitjoys #sickchickandpoppy #inspirationalpage #positivevibesonly #spoonieblogger #chronicallyfabulous #disabledandcute #lupus #antiphospholipidsyndrome #fibromyalgia #endometriosis #butyoudontlooksick #spoonie #spooniecommunity #spoonielife #invisibleillnessaware


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Recently my health hasn’t been the best so I’ve been having to rest more and do a lot less than normal. I always want to do more than I can so when I’m forced to rest I find myself feeling guilty and wanting to do something. So I’ve been doing more self care. Self care is so important. No matter if you are healthy, feeling well, or unwell. It’s good for you!! Taking care of yourself is so important for your mental health and that can help your physical health. I’ve been doing a lot more face masks than normal. Painting my nails, it tricks my mind into thinking I’m doing something active and I don’t feel guilty for sitting. When I take a bath I treat myself to more bath bombs or extra bubbles. Putting on a little lipstick or mascara also counts as self care. Brushing your hair out or washing it will leave you feeling better. Self care isn’t just about what you do on the outside, it’s what you do on the inside. It’s eating healthy, but letting yourself have treats. It’s taking vitamins to help your body. Drinking water. Having tea. Its getting enough sleep! Making sure you get fresh air! Opening the curtains in your bedroom and in the living room. If your struggling with your health or not, make sure you are taking care of yourself. Your body and soul deserves care, you can only give it.


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A little late is better than never. In just weeks this pup has transformed from a wee puppy to 35.6lbs. He’s also made me fall in love. He cuddles me when I cry, makes me go out of my comfort zone ( training) and is so much more than a “pet”. He is my furbaby, best friend, and so very intelligent and intuitive. One day he will make his mommy an amazing service dog — can’t wait to relaunch the soap co. To help pay for his training and deck him out in #servicedoggear Love you @prince_puck_theservicepup 🐾❤️ 16 weeks now!! #pucktheservicepup #panicdisorder #servicedogpuppy #sdit #servicepoodle #servicedogsofinstagram #servicedogintraining #psychiatricservicedog #medicalalertdog #panicdisorder #agoraphobic #agoraphobia #spooniestrong #spooniesisters #spooniecommunity #dysautonomia #potsie #autoimmune #lupus #mentalhealthblogger #endthestigma #invisibleillness #heatintolerance #puppylove #agoraphobia


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A little late is better than never. In just weeks this pup has transformed from a wee puppy to 35.6lbs. He’s also made me fall in love. He cuddles me when I cry, makes me go out of my comfort zone ( training) and is so much more than a “pet”. He is my furbaby, best friend, and so very intelligent and intuitive. One day he will make his mommy an amazing service dog — can’t wait to relaunch the soap co. To help pay for his training and deck him out in #servicedoggear Love you @prince_puck_theservicepup 🐾❤️ 16 weeks now!! #pucktheservicepup #panicdisorder #servicedogpuppy #sdit #servicepoodle #servicedogsofinstagram #servicedogintraining #psychiatricservicedog #medicalalertdog #panicdisorder #agoraphobic #agoraphobia #spooniestrong #spooniesisters #spooniecommunity #dysautonomia #potsie #autoimmune #lupus #mentalhealthblogger #mhm #endthestigma #


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Chronic illness is very isolating, even more so when it's invisible. I dread explaining my situation to people who don't already know, so I rarely do it in my offline world. .
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Life teaches us so much, but what can be startling is gaining insight into what you least expect. Parenthood was like that, but having Sarcoidosis flipped my life upside down, and inside out. Nothing can prepare you for this, for chronic, devastating illness.
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I know I'm supposed to end on a positive note, or with sage wisdom: I can't because I want to be honest. My only advice is to enjoy what you have now, and savor life. Live in the moment, but not for the moment. That's what I continue to aim for, even when I miss my mark. 💜
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#livingwithchronicillness #invisibleillness #invisibleillnessawareness #butyoudontlooksick #invisibleillnessvisible #strength #mindfulness #liveinthemoment #spoonieartist #spoonielife #spoonie #spoonieproblems #spooniecommunity #sarcoidosis #uveitis #glaucoma #vertigo #migraine #arthritis #chronicpain


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My room is the hottest room in my house. It’s wonderful in the winter but hard in the summer. Despite central AC and fans my room is still 800 degrees. The heat kicks up my asthma and makes my CRPS flare. Luckily I have a sofa bed on my main floor that is much cooler. Moving to the living room for the next few days. #toohotoutside #spooniecommunity #spoonieproblems #crps #asthma #pleasedontflareup #airconditioning #sofabed


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Interesting fact: every single time I was in the middle of a good dream I would pray that I could just wait until the dream was over to get up. Weird but true 😂.
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MRI Results are back! Doctors said that everything is stable, lesions got smaller, and that there are no new lesions!!🙌🏾🙌🏾.
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If you have any prayer requests or just need to talk or anything just let me know! My DMs are always open :).
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~@notzamira~
#ms #multiplesclerosis #funny #mssucks #mswarrior #msfighter #multiplesclerosisawareness #multiplesclerosisproblems #multiplesclerosisawareness #msawareness #😂 #fightms #chronicillness #whatsyourstory #spoonie #spooniecommunity #memes #prayer #prayerrequest #illness #heyimclumsy #mri #mriresults


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My latest post is now up on my blog. Link in bio. Today I'm talking about appearances, more specifically what I call the appearance complex, which can be a prominent and damaging force in the life of somebody with an invisible illness. Check it out to find out why I was reluctant to post this picture even though my eyeliner was on fleek 🌺🦋✨
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https://ofbooksandstardust.wordpress.com/
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#chronicillness #invisibleillness #blogger #blog #writer #spoonie #spooniecommunity #spoonieblogger #disabledblogger #spoonielife #spinalcordinjury #fibromyalgia #chronicfatigue #chronicpain #majordepressivedisorder #depression #makeanoise #awareness #healing #amethyst #witchesofinstagram #altgirls #gothgoth


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Day 8 - #LBOSkindness
#Repost from @abandcp97 ・・・
Usually a full time college schedule at my university is two 8 week courses ( normal colleges make full time four 16 week courses), but during the summer, I’ve realized my schedule increases by two additional courses for a month ( I guess you would call that overtime; my overtime starts today). Why am I telling you this? Yesterday, my Journalism professor made a good point. She made us come to the conclusion that it may be frustrating to us for her to keep editing what we thought was our “ best work”, but she’s doing this to make us better writers and more successful at our careers. I have my moments of being overwhelmed with college, especially in my senior year, for multiple reasons, but mostly because I’m blessed to finally have found a career I blossom in and I want to already be making a difference, doing something I love, but I’ve realized that college, as much as I want to be done with it ( have the degree), is the key to making me the best I can possibly be at the career I chose, so I will this overtime schedule with all the joy I have in my heart and finish strong because I know my dreams are just a semester ( and a half) away.

Happy Monday Friends. Whatever is overwhelming you right now or you wish would hurry up and be over, know it has a bigger purpose. Push through and give it your all.
Thank you to my Journalism professor for the life and classroom lessons 💙
#college #support #qouteoftheday #cerebralpalsyawareness #cpcan. What’s your favorite quote? Let me, @yoocandoanything and @littleboxesofsunshine know #inspirationalquotes #inspireothers #lifestory


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I got my very first IV infusion today. I fainted when the nurse put the IV in, and I had to be given oxygen. For some reason, I couldn’t gain consciousness. But after that, during the IV, I became extremely nauseous, but I was able to complete the infusion, and I’m home now, laying in bed! 😁


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I like this. 📝🎼🎨🦋💜
#lupusawareness #atticuspoetry 💜💜💜
#Repost @atticuspoetry with @get_repost
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"Fly With What Hurts" #atticuspoetry


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Taking control of your #health is the biggest thing anyone can do for themselves. If you don’t #love yourself then... #cbdoil #cbdhealth #cbdnotopiates #fibromyalgia #cfsme #crps #spinalhealth #endometriosis #insomnia #bilateralthoracicoutletsyndrome #cbdproducts #cbdpets #cbddog #cbddogtreats #winstondogg #winstonandstephanie🐾👣 LINK IN BIO to better #healthyliving #beautifulskin #etc (MY PERSONAL HEALTH ISSUES)⬆️ ask me anything please !! #letmehelpyou #spoonie #420 #spooniecommunity #chronicpain #changeyourlife #askmehow !!!


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Tagging a couple of pages I thought might be interested in helping (if you don’t please don’t feel bad about saying no!) 😊 Anyone from anywhere can be a part of this! •



#spooniebookboxes #spoonie #spoonies #spoonielife #spooniegirl #spooniecommunity #disability #disabled #chronicillness #chronicallyill #mentalillness #carepackages #carepackage #spooniecarepackage #spooniecarepackages #nonprofit #mentalhealth #selfcare


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So every Monday my mum makes me weigh myself to see if I’ve lost any weight and this week I lost 6lbs 🕺🏻


Also I don’t know if this is a coincidence but at about lunchtime I noticed that my period had started without taking any of the progesterone tablets. It’s still hardly there but I thought maybe my body is starting to reverse itself and I’ll start having regular periods again but idk 💁🏼‍♀️ hopefully it’ll stop the nurses from telling me about the cysts that’ll form on my uterus and give me cervical cancer because that is not a great message to start the day with if I’m honest. •


#weightloss
#pots #posturalorthostatictachycardiasyndrome #eds #ehlersdanlossyndrome #pcos #polycysticovariansyndrome #celiacdisease #celiac #aspergers #dysautonomia #tachycardia #ocd #bingeeatingdisorder #obsessivecompulsivedisorder #chronicpain #chronicfatigue #chronicillness #invisibleillness #depression #anxiety #spoonie #zebra #warrior #chronicallyill #chronicillnesswarrior
#spooniecommunity #spoonielife #spoonieproblems #glutenfree


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Love is... cucumber mojito and strawberry (dairy free!) sorbet in a {gluten free} cone 😍😍 Well played, Prague, well played 👌🏼 If you are ever in Prague, you DO NOT want to miss this!


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A fellow me/cfs friend sent me this in my dm today ...she has had me/cfs for 13 yrs ... and I’m happy to follow her here on ig ... I’ve adjusted a lot of things in a short time since my official diagnosis.. 4 months ago I thought I was “fine” it’s ok tho I’ve learned( the hard way of course) to try and pace myself and I’ve got an amazingly supportive family ... that’s definitely a blessing. #chronicillnesswarrior #mecfsawareness #daybyday #keepyourheadup #spooniecommunity


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Yesterday was quite a traumatic day for me. I had a spinal fluid leak from my spinal tap Friday, and every time I sat up or stood up I started throwing up I was in so much pain. I went to the ER and my sobbing and begging to lay down got me in a bed pretty fast! Apparently I didn’t even have enough CSF fluid to surround my brain even when laying down 😭 They gave me fluids and an anesthesiologist was called in to do my blood patch. This photo was taken afterwards. I’ve had a good amount of relief, but am still feeling pretty lousy. On top of it all I found out I have “mild” chiari malformation. I’m seeing my neurosurgeon today and hoping for more answers!! Thank you so much for all the kind messages 💙💚💙💚


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Here’s the latest spoon listed! This one has goldstone, jasper, labradorite, gold, and fluid art. I’m almost sold out so I’ll be pouring more soon! I showed an explanation in the last post but I still had lots of questions, so I’ll make it brief. The spoons are symbolic, and orgonite of sorts. It’s a combination of crystals, metal and art to create a healing piece. The resin applies pressure to amplify the natural healing properties of the crystals. Some use it as a worry stone bc of the design of the spoon. Some carry it with them and some keep it in their home just as a regular crystal would be placed. Makes my heart so happy knowing that these bring chronic pain sufferers some joy!!
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#chronicpain #crystalhealing #chronicillness #ankylosingspondylitis #fibromyalgia #anxiety #spoonie #spoonielife #spoonies #chronicwarrior #autoimmunedisease #spooniecommunity #spoonieproblems #spooniesupport #jasper #labradorite #fluidart #goldstone


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Happy Monday All😁 I have to share this awesome, thoughtful gift I received from @mainemark210 🤗Mark (Mr. C) was my teacher and remained my friend. He is also a fellow spoonie and he is often my cheerleader. He reminds me on bad days I am "Maine Strong" and reminds me what fighters we all are. 👍We also agree on politics and that is the real battle on facebook... hehe!!✌️😉 We often chat there but he is also on Instagram. @mainemark210 ❣️Check out his fabulous garden and beautiful pups🍀🐶
Thank you so very much Mark.💜My cutting board is in my antique dry bar. I really don't want to use it for everyday cooking. Like you mentioned, I will be using it for special occassions, anytime I need to remind myself I'm Maine strong. 😁💪 The magnet is on my fridge, with my family pics and next to our favorite camping destination in Maine.💖 My girls and I went for years, right up to the last year of high school for the twins. Acres of Wildlife.😍 Thank you again. I truly appreciate the gifts and our friendship.💞💕💞
#giftsofmaine #mainegifts #sothoughful #stateofmainemagnet #wonderfulgifts #stateofmainecuttingboard #sokindofyou #thankyouthankyouthankyou #spoonies #mainethewaylifeshouldbe #mainemade #mrcmyteacher #acresofwildlifemaine #bornandraisedmainer #mainestrong #spooniecommunity #spooniesfightback #mralmostright # mrsalwaysright


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So a somewhat productive day even from this somewhat poorly position! A high pain day today.
But Ive rang up all seven of my listed hospitals and changed my address again as my letters still arent getting through to me properly. And Im now on loudspeaker to @plusnet_uk trying to get my broken internet fixed. So Im very glad Ive got a few jobs ticked off today whilst still managing to rest up. All rested up and ready for the hairdressers tommorow! Get my highlights sorted again my hair hasn't been this dark for years! I cant wait!💇💆 Hope you're having a good day and are feeling as well as possible Lots of love and spoons as always Jo. Xx

#broadbandprobs #flareday #alltuckedup #positivityeveryday #positivity #thinkpositive #behappy #bebrave #inspiration #motivation #sickchickandpoppy #inspirationalpage #positivevibesonly #spoonieblogger #chronicallyfabulous #disabledandcute #lupuslooksgoodonme #antiphospholipidsyndrome #fibromyalgia #endometriosis #butyoudontlooksick #spoonie #spooniecommunity #spoonielife #invisibleillness


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This coming weekend is the Crohn’s and Colitis - Take Steps walk here in Columbus!👣 This quote holds a special meaning to me as I know I’m not the person I was before I started this journey with Crohn’s Disease. I found an inner strength I didn’t know existed and for that I am forever thankful💓 Tomorrow I will be sharing another IBD fighter - @samanthaproeschel’s story with all of you in hopes to raise awareness and give power to the PEOPLE behind these diseases 💪🏼 Tag a friend to remind them they are not alone! 👭 #ibd#ibdawareness#crohns#crohnsdisease#colitis#ccfa#humira#remicade#spoonie#spoonielife#spoonieproblems#spooniecommunity#crohnie#spiritualawakening#spiritualpath#spiritualgifts


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Survival is such a funny concept, I can say I survive my illness daily but with chronic illnesses they never truly go away, completely. So maybe it’s a matter of I can say I survived the emotional and mental battle of it, but that also comes back if I am feeling sick enough. Regardless of whether I can ever say I truly “survived” my struggles, I can say the fight inside me is stronger than the obstacles around me. I work hard to stay focused and positive and that can be challenging at times but I know I can do it. Allow the fight inside you to come out swinging like the hulk so no obstacles stand a chance and remember it’s ok to take rest days, that doesn’t make you weak.
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#spooniecommunity #spoonielife #ibdawareness #invisibleillness #inflammatoryboweldisease #ulcerativecolitis #colitis #crohns #crohnsdisease #invisibledisease #lupus #lymedisease #asthma #cysticfibrosis #endometriosis #anxiety #adhd #staystrong #happy #mentalhealth #bestrong #getup #guthealth #quotesaboutlife #chronicpain #chronicallyill #loveyourself #butyoudontlooksick


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☕️GIVEAWAY TIME ☕️
Mantras always help Mondays! I’m giving one of you lovely lot the chance to win the Monday’s mug of mantras this week!
Super simple to enter 🔷Follow me (spoonie_village)
🔷Tag a friend in the comments
🔷Share an image for an extra entry (please tag image, if private account please screenshot and DM me it)
That simple!
Giveaway ends Friday 22nd midnight UK time
Winners will be announced Sunday 24th June
Good luck!


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Living with #Scleroderma: It's iloprost week again and all systems go! 💪🏼 I have this treatment every 3 months and have it infused over 5 days for 6 hours each day. This treatment is mainly used to help with digital ulcers and #Raynaud's symptoms but it can also help our skin in scleroderma patients and give us a bit of a boost. The side effects during the week aren't great but I'll take anything that may help in the long run 🙏🏼 Although I still get ulcers on a regular basis 🙈 I've said it before but they'd be a whole lot worse if I didn't have the #iloprost infusions and that's something I don't want to risk, so at the moment I'll carry on.. let's do this 💪🏼 xxxx #sclerodermaawareness #livingwithscleroderma #autoimmunedisease #chronicillness #digitalulcers #rarediseaseawareness #connectivetissuedisease #invisibleillness #sclerolife #livingwithchronicillness #spooniecommunity #spoonielife #sclerodermaawarenessmonth xxx 💗


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What do you call a vertically challenged person who escaped a high security prison who can also communicate with the dead?
A short medium at large
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#popart #art #photoshopart #pun #roylichtenstein #blonde #coeliac #coeliacproblems #celiac #hashimotos #hashimotosdisease #hypothyroidism #endo #spoonie #spooniecommunity #glutenfree #glutenfreevegetarian


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So I found out recently that my #painmanagement dr is getting off the grid-with all the horrible new CDC Guidelines he feels he’s unable to properly treat #chronicpainpatients so he’s no longer treating those on #disability .I’ve been trying to get on disability this year-it took a super long time for me to get my parents to accept that I needed to be on disability because at this point I just can’t work.My pain is just too bad-I’ve looked into so many options but I never got a degree and my brain doesn’t work like it used to,neither does my body...I’ve really wanted to work but I just can’t hold up a job.So now my choices are 1.Keep trying to get on disability and hope against all hopes that there’s a pain management dr who’s willing to prescribe opioids(which if you’re a CPP you know is basically impossible),or 2.I drop the disability thing,find some type of job I can do so I can still have insurance and continue to see the ONLY dr who has understood my health issues and treated them seriously.The first doesn’t feel like an option at all...I have no idea what I’m gonna do for work when I’m as bed bound as I’ve been...but I really need this pain dr-he showed up at the #DPP2018rally in April-he understands the importance of opioids.So yeah...this is going to be tough.I mean,it’s embarsssing how much help I need in life.But this is forcing me to fight even harder which I’m gonna take as a good thing despite everything...this weekend I’ve been encouraged because the last three days in a row I’ve swam in the pool,taken a shower(I usually take baths and a lot of time need help with even that..),and been doing more small things around the house.I know those things seem small but they are HUGE for me.So huge.Ive missed not being able to do normal things on my own...pain has taken so much independence from me already.It feels so good when I’m able to do that stuff.Its not that I’ve been pain free-half the time I’ve been in bed trying to sleep cause I feel so horrible.But it feels good to do things-it makes me think I have a chance at finding some work to do.Im a long ways off but for right now I’m gonna be super proud of myself for doing some small stuff on my own.


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Doctor visits... June 11th - Nutritionist Appointment
June 15th - GI Appointment
June 16th - Doctors Appointment
June 18th - IV Infusion
June 19th - Nutritionist Appointment
June 20th - GI Appointment
June 21st - Allergist Appointment


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All of this balled up into one!! 🙄😫😫😫 It can get #lonley! Before I was #diagnosed ,I thought I was a Lone Ranger in this 😂😂along with some confusion and doubt. Especially the days when The pain or #symptoms whet dormant (non flare up day) and you’d think 🤔 💭 Was the pain ,#yesterday really that bad? Was I just being #lazy Did I just not want to work? Did I do that whole ,you make yourself feel pain,because your #thinking about it,and you don’t wanna #work??!!😳😫😫 😂😂😂 Then In a few days ,when the pain comes back ,and your like #hellnaw I wasn’t making that up,or exaggerating!! 😂😂😂 It was just as bad as I thought 😫😫😂😂😂 That #up and #down #game killed me tho 🙄🙄😫😫 and still does sometimes 😨😰😫😫 #so #irritating 🤬😡😡😡 #fibrofog #fibromyalgia #fibrowarrior #spoonie #fibrowarrior #fibromyalgiaawareness #chronicpain #spoonielife #spooniecommunity #spooniesisters #spooniesupport #painting #sad #sadquotes #pain #sorrow #flareup #flareups


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