#spoonie

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Golden hour ☀️ This has been such a good weekend - girly picnic at the Botanical Gardens, brunch date with my loves & managed to pull myself together for date night. X #invisibleillness
So in love with this zebra surprise from @slippinonspoons especially during EDS awareness month! 🦓🦓 And these @spoonspirations_ stickers are AMAZING 😍 #chronicillness #spoonie #invisibleillness #edsawareness #ehlersdanlossyndrome
I found this gem in my fridge and thought it couldn’t come at a better time, because if there’s one thing I need to help lower the inflammation in my digestive tract, it’s turmeric!! 🙌🏼😋 ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Crohn’s symptom wise, I definitely had a much better day today. I didn’t have to 🏃🏻‍♀️ to the 🚽 today, so I’ll call that a win!! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ The grand reappearance of bloody 💩 has definitely messed me up a bit mentally, but I can’t focus on all of the “what ifs” because I will drive myself nuts!🙈☹️ ⠀⠀⠀⠀⠀⠀⠀⠀⠀ What if my asshole continues to explode What if I can’t take care of my kids What if I have to go on prednisone What if I can’t get a grip of this flare ⠀⠀⠀⠀⠀⠀⠀⠀⠀ These are just a few examples of what has been floating around in my mind today. I have no idea what direction this flare will take, but I will do everything in my power to get this thing under control. I also know that flares often do what they want, so I’ll hope for the best!🤪🙏🏼 ⠀⠀⠀⠀⠀⠀⠀⠀⠀ When my flare started yesterday I committed to focus on one positive thing that’s happened each day, so this is it: My daughter chose ginger kombucha over chocolate ice cream for her dessert tonight!! That instantly counted as my main positive for the day!!🙌🏼😁 ⠀⠀⠀⠀⠀⠀⠀⠀⠀ #LivingInGratitude
I was 100% feeling good yesterday. I hadn’t worn my makeup in a long time, or gone out for breakfast without a panic attack before hand, and worked so hard for a market that albeit got cancelled but I had a really good day. I didn’t worry about my pain or anything else, and I’ve recently met a friend who has been making my days a little brighter recently. Come 11pm, I had the most severe attack I’ve had in a long time. my body was so hot, but was shivering like an addict needing there next hit. my teeth were chattering so hard it was almost comical. the pain and nausea in my stomach coupled with the horrendous pain in my head, it wasn’t long till I was bent over the shower trying to be sick. I have a severe phobia of puking, but when I feel like this id give anything just to puke away the pain. but I couldn’t. It lasted that bad all of half an hour. but it exhausted me so bad I didn’t know weather I was going in and out of consciousnesses or just having short seconds of sleep. the pain continued into my sleep as I had terrible nightmares where I could feel the pain in my stomach, which made them feel all the more real. And because of this I now feel I’ve gone backwards in my anxiety and don’t want to leave the house at all because when I push myself to do normal human things, this happens. I took this selfie only a few hours before hand, and that’s the epitome of having an invisible illness. You can look like the healthiest person on earth, but within seconds we can feel like our whole body is shutting down and there is nothing we can do about it. What you see on the internet or social media, is not people’s whole reality. It’s only a small glimpse into what people go through in there lives. Always choose to be kind and forgiving to others, as the cover doesn’t show the story ❤️ . . #chronicillness #chronicpain #chronicpainwarrior #chronicmigraine #migraine #IC #interstitialcystitis #reality #nofilter #notouchups #tired #fatigued #fighter #spoonie #effyourbeautystandards #effyourbodystandards #selfacceptance #journey #loveyourself #dontgiveup #keepgoing #painisweaknessleavingthebody #migraineawareness #relief #mentalhealth #mentalhealthawareness #spoonielife
Hey lovelies 😘 I hope everyone is having a fantastic weekend! 💚 I seem to be getting out of my reading slump and I'm really enjoying my current audiobook, The Scorpio Races by Maggie Stiefvater. I picked up this Isobelle Carmody book at a second hand bookstore months ago and it must have slipped under my couch because I found it under there when I was looking for a cat toy that Quinn lost under there. Gotta love surprise books! 😅 . . Health update - I'm now seeing a physiotherapist who identified my hip pain as a torn tendon in the right hip and bursitis in both hips. I'm getting acupuncture and doing lots of strengthening exercises (ouchies!). It will take a lot of work, patience and discipline to heal. I've also been referred to begin testing for fibromyalgia (an autoimmune pain condition). I really hope I don't have it, but have suspected for a while that I might. Either way, I will continue to focus on healing and good times ahead! 💚 ... ... ... ... ... ... ... ... ... ... ... ... #book #instabook #books #bookstagram #bookstagrammer #booksarelife #booksarelove #booklover #bookgeek #booknerd #bookworm #bookdragon #bookraptor #bookdiva #bibliophile #reading #readingismagic #prettybook #bookphotography #beautifulbook #stunningbook #bookoutside #bookandleaves #bookandnature #spoonie #spoonieproblems #spoonielife
Genova, Italy is so beautiful! 🇮🇪 Yesterday I climbed 172 stairs up and then back down again to the viewing point of the lighthouse 'Lanterna Di Genova', my legs are useless today but it has been so worth it! I am absolutely loving the weather and we have met up with our friends here. Having a rest day today and I think we're going to a museum in the evening, although I'm not sure yet. We have an accessible room in our hotel which is a godsend, and we got my Powerchair to Italy, so it's officially the first wheelchair I have ever owned to become an international traveler 😂 Gulliver is living up to his name with his travels! . . . The first picture is the prison where Marco Polo was imprisoned. The window in the top right of the photograph looks out from his cell. The second is my 'pretend you're not knackered after flights of stairs' face 👻😂 The third is a century point at the base of the Lanterna. Picture 4 is one of the beautiful buildings, the buildings shown are pretty typical of the central area of Genoa (Genova in Italian), and the last picture is of a solid marble church, I cannot remember the name, but it is full of Baroque and Rococo architecture and art! It is the most stunning place, even more beautiful than the Cathedrals in the UK. Our churches look as plain as daisies next to these! . . . #spoonie #travel #genova #italy #adventure #disabledtravel #powerchair #vlogger #vlogging #travelvlog #zoestribeadventure #zoestribe
Brunch counts as a hobby right?
So the pulled back muscle is mainly gone.. I have a few aches and pains doing certain things.. But I am starting to feel back to my old "norm" ...which is less painful then that... But still painful.. So now just back to body aches.. Woo gotta love chronic pain! 😏 #addisonsdisease #addisons #addisonsdiseaseawareness #fibro #fibromyalgia #invisiblepain #invisabledisease #invisibleillness #chronicallysick #chronicpainlife #chronicpain #chronicillnesscat #pain #pained #sick #ill #sickness #illness #painsomnia #insomniac #insomnia #insomniacproblems #insomniaproblems #restless #disease #spoonie #spoonies #mylife
Grand Canyon, Arizona 🇺🇸 Randomly opened the shade to my window and saw this spectacular sight earlier today. I’ve flown over The Grand Canyon many times, but this view really amazed me. I’ve visited The Grand Canyon once, but it was many years ago, so I won’t even pretend to know the ins and outs of visiting it today. But I will say, when you can, always take the window seat. ✈️ #accessibletravel #accessibility #disability #disabledtraveller #spoonietravel #paintravel #pain #spoonie #chonicpain #chronicillness #invisibleillness #ehlersdanlossyndrome #fibromyalgia #hypermobility #sickgirltravels #arizona #grandcanyon #flying #plane
Day 27: What People Don’t See . . An invisible illness. . . Below the surface, living with lupus can mean days spent in bed, missed appointments, and alternate days when we seem "fine." There's so much more to lupus than meets the eye. We know that lupus comes with hundreds of possible combinations of symptoms, many of which appear invisible to outsiders. Most people don't see the many symptoms we experience. . . @lupusorg @lupusresearchalliance @lupusla #lupus #lupusawareness #spoonie #themoreyouknow #someoneyouknowhaslupus #lupusstrong #lupuswarrior #lupusawarenessmonth #livingwithlupus
Brain fog. Brain...loading. Brain...frozen. Brain...broken. Cognitive dysfunction - it's common in the chronic disease community, especially among those who experience pain, fatigue, and a constant struggle to survive 24/7/365. Our bodies are working overtime to fight their own self-destructive cells/skin/organs/joints/tissue. That overtime work siphons necessary energy from our minds, causing them to slow down and miss connections. If this was your brain every day, would you want some new software too? #cureAS #curemydisease #cureus #cureme #findacure #ankylosingspondylitis #beingcharis #chroniclife #cure #chronicdisease #mentalhealth #brainfog #spondylitis #spoonie #sicklife #believeME #chronicpain #rhuem #disease #iammydisease
Good times + crazy friends for 20+ years = amazing memories 😊💕🥂
The Road Back to Emma is all about getting back to this woman right here. I have to say though, I'll be a different version of her, a better version because of everything chronic illness has taught me. Emma 2.0. I have dreams and ambition to be something, to do something. I want to make myself exceedingly happy and make a difference for others. After all, I'm an utter boot of a woman and should really put this mouth to good use (not in a naughty way). But I still want to get back to being this woman too. She went to exhibitions at weekends, wandered round museums, drooled over dresses on display at the Victoria & Albert. She went to movies without waiting for the inevitable migraine, drank cocktails, shook her tail feather. The road back to me might take some time, some persistance. I'll bloody well get there though. #spoonie #chronicpain #chronicillness #invisibleillness #selfcare #bekind #healingvibes #healingjourney #imafighter #theroadbacktoemma
I keep debating about cutting my hair or growing it out more. It's at a weird stage where it annoys the crap outta me, but I also kinda loves it? Longer hair = more hair dyeing possibilities, right? #gratuitousselfie #insomnia #latenightthoughts #nerdlife #ioncolorbrilliance #purplehair #bluehair #guytangismyhero #spoonie
I love to take pictures in rooms that I'm staying in. If you don't like them, fuck off. I don't care about your health trolling, your opinion about my body or any other gross stuff. AND STRAIGHT MEN keep away from my profile and my dms. I don't want to fuck with you, ever. I don't even want to talk to you. Bye. #queer #queermarshmallow #nonbinary #femme #trans #spoonie #selfcare #selflove #bodypositivity #fatspo #art #nsfw #nude #misandrist #fuckoffmen #radicalvulnerability #radicalsoftness #imgorgeous
I’ll try and upload this again! 🙄A little progress video... I feel quite vulnerable sharing the first video as I can see just how uncomfortable I was. Being overtly sexy isn’t something which comes easy for me. This goes back to 2016, my first pole course. No confidence in myself looks-wise or my abilities. There’s a number of things I put this down to, years of bullying which sticks, bad relationships with men and also myself. I got ill a few months after the first video and I’ve had a pretty shitty time of it, not just with my condition but other personal issues. It was always my goal to get back to pole and I’m so glad I did! Whilst I’m in that studio my confidence is up! I’m also getting stronger and constantly learning new things. I think it’s good for a person’s mental health to have a creative outlet and to be constantly trying to get out of your comfort zone and trying something new! I’ll say it again, everyone needs to try pole! I just wanted to show, if I can do it then anyone can 💜 #progress #pole #poledancer #dancer #poledancing #danceschool #strongwomen #fitfam #instafit #routine #choreography #fitgirl #selfcare #selflove #bodypositivity #sexy #confidence #empowerment #knowyourworth #workingonme #spoonie #recovery #motivation #mixedgirl #thickfit #vybzkartel #dancehall #helloboys #progress
The sweetest morning cuddles 💕 Sam has been an inspiration in my recovery. He rests when he is tired (everywhere on top of anything), he plays and cuddles whenever he feels like it, and he walks away if he's not into anything. I spent many years ignoring a lot of my needs, especially in my work. I had to show what I was capable of, learning as much as possible in the least amount of time, being constantly available and on top of things. It's hard when you start your first couple of jobs within your chosen work field. You have the pressure to gain experience and it doesn't really matter if the job isn't the right fit for you, you are lucky you even got a job somewhat in line with what you spent the past 4 years at the university aiming for. So I did what I think a lot of us have to do: work like crazy doing something that isn't quite right for you, that involves things that isn't good for you, while striving to get a job that is a better fit a couple of years down the line. A healthier fit. But a lot of us don't get there before burning out. So now I'm back to square one. Setting up life in a sustainable way, like it should have been all along. It has taken a massive breakdown from stress, 5 doctors, 2 therapists, numerous tests, 1 surgery and 1,5 years of sick leave for society to listen. Isn't that a great use of resources....? #catsofinstagram #cat #adoptdontshop #cuddlecat #redwhitecat #whiteredcat #samthecat #goodmorning #sunday #sundaymood #instacat #catstagram #cats_of_instagram #stress #burnedout #spoonie #anxiety #healthyliving #utmattning #utmattningssyndrom #vägentillbaka
Had a most magical night with my mother 🌹 In March she surprised me with Beauty and The Beast tickets for my birthday! So thankful I got to enjoy myself. I totally felt like a princess 💖 now time to get rest and recharged my spoons for tomorrow because all those hills made me exhausted! #Championofyes #ChronicallyFabulous #migraines #Vasculitis #spoonie #youlookfinetome #chronicpain
‘Tis the season🌱
When I was a kid, I would eat ice cream at every opportunity - if I was allowed to, I would've lived on it! When I was at my sickest, about 10 years ago, ice cream was one of the few things I could stomach - I practically lived on Oreo McFlurries. Nowadays, I rarely eat ice cream because I never know whether my body will accept or reject it! Today's visit to Le Caravelle, after a Vietnamese feast, was definitely worth all the tummy pains I'm having now! Their coconut gelato is my fave. No regrets. . . . . . . . . . . . . #inflammatribe #autoimmune #chronicillness #chronicpain #chronicfatigue #invisibleillness #ibd #ibdawareness #crohnsdisease #crohns #ulcerativecolitis #colitis #endometriosis #pcos #diabetes #fibromyalgia #pots #herniateddisc #backpain #backinjury #ankylosingspondylitis #rheumatoidarthritis #arthritis #lupus #epilepsy #multiplesclerosis #spoonie #gelato #coconut #dessert
I am so excited about my brand!!!! • If you are looking for a fancy and elegant medical Id jewelry.You've come to the right place!😊 • Subscribe and receive 15% off your first order. *Stay tuned, we are launching very soon ✨ - Worldwide shipping- . . . . . . . . . . . . #invisibleillness #shopping #disabled #fashionblogger #jewelry #chronicallyill #lupus #design #diamond #health #kidneydisease #gold #designer #awareness #beautiful #crystal #accessories #fibromyalgia #chronicpain #fashion #recovery #mtlblog #gift #women #sofiancyofficial #chronicfatigue #luxury #lymedisease #tachycardia #illness
I'm not good right now, somehow I've picked up a cold and as we know, it's affected me so much worse than it should. I feel at deaths door but I'm going to drag myself out later to see family as promised. That action is probably going to take me off my feet for at least a week or more. Having a cold in this lovely weather just ain't right :( #mecfs #myalgicencephalomyelitis #millionsmissing #chronicillness #fatigue #invisibleillness #may12 #millionsmissinguk #invisibledisease #spoonie #spoonielife #awareness #health #dontquit #mecfswarrior #invisibledisability #invisibleillnessawareness #butyoudontlooksick #canyouseeMEnow #notalldisabilitiesarevisible #endmecfs #thediseaseformerlyknownascfs #ME #meaction #timeforunrest
I've been sick all day but I tried to push through to help with the projects that need to be done before moving. Big mistake. Every time I stopped feeling so nauseous I tried to help. Then that would make me feel awful again. Husband finally told me to go rest. If I'm not better tomorrow it will be a day on the couch so I can mend instead of potentially setting myself back another day. Hope that you are having a great and safe weekend! * * * * Use code dabbinrose at hotboxwholesale.com to save 💰💸 on awesome cannabis clothing and gear!🌹#suckit #pinkiesup #710 #420 #dab #dabs #weshoulddab #weed #dabbinrose #cannabis #cannabiscommunity #cannamom #marijuana #maryjane #worldreefers #medicatedlady #PTSD #fibromyalgia #fibrowarrior #anxiety #highfivevape #spoonie
My blog post with lots of information you need to know about tick-borne illness is finally up! It is long, I know, but I would really appreciate it if every one of you read the whole thing (clickable link in bio). People shouldn’t have to suffer the way I have and awareness is the first step to stopping that from happening. I’m sorry it took so long to get up, my health level is low right now is it was very difficult to write. I’m now writing up the giveaway blog post. The giveaway will require you to know info from my Tick-borne illness and Lyme disease awareness month blog post, so get reading 😊 I would love to know if you leant anything new from it 💚 #lymediseaseawarenessmonth #lymediseaseawareness #lymedisease #tickborneillness #tickbornediseases #polishandpaws #polishandpawsblog
Perfect end to a pretty awesome day - birthday dinner and s’mores with friends; new and old.
Flirty got to enjoy a midnight snack, tonight. - I got a shipment of 15 bags of @espomanaturals Sani-Care bedding late this morning (this is what I use for her litter box). I buy them in large quantities because I don’t pay as much for shipping, that way. It’s a decent bit of work to load then onto the dolly and haul them to the shed in the backyard for storage, though, and the high temperature was near 100°, today. Unfortunately, I inherited my mother’s heat intolerance (although mine isn’t as extreme as hers), so I needed to wait to move them. It was still 80° at midnight, but at least there was no sun and a light breeze. - Since I needed to take the bedding through her paddock and into the back yard, I put her on a tie out in the front where she could munch on some grass while I worked. She certainly enjoyed her late night snack! This shipment of bedding should last us for most of the summer, since she spends quite a bit of time outside in her paddock when I am having a good day. #servicehorse #servicehorseintraining #miniatureservicehorse #miniatureservicehorseintraining #miniservicehorse #miniservicehorseintraining #Miniaturehorse #minihorse #americanminiaturehorse #americanminiaturehorseassociation #amha #miniisbetter #goodthingscomeinsmallpackages #horsesofinstagram #maresofinstagram #minisofinstagram #ptsd #ptsdsucks #spoonie #spoonielife #donottouch #minihorsesofinstagram - Follow our pawsome partners! @the.lady.and.the.hounds @honeydippedtimbit @comehell.orhighwater @sammy.the.service.dog @catwithamission @sofie3_p.sd4 @cadi.and.cash @servicedogsierra @dakoda.the.servicehound - Brand reps for: @patchwork_and_paws (use code PNPFLIRTY17 for a discount!) @only_leash @circussideshowproductions @jessabelleleads
My very first dogless morning walk since I rehomed Yuki. It went well! #spendingspoons #happydays #chronicpain #fibromyalgia #spoonie #norway
🎶... easy like Sunday morning... 🎶 (Faith No More version) So I don't seem to be able to shake the low level cold/laringitis/etc. I've been nursing for the last couple of weeks. Every afternoon I start to feel like s###, having difficulties swallowing, etc. Plus a midlevel endo/adeno flare up that leaves me cursing my reproductive organs and chest addages most of the time. Add in some weird fibro pains (besides the usual joints/muscle/fascia BS the whole rip cage, and scalp - WTF?!) to the mix and you have a very cranky K. Just ask my family... Will have this checked out next week but for now I'm upping my #alternativemedicine / #plantmedicine dosages. Vegan DHA oil (with Frankincense EO) plus Vit D drops, Oregano EO and OnGuard essential oils blend (Nota Bene: Oregano is really really potent, and HOT - I only use it +/- 4 days in a row as it can get kinda heavy on the liver), homemade Angelica tincture. And some good old fashioned allopathic painkiller drops (can't take most of the low level painkillers due to my bloodclotting issues, and I don't feel like stepping up to Tramadol - yet; wish me luck). All downed with a elderflower/nettle infusion. Woke up feeling a tiny bit better than yesterday. So an easy Sunday it is! Have a nice Sunday Y'all! #holistichealing #doterra #essentialoils #AngelicaArchangelica #selfhealing #dha #plantbased #metamizol #novaminsulfon #painkiller #spoonie #spooniestrong #notsostrongatm #chronicillness #flareupssuck #iamthestorm #breathwork #thepowerofbreath #aspirinlikedefect #marburglpolymorphism #endometriosis #adenomyosis #fibromyalgia #fnm #faithnomore #easylikesundaymorning #gratitude #choosewonder
I just completed my 1st puzzle since I became disabled with multiple daily migraines 4 years ago. And not just any puzzle either, I choose to do a 3D Crystal Duck Puzzle this evening without instructions. Doing puzzles have always calmed me; back in College I would sit down and do a 500 to 750 piece puzzle in just one day! (Ask @ambermunos she will tell you) But when the Inflamation inside my Brain took over thanks to Migraines, I lost so many abilities that healthy people take for granted. Thankfully I am on the mend with each medicine tweak my Doctors do and I see a little more of me each day. I may not be 100% Me, but every inch in the right direction is a victory for me! #MastCell #MastCellActivationSyndrome #MCAS #MCAD #MastCellActivationDisorder #EhlersDanlos #EhlersDanlosSyndrome #EDS #hypermobility #SpoonTheory #Spoonie #Spoons #ProfessionalPatient   #InvisibleIllness   #Migraine #ClusterHeadache #SuicideHeadaches #ChronicPain #ChronicFatigue #Chronicillness #ZebrasUnite #ZebraStrong #ZebraStripes #zebra #spineissues #Spine #POTS #Puzzle #ehlersdanlosawareness #BePuzzled
Chicago, Illinois 🇺🇸 We popped into a Chicago classic for dinner... Portillo’s! They have an autographed photo of Dennis Farina, so you know it’s good. #accessibletravel #accessibility #disability #disabledtraveller #spoonietravel #paintravel #pain #spoonie #chonicpain #chronicillness #invisibleillness #ehlersdanlossyndrome #fibromyalgia #hypermobility #sickgirltravels #chicago #portillos
Wine and a shot. It’s called balance. #priorities
Looking back on some favorite moments. My brother was so empathetic on this trip; he even went around the corner the save my ears from the rustling of opening the present. I am still talking too loud so dad can hear. 👂 Pez Batman for my brother, he was all stealthy flying in to be at my appointment. The effort it took to get a Batman pez for my brother while bedbound! I was so happy to have my little present for him 💝🦇 #candy #funfood #soundsensitive #family #stanfordhospital #fbf #mecfs #stanfordinfectiousdisease #pem #postexertionalmalaise #chronicfatiguesyndrome #cfsme #myalgicencephalomyelitis #chronicillness #chronicpain #spoonie #invisibleillness #dysautonomia #painsomnia #stanford #freshair #dusktilldawn #mecfs #artist #lightsensitive #dysautonomia #spoonie #insomnia #migraine #dysautonomia #pez #candy #batman
Panic disorder is different than a panic attack. You can have panic attacks and not have panic disorder or even an anxiety disorder. Someone could have a panic attack on a one off situation and never experience one again. Panic disorder is unpredictable and does not necessarily have precipitating event or triggers. * https://www.anxietybc.com/adults/panic-disorder
Yes, I’m jealous. I miss these foods. FBF to the streak continues, Dad bought “us” fries on way home from my GI procedures! 😂 Haven’t eaten in two full days and I’m waiting for ferry with this deliciousness. So close, and yet, so far. 🍟🍦 #fbf #ibd #ibs #jimgaffigan #foodporn #painsomnia #insomnia #foodallergies #inflammation #migraine #chronicillness #cfsme #chronicpain #brainfog #spoonie #mecfs #lightsensitive #soundsensitive #fibromyalgia #dysautonomia #invisibleillness #spoonielife #ivars #havealaugh #icecream #fries #ferry #pnw #islandlife
I think one of the most difficult parts of chronic illness is maneuvering relationship in the midst of it. It is only human to want someone to be able to understand what you are feeling, why you feel that way, and know how to help in the best way possible. For me personally, there is a big factor in wanting someone to want to sit and listen to me babble amount my vitals, doctors, medical fears, victories, how I feel, and nonsense. I have lost all of the greatest relationships I have had my life and honestly it sucks. When something happens and I want to call some for a laughing victory dance to be shared over phone or a crying in bed late night talk....who is there to call? . I find this to be true for many of you that I have had the great privilege to talk to. I think there are a few things to be done. 1) Let’s make sure we are supporting one another! We each get enough hate the way it is! 2) Know it is not your illnesses fault that the relationship/s ended do to the affects of CI 3) Make sure we give friends that have broken off second chances to be there for you in the crazy good and learn to be there for you better in the crazy sad. . If any of you have a friend that you have drifted away from who is chronically ill, do your best to be there for them. They a somebody, some day, very soon.
I’ve been under the weather this last week and being normal sick when a #spoonie just isn’t fair, so Panda went out and brought me back a treat. A Banana Royale from Oberweis. What was amazing is he switched the chocolate scoop of ice cream for butter pecan, brilliant! It hit the spot, just what Mama needed. #loveandmarriage #iscreamyouscreamweallscreamforicecream #dollingers #dollingeradventure #rheumatoidarthritis #psoriasis #psoriaticarthritis #fibromyalgia
Lupus Awareness Month Post Day 26: Great advice from @thelupustrainer ! I’ll be making sure I use this as my official checklist this weekend! #LupusAwarenessMonth #LupusWarrior #Spoonie #Lupie
Chicago, Illinois 🇺🇸 Airlines are making changes to their ESA policies. Make sure you check with your airline at least 48 hours in advance to confirm you have all the necessary paperwork. I’ve been flying with Maddie for 3 years. Recently, my doctor’s recommendation was no longer enough. Maddie also needed paperwork signed by her vet and paperwork signed by me stating she is properly trained and not a danger/ nuisance to others. I expect these rules will be in flux over the next few years. Make sure you check before every flight. #accessibletravel #accessibility #disability #disabledtraveller #spoonietravel #paintravel #pain #spoonie #chonicpain #chronicillness #invisibleillness #ehlersdanlossyndrome #fibromyalgia #hypermobility #sickgirltravels #chicago #illinois
What’s on my shelf... #shelfie #oilshelfie
Little update ✨ This week I had my overnight and day time sleep study to look for sleep disorders. We think that my fatigue and excessive sleepiness may be due to an underlying sleep disorder. I went into Thursday night, got all hooked up (I also had tubes in my nose tracking my breathing and giving me oxygen). This tracked my sleep cycles, my breathing, my snoring, the deepness of my sleep, my heart rate and my body movements. This looks for sleep apnea, insomnias and restless leg syndrome. Then I was woken up at 5:30 am to start the next part of the study. This day time study consisted of me taking five 20 minute naps every 2 hours starting at 7am. This is meant to track my daytime sleepiness, how quickly I fall asleep during the day and my sleep cycle during that short nap. This is mostly used to look for narcolepsy. I didn’t know anything about sleep studies was I was really interested and even got to teach my sleep technician about my conditions 👍🏻 She couldn’t give me a diagnosis right then (the specialist has to review the data) but there were signs of sleep apnea and narcolepsy. I’m feeling quite anxious about these results but am hoping that if something is wrong, there will be something to do about it. If you have any experience with sleep disorders, let me know! ⬇️ • • • • • #spoonie #spooniestrong #invisableillness #butyoudontlikesick #disabled #disabledandcute #chronicillness #chronicillnesswarrior #mcad #mcas #mastcellactivationdisorder #cfs #fibromyalgia #eds #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome #sleepstudy #sleepdisorder #sleepapnea #narcolepsy
I had this captioned “suns out, buns out” because it seemed like the clever, basic and easy thing to share this photo with. I realized, when I look at this photo I don’t think of a fun little saying. I think about how much strength I have gained, how much my mind has grown, and how proud I am of myself. I have really struggled lately, spending little time on my mat. This last week I received another diagnosis for a very painful disease and started new medication. I feel that my body is failing me some days but my progress in my yoga practice, even if it may be slow, shows me that I still have room to grow and still have control. - There is always a light for those who chose see it.
This is a big thing for me to share but I wanted to raise awareness. *crohns related post* It’s bizarre how unpredictable Crohns really is. These photos were taken just a month apart. I had been having pain for several months, but just tried to deal with it. Eventually went to the hospital and found out i had ‘active inflammation, with an adjacent mesenteric abscess, and possible perforation.’ Basically it had come to the point where medical treatment stopped working and there was no option but to have surgery, which was success🙌🏻. This was equally the hardest and best thing I’ve ever done. I’m left with a fading scar, but have got my quality of life back. Still recovering but wanted to raise awareness, that although I may not look typically ‘ill’ on the outside, a lot is going on inside💜 #crohns #crohnsdisease #ibdawareness #surgery #crohnic #crohnicillness #scar #operation #happy #life #healthy #pain ##hospital #remission #flareup #sister #family #support #love #positive #warrior #positivity #change #invisibleillness #invisible #illness #resection #recovery #crohnsandcolitis #spoonie
Today marks my one year anniversary being cancer free. 🎉 Never had I thought I would be counting the years for that kind of celebration, but for the years to come May 24th will be one of the proudest days I will continue to celebrate. Although this past year has been one of the hardest years I have had to face I was able to power through it, and will continue to do so daily, with the unconditional love and support of my family and friends; I will be forever grateful. Here’s to many more years of celebration 🍾💛 #JustGotCheckedSoIKnowItsTrue #cancerfree #anniversary #mecfs #survivor #thyroidcancer #spoonie
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