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This Thanksgiving, I have a lot to be thankful for. I spent some time this morning thinking about the last year and a half, and realized just how many incredible people have been a part of my journey to today. From family and friends to doctors and nurses, my support system has grown in size and love. In the hardest experiences come some amazing blessings, like living pain-free for the first time in decades and finding a voice as MollyOllyOstomy that I never knew I had. Life may not always be perfect, but my support system definitely is, and for that I am beyond thankful. Happy Thanksgiving Eve ! #mollyollyostomy #ileostomy #ostomy #chronicillness #invisibleillness #spoonie #nocolonstillrollin #ostomates #stoma #ittakesguts #girlswithguts #chronicallymotivated #posturalorthostatictachycardiasyndrome #POTS #EhlersDanlosSyndrome #EDS

Sevgili @doulanevin emeğine sağlık, ne harika bir paylaşım ❤️sonucu heyecanla bekliyorum 🙏🏼 sevgili anneler evlat edinen annelerin emzirme dönemi ile ilgili daha önce de paylaşım yapmıştım yabancı bir ebenin hesabından aşağılarda var. Bu sürece #indüksiyon diyoruz. Daha evvelden emziren ama bazı durumlardan ötürü sütü azalan, kesilen annelerde de süt getirme çalışmaları yapılabiliyor #relaktasyon denilen bu uygulama hakkında da yazacağım en uygun zamanımda. Bu konuda çok soran annemiz var toplu cevap olur. Sevgiler 🌸 #ciplaktentemasi #emzirmedesteksistemi #eds

Three years ago. The third of seven knee surgeries. Time flies. #eds #edslife #ehlersdanlossyndrome #spoonielife #spoonie

Had my post-up appointment this morning with both my surgeon and stoma nurse, which went really well! Because my nurse wanted to check on my stoma (which she put silver nitrate on because of granulomas I have developed), we had to change my bag. Even though I had it changed just yesterday, it feels nice to have a fresh one on, especially since — despite using lubricating deodorant — my output tends to “pancake” (ostomate term referring to output buildup at the top of the bag instead of the bottom). My nurse told me that this shouldn’t really happen with an ileostomy, and that it’s from not drinking enough... Ugh, I really need to get better at that! 🤦🏽‍♀️
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Also, I learned that the order in which I apply all of my ostomy products during a bag change has been totally wrong. 😳 The reason why my wafer never stuck when using stoma powder (to help with my irritated skin) is that I applied it AFTER using barrier wipes, when I’m supposed to put it on BEFORE! Oops! 😅 Well, it’s all still a learning curve and it (as of tomorrow) has only been three weeks since my surgery, so it’s inevitable to make mistakes along the way.
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My surgeon also assured me that the “normal” bowel movements I am still having (out of my other end...) should eventually go away, and that it’s absolutely not from my stoma output traveling into my attached mucous fistula. I really hope that this will subside, because I was afraid of this happening with my colon still intact... 😕
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Overall, it’s been a great (albeit exhausting) day so far! 👍🏼
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#ostomate #ileostomy #ostomy #stoma #girlswithguts #ostomyawareness #chronicillness #invisibleillness #spoonie #chronicallymotivated #eds #ehlersdanlossyndrome #zebrastrong #dysautonomia #orthostatichypotension #pots #mastcellactivationsyndrome #endometriosis #endowarrior #klippelfeilsyndrome

Fun fact: the assault has triggered a bunch of symptoms that I haven’t had in years. I haven’t been posting much (at all) on here recently because I’ve been extremely poorly. Immediately after the assault, I was in a huge amount of pain in my neck and back, to the point where it was excruciating to both sit down on my bum, or put any pressure on my head. As a result, I was in the deep deep darks for a while. The pain kinda started to calm down, and my mum and boyfriend helped me out of that funk (fun fact: “bullying” helps me. I don’t have chemical depression (in which case this would be extremely unhelpful if not damaging - an important distinction!) and mine is always situational, so I can’t be allowed to wallow for long and actually being forced to do small practical things in a loving way really helps). Unfortunately, my pain levels have started to increase again, and I am in HUGE amounts of pain every day. On top of that, my PoTS symptoms have been retriggered. Getting up out of bed usually necessitates someone to stand by me so I can rest my head on them, and I struggled to eat half a banana this morning because of dizziness and too much blood rushing to my tummy. I did literally yell “I WILL NOT BE BEATEN” at a burger last night. I really don’t want to get into a fear of food place again, so I’m trying my hardest to feed myself, but it’s hard when even more than a sip of water feels like it’s getting stuck in my oesophegus. This, as I’m sure you can imagine, I spent the last week or so extremely depressed, to the point where I really didn’t want to be left alone. It’s a weird thing. Not actively suicidal, but when your body literally feels unliveable, causing you such extreme agony, you’d be very happy just not wake up. The worst part is that there’s no point going to the hospital because there’s nothing that can be done. So you just wait. Alone in bed and hope beyond hope that the symptoms calm down. It has also been the worst timing since it happened a week after starting work. It has all just been very difficult. <<Continued in comment>>

You’re going to be okay #thisischronicillness

💃🏻E hoje falamos, mais uma vez, sobre empreendedorismo feminino à @tvtribunaoficial 💃🏻Destacamos o trabalho maravilhoso do grupo @empreendedoras013 e o bazar que ocorrerá no próximo domingo (26) no @vascodagamasantos 💃🏻Espero todo mundo lá para experimentar as delícias da @casaculinariaafetiva e conhecer o trabalho de mais de 50 expositoras 💃🏻Gravamos também um vídeo para o @bomdia_sp ☺️

It’s the greatest storm: take a physically and mentally healthy individual and rob them of their health, have them lose everything to their new illness, and now throw in physicians who vowed not to do harm but have them dismiss the symptoms and provide inadequate treatment, now create distance between the victim and their family and friends by making the loved ones feel uncomfortable with their illness. Don’t just detach the person from their body- the body that’s supposed to serve them and keep them alive. 💔 No, also detach them from the outside world by making their experiences less and less relatable and their loved ones more and more distant and desensitized. Ah yes, it’s the perfect storm. Now how can we fight this? Community that acknowledges the suffering of others WITHOUT comparison or judgment. Community that encourages authentic vulnerability without shame or expectations. My counsellor once said that God shines light on an issue in the world based on an issue we’re suffering with. So if you’re feeling lonely today, reach out and make someone else in the spoonie community feel less lonely. If you’re feeling like no one acknowledges your daily battle, go on and acknowledge someone else’s. We don’t have to do this alone. In fact, we were never meant to. 💗

MOST RECENT

Mitt Liv Med EDS (Hypermobilitetstypen), vissa dagar orkar jag inte gå upp från sängen men för det mesta förtränger jag verkligheten och låtsas som ingenting (Finns människor som har det värre) men när jag går o helt plötsligt trillar av att knäna bestämmer sig för att hoppa ur led eller när jag bara ska hämta nåt från skåpet o axeln gör samma sak för en sån skit rörelse så blir jag bara arg.. inte nog med det så ska man gå runt o ha ont helatiden.. även när jag ligger i sängen kan jag inte ligga för länge på en sida.. störande att vakna hela tiden av smärta o behöva vända/byta position o sen tar d hundra år att somna igen.. det påverkar min vardag så mkt, trött hela tiden pga oavbruten sömn o smärta mm, vissa dagar kan jag inte ens gå, eller när jag som vanligt är ute o handlar i affären o böjer mig för att hämta nåt o vips kan jag inte komma upp igen för ryggen fastnar o så blir jag stående så tills ryggen bestämmer sig för att släppa igen. O nu är det dessutom vinter o kallt ajajaj INTE KUL, Kärlek till alla med EDS (Ehlers Danlos) #livetmedfunktionsnedsättning #EDS #ehlersdanlossyndrome #FIGHTHARD

When there isnt much in the house sometimes thats when you make the best meals 😁 Chicken, mushroom, onion with some mixed herbs in a herb wrap toasted was scrummy 𗀂𗀂

We are Tennessee bound to stay with my Mama for Thanksgiving! The internet out in her neck of the woods is pretty spotty so bear with me this weekend!☺️ That’s why I wanted to say now, Happy Thanksgiving everyone! 🦃🍁 I am thankful for the love and support of those few family and friends, who may not understand, but are still there listening and supporting me through all these struggles. One of the other biggest things I am thankful for, is the love, support, and encouragement from all of you! ☺️❤️ It’s hard for others in our daily life to understand what it means to be young and chronically ill. That’s why it’s such a blessing to have such a great, encouraging instagram family to be able to share our struggles, but also our victories, with people who DO get it! I really do consider you all my family and I’m excited to continue growing together, laughing together, crying together and supporting each other through all that life has to offer. I hope you all have a great Holiday!❤️❤️❤️ #thanksgiving #thanksgivingday #thanksgiving2017 #family #love #support #theholidays #thankful #grateful #blessed #fam #chronicillness #chronicallyill #invisibleillness #invisibledisability #chronicillnesswarrior #spoonie #spoonielife #eds #ehlersdanlossyndrome #potsie #posturalorthostatictachycardiasyndrome #boyfriend #travel #tennesseebound #nomakeup #excited #norrislake #blueeyes

My nan gave me this cute little bear to help me through my surgery on Monday 💗 Such a cutie! .
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#bravery #brave #braverybear #bear #teddy #teddybear #nan #gift #surgery #eds #pots #scope #repair #knee #kneesurgery #chronic #chronicillness

Thank you all for every single bit of encouragement and support I have received. It's been so brilliant!

When someone displays gratitude, it makes us feel nice. Expressing gratitude, makes us feel nicer.

Do check out my new video link in the profile. Topic: How To Be Grateful - the Attitude of Gratitude.

Going through some old photos, I came across this from my trip to New York in 2015.

This "Thank You" caught my eye - a small gesture like this can go a long way, so I had to take a photo :)
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#grateful #thanksgiving #thankyou #attitudeofgratitude #gratitude #happy #love #recycle #water #cow #restuarant #NewYork #USA #travel #explore #wanderlust #traveldiaries #travelblog #footprintsnoboundaries #exploreyourcity #photooftheday #family #holiday #manhattan #EDS #Endometriosis #TBT #throwback

Hey body! Not cool. Not cool at all. #eds #kttape

There truly is. I am thankful for mercy, grace, comfort, and love. Even in chronic illness, God is still good. Happy Thanksgiving. Keep fighting. Keep moving forward. #bebraveandstrong #chronicovercomer #fight #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #chronicwarrior #spoonie #mg #zebrastrong #snowflakedisease #psoriaticarthritis #youdontlooksick

Good morning and to all our of American followers Happy Thanksgiving. If y'all didn't know I have a gofundme page. My boy created it to help get me training, gear, food, and everything. If you are able to help please go to www.gofundme.com/servicedog4shane or go to the top of my page for a direct link. Anything helps even sharing this post. #gofundme #puppy #servicedog #puppytraining #eds #chronicpain #chronicpainwarrior #greatdane #ehlersdanlossyndrome #zebra #zebrawarrior #chronicallyill #holidays #goodmorning #sunsets

Certainly feeling like this today that's for sure!! In agony today feel like I've been ran over by a bus ,😂🙈😬! Still hoping to start my next comissioned piece though at some point once medication eases me up a tad!!! #EDS #ehlersdanlos #ehlersdanlossyndrome #chronicpain #pain #strength #hope #tryingtobepositive #art #arttherapy #tialillyart #artuk
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Why wait till January to focus on you, your resolutions and your goals 𗀺 We still have 5 weeks of this year left, 5 whole weeks where you could be laying the foundations for the new year. Imagine what you could lose before then, learn how to enjoy Christmas while still eating right!! Drop me a comment or message for some more info 😁😁

Happy thanksgiving my peeps! #happythanksgiving #turkeyday #eds

Those two ring splints fly to USA. This client was diagnosed with EDS hyper mobility. She has especially extrime hypermobility at her Rt MP joint and Lt IP of her thumbs. #EDS#Ehlerdanlos#hypermobility#hypermobilitysyndrome#thumbpain#thumbsupport#thumbsplint#medicaljewelry#

Those two ring splints fly to USA. This client was diagnosed with EDS hyper mobility. She has especially extrime hypermobility at her Rt MP joint and Lt IP of her thumbs. #EDS#Ehlerdanlos#hypermobility#hypermobilitysyndrome#thumbpain#thumbsupport#thumbsplint#medicaljewelry#

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