an online Instagram web viewer

#eds medias

Photos

Wspaniałe Wigilijne spotkanie z Egurrola Dance Studio i @agustinegurrola #christmas #christmastime #santaclaus #gift #dance #passion #team #family #eds #eds24 #wroclaw #warszawa #poland
☁️☁️☁️🤗 #享受午茶時光 
#BALAYAGE手刷染髮 #丹寧藍
🍦🍸🍩☕️ #午茶沙龍
🍸#香草奶昔 🍸#午茶沙龍甜品 🍧
😻😻😻😻😻😻
#甜過初戀的味道 
讓女孩 
#增加好感度
💋💋💋💋💋💋
#享受設計的微笑
#EDS特調
愛漂亮的我們ㄧ定要換上美美的髮色 與大家見面

歡迎提前3-7天預約
預約電話:0968949898
時間11:00~20:00
設計師:
地址:台中市太平區新興路32號

#EDS 女孩兒在這都會不受控的自拍

#女孩兒愛自拍
#EnjoyDesignSmile 
#소녀 #염색머리 #컨디셔너 #살롱
#미용사진 #hair #hairstyle
#haircolor #haircut 
#hairfashion #髮型設計師 #髮型攝影師  #SMILE燙髮 #SMILE染髮
 #沙龍 #攝影牆
☁️☁️☁️🤗 #享受午茶時光  #BALAYAGE手刷染髮  #丹寧藍  🍦🍸🍩☕️ #午茶沙龍  🍸#香草奶昔  🍸#午茶沙龍甜品  🍧 😻😻😻😻😻😻 #甜過初戀的味道  讓女孩 #增加好感度  💋💋💋💋💋💋 #享受設計的微笑  #EDS特調  愛漂亮的我們ㄧ定要換上美美的髮色 與大家見面 歡迎提前3-7天預約 預約電話:0968949898 時間11:00~20:00 設計師: 地址:台中市太平區新興路32號 #EDS  女孩兒在這都會不受控的自拍 #女孩兒愛自拍  #EnjoyDesignSmile  #소녀  #염색머리  #컨디셔너  #살롱  #미용사진  #hair  #hairstyle  #haircolor  #haircut  #hairfashion  #髮型設計師  #髮型攝影師  #SMILE燙髮  #SMILE染髮  #沙龍  #攝影牆 
Wigilia 🎄 with my girls ❤️#szykowanie #mejkapy #fun #bedziesiedzialo #eds
New red lipstick,present from birchbox. Never been confident enough to wear a bold lipstick. Still not sure if it even suits me. With my hair half up half down I'm feeling like a Disney princess, so  deep inhale in and let's conquer the day. 
#selfcare #hmsawareness #hidebehindasmile #mentalhealthawareness #eds #warrior #ifonlyyouunderstood #redlips #LOC #birchboxdecember #stripes #feelingprettytoday
Gugma.... 😜👀
#eds&traviswedding
Gugma.... 😜👀 #eds &traviswedding
That is actually me. Trying to organize doctors appointments while switching places often plus moving countries... not easy! 6 more appointments until Christmas to go 💪🏼💪🏼💪🏼
That is actually me. Trying to organize doctors appointments while switching places often plus moving countries... not easy! 6 more appointments until Christmas to go 💪🏼💪🏼💪🏼
Today I travelled 3 hours there, waited an hour for a car parking space, waited another hour for the appointment, spent two hours getting out the city and 3 hours getting home, all for a ten minute appointment. 😑 The trip itself was good, I had a laugh with my dad and a 3 hours nap but I'm exhausted now 😪 This week has just been crazy, crazy good, very crazy good, but I'm looking forward to catching up on some rest and GOT 😎 I hope everyone is managing okay on the way up to Christmas ❄☃ .
.
.
.
#blog #blogger #chronicallyill #chronicillnessblogger #chronicallyillblogger #chronicillnessblog #chronically illblog #newblogger #lifestyle #chronicallyilllifestyle #chronicillnesslifestyle #spoonie #spoonielife #spoonielifestyle #spoonieblog #m.e #pots #eds #hashimotos #migraines #chronic #cfs #fibro #potsie #raynauds #hypothyroidism #alopecia #wheechair #dancingintherain
Today I travelled 3 hours there, waited an hour for a car parking space, waited another hour for the appointment, spent two hours getting out the city and 3 hours getting home, all for a ten minute appointment. 😑 The trip itself was good, I had a laugh with my dad and a 3 hours nap but I'm exhausted now 😪 This week has just been crazy, crazy good, very crazy good, but I'm looking forward to catching up on some rest and GOT 😎 I hope everyone is managing okay on the way up to Christmas ❄☃ . . . . #blog  #blogger  #chronicallyill  #chronicillnessblogger  #chronicallyillblogger  #chronicillnessblog  #chronically  illblog #newblogger  #lifestyle  #chronicallyilllifestyle  #chronicillnesslifestyle  #spoonie  #spoonielife  #spoonielifestyle  #spoonieblog  #m .e #pots  #eds  #hashimotos  #migraines  #chronic  #cfs  #fibro  #potsie  #raynauds  #hypothyroidism  #alopecia  #wheechair  #dancingintherain 
“How do we make people see that everyone’s story is now a part of everyone else’s story? Everywhere is now apart of everywhere else. Our lives, our stories, flow into one another’s.” I read this quote today on the wall in the museum exhibit and I fell in love with it. Sadly I forgot to write down who penned it. But it’s beautiful. Today we went to one of my favorite places, The Ringling to admire some beautiful art. The exhibit they had on was about the war and destruction going on from the POV of the Middle East. It showed graphic and powerful images. This and the quote on the wall reminded me that everyone has their own struggles to deal with. Some small and some very large but each and every person gets through. And that truly amazes and humbles me. 😌🙇🏻‍♂️♿️ #disability#disabled#eds#ehlersdanlossyndrome#zebrawarrior#dysautonomia#posturalorthostatictachycardiasyndrome#pots#neuropathy#wheelchair#wheelchairuser#tilite#tilitewheelchair#chronicillness#spoonie#chronicallyill#spamforspam#followforfollow#mastcellactivationdisorder#helperdogharlow#spooniesofinstagram#epilepsy#seizures#servicedog#servicedogtraining#newhorizonsservicedogs#servicedogsofinstagram#servicedogteam#autism#mobilityservicedog
“How do we make people see that everyone’s story is now a part of everyone else’s story? Everywhere is now apart of everywhere else. Our lives, our stories, flow into one another’s.” I read this quote today on the wall in the museum exhibit and I fell in love with it. Sadly I forgot to write down who penned it. But it’s beautiful. Today we went to one of my favorite places, The Ringling to admire some beautiful art. The exhibit they had on was about the war and destruction going on from the POV of the Middle East. It showed graphic and powerful images. This and the quote on the wall reminded me that everyone has their own struggles to deal with. Some small and some very large but each and every person gets through. And that truly amazes and humbles me. 😌🙇🏻‍♂️♿️ #disability #disabled #eds #ehlersdanlossyndrome #zebrawarrior #dysautonomia #posturalorthostatictachycardiasyndrome #pots #neuropathy #wheelchair #wheelchairuser #tilite #tilitewheelchair #chronicillness #spoonie #chronicallyill #spamforspam #followforfollow #mastcellactivationdisorder #helperdogharlow #spooniesofinstagram #epilepsy #seizures #servicedog #servicedogtraining #newhorizonsservicedogs #servicedogsofinstagram #servicedogteam #autism #mobilityservicedog 
Scroll to see the grosser picture xD The feeding tube has been healing beautifully. We removed and replaced the gauze today, and there hasn’t been any bleeding around it since. I am going to start looking to order re-usable pads to put around the tube. I am starting to schedule my feeding times again so they are only between 12am and 12pm, when I am asleep, and between 6pm and 8pm in the day, at the time when I get a little bit hungry during the day. Going a whole day without eating sort of throws one off of their schedule. 
For pain, I still have to be on 2mg of dilauded every 2 hours through IV so that is unfortunate. I may have a secondary infection, a possible UTI that is making the pain increase so intensely. I really want to get on pill versions of things as soon as possible as I can put the pill versions through my tube, and when everything can be done through the tube I can go home. It is going to take 2-3 days to get testing results back for bacterial/fungal/etc infections. 
We are starting “training” for the stomach tube today, which so far has just consisted of setting up the machine and doing my own water and medication flushes (a flush being just pushing it through the g-tube with a large syringe) so I feel this “training” will be a relatively fast process.
Fortunately all of my roommates this weekend were acceptable, no screaming people, no overtly obnoxious people, just a woman giving me advice on meditation which is always appreciated.
We still do not know when I will be able to go home. Of course we are still hoping that before Christmas will work, but we do not know at this point with the new testing that has to be done.
I am also having issues taking deep breaths, with the partial collapse of one lung it is important that I am doing “lung training” as well. They will be requesting an x-ray to make sure that I have no lung infection that could be causing this pain.
I have yet to go back on my blood thinners for my bilateral pulmonary embolii, but I need to heal fully first so the bleeding from my stomach does not get out of control.
.
.
.
.
.
.
.
.
.
#eds #edstype3 #gtube #gastricfeeding #canteat #tubefed
Scroll to see the grosser picture xD The feeding tube has been healing beautifully. We removed and replaced the gauze today, and there hasn’t been any bleeding around it since. I am going to start looking to order re-usable pads to put around the tube. I am starting to schedule my feeding times again so they are only between 12am and 12pm, when I am asleep, and between 6pm and 8pm in the day, at the time when I get a little bit hungry during the day. Going a whole day without eating sort of throws one off of their schedule. For pain, I still have to be on 2mg of dilauded every 2 hours through IV so that is unfortunate. I may have a secondary infection, a possible UTI that is making the pain increase so intensely. I really want to get on pill versions of things as soon as possible as I can put the pill versions through my tube, and when everything can be done through the tube I can go home. It is going to take 2-3 days to get testing results back for bacterial/fungal/etc infections. We are starting “training” for the stomach tube today, which so far has just consisted of setting up the machine and doing my own water and medication flushes (a flush being just pushing it through the g-tube with a large syringe) so I feel this “training” will be a relatively fast process. Fortunately all of my roommates this weekend were acceptable, no screaming people, no overtly obnoxious people, just a woman giving me advice on meditation which is always appreciated. We still do not know when I will be able to go home. Of course we are still hoping that before Christmas will work, but we do not know at this point with the new testing that has to be done. I am also having issues taking deep breaths, with the partial collapse of one lung it is important that I am doing “lung training” as well. They will be requesting an x-ray to make sure that I have no lung infection that could be causing this pain. I have yet to go back on my blood thinners for my bilateral pulmonary embolii, but I need to heal fully first so the bleeding from my stomach does not get out of control. . . . . . . . . . #eds  #edstype3  #gtube  #gastricfeeding  #canteat  #tubefed 
Joop Homme EDT - 125ML

OFERTA DE R$289,00 POR R$195,00 EM 3x de R$65,00 sem juros

GANHE MAIS 10% DE DESCONTO R$175.50 PAGANDO EM DINHEIRO

Sua fragrância fougueré oriental traz frescor elegante e marcante, com notas de topo com Flor de Laranjeira, Tangerina, Bergamota e Limão. Além disso, sua marca adocicada e jovem vem pelas notas de coração Jasmin, Heliotrópio, Lírio do Vale, Cardamomo e o toque especial de canela. Para marcar durante sua longa duração, suas notas de fundo trazem a personalidade e sensualidade do Sândalo, Fava Tonka com seu toque oriental, Patchoulli e Baunilha, intensificando seu frescor adocicado. Podemos também sentir notas de Almíscar, com toques de elegância e glamour, além da personalidade das notas de tabaco.
Para homens sedutores e autênticos que amam frescor, elegância e jovialidade, o perfume Joop Homme é especial e necessário. Um perfume masculino que tem atitude própria, contemporâneo e marcante. Deseja ser expressivo e marcar? Esse é seu perfume. ➡Acesse nosso Site: www.luckenjoy.com.br PRODUTOS JÁ NO BRASIL

https://www.luckenjoy.com.br/perfumes/perfumes-masculinos/joop-homme-edt-125ml/
Joop Homme EDT - 125ML OFERTA DE R$289,00 POR R$195,00 EM 3x de R$65,00 sem juros GANHE MAIS 10% DE DESCONTO R$175.50 PAGANDO EM DINHEIRO Sua fragrância fougueré oriental traz frescor elegante e marcante, com notas de topo com Flor de Laranjeira, Tangerina, Bergamota e Limão. Além disso, sua marca adocicada e jovem vem pelas notas de coração Jasmin, Heliotrópio, Lírio do Vale, Cardamomo e o toque especial de canela. Para marcar durante sua longa duração, suas notas de fundo trazem a personalidade e sensualidade do Sândalo, Fava Tonka com seu toque oriental, Patchoulli e Baunilha, intensificando seu frescor adocicado. Podemos também sentir notas de Almíscar, com toques de elegância e glamour, além da personalidade das notas de tabaco. Para homens sedutores e autênticos que amam frescor, elegância e jovialidade, o perfume Joop Homme é especial e necessário. Um perfume masculino que tem atitude própria, contemporâneo e marcante. Deseja ser expressivo e marcar? Esse é seu perfume. ➡Acesse nosso Site: www.luckenjoy.com.br PRODUTOS JÁ NO BRASIL https://www.luckenjoy.com.br/perfumes/perfumes-masculinos/joop-homme-edt-125ml/
SLEEP IS LIFE! Before last night it was, like, 3 days past my bedtime. But with my 10 hour Horizontal Life Pause™️ last night (or rather, pain pause) I’m feeling pretty darn awesome!
I used to say that tea fixes everything, I stand corrected... it’s sleep. Sleep fixes everything.
.
😴😴😴😴😴😴😴😴😴😴😴😴😴😴😴😴
.
.
.
.
.
#thyroiddisease
#ankylosingspondylitis #osteoarthritis 
#EhlersDanlosSyndrome #ButYouDontLookSick #ChronicPain #EDS #diabetes #fatigue #multiplesclerosis #ulcerativecolitis#arthritis #rheumatoidarthritis #chronicpain #lyme #lymedisease #ibs #ibd #lupus #autoimmunedisease #endometriosis #ptsd #pcos #migraines #crohns #depression #anxiety #invisibledisease #invisibleillness
SLEEP IS LIFE! Before last night it was, like, 3 days past my bedtime. But with my 10 hour Horizontal Life Pause™️ last night (or rather, pain pause) I’m feeling pretty darn awesome! I used to say that tea fixes everything, I stand corrected... it’s sleep. Sleep fixes everything. . 😴😴😴😴😴😴😴😴😴😴😴😴😴😴😴😴 . . . . . #thyroiddisease  #ankylosingspondylitis  #osteoarthritis  #EhlersDanlosSyndrome  #ButYouDontLookSick  #ChronicPain  #EDS  #diabetes  #fatigue  #multiplesclerosis  #ulcerativecolitis #arthritis  #rheumatoidarthritis  #chronicpain  #lyme  #lymedisease  #ibs  #ibd  #lupus  #autoimmunedisease  #endometriosis  #ptsd  #pcos  #migraines  #crohns  #depression  #anxiety  #invisibledisease  #invisibleillness 
Up close and personal with another #delicious #glutenfree #vegan #nutfree #Christmas #cookie. These Honeynut Squash Oatmeal Cookies are naturally sweet and flavorful and perfect for the #holidays 🎄 (and can also be made with butternut squash). Find the #recipe on the blog!
I know I am biased but my boy is beautiful! Not just on the outside but on the inside too! He’s poorly and so pale 😞 my warrior ❤️💙 #leisheartholiday #heartwarrior #warrior #chd #chdawarness #1in100 #autism #beautiful #gorgeouseyes #son #2 #eds #spoonie #zebra #pleasedonate #mummysboy #poorly
Jeszcze raz sto lat @kalcosia !🎉 #birthday #dancers #eds #selfie #mirrorpic #happy #vscocam #vsco
I’m gonna miss these guys so much!! #lopi #eds #fire #work #friends 🔥🔥
Full day of eating (consumed 402 calories, burned 668)
Some cereal, rice and cabbage, a piece of chocolate and a toast with chocolate spread because I am a greedy pig. Yes, all of that is vegan.
Full day of eating (consumed 402 calories, burned 668) Some cereal, rice and cabbage, a piece of chocolate and a toast with chocolate spread because I am a greedy pig. Yes, all of that is vegan.
That sensitive skin life when you wear a new color eyeshadow and it end up making your eyes get all itchy, dry, and puffy. At least my #makeup looked bomb for my interview. 
#servicedog Bossie is apparently so worn out after my interview this afternoon that it's time for a nap. 
#spoonie #chronicillness #chronicpain #invisibleillness #lyme #lymedisease #eds #ehlersdanlos #ehlersdanlossyndrome #pale #piercings #servicepitt #offdutyservicedog #naptime #sensitiveskin
That sensitive skin life when you wear a new color eyeshadow and it end up making your eyes get all itchy, dry, and puffy. At least my #makeup  looked bomb for my interview. #servicedog  Bossie is apparently so worn out after my interview this afternoon that it's time for a nap. #spoonie  #chronicillness  #chronicpain  #invisibleillness  #lyme  #lymedisease  #eds  #ehlersdanlos  #ehlersdanlossyndrome  #pale  #piercings  #servicepitt  #offdutyservicedog  #naptime  #sensitiveskin 
Same Hanse house changing a little bit, step by step, when i have extra energy to that, hardly ever 🤣 
i painted all white, i hated those dark rooms so this is also better this way👍 lets see when is a next time when i'm able to fix this more 👍#enjoysomuch #enjoylilthings #zebralife #whenyouhavelessenergy#eds#hanse #renovationproject #hanserenovation#dollhouse #dollhouse
So, I have a problem. After being diagnosed and treated with POTS for 8 years, I’ve received this letter, which is a bit inconvenient to say the least. •
•

I’m more confused than ever about what’s wrong with me, it feels like I’m back at the beginning again and don’t have the answers I need that give me a reason for experiencing all of these symptoms. • •

I still feel the same and have the same symptoms that I had 8 years ago, and it was almost good to have something that could put a name to how I was feeling. •
•

Now this letter has made me doubt myself, I still feel ill and experience the symptoms, but now a name has been taken away from me I don’t know what’s happening, almost after all these years of going to various hospitals and missing school or events or parties and feeling ill for so long, I’m wondering if it’s all in my head, which is exactly what I felt before I was diagnosed. •
•

I’ve seen dozens of specialists that have told me that there is something wrong, but again I can’t help but think, am I making a big deal out of minor issues? I have so many questions that I thought had been resolved but have now creeped back into my brain making me doubt everything. Obviously I still have the other diagnoses but that’s not enough. •
•

Amongst the feelings of confusion is the feeling of being lost. What is wrong with me? Is there a diagnosis that hasn’t been considered? If I discover another chronic condition that explains all my symptoms, will the Dr take me seriously? •
•

This letter has not come at the best time. I’m considering dropping out of university because I don’t feel well enough to carry on, but now I don’t have an explanation for it. •
•

All I want is a name for what I’m feeling, so I can take control of it and understand, but I don’t, and I don’t know what’s coming next which really scares me. •
•

#pots #posturalorthostatictachycardiasyndrome #eds #ehlersdanlossyndrome #pcos #polycysticovariansyndrome #celiac #dysautonomia #chronicpain #chronicfatigue #chronicillness #invisibleillness #depression #anxiety #spoonie #zebra
So, I have a problem. After being diagnosed and treated with POTS for 8 years, I’ve received this letter, which is a bit inconvenient to say the least. • • I’m more confused than ever about what’s wrong with me, it feels like I’m back at the beginning again and don’t have the answers I need that give me a reason for experiencing all of these symptoms. • • I still feel the same and have the same symptoms that I had 8 years ago, and it was almost good to have something that could put a name to how I was feeling. • • Now this letter has made me doubt myself, I still feel ill and experience the symptoms, but now a name has been taken away from me I don’t know what’s happening, almost after all these years of going to various hospitals and missing school or events or parties and feeling ill for so long, I’m wondering if it’s all in my head, which is exactly what I felt before I was diagnosed. • • I’ve seen dozens of specialists that have told me that there is something wrong, but again I can’t help but think, am I making a big deal out of minor issues? I have so many questions that I thought had been resolved but have now creeped back into my brain making me doubt everything. Obviously I still have the other diagnoses but that’s not enough. • • Amongst the feelings of confusion is the feeling of being lost. What is wrong with me? Is there a diagnosis that hasn’t been considered? If I discover another chronic condition that explains all my symptoms, will the Dr take me seriously? • • This letter has not come at the best time. I’m considering dropping out of university because I don’t feel well enough to carry on, but now I don’t have an explanation for it. • • All I want is a name for what I’m feeling, so I can take control of it and understand, but I don’t, and I don’t know what’s coming next which really scares me. • • #pots  #posturalorthostatictachycardiasyndrome  #eds  #ehlersdanlossyndrome  #pcos  #polycysticovariansyndrome  #celiac  #dysautonomia  #chronicpain  #chronicfatigue  #chronicillness  #invisibleillness  #depression  #anxiety  #spoonie  #zebra 
Another fabulous year of dance comes to a close. Can’t wait to see all of your smiling faces in 2018 😊 #dance #recital #endofyearconcert #concert #stage #tutu #ballet #hiphop #jazz #happy #sunday #performance #eds #evolutiondanceschool
#EDS Ксения Лати#хоршийвечер
To celebrate the release of the DVD tomorrow!!🙌🏼
-
For the 2017 Losers Club dialogue bits, you have to have headphones to hear it
-
Credits to justcallmemichelle on YouTube for this edit
-
#It #losersclub #billdenbrough #jaedenlieberher #stanuris #stanleyuris #wyattoleff #richietozier #finnwolfhard #benhanscom #jeremyraytaylor #eddiekaspbrak #jackdylangrazer #jackgrazer #mikehanlon #chosenjacobs #beverlymarsh #sophialillis #bev #bigbill #stantheman #trashmouth #eds #reddie #stenbrough #weallfloatdownhere #pennywise #billskarsgard
To celebrate the release of the DVD tomorrow!!🙌🏼 - For the 2017 Losers Club dialogue bits, you have to have headphones to hear it - Credits to justcallmemichelle on YouTube for this edit - #It  #losersclub  #billdenbrough  #jaedenlieberher  #stanuris  #stanleyuris  #wyattoleff  #richietozier  #finnwolfhard  #benhanscom  #jeremyraytaylor  #eddiekaspbrak  #jackdylangrazer  #jackgrazer  #mikehanlon  #chosenjacobs  #beverlymarsh  #sophialillis  #bev  #bigbill  #stantheman  #trashmouth  #eds  #reddie  #stenbrough  #weallfloatdownhere  #pennywise  #billskarsgard 
Fantastic night at Doncaster Rovers this evening. Excellent hosts as always. #EDS#opportunities#trialwithUsnow

The YEFA Team
Ripper doing overhead jerk lunges #stability for us hyper mobile folks
Ripper doing overhead jerk lunges #stability  for us hyper mobile folks
This is real, this is important, this is hard to write. So, for the last year and a half or so, I’ve had increasing dysmotility, weakness, and lack of feeling in my limbs, along with past odd MRI results. After about 6 months of testing, we finally got answers- mitochondrial neurogastrointestinal encephalopathy (MNGIE). MNGIE is an incredibly rare form of mitochondrial disease, that’s progressive, leading to increasing dysmotility, intestinal blockages, malabsorption, and limb weakness. It also often results in premature death. 
This is startling, this is very difficult for me to deal with, but I know so many people have my back. And I’m still here, determined to make a difference. I’m here to lend an ear to anyone who needs it. This will not hinder me, but instead drive me to love more, care more, make more of a difference. I’m just a message away, loves. •
•
•
#spoonie #chronicillness #dysautonomia #potssyndrome #ehlersdanlossyndrome #eds #ehlersdanlos #mcad #mastcellactivationsyndrome #gastroparesis #positivity #chronicillnesssupport #support
This is real, this is important, this is hard to write. So, for the last year and a half or so, I’ve had increasing dysmotility, weakness, and lack of feeling in my limbs, along with past odd MRI results. After about 6 months of testing, we finally got answers- mitochondrial neurogastrointestinal encephalopathy (MNGIE). MNGIE is an incredibly rare form of mitochondrial disease, that’s progressive, leading to increasing dysmotility, intestinal blockages, malabsorption, and limb weakness. It also often results in premature death. This is startling, this is very difficult for me to deal with, but I know so many people have my back. And I’m still here, determined to make a difference. I’m here to lend an ear to anyone who needs it. This will not hinder me, but instead drive me to love more, care more, make more of a difference. I’m just a message away, loves. • • • #spoonie  #chronicillness  #dysautonomia  #potssyndrome  #ehlersdanlossyndrome  #eds  #ehlersdanlos  #mcad  #mastcellactivationsyndrome  #gastroparesis  #positivity  #chronicillnesssupport  #support 
My joints are killing me!! Hips are excruciating today, shoulder, back, hands.  I ended up calling where I go to physical therapy and asked to cancel all future appointments and have me discharged because I've only gotten worse since I started PT. #zebrastrong #physicaltherapy #EDS #POTS #fibromyalgia #endometriosis #sjogrens #gravesdisease #jointpain #chronicpain #chronicillness #lifeofascienceexperiment
Maintaining a strict homeostasis with conditions like Dysautonomia/MCAS is critical! I can't say it enough! 
It's taken me two years to get to the point I am at now where my body can handle stress and not spiral out of control. My father passed away last month and continued to make my health a priority because I know what it's capable of otherwise. I've even cancelled my Neurosurgery consult that was priority...twice now...😬 #EDS #dysautonomia #pots #mcas #patientadvocacy
Maintaining a strict homeostasis with conditions like Dysautonomia/MCAS is critical! I can't say it enough! It's taken me two years to get to the point I am at now where my body can handle stress and not spiral out of control. My father passed away last month and continued to make my health a priority because I know what it's capable of otherwise. I've even cancelled my Neurosurgery consult that was priority...twice now...😬 #EDS  #dysautonomia  #pots  #mcas  #patientadvocacy 
I'm getting really sick of my lank, thin hair. Maybe it's just a chronically-ill thing but it never used to be this bad 😓 (this is with sea salt spray and back combing) maybe I should cut it all off again 🗡🗡
#shorthair #spoonie #spoonieproblems #chronicillness #chronicfatigue #chronicpain #ehlersdanlossyndrome #eds #ehlersdanlos #pots #dysautonomia #hypoglycemia #asthma #gastroparesis #sickgirlproblems #craphair #imissmycurls
Nyttig läsning både för personer MED kronisk smärta , och för personer som ” handskas ” med människor som lider av Kronisk smärta .. Det är så sjukt svårt vissa dagar, det är mycket pendlade i humör och mående för mig just nu .. Saker ställer till livet , gör att man tappar sugen vissa dagar , men sen nästa dag känner man sig oslagbar ( en stund iaf )... Ja ... Hjärndimma ikväll ... Så jag skriver nog massa dumt bara ... Trötthet ... En liten del ångest ... Och denna huvudvärk som nu hållt i sig i ca 20 dagar , konstant ... Det är inte konstigt att man längtar bort ibland .... Helt slut på skedar ikväll ... Dom va slut runt lunch ... Varför så mkt timmar på dygnet och så lite skedar att spela med .:. God Natt ! 💫🌛💫 #spoonie #outofspoons #eds #ehlersdanlossyndrome #fighteds
Nyttig läsning både för personer MED kronisk smärta , och för personer som ” handskas ” med människor som lider av Kronisk smärta .. Det är så sjukt svårt vissa dagar, det är mycket pendlade i humör och mående för mig just nu .. Saker ställer till livet , gör att man tappar sugen vissa dagar , men sen nästa dag känner man sig oslagbar ( en stund iaf )... Ja ... Hjärndimma ikväll ... Så jag skriver nog massa dumt bara ... Trötthet ... En liten del ångest ... Och denna huvudvärk som nu hållt i sig i ca 20 dagar , konstant ... Det är inte konstigt att man längtar bort ibland .... Helt slut på skedar ikväll ... Dom va slut runt lunch ... Varför så mkt timmar på dygnet och så lite skedar att spela med .:. God Natt ! 💫🌛💫 #spoonie  #outofspoons  #eds  #ehlersdanlossyndrome  #fighteds 
Niezły duecik 😏💃 @emilka.pieronkiewicz
#training #dancehall #eds #chicks
“It’s the most wonderful time of the year” ✨✨🎄 Today I just wanted to share these lovely Bracelets from @naturaholicshop not only have I fallen in love with this brands beautiful natural high quality skincare, but this gem is my Birthstone as well as one for Digestive Health. (Which we all know I am in need of 😉) If you are in need of some stocking stuffers I highly suggest you take a look at what Nahid has to offer, nothing beats the gift of clean beauty during this holiday season ✨🌱 plus save some money using my discount code: LoveMellie 
Enjoy and have a very Merry Christmas my friends 😘😘✨ .
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
#greenbeauty #organicskincare #cleanbeauty #photooftheday #yoga #selflove #skincare #skincareroutine #healthyskin #beauty #blogger #influencer #model #modeling #inspiration #eds #ehlersdanlos #gp #thegirlwhocanteat #spoonie #madewithlove #organicmakeup #share #instapic
“It’s the most wonderful time of the year” ✨✨🎄 Today I just wanted to share these lovely Bracelets from @naturaholicshop not only have I fallen in love with this brands beautiful natural high quality skincare, but this gem is my Birthstone as well as one for Digestive Health. (Which we all know I am in need of 😉) If you are in need of some stocking stuffers I highly suggest you take a look at what Nahid has to offer, nothing beats the gift of clean beauty during this holiday season ✨🌱 plus save some money using my discount code: LoveMellie Enjoy and have a very Merry Christmas my friends 😘😘✨ . . . . . . . . . . . . . . . . . . . . . . #greenbeauty  #organicskincare  #cleanbeauty  #photooftheday  #yoga  #selflove  #skincare  #skincareroutine  #healthyskin  #beauty  #blogger  #influencer  #model  #modeling  #inspiration  #eds  #ehlersdanlos  #gp  #thegirlwhocanteat  #spoonie  #madewithlove  #organicmakeup  #share  #instapic 
#tutting #tuttingdance #learning 😍🤗👍🤞🖖🤙👌👐💕💃🎀
#EliteDanceSchool #EDS #EliteTutting
🤗😁😄🎀☃️❄💃💃💃@_szaboangelika
#EliteDanceSchool #EDS
@lucystafford2 is an inspiration! Please follow @hospitallovebundles such an amazing idea, thinking of those in hospital over the Christmas period. 
#ehlersdanlos #ehlersdanlossyndrome #eds#ehlersdanlossyndromeawarenessmonth #hospital
наконец-то селфанулись, ну
мать хоподжазфанковых драконов и чемпион семи королевств в двух номинациях, так то 💪😹🐲
@robson5653 
#funkers #funkygirl #dancerlife #robson #eds #enjoydanceschool #chempions #chempionat #hiphop #hiphopdance #dancers
Thank you to everyone who has participated in our first 4 Holiday Giveback Photo Challenges! Now, on to Week 5: Show us your favorite UGLY holiday SWEATERS!! Post a pic with the #teamdafgiveback
You have until 11:59 pm on Sunday night to enter! 😴 One participant will win a sleep mask! All participants will be entered to win one of 3 Team DAF Comfort Kits, which include cozy blankets, cash and more! Go to http://woobox.com/n4iomn for more details! Link in profile.
Thank you to everyone who has participated in our first 4 Holiday Giveback Photo Challenges! Now, on to Week 5: Show us your favorite UGLY holiday SWEATERS!! Post a pic with the #teamdafgiveback  You have until 11:59 pm on Sunday night to enter! 😴 One participant will win a sleep mask! All participants will be entered to win one of 3 Team DAF Comfort Kits, which include cozy blankets, cash and more! Go to http://woobox.com/n4iomn for more details! Link in profile.
Eddie Kaspbrak❤ an adorable smol bean. I'm not ready to see him die in chapter 2 ):
-
@jackdgrazer
#it #eddie #kaspbrak #eddiekaspbrak #eds #it2017 my edit:)
#Repost @elastigirl84
・・・
Some of the baubles I made for the Zebra EDS tree for Wombourne Christmas Tree Festival. Quite simple I know but it shows the Zebra stripes and the main thing, the name of the website for @ehlersdanlosuk so folks can look it up and find out more. The baubles are the paper mache ones from @hobbycrafthq for just 50p each, took a few coats of white paint to block out the background completely but it worked. Used a letter stamp kit from Poundland (thanks #foundatpoundland for that) and that was all it took - told you they were basic and simple, hopefully they looked ok on the tree. Added with everything all the others did I am sure the tree was going to attract the attention needed #eds #edsuk #ehlersdanlosuk #ehlersdanlossyndrome #ehlersdanlossupport #edszebra #ehlersdanloszebra #medicalzebra #bauble #zebrabauble #zebra #zebraprint #supportgroup #edssupportgroup #edswombourne #ehlersdanlossupportgroupwombourne #wombourne #homemade #handmade #handmadechristmas #handmadechristmasdecorations #christmasdecorations #christmas #christmas2017 #spooniexmas2017 #zebrachristmas #stripeychristmas #craft
#Repost  @elastigirl84 ・・・ Some of the baubles I made for the Zebra EDS tree for Wombourne Christmas Tree Festival. Quite simple I know but it shows the Zebra stripes and the main thing, the name of the website for @ehlersdanlosuk so folks can look it up and find out more. The baubles are the paper mache ones from @hobbycrafthq for just 50p each, took a few coats of white paint to block out the background completely but it worked. Used a letter stamp kit from Poundland (thanks #foundatpoundland  for that) and that was all it took - told you they were basic and simple, hopefully they looked ok on the tree. Added with everything all the others did I am sure the tree was going to attract the attention needed #eds  #edsuk  #ehlersdanlosuk  #ehlersdanlossyndrome  #ehlersdanlossupport  #edszebra  #ehlersdanloszebra  #medicalzebra  #bauble  #zebrabauble  #zebra  #zebraprint  #supportgroup  #edssupportgroup  #edswombourne  #ehlersdanlossupportgroupwombourne  #wombourne  #homemade  #handmade  #handmadechristmas  #handmadechristmasdecorations  #christmasdecorations  #christmas  #christmas2017  #spooniexmas2017  #zebrachristmas  #stripeychristmas  #craft 
Base cremosa ELF Tinted Moisturizer SPF20

R$35,00 cada

O Tinted Moisturizer é justamente para hidratar e cobrir pequenas imperfeições, sem ficar aquela aparência "pesada". Essa base hidratante com cor, possui FPS 20, sem falar nos ingredientes ativos: Aloe Vera, Pepino e Vitaminas A,C e E. Super refrescante e hidratante.
O produto tem 25ml e rende bastante, a consistência é cremosa e possui um cheiro suave.

https://www.luckenjoy.com.br/maquiagens/bases-bb-cream-e-cc-cream1/
Base cremosa ELF Tinted Moisturizer SPF20 R$35,00 cada O Tinted Moisturizer é justamente para hidratar e cobrir pequenas imperfeições, sem ficar aquela aparência "pesada". Essa base hidratante com cor, possui FPS 20, sem falar nos ingredientes ativos: Aloe Vera, Pepino e Vitaminas A,C e E. Super refrescante e hidratante. O produto tem 25ml e rende bastante, a consistência é cremosa e possui um cheiro suave. https://www.luckenjoy.com.br/maquiagens/bases-bb-cream-e-cc-cream1/
I got a secret! 😜 8lbs ankle weights smuggled under my scrubs because leg/glute gains are imperative! My coworkers giggle when they catch me doing squats, lunges and calf raises in the hall but it's cool. I do it for me.
I got a secret! 😜 8lbs ankle weights smuggled under my scrubs because leg/glute gains are imperative! My coworkers giggle when they catch me doing squats, lunges and calf raises in the hall but it's cool. I do it for me.
I'm so grateful for every day so many talented people let me know their knowledge.🏋️‍♀️🏋️‍♀️🏋️‍♀️
Good night sweetheart time to go 
#fightingspirit #fitness #eds #forlife #zebrawarrior #zebrapower
My Occipital Nerve Stimulator battery is located in my upper chest and the incision is more painful than my head incision. The surgeon creates a pocket in between the muscle and breast tissue so the battery can fit in the pocket in hope that it’s secure enough so the battery is unable to move. You can imagine how painful, sore, inflamed and tight my chest is feeling, it feels like someone has shoved a huge rock into my chest and there isn’t enough room to hold it. Hopefully with time my body will adapt to it and the battery will become more comfortable in my chest. I can’t sleep on my side yet or my front which I’m really missing but it’s far to sore, tender and painful at the moment. Taking paracetamol for the pain and ibuprofen for the inflammation. I’m slowly using my right arm more and more, but obviously I can’t do any heavy lifting on that side for a good 6-8 weeks, but it’s recommended to do gentle exercises so you don’t get too stiff or a frozen shoulder. My scar on my head is feeling very tight, stiff and uncomfortable but I have to remember this will ease over the months. Remember never be ashamed of your scars, because they tell a story of the hurdles you’ve overcome and the struggles that you survived 💜
My Occipital Nerve Stimulator battery is located in my upper chest and the incision is more painful than my head incision. The surgeon creates a pocket in between the muscle and breast tissue so the battery can fit in the pocket in hope that it’s secure enough so the battery is unable to move. You can imagine how painful, sore, inflamed and tight my chest is feeling, it feels like someone has shoved a huge rock into my chest and there isn’t enough room to hold it. Hopefully with time my body will adapt to it and the battery will become more comfortable in my chest. I can’t sleep on my side yet or my front which I’m really missing but it’s far to sore, tender and painful at the moment. Taking paracetamol for the pain and ibuprofen for the inflammation. I’m slowly using my right arm more and more, but obviously I can’t do any heavy lifting on that side for a good 6-8 weeks, but it’s recommended to do gentle exercises so you don’t get too stiff or a frozen shoulder. My scar on my head is feeling very tight, stiff and uncomfortable but I have to remember this will ease over the months. Remember never be ashamed of your scars, because they tell a story of the hurdles you’ve overcome and the struggles that you survived 💜
We have a few appointments remaining for non-injectable treatments on the 28th and for injectable treatments on the 30th. Call 01952 794026 or book online at www.parkstreetclinic.co.uk 
#aesthetics #doctor #nurse #microneedling #eds #skincare #antiaging #antiwrinkle #botox #dermalfillers #lipfillers #lipinjections #lipocontrast #fatloss #westmidlands #shifnal #telford #wolverhampton #birmingham
This picture may look like just a cute/typical "warming your hands by the fire" picture, but, there is SO much more story behind it. 
At greenfield village, every firepit [aka place to warm up] is in the snow, mud, grass, up a hill or all of the above. 
Just to get me to some sort of warmth for this picture to be taken, Alex has to push me up a curb, get stuck in mud, slip on ice, push over grass and almost flip the wheelchair. 
While this picture was being taken, You would never know the agonizing, bone breaking pain my hands were in. It was so cold that my arthritis filled fingers locked up, and were so tense that as they warmed up, they dislocated. To find relief, I had to stick my hands over a H O T fire, get burning smoke in my eyes and lungs, and pop out a shoulder. Its just what you have to do sometimes! 
Nobody passing by, or seeing this picture now, would think twice about what was going on. "Oh, she's just warming her hands" This picture puts into prospective just how invisible, invisible illnesses can be. #elhersdanlos #eds #edsstrong #invisibleillness #teen #zebra #like #lfl #follow
This picture may look like just a cute/typical "warming your hands by the fire" picture, but, there is SO much more story behind it. At greenfield village, every firepit [aka place to warm up] is in the snow, mud, grass, up a hill or all of the above. Just to get me to some sort of warmth for this picture to be taken, Alex has to push me up a curb, get stuck in mud, slip on ice, push over grass and almost flip the wheelchair. While this picture was being taken, You would never know the agonizing, bone breaking pain my hands were in. It was so cold that my arthritis filled fingers locked up, and were so tense that as they warmed up, they dislocated. To find relief, I had to stick my hands over a H O T fire, get burning smoke in my eyes and lungs, and pop out a shoulder. Its just what you have to do sometimes! Nobody passing by, or seeing this picture now, would think twice about what was going on. "Oh, she's just warming her hands" This picture puts into prospective just how invisible, invisible illnesses can be. #elhersdanlos  #eds  #edsstrong  #invisibleillness  #teen  #zebra  #like  #lfl  #follow 
New Blog Post. Every week, I can unload all the shit I find on the internet on you guys. Link in bio. 
www.unapologeticallysorry.com/single-post/2017/12/18/Shit-I-found-this-Week

#LookWhatIFound #UnapologeticallySorry #MentalHealth #Cincinnati #Blogger #NonTraditionalStudent #31YearOldStudent #UphillBattle #ChronicIllness #chronicpain #hypermobile #ptsd #ConnectiveTissue #EDS
hey it's Ally. this is my sweet kitty Babuhs! she wanted to say hi to all of her mommy's spoonie friends and she wants to send love and snuggles to all of you! babuhs and i hope today is just as magical as you all are!! 💜 thanks for being here. ~Ally
hey it's Ally. this is my sweet kitty Babuhs! she wanted to say hi to all of her mommy's spoonie friends and she wants to send love and snuggles to all of you! babuhs and i hope today is just as magical as you all are!! 💜 thanks for being here. ~Ally
Jaime - camping at the pinnacles around age 5 (2005). Always been a tough “I do” kinda girl.  I hate EDS 🤬
-
-
-
-
-

#eds #ehlersdanlos #holga #optoutside #rei1440project #youhavenoclue #zebrastrong
The babies and I are having an easy Monday as we are all a bit under the weather. I love this blanket. #blanket #chilly #kittens #tigercat #Ivy #Zoey #furbabies #catsofinstagram #stephaniemcafee #bugtussle #themadfatroadtohappiness #bookworm #snuggles #acejones #busterloo  #penguinbooks #penguin #fibromyalgia #eds #bpd #southwest #southwestern #teal #orange #red #yellow #purple #reindeers
Stretch & breathe deeply 🧘🏼‍♀️
•
Filmed my mini morning stretch. Didn’t manage a workout today but connecting to my breath & body, even just for 5 minutes, makes me feel a little better 💗
Stretch & breathe deeply 🧘🏼‍♀️ • Filmed my mini morning stretch. Didn’t manage a workout today but connecting to my breath & body, even just for 5 minutes, makes me feel a little better 💗