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#Repost @sayurimei89 with @repostapp
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Just another regular day in what is now my life. Why now... Because in this exact same date last year I had a notion of what I might have but not a definite diagnosis like a do now, #ehlersdanlossyndrome 
And how long did that diagnosis took? 
Only 27 years... You see, when you are in a small country like mine (Costa Rica) #EhlersDanlos isn't something that you commonly hear as a diagnosis, actually the 1st recollection of it was from the lovely Martina from @eatyourkimchi and I felt bad for her because she is such a lovely and upbeat person like I consider myself, but my stupid head never connected the dots, my cousin had to that for me (I now blame that on brain fog lol). So on this #invisibledisabilitiesweek I decided to walk you to what is one of my common days... Starting off by my trusty heater, because even if I live in the tropics the slightest temperature change can send me into a terrible pain flare which happen last night, so I had to give myself a shot (and I'm starting to get a hang on those), follow by one of the 4 drs appointments I had this week, all of which I was join by Dazzle my pocket companion who is my reminder that I am not alone in this struggle, that like Martina said we have to #buildaladder each day and then to my trusty pill box. Those are the ones I'm currently using, but I have two drawers full of meds, ones that have work, some that haven't... The fact that I'm 85% allergic to all pain meds also makes pain management tricky. 
But each day I get up and do it all over again, and even if I have receive verbal abuse from medical staff at the ER or the specialist in my health system weren't helpful at all, when they dimished my pain simply because I choose to smile through the pain instead to scream to the top of my lungs; when my professors at university didn't believe I could get my grad school degree, look at me now I am just waiting for a final review from my advising comittee and to set a date to defend my thesis. 
Never let anyone set your boundaries, you know your own body better than anyone else, so you are the only one who knows where your limits are, you might as well prove them all wr
#Repost  @sayurimei89 with @repostapp ・・・ Just another regular day in what is now my life. Why now... Because in this exact same date last year I had a notion of what I might have but not a definite diagnosis like a do now, #ehlersdanlossyndrome  And how long did that diagnosis took? Only 27 years... You see, when you are in a small country like mine (Costa Rica) #EhlersDanlos  isn't something that you commonly hear as a diagnosis, actually the 1st recollection of it was from the lovely Martina from @eatyourkimchi and I felt bad for her because she is such a lovely and upbeat person like I consider myself, but my stupid head never connected the dots, my cousin had to that for me (I now blame that on brain fog lol). So on this #invisibledisabilitiesweek  I decided to walk you to what is one of my common days... Starting off by my trusty heater, because even if I live in the tropics the slightest temperature change can send me into a terrible pain flare which happen last night, so I had to give myself a shot (and I'm starting to get a hang on those), follow by one of the 4 drs appointments I had this week, all of which I was join by Dazzle my pocket companion who is my reminder that I am not alone in this struggle, that like Martina said we have to #buildaladder  each day and then to my trusty pill box. Those are the ones I'm currently using, but I have two drawers full of meds, ones that have work, some that haven't... The fact that I'm 85% allergic to all pain meds also makes pain management tricky. But each day I get up and do it all over again, and even if I have receive verbal abuse from medical staff at the ER or the specialist in my health system weren't helpful at all, when they dimished my pain simply because I choose to smile through the pain instead to scream to the top of my lungs; when my professors at university didn't believe I could get my grad school degree, look at me now I am just waiting for a final review from my advising comittee and to set a date to defend my thesis. Never let anyone set your boundaries, you know your own body better than anyone else, so you are the only one who knows where your limits are, you might as well prove them all wr
F*CK YEAH FRIDAY... I hope you got through the week in one piece.
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🎨: @laurenbakerart 
#weekend #friday #friyay #fridayfeeling #fridayfunday #itstheweekend #friyayyy  #fridayvibes #weekendishere #sleepin #bed #coffee #relax #weekend #sleep
#Repost @jeannie_di with @repostapp
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This week is #InvisibleDisabilitiesWeek. I wanted to share an exercise I often do with clients with hypermobility or Ehlers Danlos Syndrome - often an invisible illness. 
One of the priorities is getting clients feeling safe, secure in their joints and functional for every day activities.  We spend much of our time sitting, standing or transitioning from one to another. To get this every day movement comfortable is essential. To get it pain free is our objective. Here I’m using a Reformer Jumpboard to facilitate this feeling of sitting to standing without the load on the joints or balance concerns. It gives the opportunity to work on joint control, alignment and sensory awareness. Progression to one leg to help with walking strength and control. I just love the versatility the Reformer can give to support and strengthen.
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#invisibledisabilitiesweek #invisibleillness #chronicpain #pain #eds #ehlersdanlos #ehlersdanlossyndrome #hypermobility #pilates #reformer #reformerpilates #zebra #zebrastrong
#Repost  @jeannie_di with @repostapp ・・・ This week is #InvisibleDisabilitiesWeek . I wanted to share an exercise I often do with clients with hypermobility or Ehlers Danlos Syndrome - often an invisible illness. One of the priorities is getting clients feeling safe, secure in their joints and functional for every day activities. We spend much of our time sitting, standing or transitioning from one to another. To get this every day movement comfortable is essential. To get it pain free is our objective. Here I’m using a Reformer Jumpboard to facilitate this feeling of sitting to standing without the load on the joints or balance concerns. It gives the opportunity to work on joint control, alignment and sensory awareness. Progression to one leg to help with walking strength and control. I just love the versatility the Reformer can give to support and strengthen. . . #invisibledisabilitiesweek  #invisibleillness  #chronicpain  #pain  #eds  #ehlersdanlos  #ehlersdanlossyndrome  #hypermobility  #pilates  #reformer  #reformerpilates  #zebra  #zebrastrong 
My spoonie dog 😍
My spoonie dog 😍
Not very sophisticated, but this is my favourite wine. And it's red, so I can pretend I'm Cosima Niehaus. Well I was a biochemist​ once upon a time! Happy Friday folks! 😍

#redwine #fridaynight #fridayfeeling #cosimaniehaus #scientist #biochemistry #universityofbristol #pastlife #spoonie #hypermobilitysyndrome #atleastiunderstandgenetics #genetic #inthegenes #ehlersdanlos #alumni #orphanblack
Been so MIA recently, I’ve been really ill, still struggling with the loss of my Heidi, my Grandad has been ill and I’ve been trying to keep on top of my studies! Today I actually had an exam, and I got 97% which is amazing as I was sure I failed due to the fact that I’m not sleeping (haven’t been for months), I’ve subluxed my sacroiliac joint and my neck was killing me, so anything more than a pass was good news! And my mum and dad got me a card with a dog on it! So all things considered it turned out to be an alright day! 😷🤕💊 #EDS #ehlersdanlos #ehlersdanlossyndrome #hypermobility #hypermobilitysyndrome #hms #pots #posturalorthostatictachycardiasyndrome #scoliosis #spinalfusion #spinalsurgery #spinalrejection #kyphosis #arthritis #sacroiliacjoint #sjögrens #sjögrenssyndrom #neuropathy #chronicpain #chronicfatigue #chronicillness #chronicallyill #spoonie #zebra
Been so MIA recently, I’ve been really ill, still struggling with the loss of my Heidi, my Grandad has been ill and I’ve been trying to keep on top of my studies! Today I actually had an exam, and I got 97% which is amazing as I was sure I failed due to the fact that I’m not sleeping (haven’t been for months), I’ve subluxed my sacroiliac joint and my neck was killing me, so anything more than a pass was good news! And my mum and dad got me a card with a dog on it! So all things considered it turned out to be an alright day! 😷🤕💊 #EDS  #ehlersdanlos  #ehlersdanlossyndrome  #hypermobility  #hypermobilitysyndrome  #hms  #pots  #posturalorthostatictachycardiasyndrome  #scoliosis  #spinalfusion  #spinalsurgery  #spinalrejection  #kyphosis  #arthritis  #sacroiliacjoint  #sjögrens  #sjögrenssyndrom  #neuropathy  #chronicpain  #chronicfatigue  #chronicillness  #chronicallyill  #spoonie  #zebra 
Remember, over anything, LISTEN TO YOUR BODY. I know sometimes it’s not fun and sometimes your body restricts you more than you may like, but you really do need to look after it before anything else
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College is beating me up hardcore. Going to class is so hard sometimes, and it leaves me exhausted but I’m powering through. Thank you so much for 50 followers!
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#spoonie #chronicillness #dysautonomia #potssyndrome #ehlersdanlossyndrome #eds #ehlersdanlos #mcad #mastcellactivationsyndrome #gastroparesis #positivity #chronicillnesssupport #support
Remember, over anything, LISTEN TO YOUR BODY. I know sometimes it’s not fun and sometimes your body restricts you more than you may like, but you really do need to look after it before anything else ••• College is beating me up hardcore. Going to class is so hard sometimes, and it leaves me exhausted but I’m powering through. Thank you so much for 50 followers! • • • #spoonie  #chronicillness  #dysautonomia  #potssyndrome  #ehlersdanlossyndrome  #eds  #ehlersdanlos  #mcad  #mastcellactivationsyndrome  #gastroparesis  #positivity  #chronicillnesssupport  #support 
Words cannot discribe how tired I am tonight. Can hardly keep my eyes open. 
I went swimming today and spent an hour in the pool swimming. I'm building my strength up but it still takes it all out of me. 
Tomorrow got my heart echo. Then i think a chilled out day is in order 
#hypermobility #hypermobilitysyndrome #ehlersdanlos #ehlersdanlossyndrome #EDS #epilepsy #seizure #seizuredisorder #asthma #ADHD #christian #chronicpain #chronicfatigue  #invisibleillness #mentalhealth #mentalhealthproblems #hallucinations #mooddisorder #depression #wheelchairuser #neurologicalfunctionaldisorder #hypoglycemia #borderlinepersonalitydisorder #emotionallyunstabledborderlinepersonalitydisorder #BPD
Words cannot discribe how tired I am tonight. Can hardly keep my eyes open. I went swimming today and spent an hour in the pool swimming. I'm building my strength up but it still takes it all out of me. Tomorrow got my heart echo. Then i think a chilled out day is in order #hypermobility  #hypermobilitysyndrome  #ehlersdanlos  #ehlersdanlossyndrome  #EDS  #epilepsy  #seizure  #seizuredisorder  #asthma  #ADHD  #christian  #chronicpain  #chronicfatigue  #invisibleillness  #mentalhealth  #mentalhealthproblems  #hallucinations  #mooddisorder  #depression  #wheelchairuser  #neurologicalfunctionaldisorder  #hypoglycemia  #borderlinepersonalitydisorder  #emotionallyunstabledborderlinepersonalitydisorder  #BPD 
I have an invisible illness! I rely on tube feeds, IV fluids, and over 10 medications daily to keep me alive and somewhat functioning. I have more doctors than I can count, and I’m still struggling to stay afloat. Poor mental health comes with poor physical health, I struggle daily with depression, anxiety, and ptsd which is the direct result of medical trauma. This isn’t the life me, or any 20 year old, should be living... but here I am, and I’m not planning on going anywhere. *
Sports bra from the awesome @saltycysters 💜
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#invisibleillnessawareness #invisibleillnessawarenessweek #ehlersdanlos #ehlersdanlossyndrome #eds #pots #posturalorthostatictachycardiasyndrome #chronicillness #chronicillnessawareness #chronicillnesswarrior #spoonie #spooniestrong #fightlikeagirl #zebrastrong #careaboutrare #disability #disabled #tubie #tubefed #jtube #jejunostomy #port #powerport #ivfluids #saline #migrane #chronicmigrane #chronicpain
I have an invisible illness! I rely on tube feeds, IV fluids, and over 10 medications daily to keep me alive and somewhat functioning. I have more doctors than I can count, and I’m still struggling to stay afloat. Poor mental health comes with poor physical health, I struggle daily with depression, anxiety, and ptsd which is the direct result of medical trauma. This isn’t the life me, or any 20 year old, should be living... but here I am, and I’m not planning on going anywhere. * Sports bra from the awesome @saltycysters 💜 * * * #invisibleillnessawareness  #invisibleillnessawarenessweek  #ehlersdanlos  #ehlersdanlossyndrome  #eds  #pots  #posturalorthostatictachycardiasyndrome  #chronicillness  #chronicillnessawareness  #chronicillnesswarrior  #spoonie  #spooniestrong  #fightlikeagirl  #zebrastrong  #careaboutrare  #disability  #disabled  #tubie  #tubefed  #jtube  #jejunostomy  #port  #powerport  #ivfluids  #saline  #migrane  #chronicmigrane  #chronicpain 
I love this so much ❤️🌸
I love this so much ❤️🌸
Flashback Friday to the beautiful Portofino...
Flashback Friday to the beautiful Portofino...
Day 27 of #100happydays I've had knee problems since I was a small child. There were times the pain was so severe my mom would carry me around because I couldn't walk. Fast forward to now and my Dr decides it's time to try braces. I've never had my legs feel like this. I told the guy it felt weird but not bad and asked if this is how your legs are supposed to feel and he said yes it's preventing them from overextending. Keeping them straight and supported. It was incredible. Can't believe I'm 32 and just experiencing what people who aren't bendy feel. If that makes sense lol #jointhypermobilitysyndrome #ehlersdanlos #photooftheday #mylegsarestraight
Day 27 of #100happydays  I've had knee problems since I was a small child. There were times the pain was so severe my mom would carry me around because I couldn't walk. Fast forward to now and my Dr decides it's time to try braces. I've never had my legs feel like this. I told the guy it felt weird but not bad and asked if this is how your legs are supposed to feel and he said yes it's preventing them from overextending. Keeping them straight and supported. It was incredible. Can't believe I'm 32 and just experiencing what people who aren't bendy feel. If that makes sense lol #jointhypermobilitysyndrome  #ehlersdanlos  #photooftheday  #mylegsarestraight 
Farewell Igzactly420! We will miss you! Hello @apothecariumsf ! Apothecarium has taken over exactly's location on Howard Street in San Francisco. We hope they will carry Forest Nymph tinctures and creams in the future. For the present, that location at 527 Howard St. no longer stocks forest nymph. Please find us at our other San Francisco dispensaries: @thebloomroomcollective , @thecookiecosf415 , or by delivery through @ladychatterleyslover , @getgreenwings . Have an awesome Friday ❤️#forestnymphbotanicals
Farewell Igzactly420! We will miss you! Hello @apothecariumsf ! Apothecarium has taken over exactly's location on Howard Street in San Francisco. We hope they will carry Forest Nymph tinctures and creams in the future. For the present, that location at 527 Howard St. no longer stocks forest nymph. Please find us at our other San Francisco dispensaries: @thebloomroomcollective , @thecookiecosf415 , or by delivery through @ladychatterleyslover , @getgreenwings . Have an awesome Friday ❤️#forestnymphbotanicals 
Today I'm still more sick than I thought I would be :/ I tried to be productive this morning, thinking I'd be okay because I've been on antibiotics all week and resting. Buuut I was wrong, apparently my body requests additional time to recover. However it's too nice out to continue to be stuck indoors, so the Meow and I are spending our afternoon relaxing outside! I'm really hoping to see obvious improvement soon with my lungs/cough and other symptoms. I guess stuff like this takes longer to get past when your body is already dealing with other things on a daily basis! C'mon body you can do it! 💪♿😷
Today I'm still more sick than I thought I would be :/ I tried to be productive this morning, thinking I'd be okay because I've been on antibiotics all week and resting. Buuut I was wrong, apparently my body requests additional time to recover. However it's too nice out to continue to be stuck indoors, so the Meow and I are spending our afternoon relaxing outside! I'm really hoping to see obvious improvement soon with my lungs/cough and other symptoms. I guess stuff like this takes longer to get past when your body is already dealing with other things on a daily basis! C'mon body you can do it! 💪♿😷
Grass fed steak marinated in @primalkitchenfoods dressing, flaxseed-battered zucchini and healthy fats! There is evidence that flaxseed-based lignans, which have structures similar to endogenous sex hormones, may favorably alter hormone metabolism and mitigate cancer risk (Hutchins et al., 2001). Just three tablespoons of flax seed a day has also been proven to reduce hypertension (high blood pressure) (Ursoniu et al., 2016). Admittedly, this is a re-intro for me so I am assessing how my body responds---and excessive heating may alter the fatty acid content. ✨

Hutchins, A.M. et al. (2001). Flaxseed consumption influences endogenous hormone concentrations in postmenopausal women. Nutrition and Cancer, 39(1), 58-65.

Ursoniu, S. et Al. (2016). Meta-analyses: Effects of flaxseed supplements on blood pressure: A systematic review and meta-analysis of controlled clinical trials. Clinical Nutrition, 35615-35625.
Grass fed steak marinated in @primalkitchenfoods dressing, flaxseed-battered zucchini and healthy fats! There is evidence that flaxseed-based lignans, which have structures similar to endogenous sex hormones, may favorably alter hormone metabolism and mitigate cancer risk (Hutchins et al., 2001). Just three tablespoons of flax seed a day has also been proven to reduce hypertension (high blood pressure) (Ursoniu et al., 2016). Admittedly, this is a re-intro for me so I am assessing how my body responds---and excessive heating may alter the fatty acid content. ✨ Hutchins, A.M. et al. (2001). Flaxseed consumption influences endogenous hormone concentrations in postmenopausal women. Nutrition and Cancer, 39(1), 58-65. Ursoniu, S. et Al. (2016). Meta-analyses: Effects of flaxseed supplements on blood pressure: A systematic review and meta-analysis of controlled clinical trials. Clinical Nutrition, 35615-35625.
Nutrition is so important for healing! Since I have trouble with allergies, motility and absorption I gave up on taking vitamins as pills or capsules. Thankfully I was recently informed about sublingual vitamins that get absorbed in the mouth! I'm excited to give these a try. I also found pure vitamin C in a powder format since I'm somewhat allergic to  the flavored chewables. Has anyone else had similar problems and found a trustworthy Vitamin brand?! I would love to hear what you guys are doing & appreciate any advice! Fresh juicing with @omegajuicing  and meal supplements with @drinkorgain are my favorite EDS nutrional hacks. Stay happy and healthy everyone✨I'll be sure to keep you'll updated on my Vitamin search. #ehlersdanlossyndrome #ehlersdanlos #mastcellactivationsyndrome #mastcellactivationdisorder #mastcelldisease #dysmotility #gastroparesis #colonicinertia #intestinaldysmotility #connetivetissuedisorder #inflamatoryboweldisease #ulcerativecolitis #nutritionaltherapy #nutritionalsupplements #embracethebrace
Nutrition is so important for healing! Since I have trouble with allergies, motility and absorption I gave up on taking vitamins as pills or capsules. Thankfully I was recently informed about sublingual vitamins that get absorbed in the mouth! I'm excited to give these a try. I also found pure vitamin C in a powder format since I'm somewhat allergic to the flavored chewables. Has anyone else had similar problems and found a trustworthy Vitamin brand?! I would love to hear what you guys are doing & appreciate any advice! Fresh juicing with @omegajuicing and meal supplements with @drinkorgain are my favorite EDS nutrional hacks. Stay happy and healthy everyone✨I'll be sure to keep you'll updated on my Vitamin search. #ehlersdanlossyndrome  #ehlersdanlos  #mastcellactivationsyndrome  #mastcellactivationdisorder  #mastcelldisease  #dysmotility  #gastroparesis  #colonicinertia  #intestinaldysmotility  #connetivetissuedisorder  #inflamatoryboweldisease  #ulcerativecolitis  #nutritionaltherapy  #nutritionalsupplements  #embracethebrace 
regram @disautonomia.la
Continuamos con nuestro #MesTurquesa y queremos que nos entienda que por un momento se coloquen en nuestros zapatos y vean la vida un poco como la ve un disautonomo porque solo porque ayer pude hacer algo, no significa que hoy lo pueda hacer, lo mas seguro y probablemente me cueste mucho ¿Por que? Porque no todos los días amanecemos con las mismas energias, con las misma capacidad de fuerza para poder hacer las cosas, no todos días para un disautonomo es igual porque así como tenemos días muy bueno tenemos días muy malos inclusive en un mismo día podemos empezar bien y terminar el día mal, nuestro cuerpo es como un sube y baja que a veces ni nosotros mismo a pesar de la sal, del liquido o del tratamiento que tegamos lo podemos controlar. Queremos que entiendan que no todo dolor viene con un cojeo u otra síntoma visible muchas veces nuestro compañero se hace invisible para el resto del mundo pero no para nosotros. Únete a nuestro mes de concientización 💙😉✌📚🏥🌎😀🙌💙
#POTS #EhlersDanlos #Disautonomia #Postural #Ortostatica #Sincope #Simpatico #Parasimpatico #Dysautonomia #Taquicardia #EnfermedadesRaras #Invisible #ActitudPositiva #SindromePOTS #EnfermedadInvisible #Sick #MiCompañeroFiel #VamosQueSiSePuede #Informate #Aceptación #SistemaNervioso #Corazon #Cerebro #IntoleranciaOrtostatica #SiguePersisteYLuchaPorVivir
#DisautonomiaEsLoQueTengoNoLoQueSoy #MesTurquesa
regram @disautonomia.la Continuamos con nuestro #MesTurquesa  y queremos que nos entienda que por un momento se coloquen en nuestros zapatos y vean la vida un poco como la ve un disautonomo porque solo porque ayer pude hacer algo, no significa que hoy lo pueda hacer, lo mas seguro y probablemente me cueste mucho ¿Por que? Porque no todos los días amanecemos con las mismas energias, con las misma capacidad de fuerza para poder hacer las cosas, no todos días para un disautonomo es igual porque así como tenemos días muy bueno tenemos días muy malos inclusive en un mismo día podemos empezar bien y terminar el día mal, nuestro cuerpo es como un sube y baja que a veces ni nosotros mismo a pesar de la sal, del liquido o del tratamiento que tegamos lo podemos controlar. Queremos que entiendan que no todo dolor viene con un cojeo u otra síntoma visible muchas veces nuestro compañero se hace invisible para el resto del mundo pero no para nosotros. Únete a nuestro mes de concientización 💙😉✌📚🏥🌎😀🙌💙 #POTS  #EhlersDanlos  #Disautonomia  #Postural  #Ortostatica  #Sincope  #Simpatico  #Parasimpatico  #Dysautonomia  #Taquicardia  #EnfermedadesRaras  #Invisible  #ActitudPositiva  #SindromePOTS  #EnfermedadInvisible  #Sick  #MiCompañeroFiel  #VamosQueSiSePuede  #Informate  #Aceptación  #SistemaNervioso  #Corazon  #Cerebro  #IntoleranciaOrtostatica  #SiguePersisteYLuchaPorVivir  #DisautonomiaEsLoQueTengoNoLoQueSoy  #MesTurquesa 
Deep in the sea ;) #inktober2017
One lucky winner will be chosen for our “Invisible No More” Giveaway to celebrate #InvisibleDisabilitiesWeek •••
To enter, simply follow the instructions below!
1. Follow us (@backpackhealth) and the two other pages (@victonation & @thezebranetwork) 2. Like this post and everyone else's involved 3. Tap on the photo to see where to go next. Once you've made your way back here, you have completed your entry! Please remember you must follow everyone in the loop to qualify. All entries must be submitted by ‪10/21 11pm EST‬.
You can increase your entry for every friend that you tag in the comments!
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The winner will be announced ‪on 10/22‬, we appreciate your patience while we verify all the entries. Good luck!
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#butyoudontlooksick #makinginvisibleillnessesvisible
#InvisibleIllness #InvisibleDisability #InvisibleIllnessAwarenessWeek #InvisibleDisabilities #BackpackHealth #HealthManagement
#InvisibleNoMore #InvisibleIsReal #YoureTooYoungToBeSick #InvisibleIllness #Scars #chronicillness #raredisease #spoonie #ehlersdanlos #ehlersdanlossyndrome #chiari #marfans #tetheredcord #crps #dysautonomia #hypokalemicperiodicparalysis #chronicpain #medication #hospital #fight #advocate 
#contest •••
Per Instagram rules, we must mention this is in no way sponsored, administered, or associated with Instagram, Inc. By entering, entrants confirm they are 13+ years of age, release Instagram of responsibility, and agree to Instagram's term of use.
One lucky winner will be chosen for our “Invisible No More” Giveaway to celebrate #InvisibleDisabilitiesWeek  ••• To enter, simply follow the instructions below! 1. Follow us (@backpackhealth) and the two other pages (@victonation & @thezebranetwork) 2. Like this post and everyone else's involved 3. Tap on the photo to see where to go next. Once you've made your way back here, you have completed your entry! Please remember you must follow everyone in the loop to qualify. All entries must be submitted by ‪10/21 11pm EST‬. You can increase your entry for every friend that you tag in the comments! ••• The winner will be announced ‪on 10/22‬, we appreciate your patience while we verify all the entries. Good luck! ••• #butyoudontlooksick  #makinginvisibleillnessesvisible  #InvisibleIllness  #InvisibleDisability  #InvisibleIllnessAwarenessWeek  #InvisibleDisabilities  #BackpackHealth  #HealthManagement  #InvisibleNoMore  #InvisibleIsReal  #YoureTooYoungToBeSick  #InvisibleIllness  #Scars  #chronicillness  #raredisease  #spoonie  #ehlersdanlos  #ehlersdanlossyndrome  #chiari  #marfans  #tetheredcord  #crps  #dysautonomia  #hypokalemicperiodicparalysis  #chronicpain  #medication  #hospital  #fight  #advocate  #contest  ••• Per Instagram rules, we must mention this is in no way sponsored, administered, or associated with Instagram, Inc. By entering, entrants confirm they are 13+ years of age, release Instagram of responsibility, and agree to Instagram's term of use.
So I know that I have been quite silent. I appreciate everyone's messages checking in and appreciate you even more for respecting my decision to wait to talk about things. When tragedy strikes, we tend to be silent and I think that is healthy. 
Now I am ready to break the silence. I wrote a lengthy post filling you in and sending you a HUGE thank you (don't worry if you want a small update you can read the first and last paragraph 😉 I get the time crunch situation.) Also THANK YOU for after only blogging for a little over a month... for having me make the top 100 list for chronic illness blogs! 🎉That was so exciting to wake up too 😘 thank you all for your support.

If you are on Instagram the new blog link can be found in the bio! If you are on Facebook here is the link: https://livingthechronicillnesslife.com/2017/10/20/breaking-the-silence/ .
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#livingthechronicillnesslife #amnesiawontwin #spoonie 
#rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure  #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3
So I know that I have been quite silent. I appreciate everyone's messages checking in and appreciate you even more for respecting my decision to wait to talk about things. When tragedy strikes, we tend to be silent and I think that is healthy. Now I am ready to break the silence. I wrote a lengthy post filling you in and sending you a HUGE thank you (don't worry if you want a small update you can read the first and last paragraph 😉 I get the time crunch situation.) Also THANK YOU for after only blogging for a little over a month... for having me make the top 100 list for chronic illness blogs! 🎉That was so exciting to wake up too 😘 thank you all for your support. If you are on Instagram the new blog link can be found in the bio! If you are on Facebook here is the link: https://livingthechronicillnesslife.com/2017/10/20/breaking-the-silence/ . . . #livingthechronicillnesslife  #amnesiawontwin  #spoonie  #rsd  #crps  #rsdcrps  #rsdcrpsawareness  #rsdcrps4acure  #eds  #ehlersdanlos  #ehlersdanlossyndrome  #edstype3 
One lucky winner will be chosen for our “Invisible No More” Giveaway to celebrate #InvisibleDisabilitiesWeek •••
To enter, simply follow the instructions below!
1. Follow (@victonation) and the two other pages 2. Like this post and everyone else's involved 3. Tap on the photo to see where to go next. Once you've made your way back here, you have completed your entry! Please remember you must follow everyone in the loop to qualify. All entries must be submitted by ‪10/21 11pm EST‬.
You can increase your entry for every friend that you tag in the comments!
•••
The winner will be announced ‪on 10/22‬, we appreciate your patience while we verify all the entries. Good luck!
•••
#butyoudontlooksick #makinginvisibleillnessesvisible
#InvisibleIllness #InvisibleDisability #InvisibleIllnessAwarenessWeek #InvisibleDisabilities #BackpackHealth #HealthManagement
#InvisibleNoMore #InvisibleIsReal #YoureTooYoungToBeSick #InvisibleIllness #Scars #chronicillness #raredisease #spoonie #ehlersdanlos #ehlersdanlossyndrome #chiari #marfans #tetheredcord #crps #dysautonomia #hypokalemicperiodicparalysis #chronicpain #medication #hospital #fight #advocate
#contest •••
Per Instagram rules, we must mention this is in no way sponsored, administered, or associated with Instagram, Inc. By entering, entrants confirm they are 13+ years of age, release Instagram of responsibility, and agree to Instagram's term of use.
One lucky winner will be chosen for our “Invisible No More” Giveaway to celebrate #InvisibleDisabilitiesWeek  ••• To enter, simply follow the instructions below! 1. Follow (@victonation) and the two other pages 2. Like this post and everyone else's involved 3. Tap on the photo to see where to go next. Once you've made your way back here, you have completed your entry! Please remember you must follow everyone in the loop to qualify. All entries must be submitted by ‪10/21 11pm EST‬. You can increase your entry for every friend that you tag in the comments! ••• The winner will be announced ‪on 10/22‬, we appreciate your patience while we verify all the entries. Good luck! ••• #butyoudontlooksick  #makinginvisibleillnessesvisible  #InvisibleIllness  #InvisibleDisability  #InvisibleIllnessAwarenessWeek  #InvisibleDisabilities  #BackpackHealth  #HealthManagement  #InvisibleNoMore  #InvisibleIsReal  #YoureTooYoungToBeSick  #InvisibleIllness  #Scars  #chronicillness  #raredisease  #spoonie  #ehlersdanlos  #ehlersdanlossyndrome  #chiari  #marfans  #tetheredcord  #crps  #dysautonomia  #hypokalemicperiodicparalysis  #chronicpain  #medication  #hospital  #fight  #advocate  #contest  ••• Per Instagram rules, we must mention this is in no way sponsored, administered, or associated with Instagram, Inc. By entering, entrants confirm they are 13+ years of age, release Instagram of responsibility, and agree to Instagram's term of use.
Team DAF often asks how can I help? Today, super easy...if you tweet please post about our event. Simply type in teamdaf.org and you’re on your way! 
#dysautonomia #dysautonomiaawareness #ehlersdanlossyndrome #mito #chronicillness #teamdaf #invisableillness #mastcell #mastcelldisease #gastroparesis  #sickofbeingsick  #sick #ehlersdanlos #potsie #potsies #potsy #pots #eds #tachycardia #lowbloodpressure #mitochondrialdisease #autonomicdysfunction #salty
Team DAF often asks how can I help? Today, super easy...if you tweet please post about our event. Simply type in teamdaf.org and you’re on your way! #dysautonomia  #dysautonomiaawareness  #ehlersdanlossyndrome  #mito  #chronicillness  #teamdaf  #invisableillness  #mastcell  #mastcelldisease  #gastroparesis  #sickofbeingsick  #sick  #ehlersdanlos  #potsie  #potsies  #potsy  #pots  #eds  #tachycardia  #lowbloodpressure  #mitochondrialdisease  #autonomicdysfunction  #salty 
Connaissez-vous l’anémie falciforme ou drépanocytose ? 💉
⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Cause: 
Il s’agit d’une maladie génétique liée à une anomalie de l'hémoglobine, constituant des globules rouges. Le problème est que cette hémoglobine, qui constitue nos globules rouges, se gélifie et, du coup, les globules rouges n'arrivent plus à passer les petits capillaires.
⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Symptômes:
-fatigue
- essoufflement
- tachycardie
- migraines
- syndrome de Raynaud
- douleurs thoraciques
- douleurs musculaires diffuses
⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Complications possibles:
- infections
- retard de croissance
- gonflements mains et pieds
- problèmes oculaires
- hypertension
- AVC
- ulcération de la peau
- arthrose, ostéoporose
⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Traitements:
- antalgiques
- transfusions sanguines
- greffes de moelle osseuse
⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Connaissez-vous l’anémie falciforme ou drépanocytose ? 💉 ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ Cause: Il s’agit d’une maladie génétique liée à une anomalie de l'hémoglobine, constituant des globules rouges. Le problème est que cette hémoglobine, qui constitue nos globules rouges, se gélifie et, du coup, les globules rouges n'arrivent plus à passer les petits capillaires. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ Symptômes: -fatigue - essoufflement - tachycardie - migraines - syndrome de Raynaud - douleurs thoraciques - douleurs musculaires diffuses ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ Complications possibles: - infections - retard de croissance - gonflements mains et pieds - problèmes oculaires - hypertension - AVC - ulcération de la peau - arthrose, ostéoporose ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ Traitements: - antalgiques - transfusions sanguines - greffes de moelle osseuse ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
My wife has become very involved with #teamdaf and they have created a gallery to raise awareness and fund research to help all of us in need. The art is amazing, provided by talented artists donating a portion of the sale to DAF.

Please share this link
Teamdaf.org 
Everywhere and anywhere so we can reach as broad a population as possible. Thank you!

#artforsale #artforacause #artforacure #artist #decor #iamcreative 
#dysautonomiaawareness #chronicillness #invisableillness #mastcelldisease #ehlersdanlos #potsie #potsies #potsy #pots
My wife has become very involved with #teamdaf  and they have created a gallery to raise awareness and fund research to help all of us in need. The art is amazing, provided by talented artists donating a portion of the sale to DAF. Please share this link Teamdaf.org Everywhere and anywhere so we can reach as broad a population as possible. Thank you! #artforsale  #artforacause  #artforacure  #artist  #decor  #iamcreative  #dysautonomiaawareness  #chronicillness  #invisableillness  #mastcelldisease  #ehlersdanlos  #potsie  #potsies  #potsy  #pots 
New blog post (link in bio) reflecting on my one year aerialniversary! I had hoped to take some celebratory photos at aerial this week, but instead had to settle for a throwback after pulling my back at work on Monday and entering another flare up as all my other muscles tried to compensate. Silver lining: found a mirror photo from a few months ago! .
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#aerial #aerialhoop #lyra #aerialnation #ehlersdanlossyndrome #eds #ehlersdanlos #hypermobileeds #hypemobility #hypermobilityspectrumdisorders #zebranation #zebrastrong #edswarrior
New blog post (link in bio) reflecting on my one year aerialniversary! I had hoped to take some celebratory photos at aerial this week, but instead had to settle for a throwback after pulling my back at work on Monday and entering another flare up as all my other muscles tried to compensate. Silver lining: found a mirror photo from a few months ago! . . . #aerial  #aerialhoop  #lyra  #aerialnation  #ehlersdanlossyndrome  #eds  #ehlersdanlos  #hypermobileeds  #hypemobility  #hypermobilityspectrumdisorders  #zebranation  #zebrastrong  #edswarrior 
Last few days have been so ridiculously exhausting. I spent most part of my birthday and Diwali week just running around hospitals, popping strong anti-inflammatory tablets and muscle relaxants and getting scans and tests to figure out the cause behind this maddening, deep ache in my right lower back, abdomen and hip (I find one-sided aches more challenging to manage).Honest to heaven, I haven’t experienced pain of a similar kind ever before in my last nine years of dealing with ehlers-danlos hypermobility type. This is not to say that I haven’t experienced pain of this intensity; no, I’ve dealt with higher magnitude of pain and much worse symptoms too. It’s just that I can easily and clearly distinguish between my ‘normal’ aches, pains and sensations and this strange, relatively new kind of discomfort, which initially seemed much like a muscle spasm. Let’s hope it’s not something I have to get used to. At this point, there are a few possibilities which we’re trying to explore and nothing can quite be said for sure till next week, sometime after my appointments with the specialists. Last couple of evenings have been just nice, calm and festive at the same time and filled with love and light (apart from food). Also, I’ve got a trip coming up real soon which I’m super excited about! Let’s hope I’m healthy enough to travel and get by fairly well! There’s so much happening over the next few months I can’t even begin to explain out here...things are moving and they’re moving fast! I hope everyone’s been good. A very Happy Diwali, all!✨💕#ehlersdanlos #hypermobility #pain #chronicillness #birthday #diwali #2017 #chronicpain #chroncillnesswarrior #october #spine #lowerback #bedridden #hospitalvisits #festive #Indian #festivevibes #recovery
Last few days have been so ridiculously exhausting. I spent most part of my birthday and Diwali week just running around hospitals, popping strong anti-inflammatory tablets and muscle relaxants and getting scans and tests to figure out the cause behind this maddening, deep ache in my right lower back, abdomen and hip (I find one-sided aches more challenging to manage).Honest to heaven, I haven’t experienced pain of a similar kind ever before in my last nine years of dealing with ehlers-danlos hypermobility type. This is not to say that I haven’t experienced pain of this intensity; no, I’ve dealt with higher magnitude of pain and much worse symptoms too. It’s just that I can easily and clearly distinguish between my ‘normal’ aches, pains and sensations and this strange, relatively new kind of discomfort, which initially seemed much like a muscle spasm. Let’s hope it’s not something I have to get used to. At this point, there are a few possibilities which we’re trying to explore and nothing can quite be said for sure till next week, sometime after my appointments with the specialists. Last couple of evenings have been just nice, calm and festive at the same time and filled with love and light (apart from food). Also, I’ve got a trip coming up real soon which I’m super excited about! Let’s hope I’m healthy enough to travel and get by fairly well! There’s so much happening over the next few months I can’t even begin to explain out here...things are moving and they’re moving fast! I hope everyone’s been good. A very Happy Diwali, all!✨💕#ehlersdanlos  #hypermobility  #pain  #chronicillness  #birthday  #diwali  #2017  #chronicpain  #chroncillnesswarrior  #october  #spine  #lowerback  #bedridden  #hospitalvisits  #festive  #Indian  #festivevibes  #recovery 
I’ve become very involved with #teamdaf and we have created a gallery to raise awareness and fund research to help all of us in need. The art is amazing, provided by talented artists donating a portion of the sale to DAF.

Please share this link
Teamdaf.org 
Everywhere and anywhere so we can reach as broad a population as possible. Thank you!

#artforsale #artforacause #artforacure #artist #decor #iamcreative 
#dysautonomiaawareness #chronicillness #invisableillness #mastcelldisease #ehlersdanlos #potsie #potsies #potsy #pots
I’ve become very involved with #teamdaf  and we have created a gallery to raise awareness and fund research to help all of us in need. The art is amazing, provided by talented artists donating a portion of the sale to DAF. Please share this link Teamdaf.org Everywhere and anywhere so we can reach as broad a population as possible. Thank you! #artforsale  #artforacause  #artforacure  #artist  #decor  #iamcreative  #dysautonomiaawareness  #chronicillness  #invisableillness  #mastcelldisease  #ehlersdanlos  #potsie  #potsies  #potsy  #pots 
Hello October 🍁🍂🍁
Conkers, chestnuts and Halloween 👻 
Pumpkins 🎃 and spice 🍁🍂👻🎃🍁
#carolinesnbs will be having a fabulous October Combo to recharge you and tone you up ready for the Party 🎉 season and The Little Black Dress 🕴👯💋💄💅 Party Season 🎉🎉#freesupportgroup #weightlosssupport #skinnyshakes #skinnyjuice #skinnycoffee #fatblockers #carbblockers #inchlosswraps #spoonie #ehlersdanlos #healthsprays #livelifeabundantly
Hello October 🍁🍂🍁 Conkers, chestnuts and Halloween 👻 Pumpkins 🎃 and spice 🍁🍂👻🎃🍁 #carolinesnbs  will be having a fabulous October Combo to recharge you and tone you up ready for the Party 🎉 season and The Little Black Dress 🕴👯💋💄💅 Party Season 🎉🎉#freesupportgroup  #weightlosssupport  #skinnyshakes  #skinnyjuice  #skinnycoffee  #fatblockers  #carbblockers  #inchlosswraps  #spoonie  #ehlersdanlos  #healthsprays  #livelifeabundantly 
"Save Your Spoons", " Keep Your Fork", "the best is yet to come" or a "Full Plate" with knife, fork and spoon necklaces.
Sterling Silver adjustable 18-20 inch chain. 
Direct message @faywestdesigns to order.
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#saveyourspoon #keepyourfork #thebestisyettocome 
#spooniesupport
#spoonielife
#COPD #cancer #cardiovasculardiseases #diabetes #Alzheimer #Parkinson #CrohnsDisease #Coeliacdisease #Hashimotos #Thyroiditis #Myalgicencephalomyelitis #GVHD #hepatitis #Chronicpain #osteoarthritis #rheumatoidarthritis #renalfailure #KidneyDisease #Endometriosis #Fibromyalgia #Epilepsy #Osteoporosis #LymeDisease #EhlersDanlos #MultipleSclerosis
"Save Your Spoons", " Keep Your Fork", "the best is yet to come" or a "Full Plate" with knife, fork and spoon necklaces. Sterling Silver adjustable 18-20 inch chain. Direct message @faywestdesigns to order. • • • • • #saveyourspoon  #keepyourfork  #thebestisyettocome  #spooniesupport  #spoonielife  #COPD  #cancer  #cardiovasculardiseases  #diabetes  #Alzheimer  #Parkinson  #CrohnsDisease  #Coeliacdisease  #Hashimotos  #Thyroiditis  #Myalgicencephalomyelitis  #GVHD  #hepatitis  #Chronicpain  #osteoarthritis  #rheumatoidarthritis  #renalfailure  #KidneyDisease  #Endometriosis  #Fibromyalgia  #Epilepsy  #Osteoporosis  #LymeDisease  #EhlersDanlos  #MultipleSclerosis 
Today I'm grateful for heating pads and painkillers. It helps a little, but this pain is crazy. My lower back and my legs... ☠️💀☠️ EDS sucks. .
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#ehlersdanlossyndrome #eds #ehlersdanlos #fibromyalgia #pain #highpainday #painkillers and #heatingpad #fuckeds
Que delícia esse exercício!! Meus abdominais estão muito ativados! 😍 vou fazer um monte!
Opa tá ficando difícil!😥 Quando vai acabar?? 😲😲😲Aaarrrggggg fritaaandooooo! 😂😂😂 quando a Fisioterapia vai se transformando em atividade física!! Dedicação, mudança de hábitos, inclusive alimentares, mudança de ATITUDE, VIBE POSITIVA e muito foco na recuperação = força, independência, alegria, conforto, segurança... e 4kg a menos!!! Além de um novo look e outras cositas más .... 😎 Uuuhhuuuuu parabéns @alebacalow .... Sem palavras pra descrever esse processo... #pulsarinspira #pulsarpilates #terapiamanual #fisioterapia #fisio #pilates #treinamentofuncional #pilatesaereo #pilatesmodeon #pilateslife #pilatesaereooficial #fisioterapiacomamor #reabilitação #sed #ehlersdanlos #eds #sindromeehlersdanlos
Que delícia esse exercício!! Meus abdominais estão muito ativados! 😍 vou fazer um monte! Opa tá ficando difícil!😥 Quando vai acabar?? 😲😲😲Aaarrrggggg fritaaandooooo! 😂😂😂 quando a Fisioterapia vai se transformando em atividade física!! Dedicação, mudança de hábitos, inclusive alimentares, mudança de ATITUDE, VIBE POSITIVA e muito foco na recuperação = força, independência, alegria, conforto, segurança... e 4kg a menos!!! Além de um novo look e outras cositas más .... 😎 Uuuhhuuuuu parabéns @alebacalow .... Sem palavras pra descrever esse processo... #pulsarinspira  #pulsarpilates  #terapiamanual  #fisioterapia  #fisio  #pilates  #treinamentofuncional  #pilatesaereo  #pilatesmodeon  #pilateslife  #pilatesaereooficial  #fisioterapiacomamor  #reabilitação  #sed  #ehlersdanlos  #eds  #sindromeehlersdanlos 
Sixteen years ago today, this guy and I married. I had yet to be  diagnosed with #Ehlersdanlos, and we had no idea how bad my #pain could get. Two #fantastic #kids with #autism #later, and I am even more in #love and #awe than the day we met. This man is the #light in my #life. The #joy in my day. Dammit, my #bestfriend no  matter how #cliche 💜 #truelove #marriage #sixteenyears #hardworkpaysoff #myeverything
Few hours I'll undergo another #backinjection called a #transforaminal #steroid #epidural #injection bilaterally at my L4 level.... Again.
As I believe it was last year I had one done and at that time it had increased my pain levels which of course worries me this go around; especially pain levels as most know my recent difficulties. 
But, I have complete confidence and a positive comfort level with the new pain specialist whom does all of these injections plus other types as I know he wants to identify the source of pain.
My bet is still on the L5/S1 and Left hip from the narrowing and beginning stages of #osteoarthritis as shown in last picture. 
It's currently 3:43 and I have to wake up at 7:45am-ish to have enough time of getting showered, dressed, and hair done. Check in is at 9:15am and injection is scheduled I believe at 9:45ish. Typically quick and easy but I'll be given some IV sedation but most for pain control as the doc is understanding with my concerns if I were to accidentally jolt because of pain; especially right now the way things are.
About an hour ago I woke up slightly nauseated along with some abdominal discomfort and low back/left hip pain. So; I just took 1mg if a pain med to take the edge off and 8mgs of Zofran. Starting to get tired again so gonna try to drift off. I'll update here later on. 
#lumbarspine #epiduralinjection #transforaminalinjection #transforaminalepiduralsteroidinjection #l4 #l4l5 #l5s1 #sijoint #sijointpain #lefthip #lefthippain #hipnarrowing #jointnarrowing #chronicpain #chronicillness #ehlersdanlossyndrome #ehlersdanlos #dysautonomia
Few hours I'll undergo another #backinjection  called a #transforaminal  #steroid  #epidural  #injection  bilaterally at my L4 level.... Again. As I believe it was last year I had one done and at that time it had increased my pain levels which of course worries me this go around; especially pain levels as most know my recent difficulties. But, I have complete confidence and a positive comfort level with the new pain specialist whom does all of these injections plus other types as I know he wants to identify the source of pain. My bet is still on the L5/S1 and Left hip from the narrowing and beginning stages of #osteoarthritis  as shown in last picture. It's currently 3:43 and I have to wake up at 7:45am-ish to have enough time of getting showered, dressed, and hair done. Check in is at 9:15am and injection is scheduled I believe at 9:45ish. Typically quick and easy but I'll be given some IV sedation but most for pain control as the doc is understanding with my concerns if I were to accidentally jolt because of pain; especially right now the way things are. About an hour ago I woke up slightly nauseated along with some abdominal discomfort and low back/left hip pain. So; I just took 1mg if a pain med to take the edge off and 8mgs of Zofran. Starting to get tired again so gonna try to drift off. I'll update here later on. #lumbarspine  #epiduralinjection  #transforaminalinjection  #transforaminalepiduralsteroidinjection  #l4  #l4l5  #l5s1  #sijoint  #sijointpain  #lefthip  #lefthippain  #hipnarrowing  #jointnarrowing  #chronicpain  #chronicillness  #ehlersdanlossyndrome  #ehlersdanlos  #dysautonomia 
#painsomnia
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I have a ridiculous amount of hospital socks...dammit, I am determined to get them feeling soft. Any tips would be appreciated. .
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Altso- #imissmydog ..
#fuckdepression #fuckanxiety #ilovemydog #corgi #chihuahua #spoonie #spoonielife #chronicpain #chronicpainwarrior #chronicillness #fibromyalgia #fibrowarrior #gastroparesis #tpn #ehlersdanlos #eds #zebrastrong #pots #invisibleillness #mentalhealth #anxiety #majordepression #depression #ptsd #iamnotmyillness  #igers #igdaily
#painsomnia  . . I have a ridiculous amount of hospital socks...dammit, I am determined to get them feeling soft. Any tips would be appreciated. . . . Altso- #imissmydog  .. #fuckdepression  #fuckanxiety  #ilovemydog  #corgi  #chihuahua  #spoonie  #spoonielife  #chronicpain  #chronicpainwarrior  #chronicillness  #fibromyalgia  #fibrowarrior  #gastroparesis  #tpn  #ehlersdanlos  #eds  #zebrastrong  #pots  #invisibleillness  #mentalhealth  #anxiety  #majordepression  #depression  #ptsd  #iamnotmyillness  #igers  #igdaily 
Went to the fracture clinic due to the other weeks shoulder situation and come out with a wrist splint and carpal tunnel syndrome 😂 #hospital #ehlersdanlossyndrome #eds #ehlersdanlosgrrrls #ehlersdanlos
When you can't sleep, time with God is the best way to ease that pain. "But I pray to you, Lord,
in the time of your favor; in your great love, O God, answer me with your sure salvation. Rescue me from the mire,
do not let me sink..." psalm 69: 13-14

My devo yesterday has kept me thinking from this quote and I just feel like I should share it: "Wherever God's finger points, His hand will clear a way." #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #futuremrs #livingtheceolife .
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#rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure  #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 
#lifestyle #lifestyleblog #blogger #blog #happiness
When you can't sleep, time with God is the best way to ease that pain. "But I pray to you, Lord, in the time of your favor; in your great love, O God, answer me with your sure salvation. Rescue me from the mire, do not let me sink..." psalm 69: 13-14 My devo yesterday has kept me thinking from this quote and I just feel like I should share it: "Wherever God's finger points, His hand will clear a way." #livingthechronicillnesslife  #livingthevow  #amnesiawontwin  #spoonie  #futuremrs  #livingtheceolife  . . . #rsd  #crps  #rsdcrps  #rsdcrpsawareness  #rsdcrps4acure  #eds  #ehlersdanlos  #ehlersdanlossyndrome  #edstype3  #lifestyle  #lifestyleblog  #blogger  #blog  #happiness 
I made it through the hole workout! 🏅 since I don’t own compression wear I thought I’d wear these tight runner pants for compression, until I find something. do you guys have any tips? want pants and/or a shirt in some kind of compression fabric for extra joint support on bad days. & yes, I’m a no-butt-person. #jointhypermobility #compressionwear #ehlersdanlos #hypermobilityspectrumdisorders #spoonie #chronicpain
This is what I sleep next to now instead of my husband. Oh and that ravenclaw dufflebag in the background? Full of meds. So full of meds it can barely zip. I don’t even remotely feel like a wife or mother right now. I am just a sick person. I still have three weeks of being non weight bearing. And using crutches is hard already, but even harder with POTS because I’m dizzy and that’s not what you want to be when using crutches. And now I’ve got a migraine coming on because I’ve been pathetically eating sugar literally everyday. So I’m even dizzier now thanks to the migraine. And my left hip is hurting so bad all the time now, because I’m relying so heavily on it. Getting up just to pee is exhausting. It’s completely exhausting. Just going to the bathroom makes me winded. Taking off my brace, getting to the bathroom, getting down and back up from the toilet, trying to balance while washing my hands, getting back to my room, putting the brace back on, and getting into bed. All while in pain, and dizzy and tachycardic thanks to POTS. I literally do *nothing* all day and I’m so, so exhausted. I hate this, I hate being stuck in this broken body. 
I’m sorry for being so negative. I don’t regret the surgery; I have SIGNIFICANTLY less pain in my op hip. But...it’s just hard. **I’m sharing this on Facebook too, not because I want pity (trust me, I don’t) but because I know a lot of people that aren’t on instagram care about me and my recovery. I haven’t wanted to post an update because there isn’t much to say. The reality is, this recovery is extremely tedious and is even further complicated by my genetic connective tissue disorder.
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#chronicillness #chronicpain #spoonie #ehlersdanlossyndrome #ehlersdanlos #connectivetissuedisorder #pots #posturalorthostatictachycardiasyndrome #dysautonomia #migraine #migraines #migraineur #labraltear #hiparthroscopy #hipsurgery
This is what I sleep next to now instead of my husband. Oh and that ravenclaw dufflebag in the background? Full of meds. So full of meds it can barely zip. I don’t even remotely feel like a wife or mother right now. I am just a sick person. I still have three weeks of being non weight bearing. And using crutches is hard already, but even harder with POTS because I’m dizzy and that’s not what you want to be when using crutches. And now I’ve got a migraine coming on because I’ve been pathetically eating sugar literally everyday. So I’m even dizzier now thanks to the migraine. And my left hip is hurting so bad all the time now, because I’m relying so heavily on it. Getting up just to pee is exhausting. It’s completely exhausting. Just going to the bathroom makes me winded. Taking off my brace, getting to the bathroom, getting down and back up from the toilet, trying to balance while washing my hands, getting back to my room, putting the brace back on, and getting into bed. All while in pain, and dizzy and tachycardic thanks to POTS. I literally do *nothing* all day and I’m so, so exhausted. I hate this, I hate being stuck in this broken body. I’m sorry for being so negative. I don’t regret the surgery; I have SIGNIFICANTLY less pain in my op hip. But...it’s just hard. **I’m sharing this on Facebook too, not because I want pity (trust me, I don’t) but because I know a lot of people that aren’t on instagram care about me and my recovery. I haven’t wanted to post an update because there isn’t much to say. The reality is, this recovery is extremely tedious and is even further complicated by my genetic connective tissue disorder. - - - #chronicillness  #chronicpain  #spoonie  #ehlersdanlossyndrome  #ehlersdanlos  #connectivetissuedisorder  #pots  #posturalorthostatictachycardiasyndrome  #dysautonomia  #migraine  #migraines  #migraineur  #labraltear  #hiparthroscopy  #hipsurgery 
BLISSED OUT... When your awesome housemate surprises you with a lady-date at the spa. So relaxed, it was the perfect day. Thank you @veejforvendetta 💙
#LA #LosAngeles #LALife #DTLA #LosAngeles_LA #California #DaySpa #Relaxation #SpaPalaceLA #Swimming
One more, because, moods.
(Experimenting with a drawing app while feeling suddenly awful.)
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#drawing #draw #drawings #art #digitalart #quickart
#ehlersdanlossyndrome #ehlersdanlos #EDS #zebrastrong #zebrawarrior #spoonielife #chronicillness #fibromyalgia #potssyndRome  #chronicpain #chronicfatiguesyndrome #chronicfatigue
Feeling really... off all of a sudden so lying down, experimenting with a drawing app.
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#drawing #draw #drawings #art #digitalart #quickart
#ehlersdanlossyndrome #ehlersdanlos #EDS #zebrastrong #zebrawarrior #spoonielife #chronicillness #fibromyalgia #potssyndRome  #chronicpain #chronicfatiguesyndrome #chronicfatigue
Just another regular day in what is now my life. Why now... Because in this exact same date last year I had a notion of what I might have but not a definite diagnosis like I do now, #ehlersdanlossyndrome 
And how long did that diagnosis took? 
Only 27 years... You see, when you are in a small country like mine (Costa Rica) #EhlersDanlos isn't something that you commonly hear as a diagnosis, actually the 1st recollection of it was from the lovely Martina from @eatyourkimchi and I felt bad for her because she is such a lovely and upbeat person like I consider myself, but my stupid head never connected the dots, my cousin had to that for me (I now blame that on brain fog lol). So on this #invisibledisabilitiesweek I decided to walk you to what is one of my common days... Starting off by my trusty heater, because even if I live in the tropics the slightest temperature change can send me into a terrible pain flare which happen last night, so I had to give myself a shot (and I'm starting to get a hang on those), follow by one of the 4 drs appointments I had this week, all of which I was join by Dazzle my pocket companion who is my reminder that I am not alone in this struggle, that like Martina said we have to #buildaladder each day and then to my trusty pill box. Those are the ones I'm currently using, but I have two drawers full of meds, ones that have work, some that haven't... The fact that I'm 85% allergic to all pain meds also makes pain management tricky. 
But each day I get up and do it all over again, and even if I have receive verbal abuse from medical staff at the ER or the specialist in my health system weren't helpful at all, when they dimished my pain simply because I choose to smile through the pain instead to scream to the top of my lungs; when my professors at university didn't believe I could get my grad school degree, look at me now I am just waiting for a final review from my advising comittee and to set a date to defend my thesis. 
Never let anyone set your boundaries, you know your own body better than anyone else, so you are the only one who knows where your limits are, you might as well prove them all wrong on your way up.
Just another regular day in what is now my life. Why now... Because in this exact same date last year I had a notion of what I might have but not a definite diagnosis like I do now, #ehlersdanlossyndrome  And how long did that diagnosis took? Only 27 years... You see, when you are in a small country like mine (Costa Rica) #EhlersDanlos  isn't something that you commonly hear as a diagnosis, actually the 1st recollection of it was from the lovely Martina from @eatyourkimchi and I felt bad for her because she is such a lovely and upbeat person like I consider myself, but my stupid head never connected the dots, my cousin had to that for me (I now blame that on brain fog lol). So on this #invisibledisabilitiesweek  I decided to walk you to what is one of my common days... Starting off by my trusty heater, because even if I live in the tropics the slightest temperature change can send me into a terrible pain flare which happen last night, so I had to give myself a shot (and I'm starting to get a hang on those), follow by one of the 4 drs appointments I had this week, all of which I was join by Dazzle my pocket companion who is my reminder that I am not alone in this struggle, that like Martina said we have to #buildaladder  each day and then to my trusty pill box. Those are the ones I'm currently using, but I have two drawers full of meds, ones that have work, some that haven't... The fact that I'm 85% allergic to all pain meds also makes pain management tricky. But each day I get up and do it all over again, and even if I have receive verbal abuse from medical staff at the ER or the specialist in my health system weren't helpful at all, when they dimished my pain simply because I choose to smile through the pain instead to scream to the top of my lungs; when my professors at university didn't believe I could get my grad school degree, look at me now I am just waiting for a final review from my advising comittee and to set a date to defend my thesis. Never let anyone set your boundaries, you know your own body better than anyone else, so you are the only one who knows where your limits are, you might as well prove them all wrong on your way up.
This evening I got to have a night out with friends, just like me, who suffer from Dysautonomia. If you didn't notice it, the Duke Energy Building in Uptown was light up in turquoise for us in honor of Dysautonomia Awareness Month. I'm blessed my condition is in a better state right now, but hearing everyone's stories reminded me how fragile life is, and how, just at the beginning of this year, I was fighting for my own life. Tonight reminded me how precious this life of mine is, and how blessed I am to hopefully become an influence for others who struggle with the same diagnoses. 🌎 #nevergiveup #dysautonomiastrong
This evening I got to have a night out with friends, just like me, who suffer from Dysautonomia. If you didn't notice it, the Duke Energy Building in Uptown was light up in turquoise for us in honor of Dysautonomia Awareness Month. I'm blessed my condition is in a better state right now, but hearing everyone's stories reminded me how fragile life is, and how, just at the beginning of this year, I was fighting for my own life. Tonight reminded me how precious this life of mine is, and how blessed I am to hopefully become an influence for others who struggle with the same diagnoses. 🌎 #nevergiveup  #dysautonomiastrong 
Today consisted of tears, in bed, with my heating pad. • It's been a "take your breath away" kind of pain day. • I emailed my GI & pelvic pain doc. We'll see what they have to say 😕
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Some days it's not about being strong. It's about letting everything out. Everything you're carrying on your shoulders. Everything you're going through. The pain that leaves you frozen during the day, and wide awake at night - today I tried to let it all out...
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#chronicpain #crohns #pelvicpain #ineedabreak #truth #mood #youarenotalone #keepgoing #ibd #survivor #spoonie #chronicallyill #crohnsdisease #migraine #autoimmunedisease #mentalhealth #eds #nocolonstillrollin #inflammatoryboweldisease #invisibleillness #ostomy #dysautonomia #mastcell #ehlersdanlos #potssyndrome #autoimmune #nevergiveup #invisibledisease #thestruggleisreal
Original:Google(tattoo)📷Edit/text:@crohns_spoonie
Today consisted of tears, in bed, with my heating pad. • It's been a "take your breath away" kind of pain day. • I emailed my GI & pelvic pain doc. We'll see what they have to say 😕 . Some days it's not about being strong. It's about letting everything out. Everything you're carrying on your shoulders. Everything you're going through. The pain that leaves you frozen during the day, and wide awake at night - today I tried to let it all out... . . . . . . . . . . . #chronicpain  #crohns  #pelvicpain  #ineedabreak  #truth  #mood  #youarenotalone  #keepgoing  #ibd  #survivor  #spoonie  #chronicallyill  #crohnsdisease  #migraine  #autoimmunedisease  #mentalhealth  #eds  #nocolonstillrollin  #inflammatoryboweldisease  #invisibleillness  #ostomy  #dysautonomia  #mastcell  #ehlersdanlos  #potssyndrome  #autoimmune  #nevergiveup  #invisibledisease  #thestruggleisreal  Original:Google(tattoo)📷Edit/text:@crohns_spoonie
We are hosting an online gallery to raise awareness and fund research to help all of us in need.

We need #teamDAF to share this link
Teamdaf.org 
Everywhere and anywhere so we can reach as broad a population as possible. Thank you!

#dysautonomiaawarenes#ehlersdanlossyndrome #mito #chronicillness #teamdaf #invisableillness #mastcell #mastcelldisease #gastroparesis  #sickofbeingsick  #sick #ehlersdanlos #potsie #potsies #potsy #pots #eds #tachycardia #lowbloodpressure #mitochondrialdisease #autonomicdysfunction #salty
We are hosting an online gallery to raise awareness and fund research to help all of us in need. We need #teamDAF  to share this link Teamdaf.org Everywhere and anywhere so we can reach as broad a population as possible. Thank you! #dysautonomiaawarenes #ehlersdanlossyndrome  #mito  #chronicillness  #teamdaf  #invisableillness  #mastcell  #mastcelldisease  #gastroparesis  #sickofbeingsick  #sick  #ehlersdanlos  #potsie  #potsies  #potsy  #pots  #eds  #tachycardia  #lowbloodpressure  #mitochondrialdisease  #autonomicdysfunction  #salty 
Except my tendons are more like spaghetti and the joint would not be aligned. #invisibleillness #ehlersdanlos #eds
#InvisibleDisabilityWeek 🔰

#tbt (MAÑANA ESPANOL) 🔰 💓Using pink because of the #internationalbreastcancerday ... That Day I was exhausted at the Hospital, it was a Hospital where nurses didn't have alcohol or gloves, can you imagine? 😟

I got a pretty serious infection on my tube site, they did a test to see what was going on, Itold the doctors "I have candidiasis, I've already had candidiasis so many times and I can recognize it in my body" -They said: No way, that's impossible, it most be a bacteria. -Ive insisted, they didn't listen. ✳️ They put me 60th dosages of antibiotics. 📛 Antibiotics can kill bad bacteria, but they also kill good bacteria (probiotics)‼️ I have chronic intestinal candidiasis. My immune system is naturally compromised. / At the 3th day of antibiotics I've started having high fever, but they still give me more antibiotics. 2 days after that I got SEPSIS, my fever was 43, I was having seizures, out of my mind, and barely survived.

Next day results came:

Baaaang‼️ I had candidiasis! No bacterias! Doctors came to my room worried telling the nurses I had to stop taking antibiotics. -Seriously? 😒

You see, I am a Zebra, you can't think in the easy answer because is almost sure it wouldn't be anything but the rarest answer. 
I'm sure they're good doctors for regular people. But I have Ehlers Danlos. And a bad mix of diseases that acts against the other. So please, if you're doctor, don't give up, there's a way, you just have to listen and keep trying as I do, and if you don't know, so help me to get to doctors that are specialized on Ehlers Danlos Syndrome. 👩‍🔬👩‍🎤🕵️‍♀️ #superarlensiú #mienfermedadinvisible 
#superarlensiu

#ehlersdanlossyndrome 
#invisibledisabilitiesweek

#invisiblenomore 
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#butyoudontlooksick

#invisibleillness 🌻#wecanmakeinvisibleillnessesvisible #dazzletogether #zebrastrong #edsawareness #invisibleillnessawareness #invisibledisability 
#ehlersdanlos #chronicpain #HSD #HEDS #CEDS #VEDA #hypermobility #ehlersdanlossyndromes
#InvisibleDisabilityWeek  🔰 #tbt  (MAÑANA ESPANOL) 🔰 💓Using pink because of the #internationalbreastcancerday  ... That Day I was exhausted at the Hospital, it was a Hospital where nurses didn't have alcohol or gloves, can you imagine? 😟 I got a pretty serious infection on my tube site, they did a test to see what was going on, Itold the doctors "I have candidiasis, I've already had candidiasis so many times and I can recognize it in my body" -They said: No way, that's impossible, it most be a bacteria. -Ive insisted, they didn't listen. ✳️ They put me 60th dosages of antibiotics. 📛 Antibiotics can kill bad bacteria, but they also kill good bacteria (probiotics)‼️ I have chronic intestinal candidiasis. My immune system is naturally compromised. / At the 3th day of antibiotics I've started having high fever, but they still give me more antibiotics. 2 days after that I got SEPSIS, my fever was 43, I was having seizures, out of my mind, and barely survived. Next day results came: Baaaang‼️ I had candidiasis! No bacterias! Doctors came to my room worried telling the nurses I had to stop taking antibiotics. -Seriously? 😒 You see, I am a Zebra, you can't think in the easy answer because is almost sure it wouldn't be anything but the rarest answer. I'm sure they're good doctors for regular people. But I have Ehlers Danlos. And a bad mix of diseases that acts against the other. So please, if you're doctor, don't give up, there's a way, you just have to listen and keep trying as I do, and if you don't know, so help me to get to doctors that are specialized on Ehlers Danlos Syndrome. 👩‍🔬👩‍🎤🕵️‍♀️ #superarlensiú  #mienfermedadinvisible  #superarlensiu  #ehlersdanlossyndrome  #invisibledisabilitiesweek  #invisiblenomore  _______________________________ #butyoudontlooksick  #invisibleillness  🌻#wecanmakeinvisibleillnessesvisible  #dazzletogether  #zebrastrong  #edsawareness  #invisibleillnessawareness  #invisibledisability  #ehlersdanlos  #chronicpain  #HSD  #HEDS  #CEDS  #VEDA  #hypermobility  #ehlersdanlossyndromes 
@Regranned from @littlemarchy246 -  I have been seeing the posts of all the people with invisible illnesses & they have lifted me up so I hope my post can help lift others up. 
I frequent the hospital, er, & doc offices. 
My belly is in constant pain & goes from severe intense bloating to normal size everyday. 
I break bones because my joints are too weak to hold me up & so I fall. 
The constant neuropathy in my arms & legs makes it almost impossible to walk most days & difficult to do things with my fingers (I can't play guitar anymore).
Hiking is now a hobby I love that has become something of the past.
Emergency surgeries are something I have started to go through in hopes to fix the problem (my appendectomy revealed a rare form of cancer on my appendix). I have usually at least 3 doctor appointments a week & have started doing therapy to try & heal the mind gut connection. 
I usually can't wear normal cute clothes because the pants or shorts squeeze my belly.
I rarely eat. & I take about 20 pills a day on good days. 
The center picture was just a few weeks ago at a wedding in cincinatti. I could barely walk through the city & my sweet boyfriend had to hold me up as we walked to our destinations. By the end of the day, I could barely use my legs. But on the outside, I looked fine. I look happy. I look like a "normal" girl. 
I am hesitant to get a handicap sticker because as my doctor said and as I know I will be judged when I get out of the car... The awareness of all the invisible illnesses out there is very small & I am only aware because I deal with it every minute of everyday. 
I have EDS, SIBO, IBS, leaky gut, heart burn, anxiety, migraines, and another currently undiagnosed auto immune disorder. I am also waiting to get into the GI doc to further investigate my belly. 
Everyday is a battle and everyday I chose to fight with the support of those around me. My doctors, family, friends, & boyfriend constantly lift me up & remind me that today is all I have so I need to live it. 
I am thankful for this week because it has shown me I'm not alone and I am grateful for that. 
#invisibledisabilitiesweek #eds #ehlersdanlos #ibs #sibo #autoimmunedisease #lwipain
@Regranned from @littlemarchy246 - I have been seeing the posts of all the people with invisible illnesses & they have lifted me up so I hope my post can help lift others up. I frequent the hospital, er, & doc offices. My belly is in constant pain & goes from severe intense bloating to normal size everyday. I break bones because my joints are too weak to hold me up & so I fall. The constant neuropathy in my arms & legs makes it almost impossible to walk most days & difficult to do things with my fingers (I can't play guitar anymore). Hiking is now a hobby I love that has become something of the past. Emergency surgeries are something I have started to go through in hopes to fix the problem (my appendectomy revealed a rare form of cancer on my appendix). I have usually at least 3 doctor appointments a week & have started doing therapy to try & heal the mind gut connection. I usually can't wear normal cute clothes because the pants or shorts squeeze my belly. I rarely eat. & I take about 20 pills a day on good days. The center picture was just a few weeks ago at a wedding in cincinatti. I could barely walk through the city & my sweet boyfriend had to hold me up as we walked to our destinations. By the end of the day, I could barely use my legs. But on the outside, I looked fine. I look happy. I look like a "normal" girl. I am hesitant to get a handicap sticker because as my doctor said and as I know I will be judged when I get out of the car... The awareness of all the invisible illnesses out there is very small & I am only aware because I deal with it every minute of everyday. I have EDS, SIBO, IBS, leaky gut, heart burn, anxiety, migraines, and another currently undiagnosed auto immune disorder. I am also waiting to get into the GI doc to further investigate my belly. Everyday is a battle and everyday I chose to fight with the support of those around me. My doctors, family, friends, & boyfriend constantly lift me up & remind me that today is all I have so I need to live it. I am thankful for this week because it has shown me I'm not alone and I am grateful for that. #invisibledisabilitiesweek  #eds  #ehlersdanlos  #ibs  #sibo  #autoimmunedisease  #lwipain 
36 hours and I get to do it all again!

#npcbikini #EDS #Ehlersdanlos
There's going to be very painful moments in life that will change your entire world in a matter of minutes. These moments will change YOU. Let them make you stronger, smarter, and kinder. But don't you go and become someone that you're not. Cry. Scream if you have to. Then you straighten  out your crown and keep on moving. #dysautonomiaawarenessmonth #dysautonomiastrong #turqouise #dissingdysautonomia #dysautonomiasucks #dysautonomia #pots #potsy #potsie #potssyndrome #posturalorthostatictachycardiasyndrome #eds #ehlersdanlos #ehlersdanloslife #ehlersdanlossyndrome #vascular #veds #zebra #mcad #mastcellactivationdisorder #allergies #lovemylevi #servicedog #servicedogintraining #godhasaplan #godisgood #wearyourcrown
There's going to be very painful moments in life that will change your entire world in a matter of minutes. These moments will change YOU. Let them make you stronger, smarter, and kinder. But don't you go and become someone that you're not. Cry. Scream if you have to. Then you straighten out your crown and keep on moving. #dysautonomiaawarenessmonth  #dysautonomiastrong  #turqouise  #dissingdysautonomia  #dysautonomiasucks  #dysautonomia  #pots  #potsy  #potsie  #potssyndrome  #posturalorthostatictachycardiasyndrome  #eds  #ehlersdanlos  #ehlersdanloslife  #ehlersdanlossyndrome  #vascular  #veds  #zebra  #mcad  #mastcellactivationdisorder  #allergies  #lovemylevi  #servicedog  #servicedogintraining  #godhasaplan  #godisgood  #wearyourcrown 
Day 18 and 19 of dysautonomia awareness month: Dysautonomia strong/ turquoise ribbon on a pumpkin. I can't have pumpkins at my house so decided to combine these two days in one post! Dysautonomia is so hard but having this lil man around makes me feel so much stronger! 💪🏻💙🌻 #dysautonomiaawarenessmonth #dysautonomiastrong #turqouise #dissingdysautonomia #dysautonomiasucks #dysautonomia #pots #potsy #potsie #potssyndrome #posturalorthostatictachycardiasyndrome #eds #ehlersdanlos #ehlersdanloslife #ehlersdanlossyndrome #vascular #veds #zebra #mcad #mastcellactivationdisorder #allergies #lovemylevi #servicedog #servicedogintraining #godhasaplan #godisgood #dysautonomiastrong
Day 18 and 19 of dysautonomia awareness month: Dysautonomia strong/ turquoise ribbon on a pumpkin. I can't have pumpkins at my house so decided to combine these two days in one post! Dysautonomia is so hard but having this lil man around makes me feel so much stronger! 💪🏻💙🌻 #dysautonomiaawarenessmonth  #dysautonomiastrong  #turqouise  #dissingdysautonomia  #dysautonomiasucks  #dysautonomia  #pots  #potsy  #potsie  #potssyndrome  #posturalorthostatictachycardiasyndrome  #eds  #ehlersdanlos  #ehlersdanloslife  #ehlersdanlossyndrome  #vascular  #veds  #zebra  #mcad  #mastcellactivationdisorder  #allergies  #lovemylevi  #servicedog  #servicedogintraining  #godhasaplan  #godisgood  #dysautonomiastrong 
Continuamos con nuestro #MesTurquesa y queremos que nos entienda que por un momento se coloquen en nuestros zapatos y vean la vida un poco como la ve un disautonomo porque solo porque ayer pude hacer algo, no significa que hoy lo pueda hacer, lo mas seguro y probablemente me cueste mucho ¿Por que? Porque no todos los días amanecemos con las mismas energias, con las misma capacidad de fuerza para poder hacer las cosas, no todos días para un disautonomo es igual porque así como tenemos días muy bueno tenemos días muy malos inclusive en un mismo día podemos empezar bien y terminar el día mal, nuestro cuerpo es como un sube y baja que a veces ni nosotros mismo a pesar de la sal, del liquido o del tratamiento que tegamos lo podemos controlar. Queremos que entiendan que no todo dolor viene con un cojeo u otra síntoma visible muchas veces nuestro compañero se hace invisible para el resto del mundo pero no para nosotros. Únete a nuestro mes de concientización 💙😉✌📚🏥🌎😀🙌💙
#POTS #EhlersDanlos #Disautonomia #Postural #Ortostatica #Sincope #Simpatico #Parasimpatico #Dysautonomia #Taquicardia #EnfermedadesRaras #Invisible #ActitudPositiva #SindromePOTS #EnfermedadInvisible #Sick #MiCompañeroFiel #VamosQueSiSePuede #Informate #Aceptación #SistemaNervioso #Corazon #Cerebro #IntoleranciaOrtostatica #SiguePersisteYLuchaPorVivir
#DisautonomiaEsLoQueTengoNoLoQueSoy #MesTurquesa
Continuamos con nuestro #MesTurquesa  y queremos que nos entienda que por un momento se coloquen en nuestros zapatos y vean la vida un poco como la ve un disautonomo porque solo porque ayer pude hacer algo, no significa que hoy lo pueda hacer, lo mas seguro y probablemente me cueste mucho ¿Por que? Porque no todos los días amanecemos con las mismas energias, con las misma capacidad de fuerza para poder hacer las cosas, no todos días para un disautonomo es igual porque así como tenemos días muy bueno tenemos días muy malos inclusive en un mismo día podemos empezar bien y terminar el día mal, nuestro cuerpo es como un sube y baja que a veces ni nosotros mismo a pesar de la sal, del liquido o del tratamiento que tegamos lo podemos controlar. Queremos que entiendan que no todo dolor viene con un cojeo u otra síntoma visible muchas veces nuestro compañero se hace invisible para el resto del mundo pero no para nosotros. Únete a nuestro mes de concientización 💙😉✌📚🏥🌎😀🙌💙 #POTS  #EhlersDanlos  #Disautonomia  #Postural  #Ortostatica  #Sincope  #Simpatico  #Parasimpatico  #Dysautonomia  #Taquicardia  #EnfermedadesRaras  #Invisible  #ActitudPositiva  #SindromePOTS  #EnfermedadInvisible  #Sick  #MiCompañeroFiel  #VamosQueSiSePuede  #Informate  #Aceptación  #SistemaNervioso  #Corazon  #Cerebro  #IntoleranciaOrtostatica  #SiguePersisteYLuchaPorVivir  #DisautonomiaEsLoQueTengoNoLoQueSoy  #MesTurquesa 
••Make this the best day of your life even if it feels like the worst••
••Make this the best day of your life even if it feels like the worst••
Today I was officially “discharged” from my post-surgical arm PT!!! I can’t believe how much has changed since after surgery... I remember just a month ago I still had significant numbness and weakness in my hand, now it’s almost completely back to normal, my strength is increasing every day, and my sensory perception is almost back to normal!!! My incision scar looks amazing for being two months out, and I can see how much better I’m going to feel on a month to month basis!!! I’m so thankful for finding such an amazing surgeon who worked with me through my whole surgical and post surgical experience, and for being so compassionate about my other health issues and struggles since operating on someone with EDS was new to him. 🤗
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#thoracicoutletsyndrome #throacicoutletsyndromesurgery #ribresection #transaxillaryribresection #postsurgey #discharged #ehlersdanlos #ehlersdanlossyndrome #eds #zebra #zebrastrong #rheumatoidarthritis #rheumatoiddisease #dysautonomia #autonomicdysfunction #chronicillness #invisibleillness #spoonie #spoonielife #spooniestrong #choosejoy #choosehappiness #thankful #thoracicsurgery #surgery #recovery #pt #physicaltherapy #healing #keeponkeepingon
Today I was officially “discharged” from my post-surgical arm PT!!! I can’t believe how much has changed since after surgery... I remember just a month ago I still had significant numbness and weakness in my hand, now it’s almost completely back to normal, my strength is increasing every day, and my sensory perception is almost back to normal!!! My incision scar looks amazing for being two months out, and I can see how much better I’m going to feel on a month to month basis!!! I’m so thankful for finding such an amazing surgeon who worked with me through my whole surgical and post surgical experience, and for being so compassionate about my other health issues and struggles since operating on someone with EDS was new to him. 🤗 . . #thoracicoutletsyndrome  #throacicoutletsyndromesurgery  #ribresection  #transaxillaryribresection  #postsurgey  #discharged  #ehlersdanlos  #ehlersdanlossyndrome  #eds  #zebra  #zebrastrong  #rheumatoidarthritis  #rheumatoiddisease  #dysautonomia  #autonomicdysfunction  #chronicillness  #invisibleillness  #spoonie  #spoonielife  #spooniestrong  #choosejoy  #choosehappiness  #thankful  #thoracicsurgery  #surgery  #recovery  #pt  #physicaltherapy  #healing  #keeponkeepingon 
"TUG" acrylic on canvas, 4'x4'  My newest painting inspired by my current struggle with cranial instability. #ehlersdanlos #abstractart #abstract #abstractpainting #contemporaryart #contemporarypainting #geometry #floating #galatic #saintlouisart #stlartist #spaceart #colorbomb #colorplay #adventure #explorecolor
#Repost @victonation with @repostapp
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Hey friends! We will be LIVE tonight at 8pm EST on Facebook (link in bio) with my friends at @backpackhealth for a demo of their helpful Health Management tools and Q&A session! 
I have personally been using these tools and NEED to share it with you. (Seriously, it makes managing chronic and complex illnesses so much easier)
I will *try* to stream it here on IG... but if not, head over to my Facebook page 🙂
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We will also be talking about the contest and posting the information after tonight’s live stream 🤗🎉
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#butyoudontlooksick #makinginvisibleillnessesvisible
#InvisibleIllness #InvisibleDisability #InvisibleIllnessAwarenessWeek #InvisibleDisabilitiesWeek 
#YoureTooYoungToBeSick #BeautyQueen #InvisibleIllness #Scars #chronicillness #raredisease #spoonie #ehlersdanlos #ehlersdanlossyndrome #chiari #tetheredcord #crps #dysautonomia #hypokalemicperiodicparalysis #chronicpain #medication #hospital #reality #advocate #fight #educate 
#InvisibleNoMore
#Repost  @victonation with @repostapp ・・・ Hey friends! We will be LIVE tonight at 8pm EST on Facebook (link in bio) with my friends at @backpackhealth for a demo of their helpful Health Management tools and Q&A session! I have personally been using these tools and NEED to share it with you. (Seriously, it makes managing chronic and complex illnesses so much easier) I will *try* to stream it here on IG... but if not, head over to my Facebook page 🙂 ••• We will also be talking about the contest and posting the information after tonight’s live stream 🤗🎉 ••• #butyoudontlooksick  #makinginvisibleillnessesvisible  #InvisibleIllness  #InvisibleDisability  #InvisibleIllnessAwarenessWeek  #InvisibleDisabilitiesWeek  #YoureTooYoungToBeSick  #BeautyQueen  #InvisibleIllness  #Scars  #chronicillness  #raredisease  #spoonie  #ehlersdanlos  #ehlersdanlossyndrome  #chiari  #tetheredcord  #crps  #dysautonomia  #hypokalemicperiodicparalysis  #chronicpain  #medication  #hospital  #reality  #advocate  #fight  #educate  #InvisibleNoMore 
Hey friends! We will be LIVE tonight at 8pm EST on Facebook (link in bio) with my friends at @backpackhealth for a demo of their helpful Health Management tools and Q&A session! 
I have personally been using these tools and NEED to share it with you. (Seriously, it makes managing chronic and complex illnesses so much easier)
I will *try* to stream it here on IG... but if not, head over to my Facebook page 🙂
•••
We will also be talking about the contest and posting the information after tonight’s live stream 🤗🎉
•••
#butyoudontlooksick #makinginvisibleillnessesvisible
#InvisibleIllness #InvisibleDisability #InvisibleIllnessAwarenessWeek #InvisibleDisabilitiesWeek 
#YoureTooYoungToBeSick #BeautyQueen #InvisibleIllness #Scars #chronicillness #raredisease #spoonie #ehlersdanlos #ehlersdanlossyndrome #chiari #tetheredcord #crps #dysautonomia #hypokalemicperiodicparalysis #chronicpain #medication #hospital #reality #advocate #fight #educate 
#InvisibleNoMore
Hey friends! We will be LIVE tonight at 8pm EST on Facebook (link in bio) with my friends at @backpackhealth for a demo of their helpful Health Management tools and Q&A session! I have personally been using these tools and NEED to share it with you. (Seriously, it makes managing chronic and complex illnesses so much easier) I will *try* to stream it here on IG... but if not, head over to my Facebook page 🙂 ••• We will also be talking about the contest and posting the information after tonight’s live stream 🤗🎉 ••• #butyoudontlooksick  #makinginvisibleillnessesvisible  #InvisibleIllness  #InvisibleDisability  #InvisibleIllnessAwarenessWeek  #InvisibleDisabilitiesWeek  #YoureTooYoungToBeSick  #BeautyQueen  #InvisibleIllness  #Scars  #chronicillness  #raredisease  #spoonie  #ehlersdanlos  #ehlersdanlossyndrome  #chiari  #tetheredcord  #crps  #dysautonomia  #hypokalemicperiodicparalysis  #chronicpain  #medication  #hospital  #reality  #advocate  #fight  #educate  #InvisibleNoMore 
October is Dysautonomia Awareness Month. Help spread the word 🖤#dysautonomia #POTS #potssyndrome #zebra #ehlersdanlos #chronicpain #EDS #MCAS
That's wath Ehlers Danlos Syndrome looks like ... Mistery bruises 😩😂 #invisibleillness #ehlersdanlossyndrome
#ehlersdanlos #sed #eds #raynaulds #mastcellactivationsyndrome  #invisibleillnessweek  #bruises #bruise
#Repost @victonation with @repostapp
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A massive THANK YOU to all who joined me for my first live stream during #InvisibleIllness & #InvisibleDisabilitiesWeek 🤗
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We are experiencing a few technical difficulties to announce the contest, so the details will be posted tomorrow!
••• Join me and @backpackhealth tomorrow at 8pm on Facebook @missfrostburg for a Live Demo and Q&A about their Health Management tools!
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To recap our stream: please be sure to follow @thezebranetwork and become a free member on our website - follow @backpackhealth in preparation for our event tomorrow - register with www.oneEDSvoice.com for EDS resources - and be sure to get me all of your “I have an Invisible Illness” photos in by tomorrow AM! 
Always, send me any questions, comments, and cares ❤️ Thank you all for the support, I love you! 
Happy Invisible Illness and Disabilities Week! Be proud of who you are!
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#butyoudontlooksick #makinginvisibleillnessesvisible
#InvisibleIllness #InvisibleDisability #InvisibleIllnessAwarenessWeek #InvisibleDisabilitiesWeek 
#YoureTooYoungToBeSick #BeautyQueen #InvisibleIllness #Scars #chronicillness #raredisease #spoonie #ehlersdanlos #ehlersdanlossyndrome #chiari #tetheredcord #crps #dysautonomia #hypokalemicperiodicparalysis #chronicpain #medication #hospital #reality #advocate #fight #educate 
#InvisibleNoMore
#Repost  @victonation with @repostapp ・・・ A massive THANK YOU to all who joined me for my first live stream during #InvisibleIllness  & #InvisibleDisabilitiesWeek  🤗 ••• We are experiencing a few technical difficulties to announce the contest, so the details will be posted tomorrow! ••• Join me and @backpackhealth tomorrow at 8pm on Facebook @missfrostburg for a Live Demo and Q&A about their Health Management tools! ••• To recap our stream: please be sure to follow @thezebranetwork and become a free member on our website - follow @backpackhealth in preparation for our event tomorrow - register with www.oneEDSvoice.com for EDS resources - and be sure to get me all of your “I have an Invisible Illness” photos in by tomorrow AM! Always, send me any questions, comments, and cares ❤️ Thank you all for the support, I love you! Happy Invisible Illness and Disabilities Week! Be proud of who you are! • • • #butyoudontlooksick  #makinginvisibleillnessesvisible  #InvisibleIllness  #InvisibleDisability  #InvisibleIllnessAwarenessWeek  #InvisibleDisabilitiesWeek  #YoureTooYoungToBeSick  #BeautyQueen  #InvisibleIllness  #Scars  #chronicillness  #raredisease  #spoonie  #ehlersdanlos  #ehlersdanlossyndrome  #chiari  #tetheredcord  #crps  #dysautonomia  #hypokalemicperiodicparalysis  #chronicpain  #medication  #hospital  #reality  #advocate  #fight  #educate  #InvisibleNoMore 
I am fighting for a diagnosis since a full year now. I know many people are fighting since longer but it's just so exhausting to know exactly what you have and so does your doctors and yet not have an official diagnosis that would help you everyday...
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#ehlersdanlossyndrome #ehlersdanlos #chronicpain #chronicillness #eds #spoonie #spooniestrong #edszebra
#Repost @jeannie_di with @repostapp
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Experiencing a disability that others don't realise is there can be isolating - people often don't realise that just because you don't 'seem ill', it doesn't mean that your pain or struggle isn't real. We need to show compassion for those with #invisibledisabilities and spread the message that no-one is alone and that the right support is out there.
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#health #invisibleillnessawareness #invisibledisabilitiesweek #zebrastrong #eds #hypermobility #well #chronicpain #pain #pilates #wellbeing #empathy #love #kindnessmatters #edsawareness #eds #ehlersdanlossyndrome #ehlersdanlos
#Repost  @jeannie_di with @repostapp ・・・ Experiencing a disability that others don't realise is there can be isolating - people often don't realise that just because you don't 'seem ill', it doesn't mean that your pain or struggle isn't real. We need to show compassion for those with #invisibledisabilities  and spread the message that no-one is alone and that the right support is out there. . . #health  #invisibleillnessawareness  #invisibledisabilitiesweek  #zebrastrong  #eds  #hypermobility  #well  #chronicpain  #pain  #pilates  #wellbeing  #empathy  #love  #kindnessmatters  #edsawareness  #eds  #ehlersdanlossyndrome  #ehlersdanlos 
Passing time during my 4th IVIg infusion ... coloring & dreaming of #food... #EhlersDanlos #hEDS #dysautonomia #dysautonomiaawarenessmonth #POTS #CIDP #MCAD #MCAS #health #coloringbook