#eds

348,238 posts

#throwbackthursday on Sunday to November when I saw #wickedthemusical for the fifth time on my sisters birthday. For weeks before this all I could do was hope and pray that I would be well enough to go and I was!  Shoutout to @watercolor_me_impressed for inspiring me to push through symptoms I thought I couldn’t! It was one of the best performances of Wicked that I’d ever seen (shout out to @jackieburnsnyc and @karalindsay1 for being the best Elphaba and Glinda duo to grace the @sandiegocivictheatre). Thing about this photo is what you can’t see. Out of frame is my rollator, my braced knee, and my super sexy massive sneakers with custom orthotics, and of course the pain and fatigue that are omnipresent. Before the show we had to change seats to accessible seating because I had stubbornly insisted I could manage the stairs; but day of there was just no way I could. And you know what? That’s okay! Thankfully they were accommodating, and I learned my lesson. In the end it was an amazing day, I had a great time with my sister, and I had the pride of having accomplished such an amazing goal!

#throwbackthursday on Sunday to November when I saw #wickedthemusical for the fifth time on my sisters birthday. For weeks before this all I could do was hope and pray that I would be well enough to go and I was! Shoutout to @watercolor_me_impressed for inspiring me to push through symptoms I thought I couldn’t! It was one of the best performances of Wicked that I’d ever seen (shout out to @jackieburnsnyc and @karalindsay1 for being the best Elphaba and Glinda duo to grace the @sandiegocivictheatre ). Thing about this photo is what you can’t see. Out of frame is my rollator, my braced knee, and my super sexy massive sneakers with custom orthotics, and of course the pain and fatigue that are omnipresent. Before the show we had to change seats to accessible seating because I had stubbornly insisted I could manage the stairs; but day of there was just no way I could. And you know what? That’s okay! Thankfully they were accommodating, and I learned my lesson. In the end it was an amazing day, I had a great time with my sister, and I had the pride of having accomplished such an amazing goal! - 1 hour ago

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#Repost @mypainiq

IG #takeover time! This Tuesday, join me as I take over the @wegohealth instagram page. I'll be sharing my day in order to give a glimpse into what it's like living as a patient with #chronicillness while working part time and being a patient advocate.
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I'll be sharing:
💥my daily exercise routine to help with my #EDS
💥my vitamins/supplements list that I feel has helped me on my #recovery journey
💥what I do to manage/deal with medical bills
💥the planning that goes into an out of area doctor appointment 💥getting prepared for an upcoming #medical procedure 💥what online advocacy work looks like
💥how I am raising awareness of #chronicpain and rare diseases like #EhlersDanlosSyndrome, #spinalCSFleak, and #dysautonomia
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What can I share during the #IGtakeover to help you on your journey with chronic illness? 
Let me know in the comments! 👇🏽👇🏽👇🏽
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P.S. - please feel free to share this post or tag a friend below who you think might benefit from the info I'll be sharing!
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#patientadvocate #sickgirlsclub #chronicloveclub #spoonie #spooniesisterhood #MyPainIQ

#Repost @mypainiq IG #takeover time! This Tuesday, join me as I take over the @wegohealth instagram page. I'll be sharing my day in order to give a glimpse into what it's like living as a patient with #chronicillness while working part time and being a patient advocate. . . . I'll be sharing: my daily exercise routine to help with my #EDS my vitamins/supplements list that I feel has helped me on my #recovery journey what I do to manage/deal with medical bills the planning that goes into an out of area doctor appointment getting prepared for an upcoming #medical procedure what online advocacy work looks like how I am raising awareness of #chronicpain and rare diseases like #EhlersDanlosSyndrome , #spinalCSFleak , and #dysautonomia . . . What can I share during the #IGtakeover to help you on your journey with chronic illness? Let me know in the comments! 🏽🏽🏽 . . . P.S. - please feel free to share this post or tag a friend below who you think might benefit from the info I'll be sharing! . . . #patientadvocate #sickgirlsclub #chronicloveclub #spoonie #spooniesisterhood #MyPainIQ - 1 hour ago

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Thankful for another donation for my Myintent creations... One stepcloser and our fundraising efforts to be able to purchase an all-terrain wheelchair for scouting. (This is a picture of me at Scout camp this past summer.)
Https://helpscoutsaccessoutdoorscoutingprograms.com  #myIntent #spoonies #bsa #scouting #myastheniagravis #eds #adaptivesports

Thankful for another donation for my Myintent creations... One stepcloser and our fundraising efforts to be able to purchase an all-terrain wheelchair for scouting. (This is a picture of me at Scout camp this past summer.) Https://helpscoutsaccessoutdoorscoutingprograms.com #myIntent #spoonies #bsa #scouting #myastheniagravis #eds #adaptivesports - 1 hour ago

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My face has calmed down SIGNIFICANTLY since I’ve been wearing the boa constrictor blow up brace at night. The right side is not swollen anymore, and the redness and fiery burning are very under control. Seeing the neurologist on Tuesday to discuss why the head traction resolves my breathing issues, my face, and my swallowing. I felt good all day.  Really good. Just a little ghost touch action on my ear. Putting my head in a vice and crashing out. I think I’m really on the verge of a major breakthrough. #ehlersdanlos #ehlersdanlossyndrome #eds #sickgirlsclub #chronicallybunny #craniocervicalinstability #cci #dysautonomia #pots #cranialnerves #nervecompression #possiblechiari

My face has calmed down SIGNIFICANTLY since I’ve been wearing the boa constrictor blow up brace at night. The right side is not swollen anymore, and the redness and fiery burning are very under control. Seeing the neurologist on Tuesday to discuss why the head traction resolves my breathing issues, my face, and my swallowing. I felt good all day. Really good. Just a little ghost touch action on my ear. Putting my head in a vice and crashing out. I think I’m really on the verge of a major breakthrough. #ehlersdanlos #ehlersdanlossyndrome #eds #sickgirlsclub #chronicallybunny #craniocervicalinstability #cci #dysautonomia #pots #cranialnerves #nervecompression #possiblechiari - 1 hour ago

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One of my best friends brought me to @sephoratownsquare yesterday to pick out makeup for a party I was going to, and offered to watch my kids at the park there, so I could shop without added #anxiety.
Spending money on myself can be difficult, but I also have good taste in *stuff*.🤣
Then she curled my hair for me! Which is difficult for me to do like a normal person. Plus I had #subluxed my shoulder blade adjusting my own bra strap.😑
This foundation is awesome though! I finally found one that works for me.  She's the same friend who helped me cut about 12" off my hair a few months ago, when I realized I just couldn't keep up with maintaining it anymore. She hosted a slumber party at her house.
THEN she gave me a ride to his work, so we could head straight to the party we were already late for from there, AND stopped at a dispensary on the way when we realized I had left my medicine bag at home earlier.
She's such a loving person. I feel so blessed to have her in my life.💗 Not to be corny, but #BLESSED ♡ #Datenight #LasVegasMmj #medicalmarijuana #prerollconvenience #EDS #ehlersdanlossyndrome #selfcare

One of my best friends brought me to @sephoratownsquare yesterday to pick out makeup for a party I was going to, and offered to watch my kids at the park there, so I could shop without added #anxiety . Spending money on myself can be difficult, but I also have good taste in *stuff*.🤣 Then she curled my hair for me! Which is difficult for me to do like a normal person. Plus I had #subluxed my shoulder blade adjusting my own bra strap.😑 This foundation is awesome though! I finally found one that works for me. She's the same friend who helped me cut about 12" off my hair a few months ago, when I realized I just couldn't keep up with maintaining it anymore. She hosted a slumber party at her house. THEN she gave me a ride to his work, so we could head straight to the party we were already late for from there, AND stopped at a dispensary on the way when we realized I had left my medicine bag at home earlier. She's such a loving person. I feel so blessed to have her in my life. Not to be corny, but #BLESSED#Datenight #LasVegasMmj #medicalmarijuana #prerollconvenience #EDS #ehlersdanlossyndrome #selfcare - 2 hours ago

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Win or lose, the Chiefs are still champions in my heart! ❤💛❤💛 #sheltie #servicedog #crohns #eds #pots #migraine #kansascity #kc #chiefskingdom #chiefs

Win or lose, the Chiefs are still champions in my heart! #sheltie #servicedog #crohns #eds #pots #migraine #kansascity #kc #chiefskingdom #chiefs - 2 hours ago

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so excited that my “honey” shirt from hyalya came in the mail today!! 🖤 use my promo code ErinL15 to get 15% off your purchase at https://hyalyashop.com/ (like also in bio) -
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📸: myself 
@eatonvilledancestudio 
@hyalyateam 
@hyalyafashion 
@hyalyaambassadors -
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#like #explore #dancer #hyalyaambassador #hyalya #honey #miniphotoshoot #eds #eatonvilledancestudio #linkinbio👆🏼-
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follow me!! 💗 (link in bio)

so excited that my “honey” shirt from hyalya came in the mail today!! 🖤 use my promo code ErinL15 to get 15% off your purchase at https://hyalyashop.com/ (like also in bio) - • • • 📸: myself @eatonvilledancestudio @hyalyateam @hyalyafashion @hyalyaambassadors - • • • #like #explore #dancer #hyalyaambassador #hyalya #honey #miniphotoshoot #eds #eatonvilledancestudio #linkinbio 🏼- • • • follow me!! (link in bio) - 2 hours ago

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#Repost @onoffchronics
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#chronicpain #chronicpainwarrior #chronicillness #chronicillnesswarrior #autoimmunedisease #autoimmunewarrior #spoonie #arthritis #juvenilearthritis #rheumatoidarthritis #rawarrior #lupus #sjogrens #chrons #lymedisease #fibromyalgia #pots #pcos #eds #ibs #ulcerativecolitis #multiplesclerosis #dysautonomia #endometriosis #endowarrior #dailymemes #motivation #weekendvibes

#Repost @onoffchronics • • • • • . . . #chronicpain #chronicpainwarrior #chronicillness #chronicillnesswarrior #autoimmunedisease #autoimmunewarrior #spoonie #arthritis #juvenilearthritis #rheumatoidarthritis #rawarrior #lupus #sjogrens #chrons #lymedisease #fibromyalgia #pots #pcos #eds #ibs #ulcerativecolitis #multiplesclerosis #dysautonomia #endometriosis #endowarrior #dailymemes #motivation #weekendvibes - 2 hours ago

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With confidence @charlotteamylouise
#TheBodiesofWomen
#itsmybodypic

Reposted from @charlotteamylouise -  LOOK, MY THIGHS TOUCH. Is this something to be disgusted at? Or is this just 100% normal and healthy? •
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What about the second picture? Is that better? Seeing them far apart? Even though I’m also standing with my feet far apart from each other? I think having my thighs touch was the most difficult challenge I faced when I put on more weight after surgery - it was always my trigger. I used to aspire to have a thigh gap. But NO MORE. These thighs used to be so strong that I could sprint fast as much as I liked and I could play the sport I loved. I lost all the muscle and I still haven’t quite gotten it all back. That doesn’t mean that they’re not strong anymore though. •
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They help me walk, run, dance, jump, skip and I finally have the energy to do all those things and more! I used to hate how they jiggled when I moved but I absolutely love it now. It just makes feel more human and alive. We’re not supposed to look like those mannequins in the shops. We’re not supposed to look like Barbie. They’re not even real human beings so how can we look like them and compare ourselves to them?! (Same goes for photoshopped women.) We’re all people and people all come in different shapes and sizes, which is what makes us all so unique. ❤️ •
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As well as this, your worth is never defined by how you look anyway. There’s so much more to being human than that - which is why I’m so glad I’m not a damn mannequin! 😂 (I know some people have thigh gaps naturally due to the bone structure of the hips - all I am saying is that you shouldn’t punish yourself in order to obtain something that isn’t natural to YOU 💕) •
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#ehlersdanlossyndrome
#eds #stoma #ileostomy #ostomy #ostomyawareness #chronicillness #ostomate #invisibledisability #awareness #TheBodiesOfWomen #bodypositivity #bodyconfidence #loveyourbody #effyourbeautystandards #LoveAnyBODY #everyBODY #embraceyourbody #selflove #selfconfidence #mentalhealth #positivity #diversity #empowerment #iammorethan #iamallwomxn  #rawbeautytalks #realstagram

With confidence @charlotteamylouise #TheBodiesofWomen #itsmybodypic Reposted from @charlotteamylouise - LOOK, MY THIGHS TOUCH. Is this something to be disgusted at? Or is this just 100% normal and healthy? • • What about the second picture? Is that better? Seeing them far apart? Even though I’m also standing with my feet far apart from each other? I think having my thighs touch was the most difficult challenge I faced when I put on more weight after surgery - it was always my trigger. I used to aspire to have a thigh gap. But NO MORE. These thighs used to be so strong that I could sprint fast as much as I liked and I could play the sport I loved. I lost all the muscle and I still haven’t quite gotten it all back. That doesn’t mean that they’re not strong anymore though. • • They help me walk, run, dance, jump, skip and I finally have the energy to do all those things and more! I used to hate how they jiggled when I moved but I absolutely love it now. It just makes feel more human and alive. We’re not supposed to look like those mannequins in the shops. We’re not supposed to look like Barbie. They’re not even real human beings so how can we look like them and compare ourselves to them?! (Same goes for photoshopped women.) We’re all people and people all come in different shapes and sizes, which is what makes us all so unique. ️ • • As well as this, your worth is never defined by how you look anyway. There’s so much more to being human than that - which is why I’m so glad I’m not a damn mannequin! (I know some people have thigh gaps naturally due to the bone structure of the hips - all I am saying is that you shouldn’t punish yourself in order to obtain something that isn’t natural to YOU ) • • • • • • #ehlersdanlossyndrome #eds #stoma #ileostomy #ostomy #ostomyawareness #chronicillness #ostomate #invisibledisability #awareness #TheBodiesOfWomen #bodypositivity #bodyconfidence #loveyourbody #effyourbeautystandards #LoveAnyBODY #everyBODY #embraceyourbody #selflove #selfconfidence #mentalhealth #positivity #diversity #empowerment #iammorethan #iamallwomxn #rawbeautytalks #realstagram - 2 hours ago

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I’m an incredibly lucky person to have friends to throw me a won-my-disability-hearing-party filled with all the things I love, including these beautiful people 💜

I’m an incredibly lucky person to have friends to throw me a won-my-disability-hearing-party filled with all the things I love, including these beautiful people - 2 hours ago

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Surround yourself by other #badasses who #inspire you, #support you on your #journey, and #cheer you on by sharing their #truths. If anyone wants to know why I’m working my #ass off to be a #betterbadass, THIS is why. It’s time to fully #LISTEN to my body AND freaking follow through!! Love you @linzyross!!! 💜😘 #worthit #happeningformenottome #teambadass🥄☠️
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#wellnesswarrior #spoonie #autoimmunedisease #inflammatoryboweldisease #ibdwarrior #ulcerativecolitis #jpouch #chronicpain #chronicpainwarrior #depression #anxiety #migraines #nocolonstillrollin #dysautonomia #POTS #EDS #mentalhealth #patientadvocate

Surround yourself by other #badasses who #inspire you, #support you on your #journey , and #cheer you on by sharing their #truths . If anyone wants to know why I’m working my #ass off to be a #betterbadass , THIS is why. It’s time to fully #LISTEN to my body AND freaking follow through!! Love you @linzyross !!! #worthit #happeningformenottome #teambadass 🥄☠️ . . . . . . . . #wellnesswarrior #spoonie #autoimmunedisease #inflammatoryboweldisease #ibdwarrior #ulcerativecolitis #jpouch #chronicpain #chronicpainwarrior #depression #anxiety #migraines #nocolonstillrollin #dysautonomia #POTS #EDS #mentalhealth #patientadvocate - 2 hours ago

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to the able bodied people who use the one and only handicap accessible stall-⁣⁣
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this is NOT a luxury item. ⁣
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this stall was NOT put there so you could check social media, text your friends, play music, or poop in peace while the shower noise drowns out your business. ⁣⁣
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you may not realize it but so many people count on this stall for their safety.⁣⁣
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and i get it. it’s spacious, has a toilet within and has an adjustable shower head- but these are things that a person with a disability (invisible/ visible) needs for easier and safe access. ⁣⁣
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as a disabled person, i don’t use this stall because i just “like it”. i use it for the extra space for my wheelchair and service dog. i use the grab handles to hoist myself up and remain balanced. i use the bench within the shower to keep myself from passing out. i use the shower head to be able to clean myself the way anyone else would. for me this stall is not an option. it’s is a necessity. ⁣⁣
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please keep this in mind the next time you go for the accessible stall when others are open, because you never know who you’re taking it away from. and also never judge someone for walking out of a handicap stall, yes maybe they shouldn’t have used it, but there could also be a very legitimate reason for them to need it. ⁣⁣
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if you don’t need it, don’t use it!! ♿️⁣⁣

to the able bodied people who use the one and only handicap accessible stall-⁣⁣ ⁣⁣ this is NOT a luxury item. ⁣ ⁣⁣ this stall was NOT put there so you could check social media, text your friends, play music, or poop in peace while the shower noise drowns out your business. ⁣⁣ ⁣⁣ you may not realize it but so many people count on this stall for their safety.⁣⁣ ⁣⁣ and i get it. it’s spacious, has a toilet within and has an adjustable shower head- but these are things that a person with a disability (invisible/ visible) needs for easier and safe access. ⁣⁣ ⁣⁣ as a disabled person, i don’t use this stall because i just “like it”. i use it for the extra space for my wheelchair and service dog. i use the grab handles to hoist myself up and remain balanced. i use the bench within the shower to keep myself from passing out. i use the shower head to be able to clean myself the way anyone else would. for me this stall is not an option. it’s is a necessity. ⁣⁣ ⁣⁣ please keep this in mind the next time you go for the accessible stall when others are open, because you never know who you’re taking it away from. and also never judge someone for walking out of a handicap stall, yes maybe they shouldn’t have used it, but there could also be a very legitimate reason for them to need it. ⁣⁣ ⁣⁣ if you don’t need it, don’t use it!! ️⁣⁣ - 2 hours ago

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We are building community by expanding our resources for students with disabilities and health conditions. Connecting not only with GOH Academic Advisors but also with your peers, incredible young adults paving their educational journeys, is a cornerstone of our philosophy of inclusion and empowerment. .
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Enter, Guardian GoTo! As a member of the Guardian GoTo Group, you will belong to a community of others providing peer to peer support, camaraderie, empathy, friendship and troubleshooting. With your membership, you'll sign up to give and receive encouragement, empower yourself and others, all from the comfort of your home at your own discretion. Whether or not you choose to interact with others is entirely based upon your own decisions. We will simply provide the opportunity to connect via a confidential contact list shared only amongst GoTos! .
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Also: Guardian GoTos will be encouraged to share, swap and recycle mobility aids and assistive tools you are no longer using.

Grow your circle of friends, give and receive support, gain access to gently used mobility aids and more!  This is a no cost opportunity! To join or for more information, send us a message or email! .
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GoTo community, GoTo Guardian! ⭐️ #gotoguardians

We are building community by expanding our resources for students with disabilities and health conditions. Connecting not only with GOH Academic Advisors but also with your peers, incredible young adults paving their educational journeys, is a cornerstone of our philosophy of inclusion and empowerment. . . . Enter, Guardian GoTo! As a member of the Guardian GoTo Group, you will belong to a community of others providing peer to peer support, camaraderie, empathy, friendship and troubleshooting. With your membership, you'll sign up to give and receive encouragement, empower yourself and others, all from the comfort of your home at your own discretion. Whether or not you choose to interact with others is entirely based upon your own decisions. We will simply provide the opportunity to connect via a confidential contact list shared only amongst GoTos! . . . Also: Guardian GoTos will be encouraged to share, swap and recycle mobility aids and assistive tools you are no longer using. Grow your circle of friends, give and receive support, gain access to gently used mobility aids and more! This is a no cost opportunity! To join or for more information, send us a message or email! . . . GoTo community, GoTo Guardian! #gotoguardians - 2 hours ago

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My life is chaos, but I have great friends and great cats in it.
First pic, Alexx
Second pic, Bear 
#catsofinstagram #cats #pnw #pdx #asd #spd #autie #eds #blackcat

My life is chaos, but I have great friends and great cats in it. First pic, Alexx Second pic, Bear #catsofinstagram #cats #pnw #pdx #asd #spd #autie #eds #blackcat - 2 hours ago

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Edition by @okirafaelp 
#edsheeran #eds #okirafaelp

Edition by @okirafaelp #edsheeran #eds #okirafaelp - 2 hours ago

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#cannadifyi💯💚 Salute! Happy #SundayFunDay 
although this looks like fun, I am actually doing some serious medicating so I can go and eat. #eds #ms #Dysautonomia #ddd
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[You must turn your vehicle off and if you have keys they must be out of the ignition. #OMMP #ComplianceCases 
never drive under the influence of any substance. Be a safe and responsible stoner. Set the example #SmartStoners #SexyStoners ....
I am #Dabbing #DabNectarCollector #THC
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Have a great safe Sunday everybody.
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Stay medicated and first to no harm with all natural not addicted #Cannabis

#cannadifyi Salute! Happy #SundayFunDay although this looks like fun, I am actually doing some serious medicating so I can go and eat. #eds #ms #Dysautonomia #ddd ... [You must turn your vehicle off and if you have keys they must be out of the ignition. #OMMP #ComplianceCases never drive under the influence of any substance. Be a safe and responsible stoner. Set the example #SmartStoners #SexyStoners .... I am #Dabbing #DabNectarCollector #THC ... Have a great safe Sunday everybody. ... Stay medicated and first to no harm with all natural not addicted #Cannabis - 2 hours ago

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#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive
Xx #perfect #1#3#2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp

#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive Xx #perfect #1 #3 #2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp - 2 hours ago

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#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive
Xx #perfect #1#3#2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp

#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive Xx #perfect #1 #3 #2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp - 2 hours ago

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#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive
Xx #perfect #1#3#2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp

#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive Xx #perfect #1 #3 #2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp - 2 hours ago

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#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive
Xx #perfect #1#3#2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp

#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive Xx #perfect #1 #3 #2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp - 2 hours ago

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#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive
Xx #perfect #1#3#2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp

#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive Xx #perfect #1 #3 #2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp - 2 hours ago

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#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive
Xx #perfect #1#3#2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp

#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive Xx #perfect #1 #3 #2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp - 2 hours ago

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#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive
Xx #perfect #1#3#2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp

#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive Xx #perfect #1 #3 #2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp - 2 hours ago

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#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive
Xx #perfect #1#3#2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp

#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive Xx #perfect #1 #3 #2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp - 2 hours ago

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#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive
Xx #perfect #1#3#2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp

#edsheeran #edsheeranconcert #edsheeranphotograph #edsheeranindonesia #edsheeranfans #edsheeranlive #edsheeranlive Xx #perfect #1 #3 #2 #youneedmeidontneedyou #edsheeranperfect #edsheeran #eds #edshareen #edsheran #edsheerancover #okirafaelp - 2 hours ago

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IG #takeover time! This Tuesday, join me as I take over the @wegohealth instagram page. I'll be sharing my day in order to give a glimpse into what it's like living as a patient with #chronicillness while working part time and being a patient advocate.
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I'll be sharing:
💥my daily exercise routine to help with my #EDS
💥my vitamins/supplements list that I feel has helped me on my #recovery journey
💥what I do to manage/deal with medical bills
💥the planning that goes into an out of area doctor appointment 💥getting prepared for an upcoming #medical procedure 💥what online advocacy work looks like
💥how I am raising awareness of #chronicpain and rare diseases like #EhlersDanlosSyndrome, #spinalCSFleak, and #dysautonomia
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What can I share during the #IGtakeover to help you on your journey with chronic illness? 
Let me know in the comments! 👇🏽👇🏽👇🏽
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P.S. - please feel free to share this post or tag a friend below who you think might benefit from the info I'll be sharing!
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#patientadvocate #sickgirlsclub #chronicloveclub #spoonie #spooniesisterhood #MyPainIQ

IG #takeover time! This Tuesday, join me as I take over the @wegohealth instagram page. I'll be sharing my day in order to give a glimpse into what it's like living as a patient with #chronicillness while working part time and being a patient advocate. . . . I'll be sharing: my daily exercise routine to help with my #EDS my vitamins/supplements list that I feel has helped me on my #recovery journey what I do to manage/deal with medical bills the planning that goes into an out of area doctor appointment getting prepared for an upcoming #medical procedure what online advocacy work looks like how I am raising awareness of #chronicpain and rare diseases like #EhlersDanlosSyndrome , #spinalCSFleak , and #dysautonomia . . . What can I share during the #IGtakeover to help you on your journey with chronic illness? Let me know in the comments! 🏽🏽🏽 . . . P.S. - please feel free to share this post or tag a friend below who you think might benefit from the info I'll be sharing! . . . #patientadvocate #sickgirlsclub #chronicloveclub #spoonie #spooniesisterhood #MyPainIQ - 2 hours ago

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3 hours ago

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Me and Christine, my crystal cane. ✨Still getting used to going out in public & presenting on stage with her. If you don't know, I suffer from a chronic illness called #ElhersDanlosSyndrome which causes debilitating symptoms that make it hard for me to live. Accommodation had to be made in order for me to continue walking & standing for sny ammount of time outside my home. 📸 @schuylarshaynephotography 
#burlesque #burlesquehost #emcee #femcee #disabled #eds #chronicpain #chronicillness #leopardprint #cane #nosetotherhinestone

Me and Christine, my crystal cane. Still getting used to going out in public & presenting on stage with her. If you don't know, I suffer from a chronic illness called #ElhersDanlosSyndrome which causes debilitating symptoms that make it hard for me to live. Accommodation had to be made in order for me to continue walking & standing for sny ammount of time outside my home. 📸 @schuylarshaynephotography #burlesque #burlesquehost #emcee #femcee #disabled #eds #chronicpain #chronicillness #leopardprint #cane #nosetotherhinestone - 3 hours ago

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#anorexia #anorexianerviosa #bulimia #eatingdisorders #eds

#anorexia #anorexianerviosa #bulimia #eatingdisorders #eds - 3 hours ago

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*laughs so hard I throw out my back*
#spoonieproblems #chronicallyill #eds #lupus #mentalillness #fibromyalgiaawareness #mentalhealth #chronicpain #chronicillness #cfs #ibs #spoonie #muscles #backpain #memes #sickness #fibrowarrior #disabled #disability #invisibleillness #spoons #condition #brainfog #fibrowarrior #potssyndrome #pots #cfsme #multiplesclerosis #ms #endometriosis

*laughs so hard I throw out my back* #spoonieproblems #chronicallyill #eds #lupus #mentalillness #fibromyalgiaawareness #mentalhealth #chronicpain #chronicillness #cfs #ibs #spoonie #muscles #backpain #memes #sickness #fibrowarrior #disabled #disability #invisibleillness #spoons #condition #brainfog #fibrowarrior #potssyndrome #pots #cfsme #multiplesclerosis #ms #endometriosis - 3 hours ago

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Shirley_Setial_\Uoo26_Marshmello_kala_chasma
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#marshmello #mellogang 
#martingarrixfans #marshmellofamily #mashup #marshmelloalone #marshmellomusic #marshmellow #marshmellofans #mellogangfridays #marshmellofriends #mello #martingarrix #eds #edmlife #edcknife #electrodancemusic #alesso #alone #afrojack #avicii #trending #thechainsmokers #tommorowland #tiesto#chainsmokers #calvinharris #fanart #fotos#keepitmello

Shirley_Setial_\Uoo26_Marshmello_kala_chasma . #marshmello #mellogang #martingarrixfans #marshmellofamily #mashup #marshmelloalone #marshmellomusic #marshmellow #marshmellofans #mellogangfridays #marshmellofriends #mello #martingarrix #eds #edmlife #edcknife #electrodancemusic #alesso #alone #afrojack #avicii #trending #thechainsmokers #tommorowland #tiesto #chainsmokers #calvinharris #fanart #fotos #keepitmello - 3 hours ago

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Earlier today didn’t start out to great as I fell onto the sidewalk at church 😢 Dizziness and vision issues don’t make a great combo 😂 but thankfully I just ended up with some scrapes and bruises.  Please pray that we get an email back from my neurosurgeon so we can come up with a plan!  Well, I’m much more happier now that my room is no longer bright orange! I love that my room is now my two favorite colors! 🦓💙💜💙🦓#EDS #POTS #CCI #Chiari #cranialsettling #craniocervicalfusion #spinalfusionsurvivor #roadtorecovery #7monthspostop #scarsarebeautiful #warrior  #fragilebutunbreakable #choosejoy

Earlier today didn’t start out to great as I fell onto the sidewalk at church Dizziness and vision issues don’t make a great combo but thankfully I just ended up with some scrapes and bruises. Please pray that we get an email back from my neurosurgeon so we can come up with a plan! Well, I’m much more happier now that my room is no longer bright orange! I love that my room is now my two favorite colors! 🦓🦓#EDS #POTS #CCI #Chiari #cranialsettling #craniocervicalfusion #spinalfusionsurvivor #roadtorecovery #7monthspostop #scarsarebeautiful #warrior #fragilebutunbreakable #choosejoy - 3 hours ago

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This is what can happen when you have a lung condition and catch a head cold. Even someting as simple as a cold can cause your oxygen to drop. It's been bouncing betweeen 78 and 92 all day today. For those who can't read a pulse of its at 83% here 92 is my heart rate. My head starts killing me and I get dizzy when this happens. Hopefully in February my doctor can give me more insight about what this disease means. So far all I've been told is it's called Blunting of the costophrenic angles secondary to pleural thickening and it causes scar tissue to form on my lungs but other then that I have no idea what's going on. My guess would be EDS caused this too though.

#eds #ehlersdanlossyndrone #bluntingofthecostophrenicangles #pleuralthickening

This is what can happen when you have a lung condition and catch a head cold. Even someting as simple as a cold can cause your oxygen to drop. It's been bouncing betweeen 78 and 92 all day today. For those who can't read a pulse of its at 83% here 92 is my heart rate. My head starts killing me and I get dizzy when this happens. Hopefully in February my doctor can give me more insight about what this disease means. So far all I've been told is it's called Blunting of the costophrenic angles secondary to pleural thickening and it causes scar tissue to form on my lungs but other then that I have no idea what's going on. My guess would be EDS caused this too though. #eds #ehlersdanlossyndrone #bluntingofthecostophrenicangles #pleuralthickening - 3 hours ago

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#Repost @elkmama3 @get_reposter 
These hands 
have caught babies 
have fed babies 
have massaged babies
These hands
have decorated cakes
have kneaded bread dough
have rolled pastry dough
These hands
have harvested gardens bounty
have milked goats 
have slaughtered goats
These hands
have caressed beloveds
have touched the earth of 5 continents
and countless islands
These hands
have cooked for 100’s
have made cheese
have coaxed vegetables to ferment
These hands
these wrists
these fingers
these thumbs
have hypermobility
and were part of my diagnosis 
of hypermobile Ehlers-Danlos Syndrome

#Repost @elkmama3 @get_reposter These hands have caught babies have fed babies have massaged babies These hands have decorated cakes have kneaded bread dough have rolled pastry dough These hands have harvested gardens bounty have milked goats have slaughtered goats These hands have caressed beloveds have touched the earth of 5 continents and countless islands These hands have cooked for 100’s have made cheese have coaxed vegetables to ferment These hands these wrists these fingers these thumbs have hypermobility and were part of my diagnosis of hypermobile Ehlers-Danlos Syndrome - 3 hours ago

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My attempt at a half smile. 😆
We had a great time last night.  I decided to have an alcoholic drink and pay the price... inflammation everywhere. Not again.😣😂 I was laying in bed, while he went to grab #dutchbrothers coffee, letting myself relax and enjoy the quiet. 😬The coffee was not a great follow up I know, but helps with #gastroparesis for some reason. Not in a good way. Don't copy me.🤣 I need to get back on a plant based diet.

Eta: Pardon the hair. It's from my daughters SDiT, aka #TheHairyBeast .♡ That TooFaced mascara is really on there... #morningafter #datenight #hurtingbuthappy #worthit #pajamaday #inflammation #shouldvehadjuice #nofilter #autoimmunehangover #eds #mmj #cbd

My attempt at a half smile. We had a great time last night. I decided to have an alcoholic drink and pay the price... inflammation everywhere. Not again. I was laying in bed, while he went to grab #dutchbrothers coffee, letting myself relax and enjoy the quiet. 😬The coffee was not a great follow up I know, but helps with #gastroparesis for some reason. Not in a good way. Don't copy me.🤣 I need to get back on a plant based diet. Eta: Pardon the hair. It's from my daughters SDiT, aka #TheHairyBeast .♡ That TooFaced mascara is really on there... #morningafter #datenight #hurtingbuthappy #worthit #pajamaday #inflammation #shouldvehadjuice #nofilter #autoimmunehangover #eds #mmj #cbd - 3 hours ago

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Here’s me looking oh so shy while blending in with some nut colored walls 😂. Truth is - I had a pretty good day and even got on the bike at our little gym! I won’t stop fighting these wretched diseases - ever 😈 #cfs #eds #ehlersdanlos #pots

Here’s me looking oh so shy while blending in with some nut colored walls . Truth is - I had a pretty good day and even got on the bike at our little gym! I won’t stop fighting these wretched diseases - ever 😈 #cfs #eds #ehlersdanlos #pots - 3 hours ago

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"And she always had a way with her brokenness. She would take her pieces and make them beautiful.” - R.M. Drake

Sometimes I just need to get my emotions out, even when I'm not well enough to leave the house. Big thanks to @advinspiration for going with the flow and creating some beautiful images in the comfort of my own home. 
#beautifullybroken #thoseeyes #photoshoot #headshot #invisibleillnesswarrior #edslife #eds #pinkhair #silverringsplints

"And she always had a way with her brokenness. She would take her pieces and make them beautiful.” - R.M. Drake Sometimes I just need to get my emotions out, even when I'm not well enough to leave the house. Big thanks to @advinspiration for going with the flow and creating some beautiful images in the comfort of my own home. #beautifullybroken #thoseeyes #photoshoot #headshot #invisibleillnesswarrior #edslife #eds #pinkhair #silverringsplints - 4 hours ago

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Working distance. I want to talk about hunting for a second. 
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One of my biggest training goals has always been to train and own a hunting dog. I’ve always been so silently involved, watching from the side lines and admiring dogs that did this sport. I was so nervous with my health about doing it, since it is a sport that can be very taxing physical wise. I ended up literally sucking up all the pain, which kicks my butt most days after a long day of training. I usually spend these moments in bed, wanting to give up. 
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But then I look back on videos like this. I see progress. I see accomplishment. I get a fire in me to go back onto that field and keep pushing myself. Because I am doing something I never thought I would do. I own a very versatile, working dog. I can’t let him or myself down. The pain is worth it. I’ve met so many good friends that are like family now. I’ve learned so much about training hunting dogs and I’m engulfed in the sport now. I do this for me. And for Godric. And I am so beyond happy I am doing this. 
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#servicedog #goldensofig #instadogs #patienceandlove143 #gryffindogs #cutestgoldens #eds #ehlersdanlossyndrome #workingdogs #goldenretriever #goldenretrieverlovers #floridadog #floridaservicedog #floridaworkingdog #dogtrainer #dogtraining #fibromyalgia #mentalhealthawareness #dogtrainer #rallydog #obediencedog #huntingdog #duckdog #juniorhunter #fielddog

Working distance. I want to talk about hunting for a second. ___ One of my biggest training goals has always been to train and own a hunting dog. I’ve always been so silently involved, watching from the side lines and admiring dogs that did this sport. I was so nervous with my health about doing it, since it is a sport that can be very taxing physical wise. I ended up literally sucking up all the pain, which kicks my butt most days after a long day of training. I usually spend these moments in bed, wanting to give up. ____ But then I look back on videos like this. I see progress. I see accomplishment. I get a fire in me to go back onto that field and keep pushing myself. Because I am doing something I never thought I would do. I own a very versatile, working dog. I can’t let him or myself down. The pain is worth it. I’ve met so many good friends that are like family now. I’ve learned so much about training hunting dogs and I’m engulfed in the sport now. I do this for me. And for Godric. And I am so beyond happy I am doing this. _______________________________________ #servicedog #goldensofig #instadogs #patienceandlove143 #gryffindogs #cutestgoldens #eds #ehlersdanlossyndrome #workingdogs #goldenretriever #goldenretrieverlovers #floridadog #floridaservicedog #floridaworkingdog #dogtrainer #dogtraining #fibromyalgia #mentalhealthawareness #dogtrainer #rallydog #obediencedog #huntingdog #duckdog #juniorhunter #fielddog - 4 hours ago

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Esta vez una couple bien sweet💥💃🏽. Jay Moore- 5 and 6🎶
Juntos con estos grandes bailarines: 
@godrake_  @lilbanyo @javyeduar @alexandraewp @aleghetto ♥️!! #EDS.

Esta vez una couple bien sweet🏽. Jay Moore- 5 and 6 Juntos con estos grandes bailarines: @godrake_ @lilbanyo @javyeduar @alexandraewp @aleghetto ️!! #EDS . - 4 hours ago

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You got this!
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 #brave #hemophilia #spoonie #cancer #cancersucks #port #mediport #pots #dysautonomia #cysticfibrosis #warriors #bleeding  #chronicillness #chronicillnesswarriors #eds#hemophiliaproblems #hemolife #chronicillnessproblems #infusions #ehlersdanlossyndrome #bruised #medical #infusions #chronicloveclub #bleeding #medicallife #hospital #eds #nurses #infuse #bleeding #bruisednotbroken #bruisedandbrave #medical

You got this! - - - - - - #brave #hemophilia #spoonie #cancer #cancersucks #port #mediport #pots #dysautonomia #cysticfibrosis #warriors #bleeding #chronicillness #chronicillnesswarriors #eds #hemophiliaproblems #hemolife #chronicillnessproblems #infusions #ehlersdanlossyndrome #bruised #medical #infusions #chronicloveclub #bleeding #medicallife #hospital #eds #nurses #infuse #bleeding #bruisednotbroken #bruisedandbrave #medical - 4 hours ago

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When you miss the vein (#thesaints we still love you #whodat ⚜️)
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#vonwillebrandstype3 #vonwillebrands #hemophilia #bleedingdisorders #brave #bleederproblems #haemophilia #haemopiliaproblems #hemomomlife #bleeding  #chronicillness #hemophiliaproblems #hemolife #chronicillnessproblems #infusions #ehlersdanlossyndrome #bruised #medical #chronicloveclub #bleeding #medicallife #hospital #eds #nurses #infuse #bleeding #bruisednotbroken #bruisedandbrave #medical #typethreegirl

When you miss the vein (#thesaints we still love you #whodat ⚜️) - - - – - - #vonwillebrandstype3 #vonwillebrands #hemophilia #bleedingdisorders #brave #bleederproblems #haemophilia #haemopiliaproblems #hemomomlife #bleeding #chronicillness #hemophiliaproblems #hemolife #chronicillnessproblems #infusions #ehlersdanlossyndrome #bruised #medical #chronicloveclub #bleeding #medicallife #hospital #eds #nurses #infuse #bleeding #bruisednotbroken #bruisedandbrave #medical #typethreegirl - 4 hours ago

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“Don’t worry about making waves simply by being yourself. The moon does it all the time.”- Scott Stabile 🌝💓

“Don’t worry about making waves simply by being yourself. The moon does it all the time.”- Scott Stabile 🌝 - 4 hours ago

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4 hours ago

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Actually though, despite having crappy eyes and retinas and such I really do like my eyes. My eyes have an extra line or two of lashes, though not super noticeable when I’ve got these #eyelashextensions...
#shamelessselfie and shameless self love and I encourage you all to say these things out loud and normalize self acceptance and aesthetic freedom. Even with eyelash extensions, it’s like buzzing my hair or getting tattoos; self expression that feels extra af plus it takes some of the prep time out of getting ready for shoots. #420 #blazeit #mmj #weed #medicalcannabis #model #chronicpain #fibromyalgia #eds #connectivetissuedisorder #joint #glasses #pink #selfie #tattoo #piercing #blueeyes #distichiasis #odd #weirdo #proud

Actually though, despite having crappy eyes and retinas and such I really do like my eyes. My eyes have an extra line or two of lashes, though not super noticeable when I’ve got these #eyelashextensions ... #shamelessselfie and shameless self love and I encourage you all to say these things out loud and normalize self acceptance and aesthetic freedom. Even with eyelash extensions, it’s like buzzing my hair or getting tattoos; self expression that feels extra af plus it takes some of the prep time out of getting ready for shoots. #420 #blazeit #mmj #weed #medicalcannabis #model #chronicpain #fibromyalgia #eds #connectivetissuedisorder #joint #glasses #pink #selfie #tattoo #piercing #blueeyes #distichiasis #odd #weirdo #proud - 4 hours ago

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Playing videogmaes with meadow and my partner #servicedog #working #dog #workingdog #whitelab #lab #cute #followme #follow #animal #eds #instagram #helpingdogs #doggy #dogstagram #doglovers

Playing videogmaes with meadow and my partner #servicedog #working #dog #workingdog #whitelab #lab #cute #followme #follow #animal #eds #instagram #helpingdogs #doggy #dogstagram #doglovers - 5 hours ago

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Include disabled people in your activism. Too many marches are far too difficult for your disabled comrades. You can claim that your march is accessible, but does your route have hills or barriers? No one should need to be pushed if they’re usually independently mobile. Make sure people with mobility impairments access the march route. There needs to be a designated accessible seating area so that folks who need to sit aren’t trapped behind standing people. DO YOU HAVE DISABLED SPEAKERS? Let us be heard. Give us access to the stage. To not have ramps to your stage, you are directly implying that disabled voices aren’t important enough to make the effort. ♿️ #disabledandproud

Include disabled people in your activism. Too many marches are far too difficult for your disabled comrades. You can claim that your march is accessible, but does your route have hills or barriers? No one should need to be pushed if they’re usually independently mobile. Make sure people with mobility impairments access the march route. There needs to be a designated accessible seating area so that folks who need to sit aren’t trapped behind standing people. DO YOU HAVE DISABLED SPEAKERS? Let us be heard. Give us access to the stage. To not have ramps to your stage, you are directly implying that disabled voices aren’t important enough to make the effort. #disabledandproud - 5 hours ago

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I woke up from a nap with my arm slipping away from me. The (terrible) pain woke me up. It's still very painful but it's held together now. 
#eds #ehlersdanlossyndrome #shoulderdislocation #pain #chronicillness #chronicpain #rocktape

I woke up from a nap with my arm slipping away from me. The (terrible) pain woke me up. It's still very painful but it's held together now. #eds #ehlersdanlossyndrome #shoulderdislocation #pain #chronicillness #chronicpain #rocktape - 5 hours ago

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MS, quest . Breakfast, oatmeal, belvita & apples.S, sw. Lunch, corn. AS, honey roasted peanuts.Dinner, pasta, veg & peas. #anorexiawarrior #anorexiarecovery #anarecovery recovery#recovery#anorexia#anorexiarecovery#ed#food#edrecovery#eds#recoveryfood#recoverywin#recoveryispossible#recoveryday#recoveryjourney#prorecovery#recoveryishard#recoveryaccount#recoverytime#facerecovery#recoveryfood#anorexiarecovery#disorder#help#mealplan#mealplanssuck#eattingdisorderrecovery#eattingdisorders#eattingdisorder#anarexianervosa#ana#anarecovery#anarexianervosarecovery

MS, quest . Breakfast, oatmeal, belvita & apples.S, sw. Lunch, corn. AS, honey roasted peanuts.Dinner, pasta, veg & peas. #anorexiawarrior #anorexiarecovery #anarecovery recovery#recovery #anorexia #anorexiarecovery #ed #food #edrecovery #eds #recoveryfood #recoverywin #recoveryispossible #recoveryday #recoveryjourney #prorecovery #recoveryishard #recoveryaccount #recoverytime #facerecovery #recoveryfood #anorexiarecovery #disorder #help #mealplan #mealplanssuck #eattingdisorderrecovery #eattingdisorders #eattingdisorder #anarexianervosa #ana #anarecovery #anarexianervosarecovery - 5 hours ago

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Maplewood mall exposure and conquering my fear of these ceramic tile/open back steps! .
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#servicedogpuppy #servicedogprospect #servicedogsofig #servicedoghandler #servicedogintraining #servicedogteam #servicedoglife  #labsofinstagram #labrador #yellowlab #dudleylab #labradorable #SDiT #servicedogintraining #dysautonomia #ehlersdanlossyndrome #EDS #hypermobility #puppiesofig #chronicillness #chronicpain #anxiety  #invisibleillness #respectthevest  #realservicedog #servicedogteam #dogtraining #assistancedog #servicedogsofinstagram #ownertrainedservicedog #OTSD

Maplewood mall exposure and conquering my fear of these ceramic tile/open back steps! . . . . . . #servicedogpuppy #servicedogprospect #servicedogsofig #servicedoghandler #servicedogintraining #servicedogteam #servicedoglife #labsofinstagram #labrador #yellowlab #dudleylab #labradorable #SDiT #servicedogintraining #dysautonomia #ehlersdanlossyndrome #EDS #hypermobility #puppiesofig #chronicillness #chronicpain #anxiety   #invisibleillness #respectthevest   #realservicedog #servicedogteam #dogtraining #assistancedog #servicedogsofinstagram #ownertrainedservicedog #OTSD - 5 hours ago

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St paul hotel visit and exposure excersize! .
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#servicedogpuppy #servicedogprospect #servicedogsofig #servicedoghandler #servicedogintraining #servicedogteam #servicedoglife  #labsofinstagram #labrador #yellowlab #dudleylab #labradorable #SDiT #servicedogintraining #dysautonomia #ehlersdanlossyndrome #EDS #hypermobility #puppiesofig #chronicillness #chronicpain #anxiety  #invisibleillness #respectthevest  #realservicedog #servicedogteam #dogtraining #assistancedog #servicedogsofinstagram #ownertrainedservicedog #OTSD

St paul hotel visit and exposure excersize! . . . . #servicedogpuppy #servicedogprospect #servicedogsofig #servicedoghandler #servicedogintraining #servicedogteam #servicedoglife #labsofinstagram #labrador #yellowlab #dudleylab #labradorable #SDiT #servicedogintraining #dysautonomia #ehlersdanlossyndrome #EDS #hypermobility #puppiesofig #chronicillness #chronicpain #anxiety   #invisibleillness #respectthevest   #realservicedog #servicedogteam #dogtraining #assistancedog #servicedogsofinstagram #ownertrainedservicedog #OTSD - 5 hours ago

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Happy Full Moon Eclipse in CREATIVE Leo - the sign of creativity, heart, and passion. In some aspect of our lives we are feeling the drive to CREATE. NEW projects, NEW hobbies, maybe ones we thought about  but haven't acted on. Take note of what was going on in your life last February 2018. Move forward into a new endeavor that makes your heart feel alive. Take the a leap of faith. DON'T BR AFRAID to fail, don't be afraid to be embarrassed or judged. Creating is one of the truest expressions of living. We all have something beautiful to create within us. Take that new job, start that new hobby, fall in love, whatever just do it with passion. I myself have some BIG PLANS for some upcoming creative projects involving spreading awareness for #ehlersdanlossyndrome & #invisibleillness populations. Stay tuned, I hope you'll support me in my journey. May this Eclipse bring you something that makes your heart sizzle. #astroworld #eclipse

Happy Full Moon Eclipse in CREATIVE Leo - the sign of creativity, heart, and passion. In some aspect of our lives we are feeling the drive to CREATE. NEW projects, NEW hobbies, maybe ones we thought about but haven't acted on. Take note of what was going on in your life last February 2018. Move forward into a new endeavor that makes your heart feel alive. Take the a leap of faith. DON'T BR AFRAID to fail, don't be afraid to be embarrassed or judged. Creating is one of the truest expressions of living. We all have something beautiful to create within us. Take that new job, start that new hobby, fall in love, whatever just do it with passion. I myself have some BIG PLANS for some upcoming creative projects involving spreading awareness for #ehlersdanlossyndrome & #invisibleillness populations. Stay tuned, I hope you'll support me in my journey. May this Eclipse bring you something that makes your heart sizzle. #astroworld #eclipse - 5 hours ago

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It’s never too late to get help. Ask for help. There is always hope. You can do this!!! #spoonie #chronicillness #chronicallyfabulous #fabulouszebra #pots #chronicillnesswarrior #chronicpain #eds #ehlersdanlossyndrome #endometriosis #hysterectomy #hysterectomyrecovery #autoimmunedisease #gastroparesis #eatingdisorder #eatingdisorderrecovery #god #godisgood #addiction #addictionrecovery #addict

It’s never too late to get help. Ask for help. There is always hope. You can do this!!! #spoonie #chronicillness #chronicallyfabulous #fabulouszebra #pots #chronicillnesswarrior #chronicpain #eds #ehlersdanlossyndrome #endometriosis #hysterectomy #hysterectomyrecovery #autoimmunedisease #gastroparesis #eatingdisorder #eatingdisorderrecovery #god #godisgood #addiction #addictionrecovery #addict - 5 hours ago

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Still waiting... 😪😬😫😭
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#ehlersdanlossyndrome #ehlersdanlosawareness #EDS #POTS #MCAD #millionsmissing #degenerativediscdisease #degenerativejointdisease #arthritis #fibromyalgia #tmjdisorder #chronicpain #chronicheadaches #anxiety #depression #mentalhealthdisorders #vaccinesinjure #vaccinescauseharm #vaccineinjured #gardasil #gardasilgirls #gardasilrecovery #gardasilispoison #chronicillness #invisibleillness #naturalcuresnotpharma #chronicillnesswarrior #zebrastrong #10yearchallenge

Still waiting... 😬 . . 🦓🦓🦓🦓🦓 . . . . . #ehlersdanlossyndrome #ehlersdanlosawareness #EDS #POTS #MCAD #millionsmissing #degenerativediscdisease #degenerativejointdisease #arthritis #fibromyalgia #tmjdisorder #chronicpain #chronicheadaches #anxiety #depression #mentalhealthdisorders #vaccinesinjure #vaccinescauseharm #vaccineinjured #gardasil #gardasilgirls #gardasilrecovery #gardasilispoison #chronicillness #invisibleillness #naturalcuresnotpharma #chronicillnesswarrior #zebrastrong #10yearchallenge - 5 hours ago

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very full week and I'm exhausted just thinking about it
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3 appts this week plus baking for and going to kids club at church
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my energy has been so low recently and I just want to feel less sleepy and fatigued all the time ughhh .
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#spoonie #chronicallyill #eds #gastroparesis #pots #chronicillness #jtube #feedingtube

very full week and I'm exhausted just thinking about it . 3 appts this week plus baking for and going to kids club at church . my energy has been so low recently and I just want to feel less sleepy and fatigued all the time ughhh . . . #spoonie #chronicallyill #eds #gastroparesis #pots #chronicillness #jtube #feedingtube - 5 hours ago

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"oh dis looks like a comfy spot" 😑😑😑 #catsofinstagram #cats #catshelping #EDS #heds #ehlersdanlossyndrome #chronicallyill #chronicillness

"oh dis looks like a comfy spot" 😑😑😑 #catsofinstagram #cats #catshelping #EDS #heds #ehlersdanlossyndrome #chronicallyill #chronicillness - 5 hours ago

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[Deleted my post from a few days ago, did a few tweaks to the hair to make it perfect, so reposting!] 👌🏼 So once again, all of my hair has decided to fall out in huge clumps from anesthesia 😞.. 5th time.  It’s traumatic each and every time.  I literally feel like I have no hair on my head because it’s already super fine to begin with, and still recovering from other damage.  Once again, @gardeauxwigs saves the day 🙌🏼 I never do shorter wigs but for some reason this one just spoke to me and I actually am obsessed with the length and all of the body & volume it has. 😍 After surgery, it’s things like this that make me smile.  You feel so gross in the hospital and lose a ton of modesty.  I can’t wait to see how glam I feel with some makeup & a cute outfit... whenever that happens. 🤷🏼‍♀️ #postop #tetheredcord #spinesurgery #recovery #hairloss #gardeauxwigs #makeupfree #ineedatan #chiarimalformation #warrior #eds #ehlersdanlossyndrome #survivor #wigs

[Deleted my post from a few days ago, did a few tweaks to the hair to make it perfect, so reposting!] 🏼 So once again, all of my hair has decided to fall out in huge clumps from anesthesia .. 5th time. It’s traumatic each and every time. I literally feel like I have no hair on my head because it’s already super fine to begin with, and still recovering from other damage. Once again, @gardeauxwigs saves the day 🏼 I never do shorter wigs but for some reason this one just spoke to me and I actually am obsessed with the length and all of the body & volume it has. After surgery, it’s things like this that make me smile. You feel so gross in the hospital and lose a ton of modesty. I can’t wait to see how glam I feel with some makeup & a cute outfit... whenever that happens. 🤷🏼‍♀️ #postop #tetheredcord #spinesurgery #recovery #hairloss #gardeauxwigs #makeupfree #ineedatan #chiarimalformation #warrior #eds #ehlersdanlossyndrome #survivor #wigs - 5 hours ago

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These facial expressions are screen shots from my new video update & perfectly explain how I currently feel about life. 😂 People often comment on my facial expressions. It’s a joke amongst people who know me in real life that I can’t hide what I’m thinking/feeling; it always shows on my face. 🤷🏼‍♀️ Anyone else?! Link in bio for my update on my recent dr visits.
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#zebrastrong #eds #ehlersdanlossyndrome #ehlersdanlos #hypermobility #hypermobilitysyndrome #hypermobileehlersdanlossyndrome #hypermobileehlersdanlos #hEDS #ehlersdanlostype3 #chronicpain #chronicillness #chronicfatigue #edsawareness #spoonie #spoonielife #spoonies #spooniestrong #thespooniesisterhood #mightytogether #hanginthere #dazzletogether #zebra #invisibleillness #wherethetiredgirlsare #support #community #illness #chronicillnessawareness #discoveringEDS

These facial expressions are screen shots from my new video update & perfectly explain how I currently feel about life. People often comment on my facial expressions. It’s a joke amongst people who know me in real life that I can’t hide what I’m thinking/feeling; it always shows on my face. 🤷🏼‍♀️ Anyone else?! Link in bio for my update on my recent dr visits. . . . . . . . . #zebrastrong #eds #ehlersdanlossyndrome #ehlersdanlos #hypermobility #hypermobilitysyndrome #hypermobileehlersdanlossyndrome #hypermobileehlersdanlos #hEDS #ehlersdanlostype3 #chronicpain #chronicillness #chronicfatigue #edsawareness #spoonie #spoonielife #spoonies #spooniestrong #thespooniesisterhood #mightytogether #hanginthere #dazzletogether #zebra #invisibleillness #wherethetiredgirlsare #support #community #illness #chronicillnessawareness #discoveringEDS - 5 hours ago

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Momma makes a good pillow. 
#serviceanimal #awareness #bubba #chronicillness #dogs #disability #dogsofinstagram #epilepsy #eds #findjoy #invisibiledisability #itgetsbetter #pittie #pitbull #ptsd #seizuredog #syncope #spoonie #servicedogsofinstagram #seizure #wisconsin

Momma makes a good pillow. #serviceanimal #awareness #bubba #chronicillness #dogs #disability #dogsofinstagram #epilepsy #eds #findjoy #invisibiledisability #itgetsbetter #pittie #pitbull #ptsd #seizuredog #syncope #spoonie #servicedogsofinstagram #seizure #wisconsin - 5 hours ago

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Today’s reminder, make time for you!

Today’s reminder, make time for you! - 5 hours ago

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10 O'clock Cookie Company has to die for gluten free goodies, including this delicious Death By Chocolate (mousse with a glaze & a little bit of hard chocolate for added chocolatey goodness!). Such a treat!
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#glutenfree #glutenfreegoodies #deathbychocolate #10oclock #10occ #eds #ehlersdanlossyndrome #connectivetissuedisorder #celiacdisease #chronicpain #chronicillness #spoonie #zebra #zebrawarrior #sickbutinvisible #chronie #anxietydisorder #invisibleillness #PoTS #mcad #posturalorthostatictachycardiasyndrome #mastcellactivationdisorder #dysautonomia

10 O'clock Cookie Company has to die for gluten free goodies, including this delicious Death By Chocolate (mousse with a glaze & a little bit of hard chocolate for added chocolatey goodness!). Such a treat! . . #glutenfree #glutenfreegoodies #deathbychocolate #10oclock #10occ #eds #ehlersdanlossyndrome #connectivetissuedisorder #celiacdisease #chronicpain #chronicillness #spoonie #zebra #zebrawarrior #sickbutinvisible #chronie #anxietydisorder #invisibleillness #PoTS #mcad #posturalorthostatictachycardiasyndrome #mastcellactivationdisorder #dysautonomia - 5 hours ago

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The medications I take several times a day just for them to land on top of old food in my paralyzed stomach (gasteoparesis) and sit there to either barely work a long time after taking them, or not work at all. This is why I need an N-GJ tube which my surgeon absolutely refuses to do for me. He has this wild idea that I'm going to allow him to do a cutting edge GPOEM surgery that's new for people with gasteoparesis. Not people with EDS gasteoparesis because it's different than a spasming pyloric sphincter, it's a Mast Cell issue and my intestines are so sluggish I barely use the bathroom once every 6-8 weeks. Allowing more food into my intestines will only cause an obstruction. My food allergies change constantly and cause huge blusters on my tongue and all inside of my mouth. I am so sock now I'm on the bathroom floor so nauseous with a cold washcloth on my face and neck. I've waited like this since just after Thanksgiving that I was at home in bed for. Same with Christmas and now... tomorrow is another holiday. I'm done. Need to find a doctor who will do the tube. I'm not going to be a surgeon's token EDS guinea pig.
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#eds #ehlersdanlossyndrome #chronicillness #spoonlife #spoonie #disability #chronicpain #connectivetissuedisorder #hypermobile #hypermobility #subluxations #zebra #zebrastrong #zebrawarrior #gastroparesis #dysautonomia #mcas #mcad #chronicillness #chronicfatigue #narcolepsy #seizures #orthostatichypotension #potssyndrome #intestinaldysmotility #craniocervicalinstability #sijointdysfunction  #lumbarinstability #spinalinstability #cervicaldegeneration #chronicdislocations

The medications I take several times a day just for them to land on top of old food in my paralyzed stomach (gasteoparesis) and sit there to either barely work a long time after taking them, or not work at all. This is why I need an N-GJ tube which my surgeon absolutely refuses to do for me. He has this wild idea that I'm going to allow him to do a cutting edge GPOEM surgery that's new for people with gasteoparesis. Not people with EDS gasteoparesis because it's different than a spasming pyloric sphincter, it's a Mast Cell issue and my intestines are so sluggish I barely use the bathroom once every 6-8 weeks. Allowing more food into my intestines will only cause an obstruction. My food allergies change constantly and cause huge blusters on my tongue and all inside of my mouth. I am so sock now I'm on the bathroom floor so nauseous with a cold washcloth on my face and neck. I've waited like this since just after Thanksgiving that I was at home in bed for. Same with Christmas and now... tomorrow is another holiday. I'm done. Need to find a doctor who will do the tube. I'm not going to be a surgeon's token EDS guinea pig. 🦓 🦓 🦓 🦓 🦓 #eds #ehlersdanlossyndrome #chronicillness #spoonlife #spoonie #disability #chronicpain #connectivetissuedisorder #hypermobile #hypermobility #subluxations #zebra #zebrastrong #zebrawarrior #gastroparesis #dysautonomia #mcas #mcad #chronicillness #chronicfatigue #narcolepsy #seizures #orthostatichypotension #potssyndrome #intestinaldysmotility #craniocervicalinstability #sijointdysfunction #lumbarinstability #spinalinstability #cervicaldegeneration #chronicdislocations - 5 hours ago

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I feel better today. I went outside, petted a sheep, took a short walk, embraced the cold and enjoyed the sunlight. Getting over the flu or whatever it was. Still spending 90% of time in bed but it felt so good to be out and take a short walk. Also did a lot of stretching and hopefully can go back to my exercises tomorrow. I can't afford to wait. I am extra weak now and my hips are already subluxing all over the place. My shoulder still hasn't gone to the space where it belongs and I do not even want to talk about my elbows or wrists.🙈 Bút it is good to know that my exercises and all the other things I do are working. Because withput doing them it is like my body falls apart. Telling my limbs to go to their rooms because they are grounded sure puts a smile on my face and keeps things light, but effective? Nope.😄
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This was the first time in ages that I was sick without any explosive secondary infections. No ruptured eardrums, no peeing blood, no other crazy things. Look I was still pretty sick and all of the symptoms I already had flared/ are flaring big time but I am seeing this as something positive. I decided to see it as something positive. Because I need it to be.
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So this was my dinner: banana-blueberry-cinnamon nicecream with kiwi, an orange with dates and a few pistachios, sprouts and microgreens with raw marinara, and a smoothie with just spinach, water and whatever there was left in the blender of my nicecream goodness. Yep, apetite is back!!😋🌱
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#medicalmedium #rawvegan #plantpower #rawvegansofig #fullyraw #healyourself #healyourgut #healingjourney #fullyraw #vegan #eattherainbow #livingfood #whatrawveganseat #highcarblowfat #highcarblowfatvegan #highcarblowfatrawvegan #medicalmediumprotocol #medicalmediumcleanse #fruitfear #medicalmediumtribe #blueberries #bananaaddict #eds #edrecovery #ehlersdanlossyndrome #healingpower #vitamix #blueberrybanana #kiwi #kiwifruit #zespri

I feel better today. I went outside, petted a sheep, took a short walk, embraced the cold and enjoyed the sunlight. Getting over the flu or whatever it was. Still spending 90% of time in bed but it felt so good to be out and take a short walk. Also did a lot of stretching and hopefully can go back to my exercises tomorrow. I can't afford to wait. I am extra weak now and my hips are already subluxing all over the place. My shoulder still hasn't gone to the space where it belongs and I do not even want to talk about my elbows or wrists. Bút it is good to know that my exercises and all the other things I do are working. Because withput doing them it is like my body falls apart. Telling my limbs to go to their rooms because they are grounded sure puts a smile on my face and keeps things light, but effective? Nope. ⠀⠀⠀⠀⠀⠀⠀⠀ This was the first time in ages that I was sick without any explosive secondary infections. No ruptured eardrums, no peeing blood, no other crazy things. Look I was still pretty sick and all of the symptoms I already had flared/ are flaring big time but I am seeing this as something positive. I decided to see it as something positive. Because I need it to be. ⠀⠀⠀⠀⠀⠀⠀⠀ So this was my dinner: banana-blueberry-cinnamon nicecream with kiwi, an orange with dates and a few pistachios, sprouts and microgreens with raw marinara, and a smoothie with just spinach, water and whatever there was left in the blender of my nicecream goodness. Yep, apetite is back!! ⠀⠀⠀⠀⠀⠀⠀ #medicalmedium #rawvegan #plantpower #rawvegansofig #fullyraw #healyourself #healyourgut #healingjourney #fullyraw #vegan #eattherainbow #livingfood #whatrawveganseat #highcarblowfat #highcarblowfatvegan #highcarblowfatrawvegan #medicalmediumprotocol #medicalmediumcleanse #fruitfear #medicalmediumtribe #blueberries #bananaaddict #eds #edrecovery #ehlersdanlossyndrome #healingpower #vitamix #blueberrybanana #kiwi #kiwifruit #zespri - 7 hours ago

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Getting some stamping practice in is great way to help provide a creative outlet! Some of these are going to other #spoonies #zebras #mgstrong  people and supporters. In fact off to stamp #mg strong for a few and patience for myself! (Long story)

Getting some stamping practice in is great way to help provide a creative outlet! Some of these are going to other #spoonies #zebras #mgstrong people and supporters. In fact off to stamp #mg strong for a few and patience for myself! (Long story) - 8 hours ago

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This is actually hilarious and so spot on its ridiculous! 😂😂😂😂 #10yearchallenge #eds #ehlersdanlossyndrome  #clueless #noidea #whocares

This is actually hilarious and so spot on its ridiculous! #10yearchallenge #eds #ehlersdanlossyndrome #clueless #noidea #whocares - 11 hours ago

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Art is everywhere and so are we. Today we are homeschooling in the Design District. These kids are amazing you guys. I’m so incredibly blessed to get to take my kids with me wherever I go. I’m so thankful for the freedom Homeschooling has provided our family. I don’t want to miss a single moment with these kids. I miss them horribly when I am away and so I soak up every second I can when I am home. .
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@daltile_dallasdesignstudio #dallasdesigndistrict #dallasdesign #designdistrict #dallasdesigners #fortworthdesigner #homeschoolmom #homeschooling #fromwhereiwork #workfromanywheremom #freedom #timefreedom #mombosslife #ehlersdanlossyndrome #chiarimalformation #chiariwarrior #bravelikehenley #bebrave #bravecampaign #eds

Art is everywhere and so are we. Today we are homeschooling in the Design District. These kids are amazing you guys. I’m so incredibly blessed to get to take my kids with me wherever I go. I’m so thankful for the freedom Homeschooling has provided our family. I don’t want to miss a single moment with these kids. I miss them horribly when I am away and so I soak up every second I can when I am home. . . . . . . @daltile_dallasdesignstudio #dallasdesigndistrict #dallasdesign #designdistrict #dallasdesigners #fortworthdesigner #homeschoolmom #homeschooling #fromwhereiwork #workfromanywheremom #freedom #timefreedom #mombosslife #ehlersdanlossyndrome #chiarimalformation #chiariwarrior #bravelikehenley #bebrave #bravecampaign #eds - 9 days ago

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What a sweet reminder today! One year ago we had just arrived at Give Kids the World for Henley’s wish trip. It felt like the first breath of fresh air we had received in a very long time. .
There are so many families who are in a “season of hard” right now and if that is you, Let this picture be an encouragement to you that “hard” is not forever. Our family had a completely crappy ENTIRE YEAR. This picture shows the calm after the storm. The triumph of perseverance. This picture is a reminder to me that God is faithful and he can walk an entire family through a blazing wildfire and provide protection through it all. .
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#chiarimalformation #chiariawareness #chiariwarrior #ehlersdanlossyndrome #eds #ehlersdanlos #bravelikehenley #bravecampaign #wishtrip #disneywish #arnoldchiari

What a sweet reminder today! One year ago we had just arrived at Give Kids the World for Henley’s wish trip. It felt like the first breath of fresh air we had received in a very long time. . There are so many families who are in a “season of hard” right now and if that is you, Let this picture be an encouragement to you that “hard” is not forever. Our family had a completely crappy ENTIRE YEAR. This picture shows the calm after the storm. The triumph of perseverance. This picture is a reminder to me that God is faithful and he can walk an entire family through a blazing wildfire and provide protection through it all. . . . . . #chiarimalformation #chiariawareness #chiariwarrior #ehlersdanlossyndrome #eds #ehlersdanlos #bravelikehenley #bravecampaign #wishtrip #disneywish #arnoldchiari - 1 month ago

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This past weekend we celebrated Henley’s 9th birthday. This giraffe 🦒 lover had the time of her life!! Thanks @fossilrim for the wonderful time and @gosdin for this photo!
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#chiarimalformation #chiariwarrior #ehlersdanlossyndrome #eds #ehlersdanlos #chiari #chiarian #chiarilife #bravelikehenley #bebrave #bravecampaign #awishwithwings #giraffes #fossilrim

This past weekend we celebrated Henley’s 9th birthday. This giraffe 🦒 lover had the time of her life!! Thanks @fossilrim for the wonderful time and @gosdin for this photo! . . . . #chiarimalformation #chiariwarrior #ehlersdanlossyndrome #eds #ehlersdanlos #chiari #chiarian #chiarilife #bravelikehenley #bebrave #bravecampaign #awishwithwings #giraffes #fossilrim - 3 months ago

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1 year post op appointment here we come.
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#chiarimalformation #chiariwarrior #ehlersdanlossyndrome #eds #ehlersdanlos #chiari #chiarian #chiarilife #bravelikehenley #bebrave #bravecampaign #chiariawareness

1 year post op appointment here we come. . . . . . . #chiarimalformation #chiariwarrior #ehlersdanlossyndrome #eds #ehlersdanlos #chiari #chiarian #chiarilife #bravelikehenley #bebrave #bravecampaign #chiariawareness - 7 months ago

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Heading in for Henley’s 1 year post op MRI. Praying that as everything has settled over the past year that there is plenty of space around her brain stem on both sides. This girl is my hero 💪 for real! I had lost count and so I asked what number this one was for her. Y’all!! To date she has had 38 MRI scans and she’s only 8! 😳 #chiariwarrior #bravelikehenley #bravelikedarby #chiarimalformation #chiariawareness #chiarilife #bravecampaign #bebrave #ehlersdanlossyndrome #eds #ehlersdanlos #chiari

Heading in for Henley’s 1 year post op MRI. Praying that as everything has settled over the past year that there is plenty of space around her brain stem on both sides. This girl is my hero for real! I had lost count and so I asked what number this one was for her. Y’all!! To date she has had 38 MRI scans and she’s only 8! #chiariwarrior #bravelikehenley #bravelikedarby #chiarimalformation #chiariawareness #chiarilife #bravecampaign #bebrave #ehlersdanlossyndrome #eds #ehlersdanlos #chiari - 8 months ago

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