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#ehlersdanlos medias

Photos

Cause im still obsessed with this shoot and can't wait to be back in L.A this week 😁
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#weekend #sunday #night #throwback #losangeles #ocean #swimsuit #photoshoot #photography #instaphoto #ehlersdanlos #ehlersdanlossyndrome #effyourbeautystandards #inmyskiniwin #nowrongway #loveyourbody #loveyourlines #selflove #imperfections #beauty #inspire #vibes #embrace #beyou #bebeautiful #perfectlyimperfect  #imperfections #model #real #ilovemybody #bodypositive
Cause im still obsessed with this shoot and can't wait to be back in L.A this week 😁 Photo by - @brianaberglund • • • • • • • • • • • #weekend  #sunday  #night  #throwback  #losangeles  #ocean  #swimsuit  #photoshoot  #photography  #instaphoto  #ehlersdanlos  #ehlersdanlossyndrome  #effyourbeautystandards  #inmyskiniwin  #nowrongway  #loveyourbody  #loveyourlines  #selflove  #imperfections  #beauty  #inspire  #vibes  #embrace  #beyou  #bebeautiful  #perfectlyimperfect  #imperfections  #model  #real  #ilovemybody  #bodypositive 
Starting my week off with a med refill 💪🏼 Taking medication is often so stigmatized, as if what’s “wrong” with our bodies is our own fault [wrongness itself is a topic for a different day]. So we begin to believe what people say, trying to avoid medication and “tough it out” as if willpower were enough to cure. If your medications improve your quality of life in any way, TAKE THEM. There is no shame in using every tool to feel better. You deserve it - don’t let anyone tell you different 💊💊💊 #choosehappiness #takeyourmeds
Starting my week off with a med refill 💪🏼 Taking medication is often so stigmatized, as if what’s “wrong” with our bodies is our own fault [wrongness itself is a topic for a different day]. So we begin to believe what people say, trying to avoid medication and “tough it out” as if willpower were enough to cure. If your medications improve your quality of life in any way, TAKE THEM. There is no shame in using every tool to feel better. You deserve it - don’t let anyone tell you different 💊💊💊 #choosehappiness  #takeyourmeds 
HOW ARE YOU? The most loaded question you can ask a person with chronic illness.
“I’m fine.”
The lie we all tell, fingers crossed behind our backs.
Prior to April of this year when I began The Chronic Ills, an invisible illness project, I had never spoken publicly about my condition.
I’d only told a handful of close friends & family & hid All Of The Everything™️ behind those two little words.
“I’m fine.”
That all changed when I decided to speak out about using CBD oil to control my neuropathic pain. 
For a bit of context: the media in Australia was misreporting the truth of the medicinal cannabis patient access “situation”.
To my surprise, I was met with a deluge of support & kind words. But it hasn’t always gone that way... which is exactly why I “learned” to tell the lie to mask the pain. 
Previous to mustering up the courage to speak my truth, you NEVER would have believed I was so unwell from a quick scan through my personal social media.
I could barely get out of bed or use my left arm & hand.
No one had a clue.
I hadn’t been able to work in over 3 years. No one had any idea. 
This is the blessing & the curse of an invisible illness.
“I’m fine” allowed me to avoid uncomfortable conversations about the searing nerve pain, the dislocating joints, the crushing fatigue.
I’ve let VERY FEW people in over the years, and for good reason. "But you don't LOOK sick."
"It's not like you're DYING."
"At least you don't have CANCER."
“You’re too young to be THIS unwell”
Comments like these drove my self esteem into the ground as a child & young adult... and taught me to mask it all with the familiar & oh so comfortable lie:
“I’m fine.”
But comfort does not bring about change.
Here, in this Instagram community, we may all have completely different types of invisible illness & disability, yet we all have the same thread of silent suffering, isolation & a smiling facade. 
I truly hope that our invisible illness documentary will raise awareness for us all by having those uncomfortable conversations & as a result create understanding & empathy from the world at large.
If you’d like to be involved go to:
thechronicills.com
No more comfortable lies, ok?
Who’s with me?
HOW ARE YOU? The most loaded question you can ask a person with chronic illness. “I’m fine.” The lie we all tell, fingers crossed behind our backs. Prior to April of this year when I began The Chronic Ills, an invisible illness project, I had never spoken publicly about my condition. I’d only told a handful of close friends & family & hid All Of The Everything™️ behind those two little words. “I’m fine.” That all changed when I decided to speak out about using CBD oil to control my neuropathic pain. For a bit of context: the media in Australia was misreporting the truth of the medicinal cannabis patient access “situation”. To my surprise, I was met with a deluge of support & kind words. But it hasn’t always gone that way... which is exactly why I “learned” to tell the lie to mask the pain. Previous to mustering up the courage to speak my truth, you NEVER would have believed I was so unwell from a quick scan through my personal social media. I could barely get out of bed or use my left arm & hand. No one had a clue. I hadn’t been able to work in over 3 years. No one had any idea. This is the blessing & the curse of an invisible illness. “I’m fine” allowed me to avoid uncomfortable conversations about the searing nerve pain, the dislocating joints, the crushing fatigue. I’ve let VERY FEW people in over the years, and for good reason. "But you don't LOOK sick." "It's not like you're DYING." "At least you don't have CANCER." “You’re too young to be THIS unwell” Comments like these drove my self esteem into the ground as a child & young adult... and taught me to mask it all with the familiar & oh so comfortable lie: “I’m fine.” But comfort does not bring about change. Here, in this Instagram community, we may all have completely different types of invisible illness & disability, yet we all have the same thread of silent suffering, isolation & a smiling facade. I truly hope that our invisible illness documentary will raise awareness for us all by having those uncomfortable conversations & as a result create understanding & empathy from the world at large. If you’d like to be involved go to: thechronicills.com No more comfortable lies, ok? Who’s with me?
ALL I WANT FOR CHRISTMAS IS A CURE!✨ This is my latest Christmas t-shirt design. I am very proud of it and any money made from them will go towards my family’s Christmas. It’s been a rough year for us so I thought that this was a cute way for me to try and help out. They are $19.99 and are available through my Etsy shop. If you cannot afford to buy one, just sharing the word about them would be of great help for others to see. Thanks for all of your love and support!❤️💚 The link is below and is also in my bio.😊
www.etsy.com/shop/fabulousbykat
ALL I WANT FOR CHRISTMAS IS A CURE!✨ This is my latest Christmas t-shirt design. I am very proud of it and any money made from them will go towards my family’s Christmas. It’s been a rough year for us so I thought that this was a cute way for me to try and help out. They are $19.99 and are available through my Etsy shop. If you cannot afford to buy one, just sharing the word about them would be of great help for others to see. Thanks for all of your love and support!❤️💚 The link is below and is also in my bio.😊 www.etsy.com/shop/fabulousbykat
Today I ripped an apple in half with my bare hands. Other than that it wasn't too eventful. I woke up in more pain than usual and that sucked but I stayed in my pj pants all day. I did some work for my job and then chilled. Nicole's last final is tomorrow and then she's done for the semester!
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Image description: Abby smiling, holding up two halves of an apple her face partially covered by one half.
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#eds #ehlersdanlos #ehlersdanlossyndrome #chronicillness #chronicallyill #spoonie #rsd #crps #complexregionalpainsyndrome #reflexsympatheticdystrophy #POTS #POTsie #posturalorthostatictachycardia #tachycardia #pain #disabled #disability #edstype3 #dysautonomia #edsawareness #EDSZebra #migraines #chronicfatigue #chronicmigraines #chronicpain #100InvisibleDays #wheelchair #wheelchairuser #Day51
Today I ripped an apple in half with my bare hands. Other than that it wasn't too eventful. I woke up in more pain than usual and that sucked but I stayed in my pj pants all day. I did some work for my job and then chilled. Nicole's last final is tomorrow and then she's done for the semester! . . . Image description: Abby smiling, holding up two halves of an apple her face partially covered by one half. . . . #eds  #ehlersdanlos  #ehlersdanlossyndrome  #chronicillness  #chronicallyill  #spoonie  #rsd  #crps  #complexregionalpainsyndrome  #reflexsympatheticdystrophy  #POTS  #POTsie  #posturalorthostatictachycardia  #tachycardia  #pain  #disabled  #disability  #edstype3  #dysautonomia  #edsawareness  #EDSZebra  #migraines  #chronicfatigue  #chronicmigraines  #chronicpain  #100InvisibleDays  #wheelchair  #wheelchairuser  #Day51 
We’d like you to meet Ruby, who is 21 and has hypermobile EDS. 
Ruby’s worst symptom is chronic pain and so she often needs to use a wheelchair. Despite that, Ruby manages to attend university where she is studying English. 
#12to24
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#ehlersdanlossyndrome #ehlersdanlos #EDS #eds #edszebra #edszebras #hypermobility #hypermobilitysyndrome
🐴 Quand tu veux faire un bisous à ton poney mais que son côté Thug ressort et qu'il te fou un vent... Ça c'est fait 😂😂
Sacré Gambas 🍤
🐴 Quand tu veux faire un bisous à ton poney mais que son côté Thug ressort et qu'il te fou un vent... Ça c'est fait 😂😂 Sacré Gambas 🍤
How beautiful is she ?!❤️ follow @glam.sophie  for future post❤️ and #glamfamm to be featured 🌹 📸 @sarageurts
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"And one day she discovered she was fierce, and strong, and full of fire, and that not even she could hold herself back because her passion burned brighter than her fears." - Mark A 📷 - @brianaberglund ❤
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 #saturday #morning #quote  #photoshoot #photograpy #latepost #ocean #ehlersdanlosawareness #ehlersdanlos #effyourbeautystandards #inmyskiniwin #mybeautymyway #loveyourbody #loveyourlines #selflove #nowrongway #beyou #bebeautiful #blessed #inspire #embrace #beauty  #happy #real #perfectlyimperfect #imperfections #model #WLYG #becomewilhelmina
How beautiful is she ?!❤️ follow @glam.sophie for future post❤️ and #glamfamm  to be featured 🌹 📸 @sarageurts ・・・ "And one day she discovered she was fierce, and strong, and full of fire, and that not even she could hold herself back because her passion burned brighter than her fears." - Mark A 📷 - @brianaberglund ❤ • • • • • • • • #saturday  #morning  #quote  #photoshoot  #photograpy  #latepost  #ocean  #ehlersdanlosawareness  #ehlersdanlos  #effyourbeautystandards  #inmyskiniwin  #mybeautymyway  #loveyourbody  #loveyourlines  #selflove  #nowrongway  #beyou  #bebeautiful  #blessed  #inspire  #embrace  #beauty  #happy  #real  #perfectlyimperfect  #imperfections  #model  #WLYG  #becomewilhelmina 
Thanks New York, you were a treat as always 👌🏻
Thanks New York, you were a treat as always 👌🏻
Actually having a pretty decent morning. My breathing is almost back to normal and I suspect the shortness of breath was largely due to me picking up tobacco again after the hospitalization. It was a tool for me to control my anxiety as I got back into my normal routine, and now that I've phased it back out, my breathing has improved. I had to take xanax the last two evenings as struggling to breathe kept causing bad panic attacks, but the upside is that I got two pretty deep, relatively quiet nights of sleep. I had really bad back spasms and restless legs last night which we think are a reaction to coming of zoloft as I also had similar issues in the hospital when they were not giving it to me consistently. Tramadol and topical CBD/magnesium helped get it under control. Still had crazy detailed dreams but I woke up feeling a little more rested than normal and my pain isn't too bad. Just sink washed my hair and am now sipping on some hot apple cider as I fill out medical paperwork (with breaks to continue building Dumbledore's office out of legos). Hoping my week continues to be this stable while my body gets the rest of the zoloft out.

#spoonie #spooniestrong #spoonielife #chronicallyill #chronicillness #chronicpain #chronicfatigue #chronicfatiguesyndrome #fibromyalgia #fibromyalgiasucks #ehlersdanlos #eds #ehlersdanlossyndrome #edstype3 #ehlersdanlostype3 #hypermobileeds #hypermobileehlersdanlos #potsie #hypermobilityeds #POTs #potsiegirl #ehlersdanlosgrrls #migraines #posturalorthostatictachycardiasyndrome  #anxiety #depression #mentalillness #mentalhealth #selfcare
Actually having a pretty decent morning. My breathing is almost back to normal and I suspect the shortness of breath was largely due to me picking up tobacco again after the hospitalization. It was a tool for me to control my anxiety as I got back into my normal routine, and now that I've phased it back out, my breathing has improved. I had to take xanax the last two evenings as struggling to breathe kept causing bad panic attacks, but the upside is that I got two pretty deep, relatively quiet nights of sleep. I had really bad back spasms and restless legs last night which we think are a reaction to coming of zoloft as I also had similar issues in the hospital when they were not giving it to me consistently. Tramadol and topical CBD/magnesium helped get it under control. Still had crazy detailed dreams but I woke up feeling a little more rested than normal and my pain isn't too bad. Just sink washed my hair and am now sipping on some hot apple cider as I fill out medical paperwork (with breaks to continue building Dumbledore's office out of legos). Hoping my week continues to be this stable while my body gets the rest of the zoloft out. #spoonie  #spooniestrong  #spoonielife  #chronicallyill  #chronicillness  #chronicpain  #chronicfatigue  #chronicfatiguesyndrome  #fibromyalgia  #fibromyalgiasucks  #ehlersdanlos  #eds  #ehlersdanlossyndrome  #edstype3  #ehlersdanlostype3  #hypermobileeds  #hypermobileehlersdanlos  #potsie  #hypermobilityeds  #POTs  #potsiegirl  #ehlersdanlosgrrls  #migraines  #posturalorthostatictachycardiasyndrome  #anxiety  #depression  #mentalillness  #mentalhealth  #selfcare 
After 8 days of travel for medical appointments — and filling in the downtime with some educational sightseeing — we’ve completed this 2500-mile road trip! It’s so good to be home! I love spending time away with @barefootglenda and the kids, but I also missed home a lot more this time. I think it’s because this was the last “big thing” of a crazy 2017 for us. We’re out of our old house. We’re done with travel (having made four trips to DC totaling more than 6 weeks). Now we can just ... enjoy the holidays now. 🎄 I can’t explain how nice that sounds.
After 8 days of travel for medical appointments — and filling in the downtime with some educational sightseeing — we’ve completed this 2500-mile road trip! It’s so good to be home! I love spending time away with @barefootglenda and the kids, but I also missed home a lot more this time. I think it’s because this was the last “big thing” of a crazy 2017 for us. We’re out of our old house. We’re done with travel (having made four trips to DC totaling more than 6 weeks). Now we can just ... enjoy the holidays now. 🎄 I can’t explain how nice that sounds.
This mug made me laugh, I hope it makes you guys smile. A little dark humor is never a bad thing, and as a bit of a tea snob I just saw this mug and was all 'ooohhh cute' and then had a giggle to myself.
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Post seen on @chronically_lilyeleanor page
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#ehlersdanlossyndrome #ehlersdanlos #HEDS #EDSIII #chronicregionalpaindisorder #chronicillnesswarrior #chronicpain #genetics #funny #spooniehumor #spoonie #Mug #zoestribe
SAFFRANSPLÄTTAR med vaniljkvarg och barebells protein crisp 👌🏻 Lovely 😍
SAFFRANSPLÄTTAR med vaniljkvarg och barebells protein crisp 👌🏻 Lovely 😍
#MotivationMonday⠀
💜 It's so important that we remember all of these things. Whatever "your day" looks like... it's coming! ⠀
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Is there something you're working towards at the moment?⠀
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Is there something that's getting you down and you need to find the fight in you to not give up?⠀
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Let us know what this means to you! 👇⠀
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#hypermobility #hypermobilityspectrumdisorders #hsd #hypermobileEDS #positivehelpforhypermobility #theehlersdanlossyndromes #ehlersdanlos #edsawareness #eds #loeysdietzsyndrome #loeysdietz #loeysdietzaustralia #marfansyndrome #hypermobilityconnect #ctd #spoonie #zebra #chronicillness #pots #potsie #dysautonomia #chronicpain #chronicfatigue #mybendybody #gastroparesis #hopeforhypermobility⠀
#MotivationMonday ⠀ 💜 It's so important that we remember all of these things. Whatever "your day" looks like... it's coming! ⠀ ⠀ Is there something you're working towards at the moment?⠀ ⠀ Is there something that's getting you down and you need to find the fight in you to not give up?⠀ ⠀ Let us know what this means to you! 👇⠀ ⠀ ⠀ 🖤🖤🖤⠀ ⠀ ⠀ #hypermobility  #hypermobilityspectrumdisorders  #hsd  #hypermobileEDS  #positivehelpforhypermobility  #theehlersdanlossyndromes  #ehlersdanlos  #edsawareness  #eds  #loeysdietzsyndrome  #loeysdietz  #loeysdietzaustralia  #marfansyndrome  #hypermobilityconnect  #ctd  #spoonie  #zebra  #chronicillness  #pots  #potsie  #dysautonomia  #chronicpain  #chronicfatigue  #mybendybody  #gastroparesis  #hopeforhypermobility ⠀
Been to minor injuries and had an x-ray. Confirmed just a sprain and gave me this awesome splint. Feel less stressed now and can get on with working out how to manage and recovering from being awake most of the night due to the pain!

#sprain #ligaments #minorinjuriesunit #nhs #ilovethenhs #savethenhs #spoonieproblems #hypermobilityspectrumdisorder #hypermobilitysyndrome #ehlersdanlos #heds
You can see our new film ‘12-24’ today at 1pm #12to24 
#EDS #ehlersdanlossyndrome #ehlersdanlos
SPOONIE CHRISTMAS CHALLENGE: Day 11; Service dog or pets. 
ARE YOU READY FOR THIS?!?!
I'm a licensed veterinary technician. I'm a crazy animal lover. I have a lot of animals. Too many. 😂
1. Lia, 14 year old terrier mix. 
2. Un-named French bulldog puppy. She's 10 days old and suffers from a cleft palate and harelip. I tubefeed her every two hours. Still hoping she pulls through 🤞🏻
3. Sydney, 9 year old lab. Sweetest dog ever. 
4. Juniper, 3.5 year old Frenchie. Nearly died of mastitis a year and a half ago. She was signed over to the hospital I work at and I adopted her. 
5. Nina, 2.5 year old mini Aussie. My sister's pup. 
6. Fig. 4 month old Siamese. He was turned over to my work at three days old. Bottle fed him every 2 hours until he was old enough for kibble. Foster failure. 
SECOND PICTURE
1. Phillip, ~2 year old scaleless ratsnake. My Prince Charming.
2. Indigo, 4 year old chinchilla. Wasn't socialized by his previous owner. Now my lil buddy. Got him last March. 
3. Bentley, almost 19 year old Quarter Horse. Has navicular disease. Basically big pet. 
4. Mowgli, 3 year old domestic longhair. He's a blood donor, and has saved many lives!
5. Heidi, ~3 year old Persian. I met her while in tech school. She has congenital kidney issues, and couldn't be adopted to the public. Interestingly enough she was found as a stray with another Persian, and they both had microchips from Germany. 🤔
I'm a crazy person. I know.
SPOONIE CHRISTMAS CHALLENGE: Day 11; Service dog or pets. ARE YOU READY FOR THIS?!?! I'm a licensed veterinary technician. I'm a crazy animal lover. I have a lot of animals. Too many. 😂 1. Lia, 14 year old terrier mix. 2. Un-named French bulldog puppy. She's 10 days old and suffers from a cleft palate and harelip. I tubefeed her every two hours. Still hoping she pulls through 🤞🏻 3. Sydney, 9 year old lab. Sweetest dog ever. 4. Juniper, 3.5 year old Frenchie. Nearly died of mastitis a year and a half ago. She was signed over to the hospital I work at and I adopted her. 5. Nina, 2.5 year old mini Aussie. My sister's pup. 6. Fig. 4 month old Siamese. He was turned over to my work at three days old. Bottle fed him every 2 hours until he was old enough for kibble. Foster failure. SECOND PICTURE 1. Phillip, ~2 year old scaleless ratsnake. My Prince Charming. 2. Indigo, 4 year old chinchilla. Wasn't socialized by his previous owner. Now my lil buddy. Got him last March. 3. Bentley, almost 19 year old Quarter Horse. Has navicular disease. Basically big pet. 4. Mowgli, 3 year old domestic longhair. He's a blood donor, and has saved many lives! 5. Heidi, ~3 year old Persian. I met her while in tech school. She has congenital kidney issues, and couldn't be adopted to the public. Interestingly enough she was found as a stray with another Persian, and they both had microchips from Germany. 🤔 I'm a crazy person. I know.
🏥Inpatient day 7: omg it’s getting so close to being Christmas🎄!!!! I’m so excited!!! Also got a hospital bed finally so looking forward to trying and getting some better rest.
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I’ve been going through refeeding syndrome so for those that know it, know how crappy it feels . So haven’t been up to going on my phone at all. Been lying in bed all day.
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But I love my huge medical team!!!!! Omg I never thought I would say so but I am having the best experience I’ve ever had in my life. They actually know for now for sure this is not an eating disorder problem it’s a physical problem. Tests have confirmed and showed lots of inflammation, malabsorption, and so on. I’m even going to hang out with my GI dr and Nurse practitioner outside of the hospital! Haha hopefully get froyo or ice cream if they can get my pain under control which they are trying so hard to figure out but for now it’s hard. My body is so weak and my heart is so weak that they got really scared when they couldn’t wake me up from surgery and then my heart and respiratory system was dangerously low they even had a talk with just my parents that I basically was going to die! Did not know they were talking about it in the meeting I thought I was going to. Anyways, please if you pray or send positive vibes I’d appreciate it lots!! My heart and body are doing better little by little as they have added some meds back and increased my TPN really high now. Haven’t gained any real weight but my body is going to take time to get stronger. There’s so much more but I’m too tired to explain now. Love u all and I’m so so so sorry I haven’t had energy to message or comment any of you back but know I will and I appreciate each and everyone of your comments and messages! I don’t take for granted😘❤️🤗💕.
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#chronicillness #invisibleillness #chronicpain #gastroparesis #anorexiarecovery #anorexianervosarecovery #anorexia #edrecovery #eatingdisorderrecovery #eating #eatingdisorder #ehlersdanlossyndrome #ehlersdanlos #ibd #colitis #hope #strongnotskinny #sunday #sundayfunday #weekendvibes #strength #strong #holiday #holidayfun #christmas
🏥Inpatient day 7: omg it’s getting so close to being Christmas🎄!!!! I’m so excited!!! Also got a hospital bed finally so looking forward to trying and getting some better rest. ..... I’ve been going through refeeding syndrome so for those that know it, know how crappy it feels . So haven’t been up to going on my phone at all. Been lying in bed all day. ..... But I love my huge medical team!!!!! Omg I never thought I would say so but I am having the best experience I’ve ever had in my life. They actually know for now for sure this is not an eating disorder problem it’s a physical problem. Tests have confirmed and showed lots of inflammation, malabsorption, and so on. I’m even going to hang out with my GI dr and Nurse practitioner outside of the hospital! Haha hopefully get froyo or ice cream if they can get my pain under control which they are trying so hard to figure out but for now it’s hard. My body is so weak and my heart is so weak that they got really scared when they couldn’t wake me up from surgery and then my heart and respiratory system was dangerously low they even had a talk with just my parents that I basically was going to die! Did not know they were talking about it in the meeting I thought I was going to. Anyways, please if you pray or send positive vibes I’d appreciate it lots!! My heart and body are doing better little by little as they have added some meds back and increased my TPN really high now. Haven’t gained any real weight but my body is going to take time to get stronger. There’s so much more but I’m too tired to explain now. Love u all and I’m so so so sorry I haven’t had energy to message or comment any of you back but know I will and I appreciate each and everyone of your comments and messages! I don’t take for granted😘❤️🤗💕. ...... #chronicillness  #invisibleillness  #chronicpain  #gastroparesis  #anorexiarecovery  #anorexianervosarecovery  #anorexia  #edrecovery  #eatingdisorderrecovery  #eating  #eatingdisorder  #ehlersdanlossyndrome  #ehlersdanlos  #ibd  #colitis  #hope  #strongnotskinny  #sunday  #sundayfunday  #weekendvibes  #strength  #strong  #holiday  #holidayfun  #christmas 
🐴 Quand tu veux faire un bisous à ton poney mais que son côté Thug ressort et qu'il te fou un vent... Ça c'est fait 😂😂
Sacré Gambas 🍤
🐴 Quand tu veux faire un bisous à ton poney mais que son côté Thug ressort et qu'il te fou un vent... Ça c'est fait 😂😂 Sacré Gambas 🍤
2017 January 24th, just over a month postop from a large scapula/spine surgery, and a shoulder pinning on the other side and I get admitted for unexpected emergency surgery to have the pins in my L shoulder removed because the pins were starting to break the skin, and then it did (swipe left for xray a couple days prior). This is a big risk for infection so the ER kept me in an isolated room. My body wasn't agreeing with the pins at all. They were making me feel sick. For over a week I called my surgeon, and tried to see my old surgeon here in Colorado. At that point I was inquiring if I was getting an infection because I didn't feel good and the skin was discolored. On January 24th I ended up having surgery in Colorado to have the pins removed because that's the state I was in, and my surgeon was out of town for one week. Fortunately the shoulder surgeon on-call knew my surgeon in Minneaota and formulated a plan with him; remove the pins and antibiotics for 10 days to prevent infection. I was definitely quite a sight walking into the ER with the spine immobilization, and shoulder braces. The shoulder surgeon said the pins came out extremely easy. He didn't have to tug at any of them. Good thing I went in. *
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#orthopedicsurgery #orthopedics #shoulderortho #shoulderorthopedic #shouldersurgery #steadman #necksurgery #spinesurgery #scapula #surgery #immobilization #bracing #emergencyroom #nevergiveup #persevere #pins #xray #emergencysurgery #ehlersdanlos #ehlersdanlossyndrome #postop #recovery #ouch #Colorado #vailvalley #spoonie #medicalzebra #zebrastrong #fighter #strong
2017 January 24th, just over a month postop from a large scapula/spine surgery, and a shoulder pinning on the other side and I get admitted for unexpected emergency surgery to have the pins in my L shoulder removed because the pins were starting to break the skin, and then it did (swipe left for xray a couple days prior). This is a big risk for infection so the ER kept me in an isolated room. My body wasn't agreeing with the pins at all. They were making me feel sick. For over a week I called my surgeon, and tried to see my old surgeon here in Colorado. At that point I was inquiring if I was getting an infection because I didn't feel good and the skin was discolored. On January 24th I ended up having surgery in Colorado to have the pins removed because that's the state I was in, and my surgeon was out of town for one week. Fortunately the shoulder surgeon on-call knew my surgeon in Minneaota and formulated a plan with him; remove the pins and antibiotics for 10 days to prevent infection. I was definitely quite a sight walking into the ER with the spine immobilization, and shoulder braces. The shoulder surgeon said the pins came out extremely easy. He didn't have to tug at any of them. Good thing I went in. * * * #orthopedicsurgery  #orthopedics  #shoulderortho  #shoulderorthopedic  #shouldersurgery  #steadman  #necksurgery  #spinesurgery  #scapula  #surgery  #immobilization  #bracing  #emergencyroom  #nevergiveup  #persevere  #pins  #xray  #emergencysurgery  #ehlersdanlos  #ehlersdanlossyndrome  #postop  #recovery  #ouch  #Colorado  #vailvalley  #spoonie  #medicalzebra  #zebrastrong  #fighter  #strong 
If I am ever asked about two things I hate in life it would be #maleprivilege and #toxicmasculinity in reality it’s probably myself. I hate my #chins and yes there are chins and my #fatarms they are parts of me I can’t disguise. I was born with a multitude of illnesses I don’t get to change but what I will change is the way I talk about myself. I matter. My body matters.  I learn everyday to value those parts of me a little more.  I am #BEAUTIFUL #IHAVEACUNT #thebodyconfidencerevolution #tbcr #effyourbeautystandards #myfacemyrules #myarmsmyhate #sassitude #authenticself #mybodymychoice #mybodymyrules #bodyconfidence #notmyillness #fibromyalgiafighter #ehlersdanlos #fatbabe
If I am ever asked about two things I hate in life it would be #maleprivilege  and #toxicmasculinity  in reality it’s probably myself. I hate my #chins  and yes there are chins and my #fatarms  they are parts of me I can’t disguise. I was born with a multitude of illnesses I don’t get to change but what I will change is the way I talk about myself. I matter. My body matters. I learn everyday to value those parts of me a little more. I am #BEAUTIFUL  #IHAVEACUNT  #thebodyconfidencerevolution  #tbcr  #effyourbeautystandards  #myfacemyrules  #myarmsmyhate  #sassitude  #authenticself  #mybodymychoice  #mybodymyrules  #bodyconfidence  #notmyillness  #fibromyalgiafighter  #ehlersdanlos  #fatbabe 
I am thoroughly enjoying my time coaching in Florida, but I miss this fluff ball like crazy! Isn’t she so cute! My family sent me this picture tonight as they were decorating the tree. 😍🎄🎁 happy #shibasunday everyone!

#livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #futuremrs #livingtheceolife .
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#rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure

#eds #ehlersdanlos #ehlersdanlossyndrome #edstype3

#lifestyle #lifestyleblog #blogger #blog #happiness

#careerconsultant #dancersost #dancecoach #dancemedicine #dancemedicinecoach #dancept #balletcoach #privatedancecoach
I am thoroughly enjoying my time coaching in Florida, but I miss this fluff ball like crazy! Isn’t she so cute! My family sent me this picture tonight as they were decorating the tree. 😍🎄🎁 happy #shibasunday  everyone! #livingthechronicillnesslife  #livingthevow  #amnesiawontwin  #spoonie  #futuremrs  #livingtheceolife  . . . #rsd  #crps  #rsdcrps  #rsdcrpsawareness  #rsdcrps4acure  #eds  #ehlersdanlos  #ehlersdanlossyndrome  #edstype3  #lifestyle  #lifestyleblog  #blogger  #blog  #happiness  #careerconsultant  #dancersost  #dancecoach  #dancemedicine  #dancemedicinecoach  #dancept  #balletcoach  #privatedancecoach 
Libs loved his first time at the zoo! We did some training there in preparation for our Disney trip in four days! He even got to pick out a giant wild hog toy. #cheyennemountainzoo #zoo #coloradodogs #dogsofcolorado #servicedog #servicedogintraining #disneydog #medicalalert #uccs #dogsofdenver #dogsofcoloradosprings #nursingschool #crohnsdisease #posturalorthostatictachycardiasyndrome #ehlersdanlos #invisibledisability #zoo #rheumatoidarthritis #spinalmuscularatrophy #hemiplegicmigraines
Libs loved his first time at the zoo! We did some training there in preparation for our Disney trip in four days! He even got to pick out a giant wild hog toy. #cheyennemountainzoo  #zoo  #coloradodogs  #dogsofcolorado  #servicedog  #servicedogintraining  #disneydog  #medicalalert  #uccs  #dogsofdenver  #dogsofcoloradosprings  #nursingschool  #crohnsdisease  #posturalorthostatictachycardiasyndrome  #ehlersdanlos  #invisibledisability  #zoo  #rheumatoidarthritis  #spinalmuscularatrophy  #hemiplegicmigraines 
Hello lovelies! Sorry I haven't been very active here. This week is finals week, and then I'll be home for a month, hopefully working on my health. I've neglected it this semester and felt the effects. How is everyone doing? #ehlersdanlos #ehlersdanlossydrome
Hello lovelies! Sorry I haven't been very active here. This week is finals week, and then I'll be home for a month, hopefully working on my health. I've neglected it this semester and felt the effects. How is everyone doing? #ehlersdanlos  #ehlersdanlossydrome 
Cause im still obsessed with this shoot and can't wait to be back in L.A this week 😁
Photo by - @brianaberglund •
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#weekend #sunday #night #throwback #losangeles #ocean #swimsuit #photoshoot #photography #instaphoto #ehlersdanlos #ehlersdanlossyndrome #effyourbeautystandards #inmyskiniwin #nowrongway #loveyourbody #loveyourlines #selflove #imperfections #beauty #inspire #vibes #embrace #beyou #bebeautiful #perfectlyimperfect  #imperfections #model #real #ilovemybody #bodypositive
Cause im still obsessed with this shoot and can't wait to be back in L.A this week 😁 Photo by - @brianaberglund • • • • • • • • • • • #weekend  #sunday  #night  #throwback  #losangeles  #ocean  #swimsuit  #photoshoot  #photography  #instaphoto  #ehlersdanlos  #ehlersdanlossyndrome  #effyourbeautystandards  #inmyskiniwin  #nowrongway  #loveyourbody  #loveyourlines  #selflove  #imperfections  #beauty  #inspire  #vibes  #embrace  #beyou  #bebeautiful  #perfectlyimperfect  #imperfections  #model  #real  #ilovemybody  #bodypositive 
Today I ripped an apple in half with my bare hands. Other than that it wasn't too eventful. I woke up in more pain than usual and that sucked but I stayed in my pj pants all day. I did some work for my job and then chilled. Nicole's last final is tomorrow and then she's done for the semester!
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Image description: Abby smiling, holding up two halves of an apple her face partially covered by one half.
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#eds #ehlersdanlos #ehlersdanlossyndrome #chronicillness #chronicallyill #spoonie #rsd #crps #complexregionalpainsyndrome #reflexsympatheticdystrophy #POTS #POTsie #posturalorthostatictachycardia #tachycardia #pain #disabled #disability #edstype3 #dysautonomia #edsawareness #EDSZebra #migraines #chronicfatigue #chronicmigraines #chronicpain #100InvisibleDays #wheelchair #wheelchairuser #Day51
Today I ripped an apple in half with my bare hands. Other than that it wasn't too eventful. I woke up in more pain than usual and that sucked but I stayed in my pj pants all day. I did some work for my job and then chilled. Nicole's last final is tomorrow and then she's done for the semester! . . . Image description: Abby smiling, holding up two halves of an apple her face partially covered by one half. . . . #eds  #ehlersdanlos  #ehlersdanlossyndrome  #chronicillness  #chronicallyill  #spoonie  #rsd  #crps  #complexregionalpainsyndrome  #reflexsympatheticdystrophy  #POTS  #POTsie  #posturalorthostatictachycardia  #tachycardia  #pain  #disabled  #disability  #edstype3  #dysautonomia  #edsawareness  #EDSZebra  #migraines  #chronicfatigue  #chronicmigraines  #chronicpain  #100InvisibleDays  #wheelchair  #wheelchairuser  #Day51 
Today has been kinda rough and, as childish as it may seem, snuggling with some comfort objects is never a bad idea 😉 got this little puppy after my colonoscopy in the hospital a year ago and it always warms my heart knowing it was handmade with love. Speaking of a colonoscopy, my stomach has been really acting up today. I haven’t had an appetite at all, I’m been super full, and it feels like food is just not digesting... ugh! #ehlersdanlos #eds #ehlersdanlossyndrome #zebrastrong #zebrawarrior
Today has been kinda rough and, as childish as it may seem, snuggling with some comfort objects is never a bad idea 😉 got this little puppy after my colonoscopy in the hospital a year ago and it always warms my heart knowing it was handmade with love. Speaking of a colonoscopy, my stomach has been really acting up today. I haven’t had an appetite at all, I’m been super full, and it feels like food is just not digesting... ugh! #ehlersdanlos  #eds  #ehlersdanlossyndrome  #zebrastrong  #zebrawarrior 
lounging
lounging
I love this picture of my boy! We didn’t get to look at houses thanks to the snow and the places we picked the ads turned out to me let’s just say “misinformed”, but we got to spend time together and get away from town for a couple much needed days.
#servicedog #servicedogintraining #sdit #snow #spoonie #invisibleillnesses #ehlersdanlossyndrome #fibromyalgia #eds #falkorthesd #ehlersdanlos #chronicillness #autoimmunedisease #poodle #standardpoodle #standardpoodlesofinstagram #househunting #doginsnow #winterwonderland
I love this picture of my boy! We didn’t get to look at houses thanks to the snow and the places we picked the ads turned out to me let’s just say “misinformed”, but we got to spend time together and get away from town for a couple much needed days. #servicedog  #servicedogintraining  #sdit  #snow  #spoonie  #invisibleillnesses  #ehlersdanlossyndrome  #fibromyalgia  #eds  #falkorthesd  #ehlersdanlos  #chronicillness  #autoimmunedisease  #poodle  #standardpoodle  #standardpoodlesofinstagram  #househunting  #doginsnow  #winterwonderland 
Despite the health challenges, I still get out every once in a while. My parents are visiting, and we went to #rockymountainnationalpark for the day. Here I am hiking in my wheelchair using a Freewheel. @go_freewheel It lifts my castors off the ground and gives me a much bigger front wheel. It makes it so much easier to push on most uneven surfaces like trails or grass. It’s also great on sidewalks, especially since so many are uneven in Denver. Thanks, @boulder_service_dog for showing me this! #zebralife #ehlersdanlos #ehlersdanlosgrrrls #cripplelife #wheelchairlife #craniocervicalinstability #mastcellactivationsyndrome #gofreewheel #spinalcordinjury #wheelchairhiking
Despite the health challenges, I still get out every once in a while. My parents are visiting, and we went to #rockymountainnationalpark  for the day. Here I am hiking in my wheelchair using a Freewheel. @go_freewheel It lifts my castors off the ground and gives me a much bigger front wheel. It makes it so much easier to push on most uneven surfaces like trails or grass. It’s also great on sidewalks, especially since so many are uneven in Denver. Thanks, @boulder_service_dog for showing me this! #zebralife  #ehlersdanlos  #ehlersdanlosgrrrls  #cripplelife  #wheelchairlife  #craniocervicalinstability  #mastcellactivationsyndrome  #gofreewheel  #spinalcordinjury  #wheelchairhiking 
Look what I got today!!!!! I'm so excited! It's a quickie I found on Craigslist! I'm so excited to have it on hand for days when walking seems impossible and for my upcoming surgeries! It will help so much with mobility and independence because I won't be stuck at home when I don't feel good😊 👍#potssyndrome #pots#dysautonomia #dysautonomiaawarness #eds#ehlersdanlossyndrome #ehlersdanlos #spoonie#wheelchair
🚫NEGATIVITY.
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Don’t know how many nights in a row... I seriously need sleep. My nerves and muscles go spastic because of pain and exhaustion. Not a good thing. Not a pleasant thing. I’ve got horrendous contractions in my lower back and it’s driving me insane. Hurts so bad. Muscle relaxers doesn’t work. Only sleep would fix that now. Fuck EDS. 
When I do fall asleep I dream horrible nightmares. Wo-hoo. 
Trying to stay positive but it’s getting harder when you’re always dead tired. 
Again, #fuckeds. .
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#ehlersdanlos #fibromyalgia #pots #cantsleep #chroniclife #zebrastrong 🦓
🚫NEGATIVITY. . . Don’t know how many nights in a row... I seriously need sleep. My nerves and muscles go spastic because of pain and exhaustion. Not a good thing. Not a pleasant thing. I’ve got horrendous contractions in my lower back and it’s driving me insane. Hurts so bad. Muscle relaxers doesn’t work. Only sleep would fix that now. Fuck EDS. When I do fall asleep I dream horrible nightmares. Wo-hoo. Trying to stay positive but it’s getting harder when you’re always dead tired. Again, #fuckeds . . . #ehlersdanlos  #fibromyalgia  #pots  #cantsleep  #chroniclife  #zebrastrong  🦓
I made 5 boxes and 1 bag of baby stuff to give out at a pantry for ones in need. Nail clippers, new clothes, baby bottles, thermometers, aspiratirs, wipes, diapers, a stuffed animal, etc. I love making care packages! It’s the season! I’ve made 6 other ‘beauty boxes’ and I have one kids box ready to give as well. Most of this stuff I get for free. #tistheseason #christmastree #christmasdecorations #christmas2017 #anorexia #eatingdisorder #eatingdisorderrecovery #ehlersdanlos #zebra #strongnotskinny #medicine #fitchicks #fitchick #spoonie #pain #instaparty #instagram #presents #kindness #kindnessmatters
I made 5 boxes and 1 bag of baby stuff to give out at a pantry for ones in need. Nail clippers, new clothes, baby bottles, thermometers, aspiratirs, wipes, diapers, a stuffed animal, etc. I love making care packages! It’s the season! I’ve made 6 other ‘beauty boxes’ and I have one kids box ready to give as well. Most of this stuff I get for free. #tistheseason  #christmastree  #christmasdecorations  #christmas2017  #anorexia  #eatingdisorder  #eatingdisorderrecovery  #ehlersdanlos  #zebra  #strongnotskinny  #medicine  #fitchicks  #fitchick  #spoonie  #pain  #instaparty  #instagram  #presents  #kindness  #kindnessmatters 
Starting my week off with a med refill 💪🏼 Taking medication is often so stigmatized, as if what’s “wrong” with our bodies is our own fault [wrongness itself is a topic for a different day]. So we begin to believe what people say, trying to avoid medication and “tough it out” as if willpower were enough to cure. If your medications improve your quality of life in any way, TAKE THEM. There is no shame in using every tool to feel better. You deserve it - don’t let anyone tell you different 💊💊💊 #choosehappiness #takeyourmeds
Starting my week off with a med refill 💪🏼 Taking medication is often so stigmatized, as if what’s “wrong” with our bodies is our own fault [wrongness itself is a topic for a different day]. So we begin to believe what people say, trying to avoid medication and “tough it out” as if willpower were enough to cure. If your medications improve your quality of life in any way, TAKE THEM. There is no shame in using every tool to feel better. You deserve it - don’t let anyone tell you different 💊💊💊 #choosehappiness  #takeyourmeds 
I'm going to partake in this! Time to play catch up:
1. Ehlers-Danlos, dysautonomia, depression, anxiety, irritable bowel syndrome, migraines, subluxed disc (C6), carpel tunnel syndrome, + more....
2. Essential oils
3. People can be part time wheelchair users! Not everyone is confined to a chair. 
4. Netflix and HBO
5. Gatorade Cool Blue
6. "strength comes from within"
7. Sweatpants, Tens unit, pain meds
8. Just one? Hmmm. Methadone. 
9. Understanding.
10. PAIN
I'm going to partake in this! Time to play catch up: 1. Ehlers-Danlos, dysautonomia, depression, anxiety, irritable bowel syndrome, migraines, subluxed disc (C6), carpel tunnel syndrome, + more.... 2. Essential oils 3. People can be part time wheelchair users! Not everyone is confined to a chair. 4. Netflix and HBO 5. Gatorade Cool Blue 6. "strength comes from within" 7. Sweatpants, Tens unit, pain meds 8. Just one? Hmmm. Methadone. 9. Understanding. 10. PAIN
Reaction. It took 2.5 hours before she finally stopped alerting and has laid down to nap. 😢 #servicedog #medicalalertdog #mastcelldisease #benadryl #raredisease #ehlersdanlos #dysautonomia #chronicillness #mastcellactivationsyndrome #posturalorthostatictachycardiasyndrome #goldendoodle
THIS is something I struggle with. 👆🏼 Everyone takes time to sit down, take a deep breath, and rest/watch Netflix/prioritize self-care (it doesn’t have to look luxurious) every now and then. The issue is that when someone with a chronic illness is doing that, it’s often absolutely necessary like water and oxygen. It may look like rest but it doesn’t feel rejuvenating. In the same way brushing your teeth is necessary but doesn’t feel like restful self-care, that’s what “rest” can be for us. If I don’t take a break and nap or do nothing I will be in the hospital in a day or two. My rest is not restful, it’s a chore, it’s recovery or preventing the need to recover. The problem is this: we also deserve refreshing rest but we don’t want to feel lazy and since we’re already “behind” in life, we use this time to be productive and attempt to “catch up.” So we have time to recover because we absolutely need to in order to survive, but we feel lazy to also prioritize self-care because we feel like we’re always “resting” (or look like we are to the outside world) when in reality we never prioritize the rest we deserve, and healthy people have access to without guilt, because then we’d hardly ever get anything done.
THIS is something I struggle with. 👆🏼 Everyone takes time to sit down, take a deep breath, and rest/watch Netflix/prioritize self-care (it doesn’t have to look luxurious) every now and then. The issue is that when someone with a chronic illness is doing that, it’s often absolutely necessary like water and oxygen. It may look like rest but it doesn’t feel rejuvenating. In the same way brushing your teeth is necessary but doesn’t feel like restful self-care, that’s what “rest” can be for us. If I don’t take a break and nap or do nothing I will be in the hospital in a day or two. My rest is not restful, it’s a chore, it’s recovery or preventing the need to recover. The problem is this: we also deserve refreshing rest but we don’t want to feel lazy and since we’re already “behind” in life, we use this time to be productive and attempt to “catch up.” So we have time to recover because we absolutely need to in order to survive, but we feel lazy to also prioritize self-care because we feel like we’re always “resting” (or look like we are to the outside world) when in reality we never prioritize the rest we deserve, and healthy people have access to without guilt, because then we’d hardly ever get anything done.
from @adventureous.spoonie - ''remember as you go throughout your day today, you are enough. 
you are loved 
you are brave
you are valued 
you are chosen 
you are set apart 
even on your worst days. 
this is a reminder that i need to often! 
#ehlersdanlossyndrome #eds #ehlersdanlos #pots #potsyndrome #posturalorthostatictachycardiasyndrome #potsie #warrior #spinalinstability #sick #spoonie #chronicillness #chronicpain #chronicfatigue.'' .
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#zoestribe
I hate sharing this stuff on my personal instagram, but at the same time it's the only place I really get to talk to other people going through similar things. Part of the reason I hate posting it is the same reason I am posting it - I have zero idea how to be "disabled". I know no one really ever knows or expects it...but what I mean is the ONLY thing consistent in my life, has been the fact that I am fiercely independent. I'd rather do everything on my own, because it's best not to rely on anyone but you. I keep telling my doctor we have to be missing something....some kind of awful something that's going to kill me any day because I am SO EXHAUSTED just from waking up. I now have a permanent handicap placard. A wheelchair. Infusion nurses I haven't called back because I'm stubborn. I have been consistently running 3 miles every morning before work because I refuse to let my heart become deconditioned and in the back of my head, I thought that would jump start me. That I'd build strength back and beat the odds. But my arms shake if I hold them up, and my legs shake all day putting weight on them. All of this muscle I once had is just giving up on me and its like the more I try to get it back, the weaker I wind up. I don't know whether to rest when I'm tired (since its ALWAYS) or just push and push. How do you just deteriorate at 29? I'm at a loss. I'm just venting. The fatigue is literally daunting. The pain is out of control but I could handle just pain...the fatigue and ridiculous heart rates and blood pressure is out of my control. Literally. Constantly. I have a few specialists in Boston I will be seeing for POTS & EDS which I'm grateful for but at the same time...I know theres not much relief options. What can anyone recommend for fatigue and a neck constantly made of cement? Or adjusting to just not being a human anymore. #eds #ehlersdanlos #ehlersdanlossyndrome #POTS #posturalorthostatictachycardiasyndrome  #dysautonomia #dysmotility #PKD #polycystickidneydisease #occipitalneuralgia #chronicillness #spoonie #thoracicoutletsyndrome
I hate sharing this stuff on my personal instagram, but at the same time it's the only place I really get to talk to other people going through similar things. Part of the reason I hate posting it is the same reason I am posting it - I have zero idea how to be "disabled". I know no one really ever knows or expects it...but what I mean is the ONLY thing consistent in my life, has been the fact that I am fiercely independent. I'd rather do everything on my own, because it's best not to rely on anyone but you. I keep telling my doctor we have to be missing something....some kind of awful something that's going to kill me any day because I am SO EXHAUSTED just from waking up. I now have a permanent handicap placard. A wheelchair. Infusion nurses I haven't called back because I'm stubborn. I have been consistently running 3 miles every morning before work because I refuse to let my heart become deconditioned and in the back of my head, I thought that would jump start me. That I'd build strength back and beat the odds. But my arms shake if I hold them up, and my legs shake all day putting weight on them. All of this muscle I once had is just giving up on me and its like the more I try to get it back, the weaker I wind up. I don't know whether to rest when I'm tired (since its ALWAYS) or just push and push. How do you just deteriorate at 29? I'm at a loss. I'm just venting. The fatigue is literally daunting. The pain is out of control but I could handle just pain...the fatigue and ridiculous heart rates and blood pressure is out of my control. Literally. Constantly. I have a few specialists in Boston I will be seeing for POTS & EDS which I'm grateful for but at the same time...I know theres not much relief options. What can anyone recommend for fatigue and a neck constantly made of cement? Or adjusting to just not being a human anymore. #eds  #ehlersdanlos  #ehlersdanlossyndrome  #POTS  #posturalorthostatictachycardiasyndrome  #dysautonomia  #dysmotility  #PKD  #polycystickidneydisease  #occipitalneuralgia  #chronicillness  #spoonie  #thoracicoutletsyndrome 
My choir binder was too heavy yesterday and I broke today :( so have a picture of my biggest supporter. This is the first picture I took of my baby girl. I had no idea then how much help she would be and how much better she would make my life. .
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#reythestarwarskitten #kitten #cute #cat #rescueanimal #rescuekitten #adopt #baby #small #tiny #flop #ehlersdanlos #painday #flareup #fibrofighter #fibro #fibroflare
Finally have blue hair again 💙I need to curl up and chill out and fight this nausea 😓🙈. I’ve had a somewhat productive day , and that includes dying my hair .
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#midnightbluehair #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlostype3
Snow time!!! ☃️
Snow time!!! ☃️
First day of my leave of absence from work. I'm gonna miss all my crazy coworkers, but I need this time to recuperate. My body is so tired.

I'll be back at the casino before I know it, hopefully feeling a LOT better than before. 😊
First day of my leave of absence from work. I'm gonna miss all my crazy coworkers, but I need this time to recuperate. My body is so tired. I'll be back at the casino before I know it, hopefully feeling a LOT better than before. 😊
Day 10: which symptom would I get rid of? Fatigue/weakness. This is the thing that effects me most and leaves me house ridden. I cannot walk sometimes, or even sit up. The fatigue makes getting up stairs a struggle. It's by far my worst symptom most days. In fact later today I am going to look at a Quickie Wheelchair I found on Craigslist in hopes of giving me some more freedom even with all my weakness and fatigue. Maybe that will help me with weeks like this week where I haven't really been able to leave the house. (My one attempt was to walmart, but the electric buggy was broken.) #spoonie#dysautonomia #POTS#potssyndrome #dysautonomiaawareness #eds#ehlersdanlossyndrome #ehlersdanlos #chronicallyawesome #chronicallyill#chronicillness#spooniechristmaschallenge
Day 10: which symptom would I get rid of? Fatigue/weakness. This is the thing that effects me most and leaves me house ridden. I cannot walk sometimes, or even sit up. The fatigue makes getting up stairs a struggle. It's by far my worst symptom most days. In fact later today I am going to look at a Quickie Wheelchair I found on Craigslist in hopes of giving me some more freedom even with all my weakness and fatigue. Maybe that will help me with weeks like this week where I haven't really been able to leave the house. (My one attempt was to walmart, but the electric buggy was broken.) #spoonie #dysautonomia  #POTS #potssyndrome  #dysautonomiaawareness  #eds #ehlersdanlossyndrome  #ehlersdanlos  #chronicallyawesome  #chronicallyill #chronicillness #spooniechristmaschallenge 
Just finished coloring Pages for EDS awareness.  This item is available for sale $6.00 each + shipping/handling.  Fun for kids and adults.😊 #ehlersdanlossyndrome #eds #ehlersdanlos
Day 10: most owned author. When I was younger I loved Jacqueline Wilson so I still have them as I now read them to my little sister 
#DeckTheShelves #jacquelinewilson  #chronicillness #ehlersdanlos #posturalorthostatictachycardia #spoonie #chronicfatigue #pots #eds #invisibledisability
PIE 🥧 Fully enjoyed having this meal the other night!
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Clive’s Lentil & Olive Pie (vegan, gluten & soy free) Sweet Potato Chips, Sweetcorn, handful of Spinach & Alfalfa Sprouts 🌱🌽🥧🌽🌱
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Love these pies! This flavour was really yummy...although I think the Aloo Gobi one is my favourite ☺️ I tend to have one of these in the freezer for when I fancy a good pie 😉
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PIE 🥧 Fully enjoyed having this meal the other night! • Clive’s Lentil & Olive Pie (vegan, gluten & soy free) Sweet Potato Chips, Sweetcorn, handful of Spinach & Alfalfa Sprouts 🌱🌽🥧🌽🌱 • Love these pies! This flavour was really yummy...although I think the Aloo Gobi one is my favourite ☺️ I tend to have one of these in the freezer for when I fancy a good pie 😉 • #whatveganseat  #veganfood  #veganeats  #vegan  #govegan  #vegansofinstagram  #vegansofig  #yummyfood  #glutenfree  #glutenfreevegan  #veganpie  #glutenfreeveganpie  #invisibleillness  #chronicillness  #chronicpain  #chronicfatigue  #mecfs  #ehlersdanlos  #ehlersdanlossyndrome  #ehlersdanlostype3  #hypermobileehlersdanlossyndrome  #hypermobilitysyndrome  #hypermobility  #hypermobilityspectrumdisorders  #posturalorthostatictachycardiasyndrome  #spoonielife  #spoonie