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So very thankful I am tolerating and doing well on my new feeding tube formula! I am no longer anemic and it seems my body absorbs the semi-elemental formula best. Now we pray insurance will cover! It's expensive 😟 Keep fighting. Keep moving forward. #bebrave #bestrong #chronicovercomer #livelifetothefullest #keepmovingforward #chronicillness #invisibleillness #eds #ehlersdanlos #ehlersdanlossyndrome #dysautonomia #pots #myastheniagravis #chronicwarrior #spoonie #spoonielife #zebrastrong #psoriaticarthritis #youdontlooksick #gastroparesis #mastcellactivationsyndrome #mcad #mastcelldisorder #notgoingdownwithoutafight #tubie #feedingtube
So very thankful I am tolerating and doing well on my new feeding tube formula! I am no longer anemic and it seems my body absorbs the semi-elemental formula best. Now we pray insurance will cover! It's expensive 😟 Keep fighting. Keep moving forward. #bebrave  #bestrong  #chronicovercomer  #livelifetothefullest  #keepmovingforward  #chronicillness  #invisibleillness  #eds  #ehlersdanlos  #ehlersdanlossyndrome  #dysautonomia  #pots  #myastheniagravis  #chronicwarrior  #spoonie  #spoonielife  #zebrastrong  #psoriaticarthritis  #youdontlooksick  #gastroparesis  #mastcellactivationsyndrome  #mcad  #mastcelldisorder  #notgoingdownwithoutafight  #tubie  #feedingtube 
#cbd #mcad #skincare #skin #mastocytosis #cutaneous 
Testing in progress for new cbd skin care.
This is how my leash setup works in my wheelchair! I use our amazing @akracreations traffic lead and pull strap and hook it on a carabiner on my chair. This allows me to give Gnar a short enough leash that won't drag or get caught in my wheels and let him out for potty breaks and for narrow doorways! This is the best setup I've ever tried and I highly recommend trying this if you are in a chair with your sd! •••
Check out @cypressavenueworks for awesome paracord and sensory friendly gear!
15% off: CAWFRIENDSANDFAMILY
•••
#medicalalertservicedog #servicedog #spoonie #chronicillness #ptsdservicedog #servicedog #servicedogintraining #spoonie #ptsd #invisibleillness #chronicillness #tasktrained #ptsd #ehlersdanlossyndrome #multiplesystematrophy #posturalorthostatictachycardiasyndrome #pots #EDS #pnes #mcad #psoriaticarthropathy #multiplesystematrophy #autismservicedog #neurodivergent #mobilityservicedog #chewyinfluencer #Banetheservicedane #servicelegendgnar #cypressavenueworks #cawambassadors #cawsensoryfriendlyteam #purplepoodlemodels
This is how my leash setup works in my wheelchair! I use our amazing @akracreations traffic lead and pull strap and hook it on a carabiner on my chair. This allows me to give Gnar a short enough leash that won't drag or get caught in my wheels and let him out for potty breaks and for narrow doorways! This is the best setup I've ever tried and I highly recommend trying this if you are in a chair with your sd! ••• Check out @cypressavenueworks for awesome paracord and sensory friendly gear! 15% off: CAWFRIENDSANDFAMILY ••• #medicalalertservicedog  #servicedog  #spoonie  #chronicillness  #ptsdservicedog  #servicedog  #servicedogintraining  #spoonie  #ptsd  #invisibleillness  #chronicillness  #tasktrained  #ptsd  #ehlersdanlossyndrome  #multiplesystematrophy  #posturalorthostatictachycardiasyndrome  #pots  #EDS  #pnes  #mcad  #psoriaticarthropathy  #multiplesystematrophy  #autismservicedog  #neurodivergent  #mobilityservicedog  #chewyinfluencer  #Banetheservicedane  #servicelegendgnar  #cypressavenueworks  #cawambassadors  #cawsensoryfriendlyteam  #purplepoodlemodels 
The new transparent Daniel Smith Watercolor ground really smudged either the Pencil lines or the LePen marks 🤔 But I surprisingly like it. If the transparent watercolor ground keeps reacting like this, I’ll try going back to using the Titanium buff version. I like the Titanium buff colored ground cuz it makes the paper look “classic storybook old” imo. If I were to use that with the comic, it would make it feel like an ancient tale (even tho it’s far-futuristic sci fi 😂🤣) Kinda liking the messier watercolor painted look. It’s faster and I don’t need to worry about getting super smooth blends 😊🙏 AmonRa, Aether, and Hana o course! I like the top left doodle most ~ Amon and Hana playing guitar ❤️ #amonra #hanaamaterasu #anime #manga #aether #comicart #comics #artoftheday #artistsofig #mcad #oc #ocs #kawaii #draw #draws #drawing #drawings #doodle #doodles #sketch #sketches #artoninstagram #artistoninstagram #artistsofinstagram #instaart #instaartist #watercolor #ink #inked #inktober
The new transparent Daniel Smith Watercolor ground really smudged either the Pencil lines or the LePen marks 🤔 But I surprisingly like it. If the transparent watercolor ground keeps reacting like this, I’ll try going back to using the Titanium buff version. I like the Titanium buff colored ground cuz it makes the paper look “classic storybook old” imo. If I were to use that with the comic, it would make it feel like an ancient tale (even tho it’s far-futuristic sci fi 😂🤣) Kinda liking the messier watercolor painted look. It’s faster and I don’t need to worry about getting super smooth blends 😊🙏 AmonRa, Aether, and Hana o course! I like the top left doodle most ~ Amon and Hana playing guitar ❤️ #amonra  #hanaamaterasu  #anime  #manga  #aether  #comicart  #comics  #artoftheday  #artistsofig  #mcad  #oc  #ocs  #kawaii  #draw  #draws  #drawing  #drawings  #doodle  #doodles  #sketch  #sketches  #artoninstagram  #artistoninstagram  #artistsofinstagram  #instaart  #instaartist  #watercolor  #ink  #inked  #inktober 
Went to home depot today for some confidence building with @servicedogoliver ❤️ the boys did so great! Gnar worked in his new ruffwear boots and his RexSpecs goggles for most of the outing. We worked on generalizing his tug command which he learned yesterday 😂 he had no problem doing it on the cabinets and with a different tug! We also worked on push, retrievals, carrying items, lip picking, under, recalls, climbing on surfaces, loud clanging noises, and heeling! BCs are notoriously sound sensitive, and Gnar is no exception! You can see him spook at a noise in the second video, but his recovery time and focus has improved immensely. He is learning that loud noises mean focus and cookies, and he even handled a loud clanging cart being pushed by us without spooking and did a recall across several carts! His confidence is growing daily, and he learns so fast. Ive been ridiculously impressed by how much more confident he is and how much he trusts me already to keep him safe. •••
Check out @cypressavenueworks for awesome paracord and sensory friendly gear!
15% off: CAWFRIENDSANDFAMILY
•••
#medicalalertservicedog #servicedog #spoonie #chronicillness #ptsdservicedog #servicedog #servicedogintraining #spoonie #ptsd #invisibleillness #chronicillness #tasktrained #ptsd #ehlersdanlossyndrome #multiplesystematrophy #posturalorthostatictachycardiasyndrome #pots #EDS #pnes #mcad #psoriaticarthropathy #multiplesystematrophy #autismservicedog #neurodivergent #mobilityservicedog #chewyinfluencer #Banetheservicedane #servicelegendgnar #cypressavenueworks #cawambassadors #cawsensoryfriendlyteam #purplepoodlemodels
Went to home depot today for some confidence building with @servicedogoliver ❤️ the boys did so great! Gnar worked in his new ruffwear boots and his RexSpecs goggles for most of the outing. We worked on generalizing his tug command which he learned yesterday 😂 he had no problem doing it on the cabinets and with a different tug! We also worked on push, retrievals, carrying items, lip picking, under, recalls, climbing on surfaces, loud clanging noises, and heeling! BCs are notoriously sound sensitive, and Gnar is no exception! You can see him spook at a noise in the second video, but his recovery time and focus has improved immensely. He is learning that loud noises mean focus and cookies, and he even handled a loud clanging cart being pushed by us without spooking and did a recall across several carts! His confidence is growing daily, and he learns so fast. Ive been ridiculously impressed by how much more confident he is and how much he trusts me already to keep him safe. ••• Check out @cypressavenueworks for awesome paracord and sensory friendly gear! 15% off: CAWFRIENDSANDFAMILY ••• #medicalalertservicedog  #servicedog  #spoonie  #chronicillness  #ptsdservicedog  #servicedog  #servicedogintraining  #spoonie  #ptsd  #invisibleillness  #chronicillness  #tasktrained  #ptsd  #ehlersdanlossyndrome  #multiplesystematrophy  #posturalorthostatictachycardiasyndrome  #pots  #EDS  #pnes  #mcad  #psoriaticarthropathy  #multiplesystematrophy  #autismservicedog  #neurodivergent  #mobilityservicedog  #chewyinfluencer  #Banetheservicedane  #servicelegendgnar  #cypressavenueworks  #cawambassadors  #cawsensoryfriendlyteam  #purplepoodlemodels 
In honour of Earth Day, I decided to share one of my biggest passions up on the blog! {link in profile} 🌿 There you will find evidence that environmental injustice IS a health issue and that fighting for our health with a chronic illness has to involve fighting for environmental protection. 🌍 Let’s fight for health: our own health, the health of others, and the health of our planet by being environmentally-conscious spoonies.
In honour of Earth Day, I decided to share one of my biggest passions up on the blog! {link in profile} 🌿 There you will find evidence that environmental injustice IS a health issue and that fighting for our health with a chronic illness has to involve fighting for environmental protection. 🌍 Let’s fight for health: our own health, the health of others, and the health of our planet by being environmentally-conscious spoonies.
Congresso Nacional de Adolescentes📷💙
#midia
#mcad
#esperança
“I’m faking it”
We fake it every single day. Chronic illness is an acting game. You put on a mask. Paint makeup over bags and pale skin. Lay black atop thinned out lashes. Draw red over dehydrated lips. Scrunch gel on thinned out hair. Down enough Oxy’s till your feet can carry you. Hot packs till your neck can bend. Cup fulls of caffeine to hold your head up. Don clunky necklaces over needles, tall shirts covering tubes. Toss joggers away for jeans. You muster up any bit of adrenaline inside you and face the day. Smile. Wave. Gather up some acceptable responses: the classes (you’re nearly flunking) are going great, the puppy (you can barely pick up) is perfect. Adderall to finish your sentence. Advil to unclench your hands. Benzos to calm the world from shaking. Trade in the puke bowl for Zofran. Benadryl to eat a meal. More pain pills when you start to crash. Like playing a game of hoops, you lay everything out on the court. The crowd sees your best show. No one’s there to see you collapsed on the locker room floor with nothing left to give. When the uniform comes off, the makeup’s washed away, the drugs worn off, every drop of adrenaline depleted, when you can no longer put on a front, that’s reality. So yes, we’re faking it. We fake being well everyday. We’re actors. Our “Oscars” are delivered with five piercing words: “But, you don’t look sick.” We blend in: job successful. It’s a necessary survival mode and we’re use to it. Just know- life behind the mask can be be a bit lonely. To those who see us, who see through the mask, who know what battles we go home to, our people, our lifeline: thank you.
“I’m faking it” We fake it every single day. Chronic illness is an acting game. You put on a mask. Paint makeup over bags and pale skin. Lay black atop thinned out lashes. Draw red over dehydrated lips. Scrunch gel on thinned out hair. Down enough Oxy’s till your feet can carry you. Hot packs till your neck can bend. Cup fulls of caffeine to hold your head up. Don clunky necklaces over needles, tall shirts covering tubes. Toss joggers away for jeans. You muster up any bit of adrenaline inside you and face the day. Smile. Wave. Gather up some acceptable responses: the classes (you’re nearly flunking) are going great, the puppy (you can barely pick up) is perfect. Adderall to finish your sentence. Advil to unclench your hands. Benzos to calm the world from shaking. Trade in the puke bowl for Zofran. Benadryl to eat a meal. More pain pills when you start to crash. Like playing a game of hoops, you lay everything out on the court. The crowd sees your best show. No one’s there to see you collapsed on the locker room floor with nothing left to give. When the uniform comes off, the makeup’s washed away, the drugs worn off, every drop of adrenaline depleted, when you can no longer put on a front, that’s reality. So yes, we’re faking it. We fake being well everyday. We’re actors. Our “Oscars” are delivered with five piercing words: “But, you don’t look sick.” We blend in: job successful. It’s a necessary survival mode and we’re use to it. Just know- life behind the mask can be be a bit lonely. To those who see us, who see through the mask, who know what battles we go home to, our people, our lifeline: thank you.
Despite waking up with a couple misaligned joints and my mid back seized up I had a wonderful productive day! Ran errands, pruned up the orchard, did some gardening and even watched my little guy ride his tricycle for the first time! Love to watch him hit milestones :) Happy mama...now for some much needed relaxation with my heating pad!

Without pain I would not know the beauty of relief! 
#livinginvisiblyill #ehlersdanlossyndrome #hypermobility #dysautonomia #POTS #MCAD #invisibleillness #chronicpain #keeppositive #keepmoving #keepsmiling #orchard #organic #gardening #oregoncoast #mylittleaspie #littlelove #meetingmilestones
Despite waking up with a couple misaligned joints and my mid back seized up I had a wonderful productive day! Ran errands, pruned up the orchard, did some gardening and even watched my little guy ride his tricycle for the first time! Love to watch him hit milestones :) Happy mama...now for some much needed relaxation with my heating pad! Without pain I would not know the beauty of relief! #livinginvisiblyill  #ehlersdanlossyndrome  #hypermobility  #dysautonomia  #POTS  #MCAD  #invisibleillness  #chronicpain  #keeppositive  #keepmoving  #keepsmiling  #orchard  #organic  #gardening  #oregoncoast  #mylittleaspie  #littlelove  #meetingmilestones 
Today marks a year of when I first started using my handicap placard. 💙 Like many other #spoonies I’ve been yelled at before, accused of using my grandmas handicap pass, and called countless nasty names 🙄. I know I have felt embarrassed and humiliated before BUT I’ve realized that trying to “tough it out” and trail across the entire parking lot will only make me more ill and at risk of fainting. SO just a quick little reminder to all of my fellow invisible illness warriors that you are just as deserving of a handicap parking spot as all others who use them 💕 Oh and Happy Earth Day! ☀️🌏 #spreadawareness #pots #sjogrens #syncope #spoonie #dysautonomia #chronicillness #vegan #bekind #mcas #aps #cfs #posturalorthostatictachycardiasyndrome #sjogrenssyndrome #autoimmunedisease #autoimmunediseases #warrior #chronicillnessfighter #csf #cerebralspinalfluidleak #love #fighter #antiphospholipidsyndrome #chronicfatiguesyndrome #mcad #mastcellactivationdisorder #mastcellactivationsyndrome 
#chronicillnesswarrior
Today marks a year of when I first started using my handicap placard. 💙 Like many other #spoonies  I’ve been yelled at before, accused of using my grandmas handicap pass, and called countless nasty names 🙄. I know I have felt embarrassed and humiliated before BUT I’ve realized that trying to “tough it out” and trail across the entire parking lot will only make me more ill and at risk of fainting. SO just a quick little reminder to all of my fellow invisible illness warriors that you are just as deserving of a handicap parking spot as all others who use them 💕 Oh and Happy Earth Day! ☀️🌏 #spreadawareness  #pots  #sjogrens  #syncope  #spoonie  #dysautonomia  #chronicillness  #vegan  #bekind  #mcas  #aps  #cfs  #posturalorthostatictachycardiasyndrome  #sjogrenssyndrome  #autoimmunedisease  #autoimmunediseases  #warrior  #chronicillnessfighter  #csf  #cerebralspinalfluidleak  #love  #fighter  #antiphospholipidsyndrome  #chronicfatiguesyndrome  #mcad  #mastcellactivationdisorder  #mastcellactivationsyndrome  #chronicillnesswarrior 
If I am able to sing it, (and it is not too vulgar please), I would like to encourage my friends through covers, parodies, and even bloopers. 😉 
Is there something you would like to hear?

Hugs and love my friends. ❤️🎶 #singingspoonie #mastcellactivationdisorder #health #cover #music #singer #female
Tomorrow is gonna be DOPE!! Who wants to come with? Hmu! @kennyscharf can’t wait to see ya there! 🙌🏽🤓👍🏽#kennyscharf #artist #lecture #arttalk #contemporaryart #artist #legendary #mcad #popart#artbydelaovlog #popculture #fineart #mplsartist
Alleys are more enticing when they're colorful 🌈✨ Seen in Venice
Alleys are more enticing when they're colorful 🌈✨ Seen in Venice
Whoops. Sorry that i like died for a week. I ended up have to go to the hospital and being admited for 4 days. All of my doctors agreed that a service dog would be a good addition to my treatment and could help with a lot of diffrent things. Good thing im a dog trainer ;) now we just have to convince my douce bag dad.
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#disability #ehlersdanlossyndrome #eds #pots #posturalorthostatictachycardiasyndrome #sensoryprocessingdisorder #mastcellactivationdisorder #mcas #mcad #mastcellactivationsyndrome #spoonie #chronicallyill #cfs #chronicillness #chronicpain #disabled
Whoops. Sorry that i like died for a week. I ended up have to go to the hospital and being admited for 4 days. All of my doctors agreed that a service dog would be a good addition to my treatment and could help with a lot of diffrent things. Good thing im a dog trainer ;) now we just have to convince my douce bag dad. . . #disability  #ehlersdanlossyndrome  #eds  #pots  #posturalorthostatictachycardiasyndrome  #sensoryprocessingdisorder  #mastcellactivationdisorder  #mcas  #mcad  #mastcellactivationsyndrome  #spoonie  #chronicallyill  #cfs  #chronicillness  #chronicpain  #disabled 
This was for the #mcad #selfportrait contest.. a commentary on my bellybutton
PREEEEEACCCCH
@annieelainey
PREEEEEACCCCH @annieelainey
I overdid it. I tried to be superwoman today and now I am regretting it. 🙁

A ‘good day’ for me is going to the grocery store for half an hour, running an errand, working a few hours, etc. If I exert myself mentally then physically I need to do less. Over the past couple of years I have learned that I really need to be mindful not to overdo. Too much exertion triggers neuro symptoms, nausea, fever, muscle spasms, etc. Sometimes it is like being in a car wreck - the day you do things, you don’t feel the true impact until the next day. Yesterday I pushed a small shopping cart for a while. This morning I went out and pushed another (smaller lighter) cart. 
Now I am questioning my life choices. My neck and back are spasming, my arms and wrists hurt, I feel very fatigued, flushed, fever, and my core muscles are wrecked.

Bath, jammies and time to rest with Aleve. Ugh. 😐

#knowyourlimits #chronicillness #inflammation #mcas #mcad #mastcellactivationdisorder #multiplechemicalsensitivity #sunday #relax #tired
I overdid it. I tried to be superwoman today and now I am regretting it. 🙁 A ‘good day’ for me is going to the grocery store for half an hour, running an errand, working a few hours, etc. If I exert myself mentally then physically I need to do less. Over the past couple of years I have learned that I really need to be mindful not to overdo. Too much exertion triggers neuro symptoms, nausea, fever, muscle spasms, etc. Sometimes it is like being in a car wreck - the day you do things, you don’t feel the true impact until the next day. Yesterday I pushed a small shopping cart for a while. This morning I went out and pushed another (smaller lighter) cart. Now I am questioning my life choices. My neck and back are spasming, my arms and wrists hurt, I feel very fatigued, flushed, fever, and my core muscles are wrecked. Bath, jammies and time to rest with Aleve. Ugh. 😐 #knowyourlimits  #chronicillness  #inflammation  #mcas  #mcad  #mastcellactivationdisorder  #multiplechemicalsensitivity  #sunday  #relax  #tired 
My warrior is a VP of Communications in FBLA
#mcad #raredisease #wontstopme
A few years ago. My aunt’s dog (Taffy) and lots of puppy kisses 😘 🐶It was a good night!

#chronicillness #butyoudontlooksick #mcas #mcad #lyme #pots #health #genetics #dogs #dog #love #family
Sobre ontem... Primeiro congresso de adolescentes da mcad que eu assisto! Foi maravilhoso,pude ouvir a palavra,pude me concentrar,pude rever meus amigos,pude adorar a Deus ao lado deles,foi extraordinário! A presença de Deus foi magnifica naquele lugar! Muito grata estou a Deus por tudo! Ele sabe exatamente tudo o que faz! O melhor de Tudo é ver teus amigos crescendo e sendo honrados pelo senhor! O melhor organizador de coral que você respeita tá bem aí nessa foto comigo! #CongressoEsperança #Belém #GabrielaRocha #Esperança #Mcad
Sobre ontem... Primeiro congresso de adolescentes da mcad que eu assisto! Foi maravilhoso,pude ouvir a palavra,pude me concentrar,pude rever meus amigos,pude adorar a Deus ao lado deles,foi extraordinário! A presença de Deus foi magnifica naquele lugar! Muito grata estou a Deus por tudo! Ele sabe exatamente tudo o que faz! O melhor de Tudo é ver teus amigos crescendo e sendo honrados pelo senhor! O melhor organizador de coral que você respeita tá bem aí nessa foto comigo! #CongressoEsperança  #Belém  #GabrielaRocha  #Esperança  #Mcad 
New blog post!
Continuing the theme of old-school style blog posts and YouTube videos, this post is on my current favourites.
But, of course, spoonie-style!
Some items I find useful, as well as podcasts and a day out.
Hope you like it!
Link in bio.
Do let me know if you like this more light-hearted style of blog post - or any suggestions for other ones.
Have a lovely weekend 💕.
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#fibromyalgia #pots #posturalorthostatictachycardiasyndrome #dysautonomia #eds #ehlersdanlossyndrome #ehlersdanlos #hypermobility #migraine #headache #chronicheadache #vertigo #vestibular #mcas #mcad #mastcellactivationdisorder #raynauds #interstitialcystitis #chronicillness #chronicpain #chronicfatigue #spoonie #disability #health #nature #kewgardens
New blog post! Continuing the theme of old-school style blog posts and YouTube videos, this post is on my current favourites. But, of course, spoonie-style! Some items I find useful, as well as podcasts and a day out. Hope you like it! Link in bio. Do let me know if you like this more light-hearted style of blog post - or any suggestions for other ones. Have a lovely weekend 💕. . #fibromyalgia  #pots  #posturalorthostatictachycardiasyndrome  #dysautonomia  #eds  #ehlersdanlossyndrome  #ehlersdanlos  #hypermobility  #migraine  #headache  #chronicheadache  #vertigo  #vestibular  #mcas  #mcad  #mastcellactivationdisorder  #raynauds  #interstitialcystitis  #chronicillness  #chronicpain  #chronicfatigue  #spoonie  #disability  #health  #nature  #kewgardens 
“ Told Her I’m A Genie 🧞‍♂️ I Grant Wishes” #oneway #MCAD
“ Told Her I’m A Genie 🧞‍♂️ I Grant Wishes” #oneway  #MCAD 
Blueberry smoothies are one of my faves 💕

What is your favorite smoothie combo?

#health #food #smoothie 
#spoonie #chronicillness
What's to come??? It's 1 am I'm gonna get no traffic on this but whatever I'm not IN it for the LIKES
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#art #artist #instaart #illustration #illustrator #student #mcad #artschool #drawing #figure #traditional #thumbnails #rough #portrait #graphite
Performance test for thesis installation. #mcad #mcadmfa
💥brutally honest post 💥
(possible tw: depression)
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I’ve come to realize that I’ve been in a bit of a depressive state the last several weeks, which I’ve hidden behind overly positive posts. This week, I have stepped back from posting because I lacked the motivation to fake the happiness and positivity that I felt I needed to share here. But this is my account, and this is my journey. It’s not all rainbows and sunshine, sometimes it fucking sucks. So here’s my brutally honest update
•
For the past two weeks, most of my time has been spent unmotivated, irritable, binging on junk food and laying around in bed. I’ve felt hopeless and useless and inadequate. I have had two doctors terminate me as their patient because they felt there was no reason to continue seeing me since there was nothing for them to do for me. Both doctors only saw me twice, and both determined to stop seeing me since I was no longer an “easy” case. Another doctor refused me assistive devices in order to ensure I did not have independence. They felt I needed to be kept inside, under the watchful eye of a family member because I was “too sick” to be alone
•
I have began to lose my independence. I have began to lose my autonomy. I am losing who I am at my core and it has sent me into a downward spiral. I know this is not the end of my story, just another speed bump, or two, but it makes it incredibly hard to be positive. So for now, I’ll curl up in bed and give my body the rest it needs to continue this fight. I’ll curl up and allow myself to feel all of the shitty emotions I am feeling because they are real, and valid, and justified. •
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#spoonie#spooniestrong#invisableillness#butyoudontlikesick#disabled#disabledandcute#chronicillness#chronicillnesswarrior#mcad#mcas#mastcellactivationdisorder#cfs#fibromyalgia#amps#eds#ehlersdanlossyndrome#pots#posturalorthostatictachycardiasyndrome#depression#mentalhealth
💥brutally honest post 💥 (possible tw: depression) • I’ve come to realize that I’ve been in a bit of a depressive state the last several weeks, which I’ve hidden behind overly positive posts. This week, I have stepped back from posting because I lacked the motivation to fake the happiness and positivity that I felt I needed to share here. But this is my account, and this is my journey. It’s not all rainbows and sunshine, sometimes it fucking sucks. So here’s my brutally honest update • For the past two weeks, most of my time has been spent unmotivated, irritable, binging on junk food and laying around in bed. I’ve felt hopeless and useless and inadequate. I have had two doctors terminate me as their patient because they felt there was no reason to continue seeing me since there was nothing for them to do for me. Both doctors only saw me twice, and both determined to stop seeing me since I was no longer an “easy” case. Another doctor refused me assistive devices in order to ensure I did not have independence. They felt I needed to be kept inside, under the watchful eye of a family member because I was “too sick” to be alone • I have began to lose my independence. I have began to lose my autonomy. I am losing who I am at my core and it has sent me into a downward spiral. I know this is not the end of my story, just another speed bump, or two, but it makes it incredibly hard to be positive. So for now, I’ll curl up in bed and give my body the rest it needs to continue this fight. I’ll curl up and allow myself to feel all of the shitty emotions I am feeling because they are real, and valid, and justified. • • • • • #spoonie #spooniestrong #invisableillness #butyoudontlikesick #disabled #disabledandcute #chronicillness #chronicillnesswarrior #mcad #mcas #mastcellactivationdisorder #cfs #fibromyalgia #amps #eds #ehlersdanlossyndrome #pots #posturalorthostatictachycardiasyndrome #depression #mentalhealth 
Keto & exercise (1.5 mths) only. I started Keto on 10/10/17. My joint pain is gone, my acne has improved significantly and I have lost 65 lbs. Starting weight: 206 Current weight: 141 Give Keto a try! I suffer from Endometriosis, EDS, PCOS, Sjogrens and Mast Cell Activation Disease. Keto can change your life. #ketoforhealing #ketoforweightloss #endometriosis #mastcelldisease #reducechronicpain #eatfatgetfit #reduceinflammation #keto #ketogenicdiet #lksketojourney #eds #mcad #sjogrens #pcos #chronicpain #chronicpelvicpain #65lbsdown #joinmeonthisketojourney
Keto & exercise (1.5 mths) only. I started Keto on 10/10/17. My joint pain is gone, my acne has improved significantly and I have lost 65 lbs. Starting weight: 206 Current weight: 141 Give Keto a try! I suffer from Endometriosis, EDS, PCOS, Sjogrens and Mast Cell Activation Disease. Keto can change your life. #ketoforhealing  #ketoforweightloss  #endometriosis  #mastcelldisease  #reducechronicpain  #eatfatgetfit  #reduceinflammation  #keto  #ketogenicdiet  #lksketojourney  #eds  #mcad  #sjogrens  #pcos  #chronicpain  #chronicpelvicpain  #65lbsdown  #joinmeonthisketojourney 
Mast cell reactions can be quite unpredictable. Some days, I can tolerate something with a mild to moderate reaction, and some days I react more.
Paper towels...yes, paper towels. Strawberries. Cocomels. Brushing my hair. Certain fabrics. Heat and cold. Spices. Electronics. Perfumes. 
Mold in buildings. Natural oils.
Some triggers have been more constant while others depend on the day.
The last time I ate a cocomel I had a breathing and swallowing neurological episode and I went to the ER... which, despite my mask, made me feel worse because then I was reacting to the cleaning chemicals and the smell of the blood pressure cuff.

It has been so life changing. I cannot always predict what may trigger things.

What are your experiences? How do you cope with it?

Hugs and love ❤️ #mastcellactivationdisorder #chronicillness #mcas #mcad #genetics #raredisease #chronicfatigue #butyoudontlooksick
Mast cell reactions can be quite unpredictable. Some days, I can tolerate something with a mild to moderate reaction, and some days I react more. Paper towels...yes, paper towels. Strawberries. Cocomels. Brushing my hair. Certain fabrics. Heat and cold. Spices. Electronics. Perfumes. Mold in buildings. Natural oils. Some triggers have been more constant while others depend on the day. The last time I ate a cocomel I had a breathing and swallowing neurological episode and I went to the ER... which, despite my mask, made me feel worse because then I was reacting to the cleaning chemicals and the smell of the blood pressure cuff. It has been so life changing. I cannot always predict what may trigger things. What are your experiences? How do you cope with it? Hugs and love ❤️ #mastcellactivationdisorder  #chronicillness  #mcas  #mcad  #genetics  #raredisease  #chronicfatigue  #butyoudontlooksick 
Mast cell reactions can be quite unpredictable. Some days, I can tolerate something with a mild to moderate reaction, and some days I react more.
Paper towels...yes, paper towels. Strawberries. Cocomels. Brushing my hair. Certain fabrics. Heat and cold. Spices. Electronics. Perfumes. 
Mold in buildings. Natural oils.
Some triggers have been more constant while others depend on the day.
The last time I ate a cocomel I had a breathing and swallowing neurological episode and I went to the ER... which, despite my mask, made me feel worse because then I was reacting to the cleaning chemicals and the smell of the blood pressure cuff.

It has been so life changing. I cannot always predict what may trigger things.

What are your experiences? How do you cope with it?

Hugs and love ❤️ #mastcellactivationdisorder #chronicillness #mcas #mcad #genetics #raredisease #chronicfatigue #butyoudontlooksick
Mast cell reactions can be quite unpredictable. Some days, I can tolerate something with a mild to moderate reaction, and some days I react more. Paper towels...yes, paper towels. Strawberries. Cocomels. Brushing my hair. Certain fabrics. Heat and cold. Spices. Electronics. Perfumes. Mold in buildings. Natural oils. Some triggers have been more constant while others depend on the day. The last time I ate a cocomel I had a breathing and swallowing neurological episode and I went to the ER... which, despite my mask, made me feel worse because then I was reacting to the cleaning chemicals and the smell of the blood pressure cuff. It has been so life changing. I cannot always predict what may trigger things. What are your experiences? How do you cope with it? Hugs and love ❤️ #mastcellactivationdisorder  #chronicillness  #mcas  #mcad  #genetics  #raredisease  #chronicfatigue  #butyoudontlooksick 
Graduation Day. 
Where everyone sees my success and my accomplishments, but no one sees the constant dislocations and subluxations of my joints. 
No one sees the dizziness and non existent flashing lights I see that makes me feel like fainting. 
No one sees how much anxiety I have harbored inside from being stared at, or when I get harassed for being an Asian female in the automotive field. (yep, I’ve endured directed comments on both parts of me.) No one sees how much self-hate I have for seeing my health get so bad and wondering if it’s my fault for the way I am. 
Success is not a one way street. It’s a lot of getting lost and trying to find the way again, like a maze. You can see the beginning and end of the maze. But behind the walls it’s one hell of a mess. 
I did it. This was not easy. It was never easy for anyone who turns out successful starting with nothing to land back on. (Like other trade skills.) I couldn’t have done this alone. To those that do see my struggling and helped me my whole way, thank you.
Graduation Day. Where everyone sees my success and my accomplishments, but no one sees the constant dislocations and subluxations of my joints. No one sees the dizziness and non existent flashing lights I see that makes me feel like fainting. No one sees how much anxiety I have harbored inside from being stared at, or when I get harassed for being an Asian female in the automotive field. (yep, I’ve endured directed comments on both parts of me.) No one sees how much self-hate I have for seeing my health get so bad and wondering if it’s my fault for the way I am. Success is not a one way street. It’s a lot of getting lost and trying to find the way again, like a maze. You can see the beginning and end of the maze. But behind the walls it’s one hell of a mess. I did it. This was not easy. It was never easy for anyone who turns out successful starting with nothing to land back on. (Like other trade skills.) I couldn’t have done this alone. To those that do see my struggling and helped me my whole way, thank you.
✨It felt so good to be soaking up some sunshine and fresh air with Lulu and our neighbor who is becoming a good friend of mine. What is the weather like in your corner in the world?✨💛
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#chronicillness #chronicpain #raredisease #heds #eds #pots #mcas #mcad #dysautonomia #ehlersdanlossyndrome #hypermobility #bendyaf #spoonie #zebra #zebrastrong #sunnyday #goodday
seizures, puking, pain, 
migraines.... maybe it’s just a shit day, maybe its every day.
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whatever your battles are “...don’t give up my love...”
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@j.e.rivera
seizures, puking, pain, migraines.... maybe it’s just a shit day, maybe its every day. - whatever your battles are “...don’t give up my love...” - @j.e.rivera
Grateful for all the Lyme warriors who have entrusted me with sharing your story. Your words matter. And we will not stop until they have been heard. #RiseUpForLyme
Grateful for all the Lyme warriors who have entrusted me with sharing your story. Your words matter. And we will not stop until they have been heard. #RiseUpForLyme 
Thank you for your love, sharing your experiences, and the privilege of knowing you. This community is amazing. ❤️ #thankyou #thankful #spoonie #warrior #chronicillness #mastcellactivationdisorder #mcas #mcad
Salon Day! It started with a wonderful mud mask with rain drop therapy, then a bubble massage, afterwards a blow dry and comb out , finally got my nails cut, filled and painted to match my girls nails! The end result is a very clean pup! And a very tired girl! 🐾 #dissingdysautonomia #dysautonomiasucks #dysautonomia #pots #potsy #posturalorthostatictachycardiasyndrome #tachycardia #tachy #eds #zebra #ehlersdanlossyndrome #ehlersdanloslife #mcad #mastcellactivationdisorder  #gastroparesis #gastroparesissucks #servicedog #servicedogintraining #lovemylevi #yellowlab #yellowmellow #godhasaplan #purposeinpain #keepfighting #training #salonday
Salon Day! It started with a wonderful mud mask with rain drop therapy, then a bubble massage, afterwards a blow dry and comb out , finally got my nails cut, filled and painted to match my girls nails! The end result is a very clean pup! And a very tired girl! 🐾 #dissingdysautonomia  #dysautonomiasucks  #dysautonomia  #pots  #potsy  #posturalorthostatictachycardiasyndrome  #tachycardia  #tachy  #eds  #zebra  #ehlersdanlossyndrome  #ehlersdanloslife  #mcad  #mastcellactivationdisorder  #gastroparesis  #gastroparesissucks  #servicedog  #servicedogintraining  #lovemylevi  #yellowlab  #yellowmellow  #godhasaplan  #purposeinpain  #keepfighting  #training  #salonday 
My body is not cooperating. 😰 After arriving home from Dallas, I entered one of my worst #MastCell flares I've had for a while. The hospital is definitely not where I want to be, but it's where I need to be. 🏥 The amazing medical professionals here are going above and beyond to ensure my safety and comfort. My reactions were severe and difficult to manage at first, but things are finally starting to settle down. 🙌 Hopefully I can go home tomorrow! #KeepMovingForward For full details on how I'm managing, check out today's vlog (link in bio). 🎬
#Hospital #MCAD #InPatient #ChronicIllness #Spoonie #Health #Allergies #AllergicReaction #Anaphylaxis
My body is not cooperating. 😰 After arriving home from Dallas, I entered one of my worst #MastCell  flares I've had for a while. The hospital is definitely not where I want to be, but it's where I need to be. 🏥 The amazing medical professionals here are going above and beyond to ensure my safety and comfort. My reactions were severe and difficult to manage at first, but things are finally starting to settle down. 🙌 Hopefully I can go home tomorrow! #KeepMovingForward  For full details on how I'm managing, check out today's vlog (link in bio). 🎬 #Hospital  #MCAD  #InPatient  #ChronicIllness  #Spoonie  #Health  #Allergies  #AllergicReaction  #Anaphylaxis 
What are YOU looking for? COMMENT the letter down below that best describes what you’re missing!👇🏻👇🏻👇🏻 #singing #LowerCranioCervical/ThoracicInstability #ChronicVertigo #ChronicMigraines #GIdismotility #MCAD #smile #love #happiness #you’rebeautiful #iloveyou #everyoneIsSpecial  #sing #singing #music #edits #strength # POTS #Dysautonomia #EhlersDanlos3 #CervicalInstability #SpinalFusion #NervePain #MusclesSpasms #chronicIllness #Potsie #Zebras #Spoonies #Unicorns #WeAreNotOkay
What are YOU looking for? COMMENT the letter down below that best describes what you’re missing!👇🏻👇🏻👇🏻 #singing  #LowerCranioCervical /ThoracicInstability #ChronicVertigo  #ChronicMigraines  #GIdismotility  #MCAD  #smile  #love  #happiness  #you ’rebeautiful #iloveyou  #everyoneIsSpecial  #sing  #singing  #music  #edits  #strength  # POTS #Dysautonomia  #EhlersDanlos3  #CervicalInstability  #SpinalFusion  #NervePain  #MusclesSpasms  #chronicIllness  #Potsie  #Zebras  #Spoonies  #Unicorns  #WeAreNotOkay 
Maintaining relationships when chronically ill is a serious struggle.  I’ve been chronically ill as long as I can remember, but mostly kept it to myself out of fear.  I struggled with chronic pain from scoliosis, TMJD, and interstitial cystitis, along with crippling mental health problems (now I know it was all MCAS related). I always felt like I needed a “real” diagnosis of a “real” disabling disease before I could tell my story.  I have found more healing in standing fully in my truth than from any medication or therapy I’ve tried.  Let people think I’m doing it for sympathy; that is their problem, not mine.  I choose transparency in hopes of spreading awareness about chronic illness.  I choose transparency in hopes of making connections with others who understand my daily struggle.  I choose transparency so that my friends and family don’t have to question my love or commitment to them. .
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#chronicillness #chronicpain #chronicillnesswarrior #chronicfatigue #mcas #mcad #mastcellactivationdisorder #mastcellactivationsyndrome #dysautonomia #pots #invisibleillness #autoimmunedisease #transparency #vulnerability #warrior #survivor #scoliosis #ic #interstitialcystitis #tmj #tmjd #mentalhealth #spoonie #spooniestrong #spoonielife #sickchick #sickgirl #standinyourtruth
Maintaining relationships when chronically ill is a serious struggle. I’ve been chronically ill as long as I can remember, but mostly kept it to myself out of fear. I struggled with chronic pain from scoliosis, TMJD, and interstitial cystitis, along with crippling mental health problems (now I know it was all MCAS related). I always felt like I needed a “real” diagnosis of a “real” disabling disease before I could tell my story. I have found more healing in standing fully in my truth than from any medication or therapy I’ve tried. Let people think I’m doing it for sympathy; that is their problem, not mine. I choose transparency in hopes of spreading awareness about chronic illness. I choose transparency in hopes of making connections with others who understand my daily struggle. I choose transparency so that my friends and family don’t have to question my love or commitment to them. . . . . . #chronicillness  #chronicpain  #chronicillnesswarrior  #chronicfatigue  #mcas  #mcad  #mastcellactivationdisorder  #mastcellactivationsyndrome  #dysautonomia  #pots  #invisibleillness  #autoimmunedisease  #transparency  #vulnerability  #warrior  #survivor  #scoliosis  #ic  #interstitialcystitis  #tmj  #tmjd  #mentalhealth  #spoonie  #spooniestrong  #spoonielife  #sickchick  #sickgirl  #standinyourtruth 
POTS Fact 17: Researchers at the Mayo Clinic first termed POTS in 1993, but it is not a new condition.
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The symptomatology was originally known as  Soldier's Heart and Mitral Valve Prolapse Syndrome. Jan Steen's painting of "Patient and Doctor" in the 1600s is also one of several paintings that researchers now believe was depicting a woman with Postural Tachycardia Syndrome according to 10 distinct features of the painting ("POTS: Together We Stand" book).
POTS Fact 17: Researchers at the Mayo Clinic first termed POTS in 1993, but it is not a new condition. • The symptomatology was originally known as Soldier's Heart and Mitral Valve Prolapse Syndrome. Jan Steen's painting of "Patient and Doctor" in the 1600s is also one of several paintings that researchers now believe was depicting a woman with Postural Tachycardia Syndrome according to 10 distinct features of the painting ("POTS: Together We Stand" book).
These allergies can suck it! #allergies #wine #mastcellactivationdisorder #mcad  #spoonie #pots #zebra
Look what Gnar learned today!! He's been learning how to close doors and cabinets, and how to push wheelchair buttons, but tug is a brand new command for him! This will be a very important command for Gnar. It's the basis for helping me get undressed, pulling laundry baskets, bringing my wheelchair or rollator, and opening/holding doors and cabinets! He learns ridiculously fast, but as you can see in the second blooper video, he's still a puppy, not a robot 😂 Gnar is learning a ton of commands, but even more importantly, he is learning to be confident, generalize, and problem solve! I want him to be able to eventually read a situation and task independently without needing constant commands. Some dogs do really well with that, while others take some time. Gnar is a soft dog and needs lots of encouragement and direction right now, but he's quickly learning what he needs to do and is already starting to become more confident in himself and in me as his partner. While having dogs to respond naturally is great, it's still important to remember that in order be protected by the ADA, our service dogs must have trained tasks! I'm so excited to continue training and working together as a team ❤️ when I have the energy, Im hoping to make several videos showing each of his commands and compile them into a highlight at the top of our page so I can track his progress a bit easier 😂 •••
Check out @cypressavenueworks for awesome paracord and sensory friendly gear!
15% off: CAWFRIENDSANDFAMILY
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#medicalalertservicedog #servicedog #spoonie #chronicillness #ptsdservicedog #servicedog #servicedogintraining #spoonie #ptsd #invisibleillness #chronicillness #tasktrained #ptsd #ehlersdanlossyndrome #multiplesystematrophy #posturalorthostatictachycardiasyndrome #pots #EDS #pnes #mcad #psoriaticarthropathy #multiplesystematrophy #autismservicedog #neurodivergent #mobilityservicedog #chewyinfluencer #Banetheservicedane #servicelegendgnar #cypressavenueworks #cawambassadors #cawsensoryfriendlyteam #purplepoodlemodels
Look what Gnar learned today!! He's been learning how to close doors and cabinets, and how to push wheelchair buttons, but tug is a brand new command for him! This will be a very important command for Gnar. It's the basis for helping me get undressed, pulling laundry baskets, bringing my wheelchair or rollator, and opening/holding doors and cabinets! He learns ridiculously fast, but as you can see in the second blooper video, he's still a puppy, not a robot 😂 Gnar is learning a ton of commands, but even more importantly, he is learning to be confident, generalize, and problem solve! I want him to be able to eventually read a situation and task independently without needing constant commands. Some dogs do really well with that, while others take some time. Gnar is a soft dog and needs lots of encouragement and direction right now, but he's quickly learning what he needs to do and is already starting to become more confident in himself and in me as his partner. While having dogs to respond naturally is great, it's still important to remember that in order be protected by the ADA, our service dogs must have trained tasks! I'm so excited to continue training and working together as a team ❤️ when I have the energy, Im hoping to make several videos showing each of his commands and compile them into a highlight at the top of our page so I can track his progress a bit easier 😂 ••• Check out @cypressavenueworks for awesome paracord and sensory friendly gear! 15% off: CAWFRIENDSANDFAMILY ••• #medicalalertservicedog  #servicedog  #spoonie  #chronicillness  #ptsdservicedog  #servicedog  #servicedogintraining  #spoonie  #ptsd  #invisibleillness  #chronicillness  #tasktrained  #ptsd  #ehlersdanlossyndrome  #multiplesystematrophy  #posturalorthostatictachycardiasyndrome  #pots  #EDS  #pnes  #mcad  #psoriaticarthropathy  #multiplesystematrophy  #autismservicedog  #neurodivergent  #mobilityservicedog  #chewyinfluencer  #Banetheservicedane  #servicelegendgnar  #cypressavenueworks  #cawambassadors  #cawsensoryfriendlyteam  #purplepoodlemodels 
New Hana Amaterasu design ! The daughter to AmonRa (the sun deity who looks Caucasian) Hana, here, is now gonna have darker skin compared to her biological father Amon and the rest of the deities cuz I noticed I was severely lacking in diversity in skin color. Most of the characters are either Caucasian or Asian... (hopefully this doesn’t bring up a debate on race) Amon’s wife/AWOL ex-wife Aether had dark skin and dark hair with tints of pink which was passed down to their daughter, here. 😊 Hana is a ray of sunshine. ☀️ I suddenly wanna draw her with her father now! #hanaamaterasu #nebulanapper #anime #manga #comicart #mcad #comic #draw #draws #drawing #drawings #doodle #doodles #sketch #sketches #artoninstagram #artoftheday #artistsofig #artistoninstagram #artistsofinstagram #instaart #instaartist #oc #otaku #kawaii #girl #women
New Hana Amaterasu design ! The daughter to AmonRa (the sun deity who looks Caucasian) Hana, here, is now gonna have darker skin compared to her biological father Amon and the rest of the deities cuz I noticed I was severely lacking in diversity in skin color. Most of the characters are either Caucasian or Asian... (hopefully this doesn’t bring up a debate on race) Amon’s wife/AWOL ex-wife Aether had dark skin and dark hair with tints of pink which was passed down to their daughter, here. 😊 Hana is a ray of sunshine. ☀️ I suddenly wanna draw her with her father now! #hanaamaterasu  #nebulanapper  #anime  #manga  #comicart  #mcad  #comic  #draw  #draws  #drawing  #drawings  #doodle  #doodles  #sketch  #sketches  #artoninstagram  #artoftheday  #artistsofig  #artistoninstagram  #artistsofinstagram  #instaart  #instaartist  #oc  #otaku  #kawaii  #girl  #women 
It’s the @throughthefibrofog one year anniversary!
Well it was three days ago but I just realised last night.
So a photo of flowers to celebrate 🎉 🌹 🎊.
Thank you to everyone who follows this account and enjoys the content.
I am really overwhelmed by how many of you there are!
I’ve had amazing conversations with lots you that have been so supportive and helpful.
I hope that you keep enjoying my little ramblings about chronic illness and the things I am dealing with - good and not-so-good.
And please do keep contributing your views and experiences when we talk about a particular topic - I know it helps me so hopefully it helps others as well.
And finally, please do let me know if there are any posts you would like to see either here or on the blog (link in bio).
Have a lovely weekend!
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#fibromyalgia #fibro #pots #posturalorthostatictachycardiasyndrome #eds #dysautonomia #ehlersdanlossyndrome #ehlersdanlos #hypermobility #migraine #headache #vertigo #vestibularmigraine #mcas #mcad #mastcellactivationsyndrome #raynauds #interstitialcystitis #tmj #chronicillness #chronicpain #chronicfatigue #spoonie #disability #health #wellbeing #wellness #flowers #nature
It’s the @throughthefibrofog one year anniversary! Well it was three days ago but I just realised last night. So a photo of flowers to celebrate 🎉 🌹 🎊. Thank you to everyone who follows this account and enjoys the content. I am really overwhelmed by how many of you there are! I’ve had amazing conversations with lots you that have been so supportive and helpful. I hope that you keep enjoying my little ramblings about chronic illness and the things I am dealing with - good and not-so-good. And please do keep contributing your views and experiences when we talk about a particular topic - I know it helps me so hopefully it helps others as well. And finally, please do let me know if there are any posts you would like to see either here or on the blog (link in bio). Have a lovely weekend! . #fibromyalgia  #fibro  #pots  #posturalorthostatictachycardiasyndrome  #eds  #dysautonomia  #ehlersdanlossyndrome  #ehlersdanlos  #hypermobility  #migraine  #headache  #vertigo  #vestibularmigraine  #mcas  #mcad  #mastcellactivationsyndrome  #raynauds  #interstitialcystitis  #tmj  #chronicillness  #chronicpain  #chronicfatigue  #spoonie  #disability  #health  #wellbeing  #wellness  #flowers  #nature 
Ohhh..the storms our family sails. 
I am thankful for today;
I am grateful for the love and strength of our family. We all are walking medical nightmares. Everyday is a gift 🎁 that we are all here and continue to persevere through;
*Dad
#lungcancer#multiplesclerosis #Melanoma #shoulderreplacement #shatteredhumerus 
While my mother is #breastcancersurvivor #CLL Leukemia fighter as of now with more on the way.
I deal with #CrohnsDisease ,
#mcad #ehlersdanlossyndrome #dysautonomia #Dystonia 
We all are #survivors and continue to cherish each moment we all have.
If anyone has a prayer or two for this up coming week.. it’s greatly needed; we don’t want to add to our lists.
So thankful we can all depend on each other and make life work. We had a great time hanging out at our favorite local bar today❤️
Ohhh..the storms our family sails. I am thankful for today; I am grateful for the love and strength of our family. We all are walking medical nightmares. Everyday is a gift 🎁 that we are all here and continue to persevere through; *Dad #lungcancer #multiplesclerosis  #Melanoma  #shoulderreplacement  #shatteredhumerus  While my mother is #breastcancersurvivor  #CLL  Leukemia fighter as of now with more on the way. I deal with #CrohnsDisease  , #mcad  #ehlersdanlossyndrome  #dysautonomia  #Dystonia  We all are #survivors  and continue to cherish each moment we all have. If anyone has a prayer or two for this up coming week.. it’s greatly needed; we don’t want to add to our lists. So thankful we can all depend on each other and make life work. We had a great time hanging out at our favorite local bar today❤️
I did an aerial yoga class tonight!! And it was AMAZING! It’s the first group exercise class I’ve been able to take without initiating a full on relapse. It was so completely wonderful to be just a normal person in an intro to aerial yoga class! Nothing weird happened neurologically! I was able to fully keep up with everyone in class. It was PERFECT! And I can’t stop smiling!!!!! 😄😄😄 I am SO going back for more.
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#lymedisease #cirs #dysautonomia #spoonie #spoonielife #mcs #mcas #mcad #resilience #aerialyoga #aerialsilks #exercise
I did an aerial yoga class tonight!! And it was AMAZING! It’s the first group exercise class I’ve been able to take without initiating a full on relapse. It was so completely wonderful to be just a normal person in an intro to aerial yoga class! Nothing weird happened neurologically! I was able to fully keep up with everyone in class. It was PERFECT! And I can’t stop smiling!!!!! 😄😄😄 I am SO going back for more. . . . . . #lymedisease  #cirs  #dysautonomia  #spoonie  #spoonielife  #mcs  #mcas  #mcad  #resilience  #aerialyoga  #aerialsilks  #exercise 
Last week I was hospitalized with debilitating heart pain so severe I could not speak, walk, or be in the light. Last week the paramedics mocked the name of my illness POTS, “how could an illness with that name be serious?” Last week I was refused pain medication and IV fluids for 4 hours despite my spasms, shaking, and crying. Last week my nurse would not look at my medical id, despite my complex medical history, because she didn’t think it was necessary. Last week I was told by the ER doctor that “it’s just anxiety” and that because of my demographic as a 22 year old healthy looking woman, I have nothing to worry about. Last week I was under-treated, dismissed, and misdiagnosed.  This week I took charge of my health. This week I met with my medical team who arranged for a series of appropriate tests. This week I decided to not let the actions of a few individuals ruin my perception of health-care providers.  Everyday we must continue to spread awareness and educate others about the realities of invisible and chronic illnesses. #spreadawareness #pots #sjogrens #syncope #spoonie #dysautonomia #chronicillness #vegan #bekind #mcas #aps #cfs #posturalorthostatictachycardiasyndrome #sjogrenssyndrome #autoimmunedisease #autoimmunediseases #warrior #chronicillnessfighter #csf #cerebralspinalfluidleak #love #fighter #antiphospholipidsyndrome #chronicfatiguesyndrome #mcad #mastcellactivationdisorder #mastcellactivationsyndrome 
#chronicillnesswarrior
Last week I was hospitalized with debilitating heart pain so severe I could not speak, walk, or be in the light. Last week the paramedics mocked the name of my illness POTS, “how could an illness with that name be serious?” Last week I was refused pain medication and IV fluids for 4 hours despite my spasms, shaking, and crying. Last week my nurse would not look at my medical id, despite my complex medical history, because she didn’t think it was necessary. Last week I was told by the ER doctor that “it’s just anxiety” and that because of my demographic as a 22 year old healthy looking woman, I have nothing to worry about. Last week I was under-treated, dismissed, and misdiagnosed. This week I took charge of my health. This week I met with my medical team who arranged for a series of appropriate tests. This week I decided to not let the actions of a few individuals ruin my perception of health-care providers. Everyday we must continue to spread awareness and educate others about the realities of invisible and chronic illnesses. #spreadawareness  #pots  #sjogrens  #syncope  #spoonie  #dysautonomia  #chronicillness  #vegan  #bekind  #mcas  #aps  #cfs  #posturalorthostatictachycardiasyndrome  #sjogrenssyndrome  #autoimmunedisease  #autoimmunediseases  #warrior  #chronicillnessfighter  #csf  #cerebralspinalfluidleak  #love  #fighter  #antiphospholipidsyndrome  #chronicfatiguesyndrome  #mcad  #mastcellactivationdisorder  #mastcellactivationsyndrome  #chronicillnesswarrior 
I asked my PCP to run labs for Hashimoto’s and Stiff-Person Syndrome — both came back positive. 
Hashimoto’s is autoimmune hypothyroidism. 
Stiff-Person Syndrome (SPS) is basically what it sounds like and is an autoimmune disease causing progressive muscle stiffness. It was first identified in 1956, at which point it was called “Stiff-Man Syndrome,” and the name was changed following cases being described in women. 
Is there a @guinnessworldrecords for having way too many autoimmune diseases? It certainly wouldn’t be a fun award. 
______ 
ID: Coffee cup and teal typewriter sitting on a wood desk, with paper in carriage reading: “Autoimmune Disease: Because the Only Thing Tough Enough to Kick My Ass is Me — A Novel.” Paper on desk, to the left of the typewriter reads, “Rheumatoid Arthritis (RA), Chronic Autoimmune Urticaria, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Hashimoto’s, Stiff-Person Syndrome, Sjögren’s Syndrome (Probable), Mixed Connective Tissue Disease (Possible)"
I asked my PCP to run labs for Hashimoto’s and Stiff-Person Syndrome — both came back positive. Hashimoto’s is autoimmune hypothyroidism. Stiff-Person Syndrome (SPS) is basically what it sounds like and is an autoimmune disease causing progressive muscle stiffness. It was first identified in 1956, at which point it was called “Stiff-Man Syndrome,” and the name was changed following cases being described in women. Is there a @guinnessworldrecords for having way too many autoimmune diseases? It certainly wouldn’t be a fun award. ______ ID: Coffee cup and teal typewriter sitting on a wood desk, with paper in carriage reading: “Autoimmune Disease: Because the Only Thing Tough Enough to Kick My Ass is Me — A Novel.” Paper on desk, to the left of the typewriter reads, “Rheumatoid Arthritis (RA), Chronic Autoimmune Urticaria, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Hashimoto’s, Stiff-Person Syndrome, Sjögren’s Syndrome (Probable), Mixed Connective Tissue Disease (Possible)"
In honor of the #Columbine’s 19th Anniversary, the #MCAD Students Against Gun Violence Club created an installation memorial that faces the public traffic street. I printed and mounted the posters, flags, and banners, while some other clubs donated a banner of the list of Parkland victims and a poster of “We Are More Important” (not pictured). Give a moment of silence throughout the day to honor the innocent victims of these violent deaths. #columbine #marchforourlives #marchforourlivesminnesota #studentwalkout #studentwalkout2018 #studentwalkoutagainstgunviolence #makemcad #memorial #columbinememorial #april20th
In honor of the #Columbine ’s 19th Anniversary, the #MCAD  Students Against Gun Violence Club created an installation memorial that faces the public traffic street. I printed and mounted the posters, flags, and banners, while some other clubs donated a banner of the list of Parkland victims and a poster of “We Are More Important” (not pictured). Give a moment of silence throughout the day to honor the innocent victims of these violent deaths. #columbine  #marchforourlives  #marchforourlivesminnesota  #studentwalkout  #studentwalkout2018  #studentwalkoutagainstgunviolence  #makemcad  #memorial  #columbinememorial  #april20th 
@servicedogoliver and I had to go back to the wheelchair place today 😂 the boys were great. Gnar pushed wheelchair buttons for me like a pro! But I'm a lame handler and forgot to video 😂 he heeled well and navigated tight doorways with my chair. We worked on our "go through" command, which is one of two commands I use to fit through doorways that are too narrow for a dog and chair. Gnar is learning to walk through the doorway before me, turn around to face me, and back up while I roll towards him, and then finishing in a heel. He also ignored multiple people and the wheelchair tech kneeling right in his face! Gnar's weakness is humans 😂 he loves drive by sniffs and sniffing the air where people have passed by. We are working on him ignoring people when they come close and he's already improving! His auto leave its with dropped food are also getting super solid. I'm very proud of him. •••
Check out @cypressavenueworks for awesome paracord and sensory friendly gear!
15% off: CAWFRIENDSANDFAMILY
•••
#medicalalertservicedog #servicedog #spoonie #chronicillness #ptsdservicedog #servicedog #servicedogintraining #spoonie #ptsd #invisibleillness #chronicillness #tasktrained #ptsd #ehlersdanlossyndrome #multiplesystematrophy #posturalorthostatictachycardiasyndrome #pots #EDS #pnes #mcad #psoriaticarthropathy #multiplesystematrophy #autismservicedog #neurodivergent #mobilityservicedog #chewyinfluencer #Banetheservicedane #servicelegendgnar #cypressavenueworks #cawambassadors #cawsensoryfriendlyteam #purplepoodlemodels
@servicedogoliver and I had to go back to the wheelchair place today 😂 the boys were great. Gnar pushed wheelchair buttons for me like a pro! But I'm a lame handler and forgot to video 😂 he heeled well and navigated tight doorways with my chair. We worked on our "go through" command, which is one of two commands I use to fit through doorways that are too narrow for a dog and chair. Gnar is learning to walk through the doorway before me, turn around to face me, and back up while I roll towards him, and then finishing in a heel. He also ignored multiple people and the wheelchair tech kneeling right in his face! Gnar's weakness is humans 😂 he loves drive by sniffs and sniffing the air where people have passed by. We are working on him ignoring people when they come close and he's already improving! His auto leave its with dropped food are also getting super solid. I'm very proud of him. ••• Check out @cypressavenueworks for awesome paracord and sensory friendly gear! 15% off: CAWFRIENDSANDFAMILY ••• #medicalalertservicedog  #servicedog  #spoonie  #chronicillness  #ptsdservicedog  #servicedog  #servicedogintraining  #spoonie  #ptsd  #invisibleillness  #chronicillness  #tasktrained  #ptsd  #ehlersdanlossyndrome  #multiplesystematrophy  #posturalorthostatictachycardiasyndrome  #pots  #EDS  #pnes  #mcad  #psoriaticarthropathy  #multiplesystematrophy  #autismservicedog  #neurodivergent  #mobilityservicedog  #chewyinfluencer  #Banetheservicedane  #servicelegendgnar  #cypressavenueworks  #cawambassadors  #cawsensoryfriendlyteam  #purplepoodlemodels 
Everyone this is my new brother red! About a week ago we found him at a gas station. We’ve tried to call rescues and dog shelters to find his owner but no one has called us back. So red is now a Blanford! My girls sister had been talking about getting an ESD or service dog for a while and this guy just loves her and has an awesome temperament. We are slowly trying him out and teaching him some things! He’s my new best friend! 🐾 #dissingdysautonomia #dysautonomiasucks #dysautonomia #pots #potsy #posturalorthostatictachycardiasyndrome #tachycardia #tachy #eds #zebra #ehlersdanlossyndrome #ehlersdanloslife #mcad #mastcellactivationdisorder  #gastroparesis #gastroparesissucks #servicedog #servicedogintraining #lovemylevi #yellowlab #yellowmellow #godhasaplan #purposeinpain #keepfighting #training #red #newbrother
Everyone this is my new brother red! About a week ago we found him at a gas station. We’ve tried to call rescues and dog shelters to find his owner but no one has called us back. So red is now a Blanford! My girls sister had been talking about getting an ESD or service dog for a while and this guy just loves her and has an awesome temperament. We are slowly trying him out and teaching him some things! He’s my new best friend! 🐾 #dissingdysautonomia  #dysautonomiasucks  #dysautonomia  #pots  #potsy  #posturalorthostatictachycardiasyndrome  #tachycardia  #tachy  #eds  #zebra  #ehlersdanlossyndrome  #ehlersdanloslife  #mcad  #mastcellactivationdisorder  #gastroparesis  #gastroparesissucks  #servicedog  #servicedogintraining  #lovemylevi  #yellowlab  #yellowmellow  #godhasaplan  #purposeinpain  #keepfighting  #training  #red  #newbrother 
Better Days - I’m about two months away from being 20 and I’m just hoping there’s no snow in June ☀️
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Better Days - I’m about two months away from being 20 and I’m just hoping there’s no snow in June ☀️ . . . . . .
My girl and I went to Lowe’s today to buy some supplies to start the house rebuild. It was crazy busy! But I did really well. Afterwards I went to the vet and holy moly I weigh 90lbs!! I’m gonna be a really really really big boy! The weather here has changed drastically over night so my girl and I had to grab our rain coats. Aren’t we cute!! 💖🐾 #dissingdysautonomia #dysautonomiasucks #dysautonomia #pots #potsy #posturalorthostatictachycardiasyndrome #tachycardia #tachy #eds #zebra #ehlersdanlossyndrome #ehlersdanloslife #mcad #mastcellactivationdisorder  #gastroparesis #gastroparesissucks #servicedog #servicedogintraining #lovemylevi #yellowlab #yellowmellow #godhasaplan #purposeinpain #keepfighting #training #rainjacket #lowes #trainingday
My girl and I went to Lowe’s today to buy some supplies to start the house rebuild. It was crazy busy! But I did really well. Afterwards I went to the vet and holy moly I weigh 90lbs!! I’m gonna be a really really really big boy! The weather here has changed drastically over night so my girl and I had to grab our rain coats. Aren’t we cute!! 💖🐾 #dissingdysautonomia  #dysautonomiasucks  #dysautonomia  #pots  #potsy  #posturalorthostatictachycardiasyndrome  #tachycardia  #tachy  #eds  #zebra  #ehlersdanlossyndrome  #ehlersdanloslife  #mcad  #mastcellactivationdisorder  #gastroparesis  #gastroparesissucks  #servicedog  #servicedogintraining  #lovemylevi  #yellowlab  #yellowmellow  #godhasaplan  #purposeinpain  #keepfighting  #training  #rainjacket  #lowes  #trainingday 
Dear mom,
I’m sorry it has to be like this. I wish you were able to get a good night’s sleep instead of getting a call from me "mom don't panic", or instead of dozing in a hospital chair all night, and having to go to work the next day. 
I wish you were able to go on vacations without worrying if today is going to be the day where I faint and hurt myself too much. 
I wish you were able to enjoy time with your friends or at your job without being glued to your cell phone, expecting the next call to be from me panicked or from the hospital. 
I wish it all went away, because I can’t stand seeing things put on the back burner for me. I know I’m never going to be able to take back all of the worry, and the time you spent caring for me, but I can assure you, Mom, I’m going to try my hardest to make you proud of me. I’m going to push myself as hard as I can because I want to see you smile the way you were always meant to. 
But I will succeed. I will survive this journey because I know you are right next to me. Thank you for always believing in me, for saying that I am just as capable of being someone as great as anyone else in this world. Thank you for never letting my health get the best of me, and telling me that there will be an end to this suffering someday, that there will be a moment of peace where you can look back and say “she made it.” And until then, I will appreciate every moment with you, the strong woman I strive to be. The woman who doesn’t complain about that hospital chair, the new diagnosis, the worry. The woman who hides her tears to be strong for me. Because without you, I wouldn’t be forcing myself to get out of bed in the morning and appreciate the beautiful world I am lucky enough to be in today.
Love, 
Your warrior. #spreadawareness #pots #sjogrens #syncope #spoonie #dysautonomia #chronicillness #vegan #bekind #mcas #aps #cfs #posturalorthostatictachycardiasyndrome #sjogrenssyndrome #autoimmunedisease #autoimmunediseases #warrior #chronicillnessfighter #csf #cerebralspinalfluidleak #love #fighter #antiphospholipidsyndrome #chronicfatiguesyndrome #mcad #mastcellactivationdisorder #mastcellactivationsyndrome 
#chronicillnesswarrior
Dear mom, I’m sorry it has to be like this. I wish you were able to get a good night’s sleep instead of getting a call from me "mom don't panic", or instead of dozing in a hospital chair all night, and having to go to work the next day. I wish you were able to go on vacations without worrying if today is going to be the day where I faint and hurt myself too much. I wish you were able to enjoy time with your friends or at your job without being glued to your cell phone, expecting the next call to be from me panicked or from the hospital. I wish it all went away, because I can’t stand seeing things put on the back burner for me. I know I’m never going to be able to take back all of the worry, and the time you spent caring for me, but I can assure you, Mom, I’m going to try my hardest to make you proud of me. I’m going to push myself as hard as I can because I want to see you smile the way you were always meant to. But I will succeed. I will survive this journey because I know you are right next to me. Thank you for always believing in me, for saying that I am just as capable of being someone as great as anyone else in this world. Thank you for never letting my health get the best of me, and telling me that there will be an end to this suffering someday, that there will be a moment of peace where you can look back and say “she made it.” And until then, I will appreciate every moment with you, the strong woman I strive to be. The woman who doesn’t complain about that hospital chair, the new diagnosis, the worry. The woman who hides her tears to be strong for me. Because without you, I wouldn’t be forcing myself to get out of bed in the morning and appreciate the beautiful world I am lucky enough to be in today. Love, 
Your warrior. #spreadawareness  #pots  #sjogrens  #syncope  #spoonie  #dysautonomia  #chronicillness  #vegan  #bekind  #mcas  #aps  #cfs  #posturalorthostatictachycardiasyndrome  #sjogrenssyndrome  #autoimmunedisease  #autoimmunediseases  #warrior  #chronicillnessfighter  #csf  #cerebralspinalfluidleak  #love  #fighter  #antiphospholipidsyndrome  #chronicfatiguesyndrome  #mcad  #mastcellactivationdisorder  #mastcellactivationsyndrome  #chronicillnesswarrior 
A Whole Different Man - Found this photo in the archives, shot sometime when it was warm ☀️
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A Whole Different Man - Found this photo in the archives, shot sometime when it was warm ☀️ . . . . .
Ice Cold - Didn't even realize there was so much coke products in this @cocacola w/ the homie @noah_farrar
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Ice Cold - Didn't even realize there was so much coke products in this @cocacola w/ the homie @noah_farrar . .
North Star - 35mm, Just picked up three rolls of color film and dropped one off
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North Star - 35mm, Just picked up three rolls of color film and dropped one off . .
Supreme - The best photo of Jon has yet to come and I think I might start getting into fashion shoots
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Supreme - The best photo of Jon has yet to come and I think I might start getting into fashion shoots . .
No Sleep - Thanks to Early Eyes for inspiring the first part of the title of this series "Good Hearts & Brooklyn Boys." Photos from last nights concert coming soon @earlyeyesband
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No Sleep - Thanks to Early Eyes for inspiring the first part of the title of this series "Good Hearts & Brooklyn Boys." Photos from last nights concert coming soon @earlyeyesband . .
Bright Eyes - Color shot of two of my friends from my new series "Good Hearts & Brooklyn Boys"
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Bright Eyes - Color shot of two of my friends from my new series "Good Hearts & Brooklyn Boys" . .
That Sweet Release - The color and tone in this shot from my current series "Good Hearts & Brooklyn Boys" turned out amazing
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That Sweet Release - The color and tone in this shot from my current series "Good Hearts & Brooklyn Boys" turned out amazing . .
Midnight Disco Ball - Another color film photo from my current series "Good Hearts & Brooklyn Boys."
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Midnight Disco Ball - Another color film photo from my current series "Good Hearts & Brooklyn Boys." . .