#zebrastrong #raredisease #rapesurvivor

#IVIG #INFUSION DAY! I MADE IT ANOTHER MONTH! My dose is $10,000/month My dose is pooled from 18,200 donors I have no immune system but the one I borrow. 🦓♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿🦓 #togetherwedazzle #mycrazylife #myEDS #riseup #adapt #ableism #fundraiser #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #sjögrens #Dysautonomia #myedschallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy #DISABLEDAF 🦓♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿🦓 Help Stacy raise $250 https://www.walkforpi.org/newyork/Stacyspoonley Team #INTACTIVISTS CAPTAIN since 2016 Stacy Spoonley stacyspoonley at Stacy Face's

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#christmas #ivig

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A #dayinthelife of a #spoonie: Festive #stpatricksday with the 'rents. I can't stress how good it is to get out of the apartment, especially to spend some time with #family . Cabbage, potatoes and carrots didn't know what hit 'em. Then my #gastroparesis didn't know what hit it. 😶 . . Rockin my @moetheband #moedown themed "Vote Rex" (@rex_a_vision ) shirt and sequinned suspenders. Yes, it's my only green shirt lol. #symptoms #dysautonomia #pots #irish #primaryimmunedeficiency #mastocytosis #mastcellactivationsyndrome #dreads #raredisease #spoonielife #dreadlocks #systemicmastocytosis #ehlersdanlossyndrome #research #cure #chronicillness #curvygirl @rarediseasedayofficial @rare @rareis___ @rarediseasedayus #invisibleillness @medtronic @chronicillnesshumor (at Lake Ronkonkoma, New York) https://www.instagram.com/p/Cp84e_fN6Rs/?igshid=NGJjMDIxMWI=

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A #dayinthelife of a #spoonie: Just some food shopping at @stopandshop to get out of the apartment and procure some #noms . I love my new shirt! It reads "Too #weird to live, too #rare to die," and it's from #fearandloathinginlasvegas in a totally #gonzo style. Took my #mask off for a quick photo. . . . #stpatricksday #symptoms #isolation #dysautonomia #pots #gastroparesis  #primaryimmunedeficiency #mastcellactivationsyndrome #dreads #raredisease #spoonielife #dreadlocks #systemicmastocytosis #ehlersdanlossyndrome #research #cure #chronicillness #curvygirl @rarediseasedayofficial @nord_rare @rare @rareis___ @rarediseasedayus #invisibleillness (at Stop & Shop) https://www.instagram.com/p/Cp7_rf5u5Bo/?igshid=NGJjMDIxMWI=

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A #dayinthelife of a #spoonie: Happy almost #stpatricksday my #zebrastrong #spoonies! #OBGYN day! Got the finalized #PCOS #diagnosis but that just means we can start the #metformin and after labs increasing my #spironolactone and get some of my #symptoms under control. . . Wearing my awesome green shamrock with #zebra stripes shirt and triple layer #mask I made. Mask and shamrock seat cover made by materials from @joann_stores #togetherwedazzle #dysautonomia #pots #gastroparesis  #primaryimmunedeficiency #mastcellactivationsyndrome #dreads #raredisease #spoonielife #dreadlocks #systemicmastocytosis #ehlersdanlossyndrome #research #cure #chronicillness #curvygirl @rarediseasedayofficial @rare @rareis___ @rarediseasedayus #invisibleillness @metforminoficial @medtronic https://www.instagram.com/p/Cp0vwl8Jtm8/?igshid=NGJjMDIxMWI=

[stacyspoonley]

A #dayinthelife of a #spoonie: Sometimes @stopandshop trips are the only outing we can handle; it takes a lot of #spoons out of us. But we make great #allergy friendly finds! To my fellow #zebra, make sure you wear a #mask in stores still; #covid hasn't gone anywhere. Wearing: #battlestargalactica Team #Cylon shirt with #MaraudersMap facemask . . #symptoms #dysautonomia #pots #gastroparesis #primaryimmunedeficiency #mastcellactivationsyndrome #dreads #raredisease #spoonielife #dreadlocks #systemicmastocytosis #ehlersdanlossyndrome #research #cure #chronicillness #curvygirl @rarediseasedayofficial @nord_rare @rare @rareis___ @battlestar_galactica_ @battlestar_galactica_ #invisibleillness (at Stop & Shop) https://www.instagram.com/p/CpyEjyrpUcY/?igshid=NGJjMDIxMWI=

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A #dayinthelife of a #spoonie : Couldn't watch the game but got to listen to the #carabaocup winners @manchesterunited beat @nufc on @tunein, and that was good enough for me! (Damn you @ESPN) Wearing a #manchesterUnited shirt with @battlestar_galactica_ #viper wing pins #mastcellactivationsyndrome #dysautonomia #pots #primaryimmunedeficiency #raredisease #rarediseaseawareness #spoonielife #disability #ehlersdanlossyndrome #togetherwedazzle #chronicillness #gastroparesis #dreads #curvygirl (at Holbrook, New York) https://www.instagram.com/p/CpJXi7zJhyH/?igshid=NGJjMDIxMWI=

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#adayinthelife of a #spoonie : Food shopping at @stopandshop in the little cart, listening to @moetheband . I've worn my #facemask for over a decade now. This one is a @harrypotterfilm flannel #MaraudersMap pattern I made a few years ago. Shirt from a @idfcommunity Walk for #PrimaryImmunoDeficiency of yesteryear. Have to stay safe! Happy #RareDiseaseAwareness month! . . #symptoms #dysautonomia #pots #gastroparesis #primaryimmunedeficiency #mastcellactivationsyndrome #dreads #raredisease #spoonielife #dreadlocks #systemicmastocytosis #ehlersdanlossyndrome #research #cure #chronicillness #curvygirl @rarediseasedayofficial @nord_rare @rare @rareis___ @rarediseasedayus #invisibleillness (at Stop & Shop) https://www.instagram.com/p/CpG6TH_tJvU/?igshid=NGJjMDIxMWI=

[stacyspoonley]

#adayinthelife of a #spoonie : Getting ready to go out in semi-formal wear (instantly amped up by my #battlestargalactica #viper pins) for some much needed #family time celebrating birthdays and getting #hugs! I love GETTING OUT of the apartment! Going to a place that I know can eat at is #inclusive, considerate and delicious. #Spacing my ears out again because the holes were just chilling anyway. . . . #foodallergies #dysautonomia #pots #mastcellactivationsyndrome #dreads #raredisease #rarediseaseawareness #spoonielife #ehlersdanlossyndrome #chronicillness #togetherwedazzle #curvygirl Using @curaleaf.usa #THC and Lazarus #CBD to get my #gastroparesis ready for @savianosnewyork (at Saviano's Italian Restaurant & Pizza) https://www.instagram.com/p/CpEiGEet5YS/?igshid=NGJjMDIxMWI=

[stacyspoonley]

#adayinthelife of a #spoonie : #ivhydration on the couch with Rooney, watching @rupaulofficial . It helps a lot with the #symptoms of #dysautonomia #pots, reducing #syncope events and reducing #tachycardia. It also keeps me out of the #hospital by getting me #hydrated when my #gastroparesis won't let me keep anything down. Staying home is also paramount regarding my #primaryimmunedeficiency and #mastcellactivationsyndrome. I love my #battlestargalactica #viper wings!!!! Look at how long my hair has gotten! I can braid my #dreads! . . . Shirt reads "Show your #rare show your #care" I inserted #portaccess to. #raredisease #rarediseaseawareness #spoonielife #dreadlocks #systemicmastocytosis #ehlersdanlossyndrome #research #cure #chronicillness #curvygirl #emotionalsupportanimal (at Holbrook, New York) https://www.instagram.com/p/CpBsXZwMRxA/?igshid=NGJjMDIxMWI=

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#raredisease month: Getting out of #medicaltravel for #triggerpoint #injections for #spinalhealth. Have to keep #connectivetissue in mind though when utilizing steroids. When I get home it's time for my @zynexmedical #tens Wearing my old "Show your #rare , show you care" @rarediseasedayus shirt . . . #stenosis #herniateddisc #osteophyte #portrusion #impigement #degenerativediscdisease #nerveroot #chronicillness #spoonie #connectivetissuedisorder @rarediseasedayofficial @nord_rare @rare @nsmobility (at Pain Management of Long Island) https://www.instagram.com/p/Co8Hdgvp9cU/?igshid=NGJjMDIxMWI=

[stacyspoonley]

Last week in the Chronicles of a #spoonie : #botox #injections for #chronic #migraine wearing a @lordoftherings triple layer #mask I made and the #port #access I love to #sew into my shirts (wearing #rarediseaseawareness Shirt) #raredisease @rarediseasedayofficial @nord_rare @rare #chronicillness #dreadlocks #painmanagement #botoxinjections (at Pain Management of Long Island) https://www.instagram.com/p/Co6L8SJN0Vr/?igshid=NGJjMDIxMWI=

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LET'S GO TEAM #INTACTIVISTS 6 YEARS RUNNING (ROLLING)!!! . www.walkforpi.org/newyork/stacyspoonley . I know I'm annoying, BUT: did you know that your donations to a #nonprofit are tax deductible??? You'll basically get your money back if you donate to my Walk for primary #immunodeficiency disease and help make sure I get plasma every month. My life literally depends on it, and there are shortages this year because plasma is being used in #covid treatment. Every donation means research grants and studies, searching for a cure, maintaining mandatory infant SCID screenings, giving a child another chance at life, being a hero. . www.walkforpi.org/newyork/stacyspoonley . Thank you Immune Deficiency Foundation for always updating content and engagement with forums, education, and virtual support meetings. I can't wait to keep up my #volunteer work, even if I can't log my hours! 🦓♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿🦓 #COVID19 #CORONAVIRUS #DONATE #zebrastrong #spoonie #adapt #fragilebutunbreakable #ZEBRAFASHION #primaryimmunodeficiency #DisabledJoy #disability #badassbitch #wheels #mycrazylife #invisibledisability #lgbt #chronicillness #raredisease #LGBTQIA #mask #plasma 🦓♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ (at Stonybrook Cancer Center) https://www.instagram.com/p/CS4hgusAF9k/?utm_medium=tumblr

[stacyspoonley]

I know I'm annoying, BUT: did you know that your donations to a #nonprofit are tax deductible??? You'll basically get your money back if you donate to my Walk for primary #immunodeficiency disease and help make sure I get plasma every month. My life literally depends on it, and there are shortages this year because plasma is being used in #covid treatment. Every donation means research grants and studies, searching for a cure, maintaining mandatory infant SCID screenings, giving a child another chance at life, being a hero. www.walkforpi.org/newyork/stacyspoonley . Thank you Immune Deficiency Foundation for always updating content and engagement with forums, education, and virtual support meetings. I can't wait to keep up my #volunteer work, even if I can't log my hours! 🦓♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿🦓 #COVID19 #CORONAVIRUS #DONATE #zebrastrong #spoonie #adapt #fragilebutunbreakable #ZEBRAFASHION #primaryimmunodeficiency #DisabledJoy #disability #badassbitch #wheels #mycrazylife #invisibledisability #lgbt #chronicillness #raredisease #LGBTQIA #mask #plasma 🦓♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ (at Stonybrook Cancer Center) https://www.instagram.com/p/CS4eZJ0g13V/?utm_medium=tumblr

[stacyspoonley]

When #Mastocytosis attacks! #cytokines #tryptase #mastcelldisease Add me on #snapchat BUT know I'm definitely going to be blasting about my @IDFCommunity fundraiser since I'm having a hard time making my goal this year. https://www.snapchat.com/add/stacyspoonie https://www.walkforpi.org/newyork/Stacyspoonley Help me keep getting plasma because I can't get the vaccine and My aides are #antivaxxers (at Broadway Avenue Holbrook) https://www.instagram.com/p/CSpHfZtALTV/?utm_medium=tumblr

[stacyspoonley]

Finally got my #hha She'll wear an N95 every day and help me go to appointments, shower, shop, cook and clean! I'll finally get to @stopandshop without hurting myself trying to use the carts, and @joann_stores @target whenever I want! $4 each way in the #paratransit SCAT bus May is #ehlersdanlos #awareness month! Let's get educated, proactive, and self advocate! . . . . . #Pride #primaryimmunodeficiencyn#gastroparesis #pots #eds #edsawarenessmonth #systemic #lupus and #mastocytosis #anaphylaxis #hypermobile #hypermobility #edsawareness #disability #wheelchair #raredisease #disabled #ehlersdanlossyndrome #homebound #glazersout #manchesterunitedfans #manchester #united #mufcgirls #mufc #mufcfans (at Holbrook, New York) https://www.instagram.com/p/COoFXw1gHKh/?igshid=12cqsjw6oy8wh

[stacyspoonley]

When #transport makes a 30min appointment into a 3.75 hour ordeal and you can't even fit in a taxi. #medicaid has changed nothing. Not even match highlights to pick apart. Thank you @stonybrookmedicine for letting me sit in the building! #xolair #paratransit #chronicillness #raredisease #primaryimmunodeficiency #wheelchairlife #mufc #glazersout #protest #gratefuldead #ManchesterUnited #stonybrook #anaphylaxis #LETSGO #redsgomarchingon #fuckliverpool they call me #mancunian #shite (at Stony Brook Cancer Center) https://www.instagram.com/p/COa18utgdcZ/?igshid=1horgaqobz0ao

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My face is cropped out ugh but this finale is a bit of an injustice tonight already! #teamSymone #dragrace #drag (at Holbrook, New York) https://www.instagram.com/p/COB6dFuAW9r/?igshid=1iq63hatxj284