#shinelikeshanann

[stacyspoonley]

View this post on Instagram

A post shared by Stacy Spoonley (@stacyspoonley)

Routine blood drawing #rheumatology labs with Mini @tztheidfzebra Be careful today! The #heat is dangerous! Don't skip wearing your #braces ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ #mycrazylife #myEDS #riseup #adapt #ableism #togetherwedazzle #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy #DISABLEDAF #disability (at Vascular Associates Of Long Island) https://www.instagram.com/p/B0jDfR1Agsi/?igshid=155rao4p1j8vi

[sarahhuntthrives]

Even after she passed, her team kept sharing the Thrive Experience. She hit 200K on New Year’s Eve! Her family continues to benefit from her dream, her passion, and her desire to change lives even after her death! #shinelikeshanann #letyourweirdlittlelightshinebig #dreams #legacy #health #wellness #financialfreedom #believebigger #hustleforjoy #bittersweet #2019istheyearofus #thrivewithdawayneandsarahin2019 #T22B #livelovethelvthrivelife https://www.instagram.com/p/BsIeFgkFOKa/?utm_source=ig_tumblr_share&igshid=px327hc5x3xp

[stacyspoonley]

Hope everyone is enjoying the @ehlers.danlos talent show I will never be able to afford a ticket, so I'm really grateful for the live stream ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ #mycrazylife #myEDS #riseup #adapt #ableism #togetherwedazzle #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy #DISABLEDAF @ehlers.danlos @idfcommunity @tztheidfzebra @dysautonomiaintl @themightysite @genesight (at Stacy Face's) https://www.instagram.com/p/B0pL0iWAy3b/?igshid=1mepbq1pipcft

[stacyspoonley]

View this post on Instagram

A post shared by Stacy Spoonley (@stacyspoonley)

Wish I was there in Nashville! I feel like every one of my stripes is a part of you all ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ #mycrazylife #myEDS #riseup #adapt #ableism #togetherwedazzle #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy #DISABLEDAF @ehlers.danlos @idfcommunity @tztheidfzebra @dysautonomiaintl @themightysite @genesight (at Stacy Face's) https://www.instagram.com/p/B0n3IkTgRr8/?igshid=1ks2jzvu0453j

[stacyspoonley]

I'M GOING TO CHEW AGAIN! Bad news is I'll be able to talk for a LONG time! 😝 the ear pain, popping and grinding is probably here to stay but I'm confident the surgeries bought me so much time and was the safest way to get all the infected synovial material out of my face. another part of the structural dysfunction is from the subway attack and since its only been 2yrs a bit more morphing is expected but just being able to save the discs is amazing Thank you so much to my maxillofacial surgeon @dr.michael.proothi for saving my face #Togetherwedazzle! ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ #mycrazylife #myEDS #riseup #adapt #ableism #fundraiser #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy #DISABLEDAF ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ Help Stacy raise $250 https://www.walkforpi.org/newyork/Stacyspoonley (at Stony Brook Oral and Facial Surgery) https://www.instagram.com/p/B1tmpVkg_Yv/?igshid=fcff8ezvu0jh

[stacyspoonley]

#Togetherwedazzle! ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ #mycrazylife #myEDS #riseup #adapt #ableism #fundraiser #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy #DISABLEDAF ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ Help Stacy raise $250 https://www.walkforpi.org/newyork/Stacyspoonley (at Stacy Face's) https://www.instagram.com/p/B1ranJfg4cx/?igshid=pl2moir45p60

[stacyspoonley]

Thank you so much to @dr.michael.proothi for helping me keep my smile! February to June took a lot but it was worth it The bad news for you is I'll be able to talk for a LOOOOOONG time! #livingwithpi is dangerous but every moment I'm here is worth it! #Togetherwedazzle! ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ #mycrazylife #myEDS #riseup #adapt #ableism #fundraiser #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy #DISABLEDAF ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ Help Stacy raise $250 https://www.walkforpi.org/newyork/Stacyspoonley (at Stony Brook Oral and Facial Surgery) https://www.instagram.com/p/B1qszFFABS_/?igshid=12x7yzs2w8079

[stacyspoonley]

#MUFC We lost https://www.walkforpi.org/newyork/Donate/Index/976139?submit=Continue #Togetherwedazzle! ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ #mycrazylife #myEDS #riseup #adapt #ableism #fundraiser #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy #DISABLEDAF ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ (at Stacy Face's) https://www.instagram.com/p/B1XJKRLgPYR/?igshid=c8njckbvzshc

[stacyspoonley]

#Togetherwedazzle! ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ #mycrazylife #myEDS #riseup #adapt #ableism #fundraiser #plasma #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy #DISABLEDAF ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ @ehlers.danlos @gpandibs @mastocytosis.awareness @themightysite @grifols_plasma @idfcommunity @dysautonomiaintl @mynyit @nynorml # @primaryimmunodeficiency @singersewingcompany @tztheidfzebra (at Stacy Face's) https://www.instagram.com/p/B1Tgy9VAgoX/?igshid=ew4ij0jxohpv

[stacyspoonley]

#Togetherwedazzle! ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ #mycrazylife #myEDS #riseup #adapt #ableism #fundraiser #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy #DISABLEDAF ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ The Mastocytosis Society The Mighty The Ehlers-Danlos Society Ehlers-Danlos Syndrome on The Mighty Dysautonomia International Dysautonomia International - New York Support Group Ehlers Danlos EDS New York Tristate Area Gastroparesis Awareness Rare Disease on The Mighty Chronic Illness on The Mighty Gastroparesis on The Mighty Dysautonomia on The Mighty Interstitial Cystitis Today Sjogren's World Invitae Ambry Genetics GeneSight 23andMe MTHFR & Methylation analysis automation by geneticgenie.org OpenSNP National Organization for Rare Disorders, Inc. (NORD) United States Immunodeficiency Network - USIDNET Orphanet (at Stacy Face's) https://www.instagram.com/p/B1PMrsGAhCU/?igshid=15d0i9cmqb8ii

[stacyspoonley]

https://m.facebook.com/story.php?story_fbid=10156850945826312&id=537991311&sfnsn=mo&s=537991311&w=n #Togetherwedazzle! ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ #mycrazylife #myEDS #riseup #adapt #ableism #fundraiser #plasma #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy #DISABLEDAF ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ @ehlers.danlos @gpandibs @mastocytosis.awareness @themightysite @grifols_plasma @idfcommunity @dysautonomiaintl @mynyit @nynorml # @primaryimmunodeficiency @singersewingcompany @tztheidfzebra (at Stacy Face's) https://www.instagram.com/p/B0_XfZMAw4I/?igshid=twn638awiegc

[stacyspoonley]

#Togetherwedazzle! ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ #mycrazylife #myEDS #riseup #adapt #ableism #fundraiser #plasma #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy #DISABLEDAF ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ @ehlers.danlos @gpandibs @mastocytosis.awareness @themightysite @grifols_plasma @idfcommunity @dysautonomiaintl @mynyit @nynorml # @primaryimmunodeficiency @singersewingcompany @tztheidfzebra (at Stacy Face's) https://www.instagram.com/p/B0_LqwfAQgi/?igshid=s9vkq7ds1iuf

[stacyspoonley]

Got #heatstroke trying to get between platforms and the trains didn't wait even though conductors said they were calling it in. Was spoken to so harshly by an employee w the new #LIRR Care program and @longislandrail that I had to call in a complaint in real-time, then the nightmare continued on multiple tracks Friday in the sun #thefutureisaccessible Came in on track 6 needing to get to track 4 (up and over) train closed doors when I got to the platform. Go back up to find a train and get them to hold it. Staff rude AF so instead of just finding a train now I have to talk to the supervisor that staff originally said didn't exist. Supervisor focuses on my conduct rather than situation (Do not tell someone in a wheelchair to calm down when train doors close in her face in 90° plus weather). Eventually told it'll be track 8 but the elevator is out so the train on track 7 has to wait and get me to "go right through" (trying to get me to just go instead of waiting for the ramp). Track 8 changed so now I could have stayed between 6-7. Especially because the doors on the track 7-8 side where I'm waiting didn't open at all and multiple conductors were needed to get it to stop departing and open the doors instead. Btw supervisor still standing behind me being super obvious that he was looking for a way to spin the situation (again still focused on my conduct rather than mitigating the issue and going on his merry way). All i wanted was to go home. Think I want to use my hands on the phone while trying to get through, up, over etc? They're waiting and getting a ramp. Situation you created but I was blamed for is over. #gtfo It took me 4.5hrs to get home. ♿🥄❤🥄💛🥄💚🥄💙🥄💜🥄♿ #mycrazylife #myEDS #riseup #adapt #ableism #togetherwedazzle #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy @ehlers.danlos @idfcommunity @dysautonomiaintl @mastocytosis.awareness @mtalirr @themightysite @sjogrensfoundation @nord_rare @gpandibs (at Jamaica (LIRR station)) https://www.instagram.com/p/B0Q500YA2rv/?igshid=1uityloupyrv5

[stacyspoonley]

Another hospital stay without nutrition bc of my #anaphylaxis and #gastroparesis down. One day. One day. #mycrazylife #myEDS #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #systemicmastocytosis #EHLERSDANLOS #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #myhsdchallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy (at Stony Brook University Hospital) https://www.instagram.com/p/By78GgBA0EM/?igshid=n4vno0pyrxnv

[stacyspoonley]

Call this frosty bitch Ice Queen bc she's not really getting any other #postop pain management #mycrazylife #myEDS #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #myhsdchallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy (at Stony Brook University Hospital) https://www.instagram.com/p/By6qifnArEq/?igshid=lh5s2kijaups

[stacyspoonley]

He may be a day late but my love is with me now and is certainly not a dollar short lol #TrigeminalNeuralgia #surgery #mycrazylife #myEDS #fragilebutunbreakable #primaryimmunodeficiency #PIAwareness #raredisease #zebrastrong #anaphylaxis #systemicmastocytosis #EHLERSDANLOS #gastroparesis #ShineLikeShanann #sjögrens #Dysautonomia #wearejaquiestrong #myedschallenge #myhsdchallenge #chronicillness #EDS #MCTD #CIDP #POTS #crps #zebrafashion #DisabledJoy (at Stony Brook University Hospital) https://www.instagram.com/p/By6R4TBAfdh/?igshid=15m2631c9uh52