Come take my meds with me!

This time 8 years ago, I was travelling around New Zealand with my husband and our friend. We had the best time! I remember it took my friend and me 10 jumps to get this pic. I'm not sure if I can ever jump that high again, but if I can - I would love to recreate this pic again ❤️ #grief #loss #friends #jump #newzealand #travel #flashback #chronicillness #raredisease #autoimmunedisease #myositis #antisynthetasesyndrome #polymyositis #ild #interstitiallungdisease #raynaudsphenomenon #mechanicshands #prednisone #moonface #spoonie #zebrastrong #myositiswarrior https://www.instagram.com/p/CpyBuWUvqrf/?igshid=NGJjMDIxMWI=

Huge shout out to @spooniesistershop !! I'd say the biggest concern with my condition is my lungs, and I knew that buying this t-shirt was a perfect way to dedicate my love for them ❤️ #spooniesistershop #business #tshirt #awareness #lungs #print #illness #health #love #design #store #chronicillness #invisibleillness #myositis #antisynthetasesyndrome #polymyositis #intersitiallungdisease #ild #raynaudsphenomenon #mechanicshands #raredisease #autoimmunedisease #spoonies #myositiswarrior #zebrastrong #moonface #prednisone #medication https://www.instagram.com/p/CpnyIt9vTuq/?igshid=NGJjMDIxMWI=

About me...

A little video I made about Antisynthetase Syndrome for Rare Disease Day. Enjoy! ❤️

BAKING... ... is one of the things I am so glad I can still do. My birthday is coming up so I decided to bake with a friend! We made Pavlova & Strawberries and Gluten-free Cupcakes w/ dairy-free chocolate frosting. It took hours but the catch-up and the result of our hard work were worth it 🥰 #baking #birthday #glutenfree #pavlova #strawberries #sugar #chocolate #cupcakes #meringue #frosting #bake #chronicillness #raredisease #antisynthetasesyndrome #invisibleillness #myositis #polymyositis #ild #interstitiallungdisease #mechanicshands #raynauds #spoonie #fridaynight https://www.instagram.com/p/CpFDd0EucDH/?igshid=NGJjMDIxMWI=

FINALLY AN OFFICIAL DIAGNOSIS! My husband and I went to my follow-up appointment with my rheumatologist this afternoon, and it went really well! I have... *drum roll* Antisynthetase Syndrome. It is a set of symptoms that occur with myositis, so in my case I have; Polymyositis, Interstitial Lung Disease, Mechanic's Hands, and Reynaud's Syndrome (hence the tingliness). A top indicator for the A.S.S is the Anti-Jo-1 antibody which is what I have in my bloodwork. She said she was able to diagnose me pretty quickly because I have been on top of all the tests I had to do (good job, Waiyee!). Because I'm doing well on my current meds, I can start my long-term medication! She wants me on Mycophenolate Mofetil (CellCept) first along with my other meds (Prednisone, Pantoprazole, and Bactrium), and then eventually do an infusion medication called Rituximab (Rituxan) as long as I don't have any infections in my lungs. There are side effects, the big one being cancer so she wants me to have a CT scan of my abdomen in the next few weeks. So yeah...! I felt very positive coming out of my doctor's visit for once. I feel relieved but I know this is still the beginning of my journey. Will try to update as much as I can! If you happen to have the same condition, please give me any tips or advice on anything about it! Medication, diets, lifestyle changes, etc. I would love to learn more about it. This is part of me now and I accept it. I would also like to take this opportunity to thank my doctors, family, friends, and especially my husband and cat for understanding and supporting this unexpected journey of mine. I wouldn't have been determined to keep going if it wasn't for them ❤️ #diagnosis #antisynthetasesyndrome #myositis #polymyositis #interstitiallungdisease #ild #mechanicshands #raynaudssyndrome #chronicillness #invisibleillness #spoonie #invisiblekingdom #acceptance https://www.instagram.com/p/CnBG-X7L31R/?igshid=NGJjMDIxMWI=

"A chronic illness is not a life sentence. One can learn to live well despite it. But first, one must learn to live with it." Paul J. Donaghue & Mary E. Siegel, Sick and Tired of Feeling Sick and Tired: Living with Invisible Chronic Illness. #quotes #bookstagram #motivation #chronicillness #sickandtired #selfhelp #mentalhealth #book #life #living #invisibleillness #truedat #motivationalquotes #livewell #learn #myositis #myositiswarrior #spoonie #zebra #antisynthetasesyndrome #autoimmunedisease #raredisease #interstitiallungdisease #raynaudsphenomenon #mechanicshands #health https://www.instagram.com/p/CpgKH00PYHp/?igshid=NGJjMDIxMWI=

Happy Lunar New Year! I wasn't sure if I could do anything special for LNY today because I had the lowest energy last night, but I knew I had to do something. Miraculously, all my energy came back today so I was able to whip up so many dishes! I miss the food from restaurants but I'm so glad I was able to make something nice for my little family 🥰 #lunarnewyear #lny #food #cooking #chinesefood #chinese #chinesenewyear #littlevictories #yearoftherabbit #aip #autoimmuneprotocol #autoimmunedisease #chronicillness #invisibleillness #raredisease #antisynthetasesyndrome #myositis #polymyositis #ild #interstitiallungdisease #raynaudsphenomenon #mechanicshands #zebrastrong #spoonie https://www.instagram.com/p/Cnv-6QlOCYo/?igshid=NGJjMDIxMWI=

BIRTHDAY. Thank you all for the birthday wishes! Who would have thought it would land on Rare Disease Day AND this would be the first one with my illness? I had a lovely day (despite the back pain). My family chatted with me online and we had a lot of fun. My friend came over later and brought me Din Tai Fung. We drank some wine and just ate! Yeah, it was great. Last year I had a massive house party. It's just nice not to make a huge effort for once and try to contact people you don't see often to try to celebrate you for one night. This year has given me a new perspective on friendship and made me appreciate those who truly love me ♥️ #rarediseaseday #birthday #celebration #friendship #friends #chums #mates #love #dintaifung #soupdumplings #xiaolongbao #food #dinner #games #chronicillness #autoimmunedisease #antisynthetasesyndrome #ild #invisibleillness #interstitiallungdisease #raynaudsphenomenon #mechanicshands #spoonie #zebrastrong #myositiswarrior https://www.instagram.com/p/CpRM45arp_-/?igshid=NGJjMDIxMWI=

One thing I learned from my Myositis support groups - is to advocate yourself. I heard so many negative doctor experiences that makes me shocked and flabbergasted. You're doctors! How could you not believe in your patients? They're in pain and you say "It's all in your head"?!?. This morning, I received a lovely positive update from my rheumatologist and I wanted to share it. THIS is how a doctor should communicate with patients. Even though I hate doing the tests, I'm really glad my doctors have been responsive and on top of everything to help me. Any question I ask them, they have answered me promptly. So yeah, ADVOCATE YOURSELF. Btw for my fellow Myositis warriors who are curious - my 1st CK result was 14,000. 2nd resulted in 4,000. Now, it's 500! WOO ✌🏻 #doctors #doctorpatientrelationship #patient #healthcare #autoimmunedisease #chronicillness #mychart #myositis #myositiswarrior #hospital #testresults #advocateyourself #advocate #raredisease #invisibleillness #spoonie #zebrastrong #rarediseasemonth #rarediseaseday #antisynthetasesyndrome #polymyositis #ild #interstitiallungdisease #raynaudsphenomenon #mechanicshands https://www.instagram.com/p/CoNais3vegn/?igshid=NGJjMDIxMWI=