Happy World PH day!! It might sound odd to say, particularly given all issues that this disease brings, but today I feel happy and supported not just by my family and friends but by all the locals who stopped to hear what I had to say. Thank-you so much to all my amazing support crew!! Not only did you help raise $270 in raffle money and donations you also helped me raise awareness for PH. Congratulations to the winner! Rory won third prize, @traceejay you won second prize and congratulations to Kieran who won first prize! (Kieran was over the moon to win, never having won anything before!!) @bearandcubseaford I am thankful to you for letting me use your space to raise awareness. Your local customers are amazing and I'm so glad 2 of them won prizes! @gingersnaps_au thank you for the amazing posters and social media tiles! @marggreenaway Thank you from the bottom of my heart for the amazing one of a kind donation. You received many compliments and the winner of the art series was excited to say the least! @team_phabulous and I are going to continue to work together to promote this disease that I've been stuck with for more than 23 years. Stay tuned for more awareness and fundraising adventures in the future! (at Bear & Cub) https://www.instagram.com/tegamegadrive/p/BxELdHmB4Ks/?igshid=1qewghghq73fr

My bitmoji knows what's up!! So lucky to have so many donations and so many people supporting me. PAH is a progressive disease that has an impact on my lungs and heart. Breathlessness and dizziness are just some of my symptoms. I have very good disease control, but unfortunately this is not the norm. I have a lot of PHfriends who need oxygen, more medications and some who are wheelchair bound. At the moment the only so called "cure" is a transplant. While this gets rid of the disease it isn't without its risk. It also means of still have to take many medications for the rest of my life. But this is something that may be an option in the future. Stay tuned for more fun posts show casing my PH related decorations, food and posters. #breathless #chronicillness #ipah #phna #pah #phsucks #phuckit #phamily #phriends #fundraiser #awareness #veletri #lifesaver #bitmoji #idiopathicpulmonaryarterialhypertension #thankful #alive #donatelife @team_phabulous @itsalungshot https://www.instagram.com/p/BqRFO5WF5Sa/?utm_source=ig_tumblr_share&igshid=1k926pv41kg0m

From the perspective of those providing me medical care, a Hickman line is not a big deal, to me it is much more. This time around it isn't just life saving it is also about me taking back my independence. Thanks snapchat for good filters it covered up 48 hours of worry lines, quite a few tears and half a bottle of pink chlorhex. Home now safe and sound with my cat, a cup of tea, heat pack and some strong pain killers #hospitalglam #hospital #hickman #cvad #ipah #pulmonaryhypertension #veletri #lifesaving #indepdent #selfcare #spoonie #alfredhospital @thespooniesisterhood @thealfredhospital

WORLD PH DAY! Pulmonary Hypertension has many face. These are just some of them over the last 12 months. There are ups theres are downs, it's all about PERSPECTIVE. Sometimes its glass half full, sometimes it is NOT! Happy World PH Day! Thinking of all of my PHriends today, but also all of the people who support us, through thick and thin! #awareness #health #happy #ipah #phawarenessmonth #phaa #lung #heart #lungfoundationaustralia #friends #family #support #thankful #brightside #chronicillness #spoonie #uneditedtruth #nofilter #latergram #weneedacure #smile #behappy (at The Alfred)

Take the 60 second straw challenge! For a patient with PH breathing day to day can be tough, in fact it's the equivalent to breathing through a straw! Try it for just 60 seconds to see exactly what it's like. Then try to imagine daily tasks or something more difficult like climbing stairs. #phawarenessmonth #pha #ipah #lfa #lungdisease #lungfoundationaustralia #lungfoundation #breatheasy #breathless #chronicillness #awareness #weneedacure #chronicallychill #illness

Are you aware? #phawarenessmonth #lfa #lungfoundationaustralia #chronicillness #idiopathicpulmonaryarterialhypertension #lungs #lungdisease #bluelipchallenge

Flu season is upon us. The flu vaccine is a simple and effective way to provide immunity to known strains as well as providing herd immunity to those too unwell to receive the vaccine. I am usually amongst the front of the que to get my vaccine. However this year I will be relying on the community around me to protect me. I am deemed too unwell currently to be allowed to have the vaccine. I beg every single one of you reading this to seriously consider getting the jab done now! Please don't put my life in jeopardy for the sake of a single needle. #pah #chronicillness #infection #flu #flushot #influenza #immunity #illness #getthejab #savealife #science #life #antivax #antivaccine #help #provaccine #idiopathicpulmonaryarterialhypertension (at Elwood, Victoria, Australia)

What a great way to spend an evening. Inspired to lend a hand and a louder voice to raising awareness for lung diseases and more specifically pulmonary hypertension. Thanks Sir Peter. Top night. #admiraltyhouse #kirribillihouse #awareness #lungdisease #raredisease #ipah #pulmonaryhypertension #idiopathicpulmonaryarterialhypertension #lfa #lungfoundation #lungfoundationaustralia #governergeneral #gg #foodandwine #freeflowing #adventures #sydney #sydneyharbour (at Sydney Harbour)

Guest speaker/Consultant for the Yansen-Actelion ANZ 2018 Confrence. Presenting a patient experiencing PAH. What a venue! #awareness #pah #idiopathicpulmonaryarterialhypertension #pulmonaryhypertension #speakout #education #learn #advocacy #actelion #consultant #thanks #patient #experience (at Sofitel Melbourne on Collins)

🙃🙃🙃🙃 When you see yourself on the train! #melbourne #advertising #lungdisease #lungfoundationaustralia #yellow #omg #famous #awareness #idiopathicpulmonaryarterialhypertension

Read and share 🙃 I'm sharing my story internationally. November is almost over. Awareness month for PAH nears an end. I've raised over $400 just by selling chocolates, so thanks to all my chocoholic friends and colleges. Hopefully this also means I've gotten many more minds thinking about invisible illnesses, silent diseases and that this will help you and others to be more open minded. With Chronic illness things change year to year, month to month and day to day. Be thoughtful, be kind and be caring #PAH #pulmonaryarterialhypertension #chronicillness #bekind #understanding #australia #lungfoundation

Take time to appreciate the small things in life. Thanks little garden for adding colour to my work space. Do anything to turn your week/month/year around. Shitty things are bound to happen. It's not about what happens but how we deal with it. IPAH gets me down from time to time, but you just have to kick on. PHA awareness month is half way. Keep and eye out for my face on trains, on facebook and if you see me in person ask about the chocolates I'm selling. #turnthatfrownupsidedown #green #breath #smile #behappy #fakeittillyoumakeit #phaa #lfa #heart #lungs #lungdisease #rarediasease #awareness #stigma #pulmonaryarterialhypertension

Pulmonary Hypertension is not glamorous, it's not fun and it's never over. It is always with you, but I will never let it define me. Appreciate everyday you have, with as much energy and enthusiasm as you can muster. Awareness of this disease and overs like it may changes. Special thanks to cath lab staff. You rock. #optimistic #enthusiastic #life #lying #brave #notbrave #criedmyeyesout #itsover #untilnexttime #itsneverover #pulmonaryarterialhypertension #chronicillness #rightheartcatheterization #heart #lungs #lungdisease #awareness (at The Alfred)

Understanding is rare, lung diseases are not. #lungfoundationaustralia Spread awareness for those things less understood. Diagnosed with #pulmonaryarterialhypertension At the such a young age and told I had 5 years to live. With thanks to @thealfredhospital for all their care now and extra special thanks to @rchmelbourne for care all those years ago. We are a long way from a cure, but hopefully a very short way from overcoming #stigma Please share! #pulmonaryarterialhypertension #share #care #cure #australia #love #nothate #lungdisease @ph_kids_sa @phatoronto @phassociation @phaware @phatoronto @phacanada @positively_erin @pulmonary_disease_awareness

Continuing to spread awareness for PAH and other lung diseases. Understanding is rare, lung diseases are not. Visit http://understand.lungfoundation.com.au/stories/tegan/ to hear more about my story, but also more about others! #pulmonaryhypertension #pulmonaryarterialhypertension #chronicillness #stigma #awareness #understanding #kindness #phaware @phaware @phatoronto @positively_erin @phassociation @phenomself @ph_kids_sa @pulmonary_disease_awareness @ph_positivevibes @phacanada (at Melbourne, Victoria, Australia)

Understanding is rare. Lung diseases are not.

Celebrating #pulmonaryhypertension day! #phawareness means a lot to me. This year more than others. In June I'll be heading to Canberra to talk at a Parliament dinner and July I'll be presenting in Barcelona!! Spead the word and become #phaware #phriends #phamily #thanksmum #family #sisters #support #worldphday #stepupforph #chronicillness #spoonie #imawarethatimrare #bluelipkiss #veletri