Warrior Wednesday (from PH Positive Vibes)

I was asked by Evelyn (click here to see her previous PHighter Friday entry) to write a bit about myself for a PH Instagram account that she runs called PH_postivevibes.

Her Instagram shares inspirational quotes, stories from other people with PH, along with healthy recipes and tips. I thought I would share the post she asked me to write for a segment she runs called Warrior Wednesday, in which a person with PH shares a little about themselves.

Please follow PH_postivevibes on Instagram to find more Warrior Wednesday posts, along with daily motivation!

Warrior Wednesday

I was diagnosed with stage 3/stage 4 IPAH on Christmas Ev 2013 after a RHC. There was no question about it, I was dying. If I wasn’t diagnosed when I was I probably wouldn’t have survived through the month. Within a matter of 3 months I went from a healthy 25 year old who had started an amazing job managing an office at a university, to someone who was bed ridden.

At the busy bakery I worked
at before I got sick

Before I was diagnosed I was very active. Months prior I worked at the busiest bakery in town lifting heavy boxes of supplies up a big stair case. I traveled to Montreal for work and wondered around the city for hours after my training. I worked out for 30 minutes after work, and walked to the closest coffee shop on my breaks. I could also manage to catch the 5:05 pm bus with some light jogging. Around October I noticed that I started having trouble with all these activities. By December it felt pretty much “game over” for me.

I was sick, disabled, and I was on oxygen 24/7. I could no longer get dressed by myself, make my bed, or shower. My dad would have to carry me up the stairs in our house. My independence and my ability to be active were gone. I was devastated (I guess I still am,) and I was angry. However, I knew that there are exceptions to everything. I also know how flawed statistics are. So I allowed my anger to ignite me in positive ways. I brushed the dust of my Wii Fit and started doing yoga as soon I was able to stand again. I did this everyday for 5 minutes, then 10, then 20. Once it got too easy I would move on to something else. Now I can do those simple yoga moves without oxygen- it’s amazing to think that I used to have to do it on 4 liters of oxygen per minute.

Once I felt brave enough I joined some online PH support groups. I noticed that there were people who have had PH for over 10-20+ years and were still going strong. I thought “Wait a second- my doctors and Google didn’t tell me about these people!” I soon thought that these kind of stories and information should be available. From there I started my blog ‘The PHight or Flight Project.’ There is a segment on my blog called ‘PHighter Friday’ where someone with PH talks about their life after diagnosis. There are over 50+ stories from people with PH who have beaten all sorts of statistical odds, such as being a long term survivor, adopting, returning to work, participating in marathons, and improving dramatically after diagnosis.

Baking for the first time since diagnosis (over a year and half later.)
I now only eat and bake gluten free items.

I receive messages from people that are newly diagnosed with PH who are glad they found the blog. One person said they found the blog while they were in the ICU after they just got diagnosed. They sent me an e-mailing explaining how the stories on the blog helped them to hold onto hope. Receiving messages like that is my main inspiration to try and keep the blog going. I think that so many people with PH are willing and happy to contribute their inspiring story to the blog because they know how important hearing these kind of stories are for hope after diagnosis.