#stepupforph

[tegamegadrive]

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

[tegamegadrive]

Making the World PH aware

Today is World PH day. 

Helping spread the word that there are many people suffering through the same illness I suffer through, and most of us look pretty normal on the outside, but a little but weirder on the inside.

According to an American website it only takes 3 steps for a person with PH to feel symptoms. 3 is my favourite number, my birthday date, but this time the number isn’t so nice. 3 steps! 

I am lucky, I know I am. My meds work pretty well for me, maybe even a bit too well...i need a tune up. (Turning them down in the near future!) 

Thank goodness...cos this is a LOT (Only a month of IV meds)

My symptoms don’t bother me most of the time. It’s been so long (only a short 22 years, or 80% of my life), so it’s hard to tell what was puberty or growing or “normal”. It’s even harder to tell which problem is what or if a medication is causing something or my body telling me something or just a normal thing and I should just curl up in bed and have a cup of tea!

Being diagnosed at 5 means it becomes ingrained in your identity, separating who you are from what you have can be difficult, but I like to think I have found a happy balance. 

I attempt to never let my disease or symptoms get the better of me. I don’t let it rule my life, I make it work for me. If you follow this blog back I feel like I fucking owned this disease.

Sadly, for many this disease owns them. 

Shortness of breath, difficulty walking, climbing stairs, standing for long periods of time, retaining water, weight loss or gain, side effects from medications, changes in your hair and skin, blue lips. Again I am lucky.

Side effects can include Jaw pain, constipation, loss of appetite, nausea, headaches, flushing, skin rash, gastric upset, foot pain, leg pain, blood thats too thin, nervousness, vomiting, agitation, chest pain, low heart rate, low blood pressure, dyspepsia, insomnia, nose bleeds, visual disturbances, nasal congestion and many more. 

This is only the short list for the two medications I take for IPAH, there are many more. I only suffer from a few of these, and I manage them well. Or at least I try to or pretend I do. I don’t let them bother me at any rate.

So read up and become educated of rare diseases! 

I’m aware that I’m rare!

As I don’t have a picture of me climbing stairs...which is this years motto! I’ve decided to post my first picture of the AMAZING Northern Lights, which I took MANY steps to get to!