#phsucks

Gotta love a resting heart rate of 141. Eff pulmonary hypertension. #restingheartrate #pulmonaryhypertension #phsucks #raredisease #oneinamillion #life

When he catches a cold! When you have #PH a simple cold can bring you to the hospital, therefore i need to protect myself more than healthy people! I have my own hospital masks box and we both wear them when we’re in the same room but right now he has to be in quarantine in the bedroom! This is my #LifeInPurple! #LifeInPurple #sickgirlproblems #PHlife #PHsucks 💜💪😷

When in pain, i find myself something to do to change my mind because there's nothing i can do to make it go away! #PHlife #livingwithPH #PHsucks #PHwarior #iamrare 💜💪

Getting my new medication to add to my endless list! Wooop woop! #sickgirllife #PHsucks #PHuckph #livingwithPH 💜💪💊💜 (at Jean Coutu Affiliated Pharmacies)

After a sinus infection, a chest cough and congestion, this cold seems like it will never leave me!! Thanks to PH i cant even take anything for my cough! #fuckPH4life #sickgirlproblems #livingwithph #phsucks #sicklife #pulmonaryhypertension 💜🖕😷💟

#fuckphkindaday #fuckph #phsucks #phightingalways #livingwithph #pulmonaryhypertension #lungdiseasefighter 💜💪💟🖕

I’m getting closer to my goal... found out Cleveland, Chicago and Madison are all willing to look at my case... this whole transplant thing might be real life soon. I’m terrified, but also, well mostly terrified but somewhere in there I also really cannot fathom a life with healthy lungs, oh god, just... ugh. Emotions. <3 

My cath date is set (for good this time- better be-) August 14th.  I am nervous. I am nervous because lately walking from room to room hurts. My chest aches. My heart beats too fast against my ribs like it wants to escape through my throat.  I cannot handle everything happening in my life right now. I feel like I've been standing on the edge so long and with these cath results and me finishing my degree in the winter... there will be nothing left to "wait" for. I will have to jump. And into what I don't know and that scares me.  I wish my heart felt better. I wish I could tell my parents the truth when they ask how I feel. I wish I could tell them how scared I am, how much my heart hurts some days, how fast it beats, how quick I tire. But I don't want to worry them. I don't want them to have to watch their child die. That's a backwards cruel thing for nature to do.  I don't know that it's as bad as it is. I have so many other "inflammatory" things happening right now in my body that could be severely affecting this. I just want my body to stop... stop eating itself, stop destroying itself. I want to live. I don't want this. I'm not ready.