I decided to create 'Saving Jules' in the hopes that other parents will chance upon my blog and discover others on the same journey they are, with a diagnosis of Idiopathic Pulmonary Arterial Hypertension. Yes, we face every day with the knowledge that this may be Julian's last, but what a journey we are on with him!
Thursday, 11 July 2013
Living with IPAH - Part Two
Warning- this input has one questionable word
that no parent wants their 8 year old saying. Please proceed carefully (not
that this blog series hasn’t had any language in it already, huh?)
Julian’s point of view:
everybody. And welcome to MY point of view. The point of view that comes from
the completely reliable 12 year old
who never has anything dishonest to say…or at least not all the time.
I have a rare heart/lung condition called Idiopathic Pulmonary Arterial
entry is not of me saying (imagine these with a posh and British sort of
accent) “Oh, look at me, I have a rare heart condition and the world should
give everything I want… and if not I’ll throw a tantrum” NO. That’s just awful,
don’t you think?
question I get asked a lot is:
“What’s it like to have your heart condition?” well, here’s the answer. IT SUCKS!!! Symptoms that I get are
anything anyone else would not hope
for. I get fatigue, hyperventilation, shortage of breath, and a whole lot more
that I just cannot memorise. So, once again… MY CONDITION SUCKS.
one thing that is the most irritating about my condition is the disabled car
park. If you’ve read “You don’t look sick”, post #9 you’ll know. I just hate
sitting or standing next to one of my parents argue over a stupid medical
condition to some bozo who’s just slipped into a bloody car park just as our responsible father or mother has just been
about to do the same.
now I’ve gotten that out of me...
also have lots of food restrictions, like I can’t eat cranberries, grapefruit,
or too many greens. And that fact just blows me away. Greens? Too many leafy
greens? Come on!!!
leafy green I can’t have too much of: Spinach. And that’s my favorite
DOUBLE COME ON!!!!!!
I think that’s just about covered everything about being ME. From MY point of
view. So, thanks for reading and I might be seeing you soon.