First and foremost,
When you have a rare disease...
It can be difficult to explain to others
What it is that you have.
And in the case of PH
Why you aren't going to be cured
Unless you have a transplant.
Also, it is not easy to explain
When you don't look "obviously ill"
Most of the time.
You must become an expert of your condition
When you finally get the diagnosis -
because it's really only the specialists
Who have the answers.
Other medical staff try their hardest,
But do not have enough information.
Therefore it is you who will inform them.
When you have a rare disease...
It can be difficult to explain to others
What it is that you have.
And in the case of PH
Why you aren't going to be cured
Unless you have a transplant.
Also, it is not easy to explain
When you don't look "obviously ill"
Most of the time.
When you have a rare disease...
You need to be prepared for mishaps
Especially when it involves IV med.s.
What if something happens,
You go to a hospital
But they don't have the medication there?
Also, you need to think about spaces available
Where you will be able to prepare the IV
Should things go ill.
Diagnosis is like your world turning upside down.
Everything you knew changes.
You have to adapt to the new you,
Even if you don't like it!
You begin to appreciate
The little things in life.
Hoping
That one day
Things will be similar to before.
You need to be prepared for mishaps
Especially when it involves IV med.s.
What if something happens,
You go to a hospital
But they don't have the medication there?
Also, you need to think about spaces available
Where you will be able to prepare the IV
Should things go ill.
Diagnosis is like your world turning upside down.
Everything you knew changes.
You have to adapt to the new you,
Even if you don't like it!
You begin to appreciate
The little things in life.
Hoping
That one day
Things will be similar to before.