April 12

04-12-18

Captains log April 12 2018.

The journey down life's road
Is rarely flat, pleasant and sunny!
Neither is everyday
Tornadoes, broken gravel roads
And rain storms.

Having any life change
Can add bumps and struggles
But sometimes
No matter how prepared you are,
You hit the soft shoulder!

Disease sucks!
Asthma, arthritis, cancer...
Serious, mild, painful or not
IT SUCKS.

And unless you have experienced
The joys of having NO medical care,
We all should appreciate
that our care here is free to us.

That all sounds good in our heads.
Untill you are being told...
Sure, it looks bad,
But let's just wait this out.

Or how about,
What do you say about us "trying"
Some medication instead of looking
Into this a little more.

My favourite is:
We'll need more bloodwork,
We forgot a few things.

But today,
Although all that happened and more,
I think I was most hurt,
By the overwhelming feeling
Of being dismissed
For being scared and worried
or rushed out of the doctors office
Like I was just wasting his time.

I do not cry wolf with this disease
And I do not wait until I am so ill
there are only limited ways
To overcome the issues.

I do not consider a hole in my stomach,
To be a "let's wait and see"
Kind of issue!!!!!

I was mad (still am)
I have done all I could (once again)
I told them everything (why lie)
I went to the appointments (when they wanted)

So being told
"We'll wait and see"
"This might work"
"Hmmm antibiotics might work"
Does not leave me happy with
What I had hope would be
A dialogue about the next steps.

And my astonishment was visible
when I heard:
"You just had blood work?"
From a man that gets my bloodwork
Every 4 weeks at remicade
(Which btw was April 3rd)
He sent me in to do again
(Which btw was April 10th)
And all those results
Were in the file in his hands,
But they wanted more
Cause they "forgot" one.......

I just sat staring, wondering once again,

If this was THEIR
Wife, sister, daughter, mother....
Would they ask them to wait?
Would they poo poo their concern
That there was a hole in their stomach?
Would those women leave in tears?

Cause I did.

My fault.
I KNOW better.
I am aware that the worst has to happen
Before the people start to move.

"Just take a laxative"
Was the advice I received the month
FROM a DOCTOR
Before I went septic in 2011.

I think I just made myself believe
That this time it would be different,
That this time I was going to walk in,
They would see the hole,
Have a plan in place and deal with it.

After 31 years of this disease....
How stupid am I still?

So,
I will take the antibiotics,
I will continue to bandage up my stomach
The best I can as no advice was offered
About how to deal with that!!!!
I will start tomorrow keeping a journal
Of everything once again.
I will be strong.
I will fight.
I will make this my normal.

But tonight I just wanna curl up
And cry for a bit.

Good night from John Street