mar27

March 27th 2015 

Sometimes I am very thankful 

for the time I get

that have few symptoms of my disease.
BUT

there are other times I take for granted

that I was healthy enough

to do or eat

whatever I wanted for 7 full days in a row.

I had a wonderful trip this week

and had immense amounts of fun

with very little of my usual bowel-interuptous issues.

Neglecting to be thankful for that short respit,

my immune system thought

"hey you are ignoring us!"

Thus taking the time to pay me back in full

for my lovely vacation!

I am not complaining!!!!!!!!!!!!!!!!

OMG no.

I am thrilled to have been able to enjoy the trip

the food, fun and friends.

and even if my immune system

doesn't realize I was thankful.

I was.

I am unsure of what some people think an attack is like.

Sometimes they are very painful

and fully life debilitating.

Other times 

it is just stomach cramps.

Sometimes, like today,

my whole body shuts down.

The only way to deal with that

is sleep.

I have learnt to base my days 

on how I feel when I wake up.

Plans are never carved in stone,

and food is not always my friend.

'Your body must have needed sleep'

is more accurate than some people think!
My immune system

without Remikade

thinks everything in its sight is an enemy,

and does all in its power to kill it.

Good cells, bad cells,

white and red blood cells,

infection or healthy...

they are all in my immune system's sights.

 Sleep is my hidden warrior,

I sleep to retaliate!

I am in low cycle this weekend

and I will blow my immune system away

on Monday with an infusion of remikade.

I plan to find a super hero cape for my IV bag.

I did not choose this battle.

This disease chose me to battle against.

Some days it wins,

some days I do,

and some days are a tie.

 More often than not - I win 

not because I am stronger or smarter

because

to lose I have to give up.

I am so happy I have have friends 

who know even though they cannot see 

the pain every time

they believe me.

They send hopeful emails,

hugs and sometimes even

a small gesture can make the difference in my day.

Today a big bunch of flowers

turned an otherwise

rotten day 

(which I slept through)

into a lovely evening with my family.

Tonight I spent relaxing 

watching a movie with my little family.

Sometimes 

that is enough happiness 

to make up for a crumby day.

The fact that my daughter

made caramel popcorn to eat

while we watched the movie?

priceless.

Tomorrow is another day.

Good night from John Street.