Living with Crohn’s #3

It’s always really difficult for me to write about my disease.

However, I have noticed a lot of people asking a lot of questions around the inter webs and nets.

And like anything, it’s easier to write a grocery list when you’re hungry, or a love poem when you’re in the passions of desire. Or a country song, when you’re, anything else; Your cat died, your truck was repo-d and your lover left you for whoever did your taxes…

It’s generally easier to write about Crohn’s disease when I’m having a flare up.

Which brings us here. To my bathroom… look around, I’m in the tub. Soaking. Listening to Bob Dylan.

I was diagnosed with Crohn’s disease 13 years ago…

This is what a Crohns flare looks like ….
It twists in the gums like a knife
It blisters your lips
It stabs in the gut like hot steel
Your joints ache and pop
You’re exhausted
You can’t eat certain foods that other people can
Your “healthy”
Looks very different.
You present well, because this is invisible.
Most mornings you’re nauseous …
Gut issues affects your brain.
So you fight depression and anxiety… I’ve had Crohn’s disease for 13 years…
It is different because it’s inflammation throughout your body and gut…
And it affects all layers of your gut tissue… You still get up
You still go to work
You do the work
You do the work.
Not everyone can
But I’m glad I can.
This is day three of a flare up
This is what it looks like.
It’s going to be different for everyone.
But if you pay attention and communicate with your people and your healthcare professionals…because they can’t read minds…you can manage this disease. It is a disease. But it doesn’t have to define you or overwhelm you. Let the courage to continue define you. Even in the bad days.

Writer’s Log 21

I’ve been writing a lot of drafts

And putting manuscripts together

I’ve sent off three so far

Or was it two?

I didn’t even realize I have Archives on here

I started going through them…

It goes as far back as 2011

(Don’t go that far back…for your own sake just go to 2014)

I’m trying to read more

I’m convinced social media is going to crash like a bad marriage…

One day we will try to log in and it will just be a blank sign in screen for some business app.

Everything will be gone and the world will cry together.

In other news

I’m still trying to stay healthy

Living with Crohns and IBD can be difficult, but you don’t have to feel isolated or alone. Click here for more info @crohnscolitisfoundation can help with information and motivation. Keeping you moving forward. Remember, one step at a time. One day at a time. One flare at a time.

It takes courage.

Keep writing

Keep reading

Never stop learning.

Writers Log #20

It’s almost been a year since I started Humira,

It’s been absolutely life changing for me,

I’m able to work 50 hours a week

Work out

Drink an occasional beer or wine or old fashioned …

I don’t have to look for a bathroom (just in case) first thing when I enter someplace new

I can drive to a city without stopping and sit through a musical without having to go to the bathroom.

I have my life back. And honestly I thought it was pretty decent before, but I had never realised just how much of my flare ups I had just come to accept as part of life.

So thanks Humira, and my team of doctors. They have walked with me for this whole journey.

And with this in mind I am able to write about working out as well…in a almost 30 quest to save my knees and recover my abs…

Obligatory gym thing. In this never ending battle against my beer obsession and my quest to recover my abs.

It’s actually an awesome feeling overcoming a goal. I don’t like to think of it as reaching a goal, so much as destroying a goal.

Being able to lift more than I did last week, or run for two more minutes than I did last week.

Own it.

Living with Crohn’s

20140405-112014.jpg
I’ve gained
15 lbs
In one month
That puts me at
157??
Now I’ve
been at this for three months
It feels like
This working out thing
Isn’t working out
But I feel great
So that’s something
And I’m hungry
All the tiiiime

But I will tell you this
Everyone tells you
‘eat what you want You’re young’
This is a lie
You are what you eat
I almost died
twice
because of what I was eating
The American diet
Will kill you
I had no energy
I was depressed
And no appetite
But I am finally enjoying
Energy
And
I feel great
If I could tell you one thing
It would be
Surround yourself
With people who believe in you
We need human contact
Isolation will not help you
“These are the days that must happen to you” -Whitman
Use them to make memories
Live your life
You only get one