Monday, July 21, 2014

"What's It Like?" .........Living With Crohn's

This, believe it or not, is a question I get now and then.  I feel like saying....

"I don't know....what's it like NOT living with Crohn's Disease?" 

....and then look at their face with that puzzled look, like I've just asked them what the meaning of life is.  But it's the same thing.  I can't answer that question.  I don't think there IS an answer.

So, I was trying to think of a way to describe it and this is the best I can do...

Living with Crohn's Disease is like waiting for an earthquake.
You have no idea where you'll be or when a flare will happen, but the best you can do is to be as prepared as possible.


Sunday, July 13, 2014

You Might Be A Crohnie...

If according to the 2014 Guinness Book of World Records, under "Toilet Sitting", you see your picture...
you might be a Crohnie


Thursday, July 10, 2014

The Love of a Son

My two boys know that I have Crohn's.  To be exact, they know that I have an "illness" that makes me NOT be able to eat what they eat or do things that they do and they know that there are times that daddy just needs to rest for awhile.  They also know that sometimes I have to go to hospital, but they don't understand "why"........which, when I think about it, neither do I.
Having said all that, one son actually "hurt" me by giving me a hug.  Yes a hug.  They are normally very careful around me, but he just squeezed too hard.  I doubled over in pain as it was quick and the sudden pain made me bend right over.
What hurt the most?  The look on my 7 year olds face.  I think he thought he killed me and looked scared. 
I felt awful.
Things like this can happen, and its not his fault, he just wanted to give  me a hug.

The point is, something as simple as a hug can put a Crohnie down for the count.

What a sucky disease!!


Thursday, July 3, 2014

Remicade: Day 709

Closing in fast on my 2 year "anniversary" for my infusions and after this last one, I once again am humbled by others that suffer with this disease.  There are so many of "us" now.
Talking with others at the infusion site, we all learn we suffer from the same thing, but each of us have "side effects" that differ, whether that be with meds, food, emotions, etc.
And after the discussions, I sit there staring at my IV tube flowing with my "go-go mouse juice", watching it go through the needle that luckily only took one poke to get in and wonder...... with all these different symptoms, how can researchers possibly ever find "the cure".  I mean, one that helps us all.
I can only say, I hope its soon