I feel like I constantly am asking myself throughout the day…what if I don’t make it?
What if I don’t make it to the bathroom?
What if I don’t make it to work on time?
What if I don’t make it here or there?
Colitis has constantly made me assess the “what if’s” of my day and my future. Before the confirmation of this surgery I felt like UC didn’t really have a strong effect on my life, but then I started really thinking about it.
I started thinking about what has become “normal” in my day that just plain and simple shouldn’t be normal to anyone.
This is what I look like. Beer and all.
I haven’t slept in my own bed in easily 4 months because its on the second level of my house. Too many times I had close calls…or just plain didn’t make it in time when trying to get down the stairs. So now I sleep on my couch every night of every week. I wake up easily an hour before I actually have to in order to make it to work on time because I have insane morning bowel issues…and sometimes I’m still late.
This is me. Having a baby. In a car. Not really.
I’ll find myself driving home from work, breathing like I’m going into labor to try to subside my abdominal pains and keep myself from having an accident.
Flushing a toilet filled with excessive amounts of toilet paper all covered in blood (pardon my graphic nature) and thinking nothing of it.
O
r the simple fact that I never ever actually button my pants because the pressure hurts too much so I’m constantly pulling them up all day.These things….are not…normal.
But I have just learned to accept them. This is my life. This is my reality. This is how I live and I make exceptions and modifications in my life to accommodate for this stupid disease.
Lately, though…things have not been so easy to accommodate. I’m in far more pain than I ever was…the possibility of accidents has sky rocketed. The last week since seeing Dr. Remzi at Cleveland Clinic it seems as though my “normal” has been highlighted more so than usual. It seems like the universe is trying to tell me something…have the surgery…get over the colostomy bag…get back to normal. Real normal.
So back to the “what if’s”.
When I googled "pouch failure" this came up. I also like Capri Sun.
What if the recovery is WAY harder than I expect?
What if my pouch fails and I’m stuck with a permanent bag?
What if I regret my decision?
Why is it never…”what if this is the best decision I’ll ever make?”
I’m hoping that this will be the best thing I do for myself, because I can’t picture a lifetime of my “normal”. Its just getting to be too much to take.
Hey Jackie – I found your latest blogging post! It’s such a drag that you have so much pain. I think we have to believe the surgery will make things better. It’s a long process (too long), but there’s got to be a way to get you some relief. Thinking of you…
Um, you’re flipping amazing. I know I’ve said before, but I’ll say it again. Thank you for being so frank, I think this is what other dealing with UC need, somebody that they can completely relate to.
I love you Jackie! Sorry, I know online expressions of love can be lame, but this is what it is.
D
How is it that you manage to make things funny and see the humor in some of what you’re going to? It amazes me. You will be okay. PS: You made me laugh. A LOT. I’m not sure if I was supposed to, but you did.
You’re a very special person (I mean special in a good way, too)