I remember a time in my life that New Year’s Eve meant hitting the town hard, searching for a great place to party…now it means hitting the couch hard in my elastic pants, sweatshirt (and lil cubes of cheese) watching the Twilight Zone marathon. And I love it! Anyway, I just wanted to wish everyone a wonderful, happy, safe and prosperous 2013. I thank everyone who visited my blog this year, I hope you enjoyed reading as much as I have enjoyed writing; it has been a fun journey so far & I appreciate you allowing me to share a lil bit of my life with you. See ya next year!
I love comic books. When I was a kid (a long time ago), a great weekend meant…a quiet room, a bologna sandwich on white Wonder Bread and a comic book. I’m going to admit a couple of things to you. I had a crush on dopey black-haired Jughead, I wanted to be friends with Richie Rich, and I thought Lil Lulu was kinda cool…oh, and I definitely wanted powers like the Invisible Woman. Unfortunately, Jughead never called, Richie played with his cousin Reggie and Lulu only wanted to hang out with Tubby. However, and (oddly enough), I DID become the Invisible Woman! Imagine that…out of all the characters that filled my weekends…I got to be the ONE with superpowers! Wow, not too shabby, huh? I mean the power of invisibility, come on, that’s pretty darn cool, right? After all, with THAT power, I could sneak up on ANYBODY even the President of the United States, although I don’t know how much fun that would be, seriously. But, don’t be jealous though, because I’m only invisible when it comes to my chronic illness.
I appear to be happy and healthy.
So no one sees me.
I don’t show any signs of illness unless you see the small bump that my medi-port makes under my skin.
I look too well.
Sometimes, I wish I could go back to the days when life was simple…and I was visible.
Digestive disorders are often undiagnosed and can’t be seen.
Trust me; we that have invisible illnesses don’t want to be super heroes.
Seriously, we don’t want to sneak up on people.
Or spy on the President
Or even save the world
Sometimes, we just want to be ourselves…
And just be seen
And, you know something?
The more I think about that…that’s pretty-
Just another day
In the hospital
The sound of the IV
Fluids disappearing into the skin
Ticking and clicking
Seconds turn into minutes
Hours into days
Did you pee?
Walk the quiet hallway
Cold coffee in the hand
All hoping for answers
As they wait
In the hospital
Just another day
I wanted to share this poem from my website
For all those who need support as they endure…Just Another Day
I look at you
And our eyes meet
My illness makes me defensive
My mind thinks, “Do you think, I want this?”
I am mad at you
Because I think you don’t understand
You are upset with me
Because you think
“Why is she ALWAYS sick?”
My illness makes us enemies
You can’t express your feelings
And I can’t explain my actions
The hurt that I feel
Or the frustration you feel
We are at odds
With something that effects of us both
That we didn’t ask for it
Yet we live it…
I watched as she spun out of control
Her wide eyes so full of fear
The look of terror on her elderly face
I immediately stopped & parked in first gear
Her car had done a 360 and now lay in a hole
The haunting sound of a car crash echoed
As her car smashed against the metal pole
It felt like slow motion, as I carefully crossed the street
I ran over to her quickly
Broken glass crunching under my feet
I stayed with her
Until the police came
Do you wanna know what saddens me the most?
That so many people saw the same thing I did
I was the only one to help her
No one else got out
Asked if she was okay
I am not a saint
But it was the right thing to do
Because she COULD have easily been my mom
*sidenote: While it may not always be safe or appropriate for you to pull over to assist, we seem to never have enough time, we’re always in a rush…I hope my poem reminds you that sometimes, we need to take the time to stop and help others…because you never know when you will be on the other side.
Gastroparesis (delayed stomach emptying) and Colon Inertia (delayed colon motility) are two invisible illnesses that are rarely talked about; although many people live with these illnesses everyday. I’m one of them and so is my 9 year-old daughter. So, I hope you visit me at www.mycrazycolon.com because without awareness, we will never find a cure for these conditions.
Oh…and sorry about that whole free coffee thing…
This morning, I was perusing through a couple of message boards that I like to drop in on from time to time. I used to be really active on discussion/forum boards, but these days I lurk more that I post. Yup, I’ve officially become a Peeping Tom. Anyway. On one of the health related boards I visited, I was sad to see a little trend popping up concerning people dismissing their illnesses. If you read my blog from yesterday (Go ahead and read it now…I’ll wait) I said…It doesn’t matter…Disease is Disease. It’s troubling to see people start a post that says, “I know I’m not as sick as some of you but…” or “I feel stupid asking this because I know many of you guys are worse off than I am but…” Sometimes, we compare our diseases, symptoms, and treatments to others and it can give us a weird sense of being inadequate about our illness…We don’t want to bother others who obviously wouldn’t care about our “measly little” problems…I know that I’m not well…but I guess I’m not sick enough….to be really sick. I say this to those who feel this way. So what, if my gastric emptying test showed emptying at 20% and yours was 43%…hell, we both have screwed up stomachs! Just because a person only takes two pills a day compared to your four, doesn’t make them any less sick. The other day, I met a woman who asked me point-blank, “What is that thing on your chest?” I told her it was my Medi-port and explained to her why I needed it and how it was used. We talked for a bit and she ended up saying to me, “Wow, I guess I won’t be complaining about my IBS anymore.” I knew what she meant and I did appreciate her comment, but I asked her, “Why? What you’re dealing with shouldn’t be lessened just because of someone else’s situation”. I think a lot people tend to do that…especially regarding illnesses. We perceive that someone’s situation is just awful when in actuality they could be doing just fine. And what’s really surprising is when you find out that they were thinking the same thing about you! Some people might think “Wow, she doesn’t have a stomach. That must be awful”. And I’m thinking “Wow, that person throws up every single day. That must be awful”. Just because GP took my stomach doesn’t mean I look at other GP’ers who still have their stomachs and think any different. I would never want anyone to think that because of my personal situation, that we can’t share experiences, give advice or support. No disease is small if it affects you and your loved ones in some way. No illness is too small when you are in pain…on any level. Period. No one should feel like they can’t share their story or ask a question. Sickness shouldn’t be about competition but about compassion. Regardless of where you are in your journey, whether it be at the beginning, middle or end…EVERYONE deserves to be equal…because EVERYONE counts.