Tuesday, June 30, 2009

Rock and Roll

I made it out to the Last Friday Show at Wonder Root. Eli was playing so of course I would do anything to be there!

It was a great night. I felt really good. I couldn't wait to tell everyone about how I showered all on my own; Some looked at me like I was crazy but most shared the excitement. Half way through the night I had to pop a pill. That lead to a whole new level of fun! I started showing off my battle scars from the surgery! It's like my new party trick...

One bathroom visit. Because of the last time I visited this bathroom and the chaos that ensued, I made Emily stand look out. That just might work. She does pretty well at her post!

Now all I need when I go to the bathroom is my gloves and my sister. I'm still working on that sign!!

Friday, June 26, 2009

Tots, screams and friends! Good day!

Yesterday was a good day topped off with some good scary movie fun!

Kat and Bethany brought over House of 1000 Corpses, faux BLTs and some hot Tots! If that doesn't sound like an awesome night, I don't know what is! Great movie. I am so excited to see Rob Zombie's Halloween!!! I really hope we can do it after the surgery.

On top of all that greatness, I did not take a single pain pill the whole day. I'll admit, I had to take one to sleep but that counts as night. :)

Add this to the good day column and keep 'em comin'!

Thursday, June 25, 2009

Lets get it together CCFA!

The day I came back from the hospital there was a big envelope in my mail box addressed to ME! It was from CCFA (The Crohn's and Colitis Foundation of America). I thought it was like any other mailer they send out that always ends with them asking for money.

Not this time! The wrote to inform me that I was a semi-finalist in an essay writing contest about UC Success! I was getting a gift card for like $25 in the mail and they will inform the winners at a later date.

Well, the prize is a trip out to OC, California! That's what I wanted. You go to the CCFA Walk and talk about what you've been through and tips to help others get through the disease. Sounds like a perfect job for me. The Walk is this weekend and I still haven't heard anything. I haven't even got my gift card yet! What's the deal?

I get it; I didn't win the trip. But at least post the winners on the web site! They still have last year's winners!!

Maybe next time.


So, if you don't get the wafer right and you cut it too big you have exposed skin. Now think about what happens inside the bag: Pooh comes out of the center of the stoma and either drops into the bag or gets stuck around the reservoir that is the wafer. So, pooh can just sit on that exposed skin. You change the wafer like every 4 days or so.

This morning we changed it and all the skin around the stoma was red and like burning off! Eww is right! Thankfully we found this stuff that is supposed to create a crust- like a scab. Well it is a two step process and we were only doing one step- needless to say, it got pretty bad.

But we are all good to go now!! I love new wafer day! I feel so clean. :)

Wednesday, June 24, 2009


So, we always track my progress with my weight. I don't know if that is as accurate with a bag as with colitis.

I'm 118 now. I promise I'm eating. And not even great food. I am eating more veggies than before but it all comes out so quickly.

Do you think I'll always be this skinny? I don't know if that is a good thing or a bad thing. I really like the way my jeans fit, even if I have to fold them down to avoid the stoma. But people are starting to think that Eli and I aren't eating. He has been going through sympathy weight fluctuation for the last year or so. That is true love! :)

Well, at least I am up one pound from last week. Maybe this is our steady increase?

Oh, to be a puppy!

I just got a post card from Ophelia's doctor informing us that it is time for her up dates. Now, as a human, my medical bills have increased as I get older. But the puppy's have come down significantly in cost per year.

When we first got the big Oph (you thought that was a cute nick name, you didn't realize where it was going...), she was eating bees and getting stung in the face; scraping her head under the deck; falling off cliffs on her hikes with daddy! It seemed like every week we had to take her in for something. Either she got smarter or we stopped caring.

One time we had to take her for a flea infestation-$90 for three pills!!! You better believe we give her Frontline every month now.

...Maybe we got smarter! :)

Now if we can just get her to come back to us when she escapes.

Monday, June 22, 2009

I met Joey Cape!

The hardest thing I've had to deal with is the fact that the people who love me and want to help will never truly know what it feels like to have Colitis (or not have a colon at all...)

One thing that has gotten me through some really hard times is a song by my favorite band, Lagwagon. The song basically says you can't depend on other peoples' content or happiness to be happy for yourself. "Find inner strength" because no one else can find it for you.

Last night was the highlight of my year. The singer from Lagwagon, Joey Cape, was performing at the Earl here in Atlanta. We weren't sure if I'd be able to make it to the show; and then there is always the concern about seating. I would not last one set without a seat. All day I was feeling crappy but I just kept telling my self, "You can do this. You will go to the show no matter what!"

After a nice dinner at the Moerlins' house with friends, Eli and I headed to the Earl. Low and behold- there was plenty of seating for my crippled self! We sat just to the side of the stage and an hour later... Joey came out!

His set was awesome. He played some solo stuff, some Bad Astronaut stuff and some Lagwagon. Our friend who knows Joey from years ago told him we wanted to meet him. We waited around while Joey ate his dinner after the show. Finally, he came out and started packing up his stuff. We walked over and shook hands.

Eli, milking the situation for all he can, tells me, "Show him your tattoo!" The one dedicated to the song Joey wrote that got me out of bed all those times I just couldn't fight anymore. So, I played the disability card! I told him that I have a disability and Bombs Away is a song that really got me through the hard times. You can't pass up a skinny girl talking about how your song got her through her disability! He gave me a BIG hug and said, "that's great!" I got a picture and he signed my poster and I got another hug.

I grew up in Los Angeles and I don't get star-struck but after I met Joey Cape, I was smiling ear to ear. When I was talking to him I stumbled over my words. I couldn't believe I was talking to what I consider to be one of the most talented writers of modern music.

I guess it's not always bad to have a disability! :)

Monday, June 15, 2009

Really? Is this my life?

So, I would love to be that girl that takes everything in stride and can totally deal with the problems of real life. But I'm sorry, is this really happening to me? Maybe I should just stay at home for the rest of the summer until this bag is gone...

Last night, Eli, Em, Stephen and I decided to go see Drag Me To Hell (hilarious!). This was going to be my first movie in almost a year and my first multi-hour outing with my buddy, the bag. Eli and I ate before hand because we knew we couldn't afford the $15 hot dog at the concession stand. Of course we made room to share a pretzel and drinks.

This Icee was the size of my head! No joke; a medium! I had to hold it with both my scrawny arms just to drink it! But I'm getting ahead of myself...

Before the movie, Em and I cruised the mall. Window shopping because every place in the south closes super early on Sundays. While sitting on a bench outside the Old Navy, my buddy starts getting kinda full with gas. No biggie except it makes it really uncomfortable with jeans on, no matter how low rise they are. So, we are outside; no one is around. I'm going to burp my bag. Just to get a little gas out. I lift my shirt, pull the tab FOR BURPING and release some air. No one notices, everything is Kosher!

Now we go to the movies, get the drinks, eat the pretzel and head to our seats. After all the commercials and previews the movie starts. It is hilariously redic. But enjoyable. I drink and drink and drink. I notice my bag is quite full again. Must be air right? I go to burp it and I feel my warm waste flowing over my muffin top and on to my back and down the top of my jeans. Holy crap! I just pooped my pants in a movie theater! REALLY? REALLY, COULD THIS BE HAPPENING! Of course I tell Eli and he offers to take me to the bathroom. When he sees the utter look of defeat in my eyes he reminds me to just hold it together until we can get to the car. I decide to take Em to the bathroom so she can work the crowd in the bathroom should there be a need.

We get up and haul buns as fast as my emaciated legs can go! First we can't find the bathroom- that place is like a damn maze. Then we realize it is all the way by the concession stand-where EVERYONE IS STANDING! We finally get in there and there are like 2 women in there- no biggie. Then, all the toilets have urine on them or poop in them- really people, if you can't flush a toilet you don't belong in public! Ed Begley, Jr won't kill you for not obeying the three-pee-flush rule in a public restroom!

When I finally find a suitable stall, I begin to strip and find that my powder pink under wear are bright, Icee red! The solid waste must have followed the laws of gravity and sunk to the bottom of my bag while the red dye number 9 Icee floated to the top! I don't smell like poop. It doesn't look like poop. I'm saved!

I empty the bag and contemplate what to do with my wet under-roos. I am not putting them in my bag... I dry off, stick some extra TP where I "Spilled" and I am going back to this movie! I did not spend all that time convincing Eli that it would be a fun outing to see half a movie and jet because of a liquid burp!

I finished the movie. I even walked all the way to the car- It took while but I did it! I even did stairs!

So, the moral of the story is don't burp unless you know its air! And, I guess things aren't always as bad as they seem. You live; you learn.

Tuesday, June 9, 2009

Privacy VS Stalls part II

While in Georgetown I went out to my first restaurant since the surgery. Of course it was Mexican! I love Mexican food. With all those chips and salsa I knew I would have to empty before we left. And I did. I escaped to the bathroom and to my dismay, it was a single bathroom- no stalls.

Now before, all I wanted was a single bathroom with some privacy. I could do my thing, and walk out like nothing happened. Now, things have changed. It takes a while to empty a bag and clean up and all that... I have a little supply bag with gloves and air freshener and everything I might need. It is no easy feat.

Right when I sit down, I hear someone try the door! Great! So now I'm rushing. At least we didn't have a recap of the gas station! They try the door again. I'm trying to hurry! Cuff, drop, clean, clean, clean. They don't even knock- they go straight for the "Hello?"

What do you say to that? Obviously someone is in here and not having a great time. Even if they were having a great time in the bathroom, would you really want to interrupt that? Sheesh!

Then it is the walk of shame... leaving the bathroom knowing that someone has been waiting outside the whole time and will identify you. Not like I'd know them or would ever see them again... but still.

I feel like I should keep a sign in my supplies bag that says something like, "Will be done at..." and have a little clock on it with movable hands I could customize. Or have it say, "I know I'm taking a long time, I have a medical condition- Please just wait or use another bathroom." Maybe just an "Out of order" sign...

I am not going to just use stalls... I've gone through too much to limit my restaurants!!

Three months and it wont matter... three months.

Saturday, June 6, 2009

First time out: DISASTER!

Eli's youngest brother graduated high school this week. I remember how important it was for my family to be there during mine and I was not going to keep Eli from being there for Dylan. We made the 6 hour trip to Georgetown. It was not easy... or fun. In fact- it was a disaster.

We stopped at a gas station when my bag was full and the tank was empty. Eli drove right up to the door so I wouldn't have to walk too far... and let me tell you, that little step up, not so little when you have no leg muscles. I pull the handle to the bathroom... locked... I see an attendant and ask if we need a key, all the while holding my bag and my little supplies clutch. She pushes the door open without a word.

OK, so I start to settle in.... Thank God there is a toilet seat cover (I hate when I have to line). I sit, take the clip off and dump! OMG! I DIDN'T CUFF THE BAG!!!! If you don't cuff the bag before you dump, all the waste is at the end of the bag... and it's just not clean! I can't believe I forgot to cuff!

Well, I have an extra bag with me, or I could try and clean it... ABORT! Just abort the bag and get a new one... Well, I should try to keep it... they are expensive. So, I decide to try and save it. I have my gloves on and start working away... And of course I get waste all over the bag. There is no saving this!

I pull the bag off and I am still actively going... The wafer kind of gives a little reservoir before it runs all over you stomach. So I'm wiping and it slows. What do I do with this dirty bag? I just drop it on the floor... I just can't deal. I grab a new one and seal it up. I just sit there looking at the bag on the floor... how much do those cost? Should I throw it out, really? I just have to get over it.

Someone tries the door outside... OK, get going. I clean up and throw the bag away. I wash the gloves; I wash my hands. And I see it... AIR FRESHENER! I pop the top, which is not easy when you can't use your abs... And there is no spray thing on it... Whatever, I'm over the smell. I just try to make it pleasant for the next person.

I am so wiped out by the time I get out of that bathroom Eli has to help me to the car. What a day! And now we have 4 more hours to go in the car...

Tuesday, June 2, 2009

Take the good with the bad

Today, I'd say recovery is going really well. Yesterday, I would not have answered. It was a rough day. I woke up shivering; temp 103.8. I knew it had to just be the prednisone or something- I was not going back to the hospital because of a temp in the morning.

I just drank water and juice all day long. Soup for lunch. Nutrition drink for breakfast. Drink. Drink. Drink. By dinner time, I was fine. I ate my first salad. Oh, it was soooooo good. It was like a buffalo blue salad with crispy onions. Just like heaven. I still have half of it saved for today... I can't wait for lunch.

This morning, no chills, no sweats. I didn't even go to the bathroom in the middle of the night... I can't remember the last time I slept through the night. I did some exercises in bed... working my way up! Still no weight gain but I got plenty of friends who are working on that!

Today is a good day.