Saturday, April 25, 2009

Eli's Birthday wish

Eli asked for a few things this year but the most important slipped through my fingers last night.

Eli had a show at WonderRoot for his birthday and invited some of his favorite bands. Yard Work, the headlining band, could get anyone to dance. But not me; not last night. All Eli wanted was for me to dance with him to a Yard Work song...

I went to the restroom while the band just before YW was loading up... I didn't know them and wouldn't mind sitting in the bathroom for their set. I was of course interrupted... the person on the other side of the locked door actually said, "Ooops... I'll wait!" You'll wait? Listen, I was prepared to play the waiting game because I knew I would win... I could wait all day. But, I gave in and finished up, washed up and left. I still had to go. So I drove all the way home (Like a 10 min drive...) and used my own bathroom in private. No one around, no one waiting... Then my cell starts going off... Everyone is worried about me and wants to know how I'm doing...

As I pulled back up to the venue I heard music coming from the basement... It was Yard Work and Eli was at the front of the crowd. I cought four songs from the chair in the back while Eli danced with all our able bodied friends.

Maybe next year Eli? :(

Thursday, April 23, 2009

NEW*Big news

So, I thought I was just having a "different" flare up. The last few weeks have been pretty hard. I just get tired and feel weak... Not to mention the bathroom visits. I found out this weekend it's not only a flare... I'm having a BABY! :)

I took a home pregnancy test and saw a nurse on Tuesday. Positive! Now we are just worried about telling people in case something happens.

I have always tried to research Ulcerative Colitis as best as I can; new info or drugs, treatments, diets, everything. The only stuff I can find on UC and pregnancy is 1 it could stay in remission as long as you are in remission, 2 don't get pregnant if you are in a flare... Well... what do you do when you get pregnant and you are in a flare? I guess we'll find out in the up coming months.

Wednesday, April 22, 2009

Sick... again

8-10 bathroom visits a day. Waking up in the middle of the night. No wonder I sleep all day.

Thursday, April 16, 2009

Shame on me...

Now that I'm unemployed I try to keep myself busy by cleaning, job searching, gardening... but sometimes I just can't get off the couch. So I turn to my iPod for games or I do Sudoku. I have one of those books that lets you choose anything from "Light and Easy" to "Beware! Very Challenging!"

I usually work my way up to "Difficult" after a few hours of "Light and Easy" and "Moderate". Last night, I hit an all time low... I cheated on Sudoku! I was on a L&E and I got stuck. I just couldn't do anything... I caved and looked at the key in the back. I'm not talking about getting one or two numbers... I took 2 rows! I started out with a couple numbers but nothing would get me going again. I had to take the rows to complete the puzzle. So sad. I can't even do an easy puzzle.

I use the puzzles to feel a sense of accomplishment since I have nothing going on... all I feel is degradation and shame!!

Oh well, I have 399 more puzzles to go!

Wednesday, April 15, 2009

Oops! Sorry...

So, there is always the wonderment of what really goes on during my bathroom visits... People kind of want to know but they really don't want to know. A lot of people think I exaggerate what I feel or what it looks like... I have started to think maybe it's not that bad. Maybe I'm just lazy and I feel tired because I am depressed not because I have something wrong with my colon...

Unfortunately, I got some unexpected verification... My husband has always been there when I get sick. He is willing to cheer me on during colonoscopy prep; he rubs my back when I curl up in a ball in pain; he just takes care of me, no questions asked. A couple weeks ago we were talking to some friends about how gross it gets when I'm sick and the question of what it looks like came up. I told them that only one person has really seen it. Before I was diagnosed, I asked my best friend to look and see if it is something I should be worried about... it was.

My husband had yet to see it... until last night. So, we have our own bathrooms- a must when we bought the house! I didn't flush after my last one because I was getting in the shower and I didn't want to turn the water cold... Well, I forgot to flush after my shower and Eli went in later that night... He was floored. So apparently, it is pretty gross. I won't give you the details but now he doesn't wonder what it looks like! :)

I don't even remember if it was a good sample or not...

Monday, April 13, 2009

Privacy please!

With all this going on in my colon, my priorities have changed. I used to be able to go out, drink, eat whatever I want, see a movie... and just use the bathroom when I got home. No longer! Now, I'm lucky if I can wait until I get home after eating a quick meal. So of course, I survey the venue and always ask friends what kind of bathrooms they have. I almost always get the response. "Oh, they are clean... they're nice..." That's not what I need. All I want to know is if they are private or stalls.

I know if they are stalls, I will only be able to urinate or I'll have to courtesy flush the whole time I'm in there. I recently drove almost all the way across the country and of course had to visit a number of restrooms. And boy was I excited when I came across the single bathroom with a locking door and no other stalls. One problem... the next person awaits you on the other side of the door! I've at least gotten over that. I know I have an issue and I will probably never see that person again. If it is a friend... they know I have the problem and they are pretty well prepared for it.

I wish I could just go back to when it didn't matter.

Friday, April 10, 2009

Another one bites the dust...

Tomorrow is my birthday. I don't feel older or freaked out... I just feel the same. Tomorrow is the same as today, and will be a lot like Sunday.

I'm ready for the next step in my life but apparently the world isn't. I want to be a mom. At my last doctor visit, my gastro told me I have to wait- I am in the middle of a very mild flare and he doesn't want to complicate the flare or a pregnancy. I get it... but it's not fair.

I am now taking my sixth medication for UC because the last 6 haven't worked. I have one more try after this; one more chance to have a medication that can maintain my remission for more than one year.