Sunday, October 25, 2009

The mind is a terrible thing to waste

I have a few memories that are crystal clear to me. They have been engraved in my mind since the moment they happened. This is one of them:

I am standing in front of my Elementary School alone. I'm ten and I am waiting for my mother to pick me up. It's the first big snow day of the year. It's already been snowing for several hours and there is nearly a foot of snow on the ground. Large, heavy flakes continue to slowly fall from the sky. The new whiteness of the world and the silence not only feel peaceful and tranquil but also eerie and strange.

This was an exciting day for me. The reason I was outside waiting for my mom while all the other kids were still in class was because my grandparents were coming to visit. I was so excited to see them.

The entire day I was filled with such excitement and happiness about their arrival (and about the fact that I got to miss part of school). But there was something else there too. Although I was in a very good mood, a fantastic mood really, I had this strange feeling that I could cry at any moment--that without difficulty I could form tears and cry. It was a bizarre feeling, especially since I wasn't sad (and I'm not one to cry when I am happy). Noting the feeling, I made a plan that the next day when I was supposed to go to school (while my grandparents stayed at my house) I could use this new found ability to fake being sick, allowing me to stay home and have fun with my grandparents. Just to test it I tried crying and saw that I could and that I could easily cry quite a bit. I stopped crying, hoping to save the big tears for the next day, and continued waiting.

After a while, I wondered what was taking my mother so long. She was quite late and I was anxious to get home. Finally I saw our old yellow truck pull up in front of the school. I ran and got in. Seeing my mother's red eyes and splotchy face I instantly knew something was wrong. In my childhood innocence I asked, "Are Grandma and Grandpa here yet?"

My mother burst into tears. I stared at the window-wipers whisking away the snowflakes as she told me my grandfather had died. And then I cried.

What does this have to do with UC? This was the first time I thought the human mind might be capable of more than we realize. I had the sensation to cry before knowing why. I feel like in some way I knew something bad had happened. William James wrote, "We are making use of only a small part of our possible mental and physical resources," (from The Energies of Men, p. 12). If our minds are capable of knowing more than our physical realities, perhaps on a subconscious level, could we then use our conscious minds to somehow access some of that knowledge? What abilities do our minds have that are yet untapped? Can we (as so many people believe) really heal ourselves? Did my subconscious mind know my grandfather had died or was it a coincidence?

More thoughts on this in my next post.

Friday, October 16, 2009

Why I Hate You

Dear Ulcerative Colitis,

I really think that you are quite impertinent. You came into my life without invitation and have really behaved quite rudely. You have wrecked havoc on my life and particularly on my colon. I don't think we can ever be friends.

At one point in time I thought I could tolerate you--that I could adapt to living with you. But then I remembered why I hate you so much.

It's one thing to bother me--make me uncomfortable, embarass me, disrupt my schedule and routine--but it's quite another thing when you encroach upon the happiness and well-being of my son. You see, I love him more than anything else in the whole world.

And I hate you for the days I could hear him crying in his crib for me, but I couldn't come because I was with YOU on the toilet.

I hate you for taking away TIME and ENERGY that should have been devoted to my son.

I hate you for the all the playdates, outings, and vacations that were missed because YOU needed so much ATTENTION.

UC, honey, it's not's you. I hate you and I don't want you in my life. Don't you EVER hurt my son again. I want you out of my life for good.


Skinny Girl

Tuesday, October 13, 2009

No man needs a vacation so much as the man who just had one

I'm back from my vacation to Denver, Colorado. I survived! I actually had quite a good time. In the days leading up to it, I was feeling quite anxious because of a different vacation a couple months ago. On that trip I was just miserable because of the UC. I had been feeling a bit worse and I think it was because of me worrying about having UC and traveling in addition to the normal stresses of getting ready to leave. On the trip I visited many lovely bathrooms, some of the nicest public restrooms I have seen. Which is good, because I am able to use the bathroom more easily when it is nice than when it is not if you know what I mean.

My biggest stress of the vacation was where I was staying. Instead of getting a hotel I stayed at the home of my uncle and his family. They showed me the bathroom I could use. The bathroom opened into their kitchen...where the family pretty much stayed all day...and there was no fan in the bathroom...and a very thin door...and I could hear them when I was in the bathroom so...

They all know about my illness (thanks mom) but knowing someone has a sickness and hearing them be sick are two very favorite things. I hate that the bathroom was right by the kitchen where people would be preparing food and eating, who designed that? But it was fine because I was hardly sick at all the whole time I was there. Maybe it was because it was a 10 hour car drive to get there and so I had a (kind of) relaxing day instead of my normal hectic days. Or maybe it was something else. But I had a really good vacation and I felt like a normal person for a while.

While there, I visited the Denver Museum of Nature and Science. They had this exhibit where you put monitors on your forehead that read your brain waves. It was a game between two people. There was a ball in the middle of the two people and a goal on each end. The point of the game was to become as relaxed as possible. When you relaxed, it would move the ball towards your goal on the other end. But as soon as you started thinking about something and your brain waves (or something, sorry I don't remember all the details) would go up and the ball would move in the opposite direction. My mom and I had been watching a couple playing the game and watching their brain waves for about 15 minutes before the girl beat the boy. We decided to give it a shot. My mom has studied meditation and relaxation techniques for years and was pretty confident she would win. Also, my family pretty much all think the reason I have UC is because I can't relax and stress a lot. I thought she would win because there was a crowd of people there watching and I am naturally pretty introverted and also because I'm not known to be a laid-back person. After just a minute of playing the game though I had won. I had just repeated in my mind the words "calm" and "peace" and hadn't tried to focus on the ball moving much. After I beat my mom, my cousin thought he could beat me, but I won again. And then I beat my dad. They showed the brain waves on a screen and every time mine were just low and steady while the others' would go up and down a lot.

My mom turned to me and said, "If you are able to relax so easily, why in the world do you have Ulcerative Colitis?" Why indeed. Mom said I should buy one of these and then when I see I am stressing I can just calm myself down and wouldn't have to be running to the bathroom all the time. How much do you think a brain scanner thingy costs?

P.S. When I got home, there were three messages on my answering machine from my doctor's nurse to call them. Remember I hadn't called last Monday--maybe they thought I died. I called the nurse back and the doctor has given me new orders to increase my dosage back up and to be sure to call EVERY week.

Monday, October 5, 2009

Monday, Monday, Can't Trust That Day

Today is Monday, which means it is the day I call my doctor's office. Every Monday I call and talk with nurse Kathy. She asks how I am feeling and then relays this information to my doctor who then tells her to call me back to either increase, decrease or keep my dosage the same. I think this is fantastic because I don't have to adjust my schedule, get a babysitter to come in AND I don't have to pay for a visit. Which is unlike my GP who would have me come in every week just for an update on how the medicine was working. So I've been very appreciative of him doing this.

The problem has been the conversations I have with nurse Kathy. It goes something like this:

Me: I've still been sick in the mornings, but after that I have been feeling fine the rest of the day.
Nurse Kathy: Define sick.

Really? Do I have to define sick? I mean, I call you every week. Do I really have to describe the diarrhea, spurting, bleeding, every week? Don't you remember from last week when I defined "sick" for you?

I know, I know, she needs to know specifically what symptoms I'm having so she can tell the doctor. Sick, after all, is relative.

It's just I am a bit uncomfortable talking about "bathroom" things. Going to the doctors for me is horrible when first you have to tell the person all the details when you call for the appointment and then at the appointment you have to tell the lady at the registration counter, and then the nurse that takes your weight and blood pressure, and finally the doctor himself. Why can't the first person just write it down and pass it on to the others? Why do they all need a graphic description? I think they like to see us squirm.

Writing about these things on my blog is one thing, but actually having to say the words out loud--to another person--is another thing. I think it has to do with my upbringing. My parents always taught me that it wasn't proper to talk about bathroom issues. In fact, I clearly remember the day one of my visiting friends stood up and said she needed to "go pee". My mother almost fainted. Women, or anyone for that matter, didn't pee or poo. We used the restroom or needed to powder our noses or merely visited the bathroom. But we NEVER talked about what happened behind closed doors, because there is a reason those doors are closed.

So last week when she asked me to define sick I sighed and reminded myself she hears this crap (sorry, couldn't resist the pun) all the time and I shouldn't be embarrassed. But today, I just didn't feel like calling. So, I didn't. I just felt today that if I didn't acknowledge I had Ulcerative Colitis, that maybe...I wouldn't.