Friday, July 24, 2009


That is the sound of fresh vegetables in my mouth. Today I ate snowpeas. They were nestled comfortably in my chicken stir fry, made lovingly by the hands that raised my partner. They crunched sweetly in my mouth.

Monday, July 20, 2009

My daughter's health

I didn't update on her health yesterday because I thought she deserved a post devoted only to her.

My fabulous daughter had two surgeries, one after the other. The first day she had a monitor inserted in her skull to measure the pressure of her CSF. She fasted all day before the surgery and then was not able to eat after as there was another surgery booked for the next morning. She was miserable but she did her best not to take it out on everyone.

The next morning they came to take her to surgery again. This time was a little harder. She was already so tired and she was so sick but she hugged me, wiped away her tears and was the most cooperative teenager you have ever met. She is really amazing.

When we saw her after surgery she was smiling. She said she felt better. The doctor told her that he changed the valve in shunt and she cried with joy. Even after surgery the doctors did not think that they had done anything that would help. They asked what we would do next.

To make things even more challenging, we were in the ICU the whole time. This meant no visitors but me and my partner. It also meant that she didn't have access to a bathroom. She had to put up with the toilet being delivered to her bedside. This did not make her happy.

She endured and was released from the hospital the following day.

Two days later, as we sat eating lunch, she smiled at me and said, "I don't have a headache". It had been 15 months since she could honestly say that. I haven't been able to slow her down since. She is constantly on the go, always talking and growing like a weed. She wants to go out all the time, she sits up at the table to eat and she doesn't spend all day in bed.

I couldn't be happier about how she is now. I wish this could have happened sooner. I wish they had listened to us and hadn't sent us on those many wild goose chases. I wish she didn't miss so much during the 15 months that everyone told us there was nothing wrong.

We fought hard and we finally got the results that we needed. She gets pain relief. I get a full fledged hormonal teenager...

Sunday, July 19, 2009

I'm Home

I've been travelling for work for the past 5 weeks. I haven't had enough time or energy to keep up with anything.

The update:

While I was sick I had two very important job interviews. My partner was being relocated and I needed to find a job. I was successful and was offered the best job I have ever had.

In June I started to travel every week to work and then back home each weekend. I not only had to adjust to working again (after being off for 3.5 months) I also had to endure the long weekly drives and staying away from home and my family.

During this time I came to the decision that I am not Super Woman (despite what I may have told you before) and with the help of my golden lasso of truth, I admitted that I needed to give up something. I have taken a leave of absence from school. I have a year to determine if I can manage this new job and school at the same time. I doubt that I can but I couldn't clean out withdraw just yet. I worked hard to get into that masters program and it is hard to give it up.

Now I am home. We all move to the big city by the end of the month. We are all looking forward to the adventure and at the same time we are in denial about the people and places we are leaving behind. We are not saying goodbye to anyone.

The UC Update:
I have been off Pred for 6 weeks.
I am in remission (at least I was...)
I am taking mezavant and using suppositories and enemas every day.
I am loosing hair by the handfuls.
My joints hurt so much that I have trouble sleeping, walking and sitting.
My swelling has just started to worsen and I am concerned that it might be a sign. Last week, the swelling was so bad in the morning that I couldn't put on my own shoes. I had to go out and buy some more that I could wear to work.
I am bloated, not moving much and starting to experience some pain in my colon area.

Hopefully this next week will give me the opportunity to rest and maintain.