Sunday, March 22, 2009

Have you ever had one pivotal moment in your life which
may seem fairly innocuous to others but was life-changing for you?
The above quote was on Robin's blog yesterday. It has made me stop and think about my illness (Crohn's) and the kids and Bill all having Cushing's.
Along the way there have been a few of those moments Robin asks about.
I have had Crohn's for many years. About 12 years ago I had a bowel resection. It would put my Crohn's in remission. I knew there was a good chance that it would come back but I had a great year and a half before that happened.
Crohn's has an affect on my eyes. One thing it does is cause eye makeup to irritate my eyes and make me cry, even hypoallergenic makeup. I didn't figure this out until after I had surgery and for some reason decided to put on eye makeup. I never wear it. Who wants to walk around crying all the time! But anyway I put some on and I didn't cry. It all clicked into place. So periodically I would put on eye makeup just to see what would happen. It was probably about a year after my surgery that wearing the makeup made me cry. Right then I knew that my Crohn's was back and it was just a matter of time before I started feeling sick again.
It seemed so weird to me that such a small thing, (crying from my makeup) could change my world so much. But in some ways it was nice to be forewarned. When I did start getting sick it wasn't a surprise.
I still think it's a weird symptom, but not one I can argue with.
With the kids and Bill all having Cushing's we were sort of eased into it with Justin, and the rest followed. Some steps were more like leaps but we were headed in the right direction.
With J&J having a recurrence there was a moment with each of them that I knew things were going to change. Then there were more moments that reinforced that thinking. We would no longer be moving forward praying they had a cure. Instead we were back at the starting line with more testing and surgery in the future.
I knew first with Jess. Probably before she did or at least before she was ready to admit it was back. I'm not sure which is was. There was the day she had to have something to eat before we left to do papers early in the morning. There was the day that her mood changed on a dime. There was the day I realized she was no longer reading. There was the day I just knew.
With Justin I wondered for quite a while after surgery whether he had a cure. There were a few things that were better for him but for the most part he seemed pretty much the same as before surgery. There was one week where he really seemed to feel good and I had hope that he had finally turned the corner. But probably a week or two later he came over to the house and with one look I knew it was back. It was his eyes.
Even though there had been no testing yet, I knew. I knew they both had a recurrence. And the weird thing was, as much as it scared me, it was also a relief - I no longer had to watch and wait wondering if they would have a recurrence.

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