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Tuesday, September 20, 2011

support Group leader--me?

CCFA called and wanted to know if I would come to fill in as one of the support group leaders this week. Now, this is a position I held for about 3 years, and I was fairly religious about going.  Then I had my craniotomy, and it became more and more difficult to go out on week nights, and be supportive of people just starting out in the world of Crohn's Disease and Ulcerative Colitis.
Ulcerative Colitis, and Crohn's has almost always been a part of my life, so to me, they are just chronic illnesses that have to be dealt with.
HOWEVER, my head hurting all the time is a different story to me.  when i stepped down as a leader, i explained that it was not that i didn't want to be supportive, I just could commit to always being somewhere and having people depend on me, because when my head starts to hurt---which it does often and intensely, I can't be supportive of others. That's just how it is.
I would rather have a stomach ache than headache. Not everyone would say that, but I have mastered digestive issues. I spent years driving my kids to school or playing golf or running errands, knowing where the nearest bathroom was, wearing pads or depends, or not eating purposely before going out. Did you know codeine slows your system? I would take a codeine before going to a party or bar mitzvah and purposely not eat so that I could have fun.
I don't drink anymore. and I LOVE WINE. But a headache isn't worth it. so I take an adavan or xanax in the car on the way out and I am relaxed as you will be with your drink, with a lot less calories!
anyway, I've had a pretty HORRIBLE headache this week, and been VERY dizzy, so I'm not going to be supportive of anyone but ME, and MY KIDS, and HUSBAND.
But you have a good week!

Wednesday, September 14, 2011

Should I ALWAYS be positive?

It's been a long time since I've written anything. Not because I had nothing to say, but perhaps because I had too much. Reading through my posts, and the statistics on who reads them, the decision of whether to always be 'uplifting' and 'positive' or would allowing my 'self-pity musings' to flow through be beneficial to others, or just cathartic. So I've decided it's a bit of both, and if someone doesn't want to read -----click off!
I've had a headache since we were in Jackson Hole! The neurologist said places with that kind of altitude are not great for headache sufferers. You know what I think? The amount of fun and laughter and memories that I shared with my husband and children made it worth it. And I'd do it again. I didn't give up living when they took out my colon, and I'm not going to now. Yes, I have to take extra drugs, and rest more than others, but we laughed, and had lots of fun!
I also took my daughter back to college and set up her room. Many questioned WHY I NEEDED to do such a thing. The answer is very simple; it made her happy. It was comforting to her to have her dad and I BOTH go and fix and move and put things together 'just so'. Her room required creativity to make it feel special, and that is my specialty ;). Once you are the mom, that's your job for life!