A Very Nearly Tea: Taking control of her disease

It is strange how differently you read the news when you are facing threats much closer to your family than the actions of distant politicians. I wouldn't say I have necessarily gained any great perspective. Tunnel vision would be more like it. In fact, I do not think I would want to live in a world where everyone was as focused on their own problems as I have been for the last couple of days. Imagine conversing with people whose only response was a sort of glassy-eyed shrug because they couldn't even bring themselves to pretend to care!

But eventually the initial shock begins to give way to the need to do something. Unfortunately, there isn't much to do which explains the hundreds of pages of information I have read along with the many hours I have spent synthesizing the wealth of information into something my daughter can understand.

And I am also slowly beginning to look at my daughter's specific strengths in dealing with her disease. Those personality traits which make parenting difficult with her are exactly those same traits that have kept me from really worrying that much about what she will turn out like as an adult. She is strong-willed and independent. Nothing keeps her down, and no one can stand in the way of what she sets her mind to. She is determined and has the will and determination to follow through on those things which are most important to her. She has the spirit of the pioneer.

With any chronic condition, it is important for the patient to learn to manage her own symptoms and treatment. Particularly with a disease such as this where there are no clear answers. Everyone responds differently. The symptoms are different. The progression is different. The reactions to diet are different. The response to medication is different. Doctors and patients should always act as partners in the health of the individual, but it is not so critical when you go in for something like strep throat and come out with a single round of antibiotics which will cure the disease.

Already, she has displayed an interest and ability in just that kind of management. She had a ton of questions at the hospital and wanted to know exactly what was being done and why. She questioned the medication and although she does not like swallowing pills, she reminded me this evening that it was time for her to take it. I showed her a diet which is supposed to help ease the colon's work to aid in relieving the symptoms and explained why certain foods might cause her more troubles than other. She took it and adopted it as her own, reading it frequently to see what she should or shouldn't eat, committing it to memory. The only direction I gave her was when I said,

The nice thing about this diet is that you can cheat. You will learn how your body responds to different foods and then be able to decide better whether or not it is really helping you.

And now she selects for herself those things which are on the list of foods from what is served. She only asked if I would make sure we had something she could have for movie night while everyone else is eating popcorn and what she should do when they serve snacks at AWANA. I told her she can either eat them or I can send something along with her. She decided she wanted to pack her own snacks.

Today, we learned she needed another round of tests: a bone density scan, an X-ray of the small intestine which will involve a Barium swallow and another blood draw to see if she has an enzyme necessary to process a medicine the doctor is thinking of prescribing. As I told her about the first two, she was actually excited. After all, it isn't every day you get to see pictures of her insides. I knew she wouldn't like the blood draw. She has said once already that she thinks she would have less problems if they'd stop taking what blood she has left. Her reaction to the news, however, surprised me. Her shoulders dropped a little and she let out a deep breath and said: