I am sitting in the infusion room while Marty sleeps. The Actemra is going in, so we are less than 1 1/2 hours from being finished. We have already been through the questions (lots more than 20), nurse has done her exam, IV is started, pre-meds were taken, and vitals are being taken every 15 minutes. Marty and I had some breakfast while the pharmacy was mixing the Actemra, and as soon as the Benadryl hit, he was out.
Watching him sleep, I am thinking about his strength and resolve. Ever since the Actemra started controlling his inflammation, he has made a conscious effort to get back in shape and eat more healthy. He has stopped drinking sodas (or cokes as we call them in Texas) and has cut way back on sweets. He avoids greasy and fried foods, and purposely chooses the lower fat and calorie options at restaurants. He is more active (partly because he can) and exercises at home several times a week.
Yesterday when we saw Dr F, our family doctor, we were discussing his stomach issues and how eating sometimes makes his stomach upset. I remembered he had blood allergy testing done, and asked Dr F to reprint the results for me. Marty reviewed them and I was reminded how many foods he tested as being allergic: wheat, corn, shellfish, soy, sesame, peanuts and walnuts. Those, plus a half dozen grasses and trees, and our dog and cat. None of these allergies are severe, and Bella commented how many of those foods he had eaten in the past few days.
Marty decided he wanted to cut those foods out of his diet and see if he feels better. We discussed what he could and couldn’t eat, and realized he would need to eat more rice and potatoes. He apparently wasn’t too keen on giving up all those foods at once, so we settled on one at a time. We are starting with wheat.
I have heard that wheat can cause inflammation, but the thought of cooking without it sounds like a royal pain. I know you can make bread from potatoes, and rice flour can be substituted for wheat in recipes, and apparently I will need to start looking for gluten free products.
I was feeling sorry for myself having to make these changes, when I looked at Marty and thought about the changes he has already made. Not only trying to be healthy, but the trials he has had the last few years. He has worked through pain, pushed himself through fatigue, ignored criticism and stares, and put on a happy face while getting injections, infusions and blood draws. I guess the least I can do is figure out how to eliminate wheat from his diet.
Kids with juvenile arthritis are some of the bravest and strongest people I know. They rarely complain, and give their best when others are just going through the motions. They want to be normal so much that they will endure pain and stiffness, knowing they will hurt more the next day. And here I sit thinking about getting my next chocolate cake fix. I’m such a wimp.