I saw my gastroenterologist on Tuesday, and we talked a little more about my decision to stop Remicade. He’s nervous about it, but so am I. I’m hoping that the holistic approach will prove to be the victor and I won’t have any setbacks from halting this potent drug, but maybe it’s doing more for me than I want to give it credit for. (I’m using the present tense because the Remicade is still in my system from the last infusion.) I’m playing a wait-and-see game at this point…within the next few weeks, either my flare will get worse or it won’t. The big question is, if I do notice signs of my flare getting worse, will I definitely go back on Remicade? I already know that it’s helping at least a little, so maybe I should expect a setback. In the case of a setback, I could either say that I don’t want to risk my flare getting to the point it was at in May and consequentially choose to go back on Remicade, or I could say that this is a step back, but I’ll continue to move forward, albeit slowly, with the holistic path. Decisions, decisions. I wish my colon could tell me what to do!
Health + Life Update
I’ve continued to improve, and I might call Wednesday a landmark day; I felt okay the entire morning, and I went to the beach! Too many clouds for a tan, but not enough to stop me and my friends from going in the water. It felt so rejuvenating to be standing in the ocean, diving through the waves, and soaking in the salt air. Back on land, I found this little thing in the sand that looked like a puffy flower made out of wood, and one of my friends found a filter disk from a wastewater treatment plant. Sea shells are so overrated.
Other than the mornings, I’ve been feeling okay almost the whole day, although there are still ups in downs. I often still feel some discomfort while on the toilet, but it’s manageable. I use the bathroom usually 5 times over a 24-hour period, one time of which is during the night. When my flare was at its worst, I felt pretty terrible the majority of the day, felt pain while on the toilet, and used the bathroom over 10 times in a 24-hour period, usually three of which were during the night. So I’ve improved quite a lot, but I have more healing to do.
I have a routine:
In between eating (because my day is based around food and smoothies), I either work on this blog, watch television (Food Network and HGTV during the day and NCIS or Without a Trace at night), watch a movie, or read. Sometimes I make dinner, and that’s quite time-consuming. Or I’ll just chop vegetables for whatever meal my mom makes. Chopping vegetables became a hobby of mine at the beginning of July, when I realized it was something useful I could do, and it’s possible to do while sitting down. I’ll gather the vegetables, knives, cutting board and bowls, and I sit on a rocking-chair on the porch and chop away.
I see my chiropractor on Mondays and my acupuncturist on Thursdays. A post on acupuncture will be coming soon.