I once wrote a post about Crohnology.com, the relatively new site that allows anyone in the world with IBD (or parents of kids with IBD) to connect in a much more organized and helpful way than all the forums and blogs out there. It’s starting to become something that I can’t imagine living without, especially since a few days ago, I decided to take greater advantage of its features than I was doing before. On this site, you can track your health on a 1-100 scale and write notes pertaining to your health as often as you like. I never got into the habit of documenting my health on Crohnology, until now. So I took the scattered notes from my Evernote (if you don’t know what that is, it’s awesome and you should look into it!) and backfilled my health since the beginning of the year on Crohnology. So now, thanks to website designers who know what they’re doing and who they’re doing it for, I have a visual of my health for the year, which should help you understand my past two months too:
Just know that this is imperfect; I wrote down what 0, 25, 50, 75, and 100 on the scale mean to me, so that I can be as accurate as possible when I post changes, but still, there is definitely a margin of error with each point. I could never put into words the difference between a 55 and 60, for example, plus if I did, I’m sure I would see it differently in another week. So don’t take this too too literally!! (Okay, Mom and Dad?) I think it is a good rough idea though, as an up is an up, and a down is a down; it’s just a matter of how much up or down that I’m not always sure what to choose.
You can see how I’ve had a couple dips, but a trendline would show a positive slope. One of the dips in this chart I can account for – the one starting between February 10th and 14th when I tried to taper a half milligram of prednisone and it did’t go over well. Fortunately, when I went back up to the 8 mg I’ve been at for months, I began to improve again. I’m bummed I’m stuck with prednisone for now, but I am glad I made the attempt to decrease so that I know I’m staying at this dose for a reason, not just out of fear of what might happen if I decrease while I’m still in the flare.