1. The Ups and Downs
Certainly when you suffer from any illness or live with someone who does, there's a lot of emotional ups and downs. But the ups and downs I'm talking about here is weight. Weight can be quite a big issue when you have Crohn's. I've gained and lost 30+ pounds in a matter of months than more times than I can remember. This has inevitably left me with beautiful reminders all over my ass and back called stretch marks. Now, at this point I don't really care about them but they certainly aren't as character building as say, the scar on my abdomen. I wear that scar with pride (most of the time). But the stretch marks, ew.
Also, my wardrobe consists of clothes ranging in size 2-10. It's been a while since I've worn things in the higher end of that spectrum but I still keep those clothes around because you never know when you are going to blow up. Luckily I've managed to keep off the steroid 30 this time around. On the opposite end, the smaller sizes are clothes I wore in high school and my first year of college. They aren't exactly clothes that match the current trends nor reflect the fact that I am almost 26. But they fit me and I refuse to squander money on my credit card to buy clothes that may or may not fit me in a couple of months. I've also learned that each time you gain a significant amount of weight in a short amount of time, it doesn't go to the same places. 120 pounds will have you in different clothes each time. Sometimes your ass is bigger, sometime it's your legs. You just gotta try on that size 4 or 6 and hope it fits. If not, put on a loose shirt and you'll be the only one aware of the muffin top going on underneath.
In short, us Crohn's people never quite have a sense of self. Your body is constantly changing, people are constantly commenting on it, and you are constantly aware that weight is always going to be talked about at your next doctors appointment. They even have a nice line graph in my chart documenting my fluctuations in weight over the course of the past three years. I don't know about others with illnesses and Crohn's in particular, but as a young woman, it can be frustrating and it's never something I've been comfortable with. Maybe it's because of the fact that when I am healthy I like to take care of my body so the weight talk when I am unhealthy just reminds me of how it has changed and I don't quite have the same control. Regardless, I know that people have the best intentions when they comment on my weight and tell me how "healthy" I look. It's just not always the easiest way to hear it. I had a friend comment the other day that my eyes looked like there was finally life behind them and honestly that was the best comment I could have heard in regards to someone noticing that my condition has improved. I'd rather hear those things, like that I don't look as pale or my hair looks shinier or I look happy.
Anyways, that's all I am going to say about weight and I'll add more to the list at another time. In other news, I talked to my doctor yesterday about my symptoms and he thinks that while my improvement has been very minimal, he can allow me to get a fourth infusion of Tysabri under the condition that I keep tapering off steroids by 5 MG each week. Right now I am at 30 MG and I haven't noticed any sharp increase in symptoms so that is okay with me. He basically told me I have three options. We could go in and do a complete colectomy (which I'm not ready for), try Tysabri one more time, or wait a month and start Cimzia (another Anti-TNF which I probably won't respond to since I failed with Remicade and Humira). Obviously continuing Tysabri seems like the best choice out of all of them. I am hoping this infusion pushes me over the edge and I REALLY start seeing the relief I need.
Even though I am not at 100% I have been feeling great as far as my energy levels which has allowed me to become quite ambitious in the past couple of weeks. I'm going to visit my BFF Claire in New Orleans in two weeks, studying for the LSAT, and I'm joining a Field Hockey league with my other BFF Anne. Hopefully I can keep my optimism intact for all of these things I have planned. On the phone the other night my doctor told me he was looking forward to seeing me on the 30th and that we will hopefully be planning my next surgery, my reversal. Heck, if he is optimistic, I can be, too.
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