December 1-7th is Crohn’s and Colitis Awareness week. It’s only fitting, I suppose, that I am in the hospital for a few hours to get my Remicade Infusion. As you can see from my expression up there, I’m not having a good morning. I’ve had a headache (no fever so the infusion will go on!) for 3 days, and I can tell it’s infusion time since my Crohns Disease is acting up. It was a hot rush this morning to get out of the house, between getting the kid ready, and getting myself out of the bathroom, I was damn near in tears. I barely managed to get the short kid off to school on time and then had to rush back to the house to use the bathroom.
I had already called in my height and weight for my infusion bag to get sent to pharmacy, but pulling into my driveway, I realized I asked them to mix it early. I had thought my appointment was at 9am, however it was set for 10am. All the rushing around, and getting anxious being stuck in the bathroom for nothing. Sitting in traffic I about lost it. I did lose it after having to stop at a gas station on my way in to use the restroom.
So here I am. After 3 tries, my infusion nurse realized that my hands/crooks of my arms were not working for IV lines, so I now have a line in my inside forearm. Whatever works I guess. He noted that over the past few infusions, it’s harder and harder to get a line (regardless of how much I drink or eat before hand). At least he’s willing to get creative. However, being stabbed repeatedly isn’t my cup of tea after a rough morning. ::Sigh::
I’ve been doing alright lately. I took myself off of the 6mp a couple of months ago, I had noticed no difference in my symptoms, and the side effects were obnoxious. Most notably was a loss of appetite (I like my food dammit) and hair-loss. The hair-loss was one of the bigger reasons why I chopped my shoulder length hair off, that and my innate ability to not to do my hair (also known as lazy-ass syndrome). I figured screw it.
After I took myself off of 6mp, the frequency of my Crohns symptoms actually decreased, and my hair stopped thinning so rapidly. Finding out that my disease had spread to another part of my intestines prompted the idea that the Remicade wasn’t working anymore… which led to the super high dose of 6mp. Welp, here I am.. still kicking on Remicade. Hanging in the balance to see if it continues to work, or puts the new area in check without the 6mp. I’ll argue my case later with my GI. If Remicade ultimately fails, I’m still up for trying that new medication, but whatever. Take it as it comes.
One of the things that really, really gets to me, is the fatigue. I am constantly tired, getting off of the 6mp seemed to help that a bit, but I’m still exhausted by mid-day. Hell, over the holiday weekend, I was exhausted a couple of hours after I woke up. I think that’s the most frustrating part of it. Even if I’m virtually symptom free for a couple of days, my joints hurt like a … well you know.. and I’m tired. I can deal with pain and diets, but being tired for what seems like no reason just pisses me off.
This disease sucks, for a lot of reasons, but it’s tough to deal with because it’s a so-called invisible disease. I don’t look quite so bad on the outside… hell, when I was at my sickest I kept getting compliments about how great I looked with the weight I had lost. All other people know is that I’m always tired (some think I’m just too lazy to do things or just want to blow off plans) and that I use the bathroom a bit more. It’s hard explaining to people that it’s more than a tummy ache… over and over again.
No matter what you explain, or how many times you explain it, the social effects are… depressing. I’ve had family get upset because I didn’t want to continue at the pumpkin patch (after having an accident). I’ve had coworkers/bosses not realize that I am serious about going home after using up all of my extra undies and Imodium. I’ve had friends get mad when I don’t want to go out, or cancel plans because they don’t *see* my sickness, or “come out, you’ll feel better once you get moving”. The fact that I use up my spoons some days before I even make it into my clothes just pisses people off. (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)
It could be worse though, and has been worse. Most days I’ve been managing to keep a positive outlook, some days though it just sucks. Over the past handful of years Crohns and UC have gotten a lot more attention than before, and awareness is spreading. Some days I’m thrilled that people are learning about IBD, some days I could give a fuck less. Some days, even my online support network can’t even get me out of a funk. Either way, the best thing to remember is that those of us with IBD are not alone. It’s okay to feel crappy, it’s okay to say NO when you don’t feel up to something, and it’s okay to feel upset.
Days like today? Where I used up all my spoons before I put my shoes on? I’ll make it, you’ll make it, and things will get better.