This Is Hard

I'm trying to remain calm and relaxed and enjoy the winter weather.

Happy snow storm!

I Want You Back!

I realize I'm not being very positive but it's pretty difficult to muster up some confidence in the future. Besides, I think I'm doing pretty well putting on the brave face every day.

The truth is, I'm scared. It's been over a year and a half since I started this latest battle and I'm not any better off now than I was when I began. You see, Humira is officially not working for me. It is now week twelve and, aside from a small glimmer of hope about six weeks ago, my symptoms are getting worse. I had a really hard week at work and I've caught a cold.

I went three days without having a meal last week. I had small snacks and tried to drink enough, I even bought some Ensure (although I have yet to take one out of the fridge). Despite the starvation strategy, I only made it to work on time without making a pit stop once.

So my doctor is sending me to radiology on a fact-finding mission next week. Depending on the results, we will decide on the next step the following week (unless I can't get an appointment b/c of Christmas).

I can't think about anything else (my body won't let me). The constant pain and fear are incredibly distracting. I have to plan my entire day around my digestive system and obsess over every little thing I put into my body. Without all of the planning and obsessing I find myself feeling very, very sorry.

I WANT MY LIFE BACK!

Crohn's Guilt

I have Crohn's Guilt.

I am in the midst of a "flare" that began a year and half ago. I've been through lots of drugs and lots of symptoms and it's all been awful but the worst side effect, by far, is the guilt.

My apartment is filthy, I have a untouched pile of work on my desk in the office and a million projects at home that I want to finish. My friends, family and boyfriend all want to go places and do things and eat food. Me? I'm in bed battling (choose one) a migraine, stabbing/burning/crampy abdominal pain, nausea and/or heartburn from hell. If you can't find me in bed, I'll be in the bathroom.

I know there are a million things that need to be done but I can barely stand up much less take the train to the office. Is there anything I can do from home?

Nevermind, I'm feeling fine today. Let's go somewhere. No, I can't go to a restaurant. I'll never make it home alive. Ok ok, fine. Let's go to dinner. No, I'll just have a Coke. It's fine, don't worry about me. I'm not that hungry anyway. Really, don't feel bad, I'm used to it. I know you're not used to it but I will be fine. Just let me have one bite of yours.

Oh man, we need to get off at the next exit/subway stop/gas station. Hurry! NO, get off this exit! I need to stop NOW! I'm not going to make it.

I know we were supposed to go to that movie tonight but I really can't. I'm feeling awful. Can we just go home? I'm sorry.

I'm sorry, we can't go for breakfast before we do laundry/lunch before we go grocery shopping/dinner before the movie. I won't make it.

I'm so sorry I made you pull over/bailed on you/yelled at you/made us late for the play. I'm really sorry. Sorry. I'm sorry.

Since I can't read minds (yet). I never know if the people in my life are disappointed, angry or if they actually do understand. I still can't believe this is my life. This is so hard...