Wednesday, February 18, 2009


I know it's only been a little over a week since I lasted posted something but it feels like it has been an eternity. Unfortunately this post will probably be my last for the next few weeks.

As I have mentioned before I have Crohn's disease and for the past eight months I have been getting sicker and sicker as the days go by. After my dreaded colonoscopy at the end of January it was discovered that my disease was not in remission as my Doctor had first thought but that it was mildly active. Normally this would be when I would be prescribed additional meds and started on heavy doses of steroids, this time for whatever reason my body is not responding to any of the medication, including the steroids. The only thing the steroids have managed to do for me is make me balloon up and feel like an old woman. After another painful weekend and sending my husband out on a bowling adventure with my sister and my cousin and their significant others while I stayed at home suffering I decided enough was enough. I am tired beyond words and am weak physically and emotionally from this. I have spent more money on co-pays and new medications this year than I would like to even really think about. So I made a decision that I knew would come eventually but one I have been dreading since I was first diagnosed several years ago.

Next week I start my first Remicade treatment, which for those of you who aren't familiar with the drug is an IV infusion that is done every few months. I get to go the the hospital and sit for a few hours while the drug is slowly pumped into my system. With this decision comes a lot of fears, the first being that it involves needles. I am embarrassed to say that I am a nervous wreck when it comes to needles and that fear became worse over the summer when I was admitted to the hospital. My nurse, without any care shoved the needle into my arm, an event that about sent my sister through the roof because she witnessed the neglect the nurse showed me, which isn't that big of a deal, but later that night when another nurse came in to take my blood pressure she put the cuff of whatever they call those things right over top of the needle which ended up shoving the needle through my vein allowing all of the IV fluids and medications to leak out into my arm for over a 24 hour period. There are no words to describe the pain and discomfort that is caused when the fluids leak out. My arm swelled up and became no use to me for about a day or two. Ever since then I have become a little on the ridiculous side when fearing the worst...ask my Aunt who had to witness my reaction during the course of being tested for TB. Anyway, the fact that this procedure involves needles is a little on the scary side for me but one I am dealing with...slowly.

I think the thing that scares me the most is that my body will now be dependent on this drug. I will have to have this done every two to three months now and for the rest of my life which is a very long term commitment when you are only twenty five years old. I am the biggest procrastinator on the face of the earth and am known to not do or complete tasks until I absolutely have to. I can't tell you how many times I got grounded as a child because of the fact I always waited until a day or two before a project or a report was due before I would start it. I think it's funny now because believe it or not, I always scored better on the last minute projects than I ever did on the projects I would start on time and actually dedicate myself to. I guess it's how I roll. It's just the thought of knowing that I have no choice with this and that now for three hours of my life every two to three months for the next fifty or sixty years is going to be filled with needles and a commitment that I can't get out of is just mind boggling.

And then of course are the what ifs. What if Daniel and I for whatever reason were to both lose our jobs and I would no longer be covered by insurance, how in the heck would I be able to come up with as much as $12,000 to pay for the treatment? What are the long term affects of the medication? This drug was put on the market back in 1998 so the longest someone has been on it is ten years. What if in twenty years other organs start shutting down? Will I be able to get pregnant and continue with the treatment while pregnant? Will my child develop cancer in his or her thirties because of the drug that I took while pregnant? I read that my chances of getting lymphoma is greater. Great...I may not be sick with my Crohn's but I may face cancer, is it worth it? The question that scares me the most is what if for some reason I can't get the treatment, whether it be because of lack of insurance or whatever, what will happen to me? How sick will I get without it because my body has become reliant on it to function? What if?

It is because of the fact I currently am scared to eat anything for fear of the aftermath and the fact I am to tired to even think about cooking and posting about a meal that I am going to be taking what could turn into a two week hiatus. I am currently living on toast and when I am feeling rebellious, a couple of bland scrambled eggs along with a large glass of V8 Fusion to keep the vitamins in my system. I don't imagine that you guys want to see post after post of toast with scrambled eggs so I am going to spare you. My poor husband though, he has been living off of leftovers, leftovers that I made on Saturday which I couldn't even finish. My poor pregnant sister had to take over the reins. It was a meal that turned out really good and one I didn't even get to enjoy, I promise it will be recreated when I am more alert and I will be more than happy to share with you. Until then, keep me in your thoughts and hold tight until I am back.