Hurry Up and Wait

Often throughout my time being sick, I have always been counting down the days until an important event. Sometimes it's been a doctors appointment where I knew big decisions were going to be made. My sophomore year of college it was a countdown until the end of the semester when I would have my colostomy reversed. These past couple of years it's been wishing for time to go faster so I could reach the time period alloted for whatever new therapy to begin "working". During these waiting periods, I've never been able to enjoy anything else that was happening in the present.

I figure in the past nine years with Crohns, I have wanted time to go faster more often than not. The big events of your life when you're dealing with illness are not like most where there's certainty in the reward waiting for you at the end. With chronic illness the waiting games are torture and you never know if the result will be worth the agony and exhaustion it takes just to endure the exams, medicines, and appointments. And even when there is good news waiting on the other side, it just means that you've bought some extra time. Nothing is ever certain.

Part of my decision-making lately has been thinking about all of the time in the past nine years I have lost because of Crohns. I wouldn't be able to live with myself, if, in ten years, I looked back on my twenties as a decade that should have been the time of my life. The time I've lost recently has been especially rapid. Everyone around me is moving and I'm just stuck in a rut where I'm standing still and I have nothing to show for it but the physical and mental effects of fighting a battle that can't be won. Part of me feels the defeat of this assault, but another feels victorious that the duration of this more recent struggle has allowed me to arrive at a place of acceptance.

I can see the light!

The State of Remicade

Today was another trip to Maryland for my infusion. It seems like the four weeks just flies by and before I know it, it's time to go back down again. This time I scheduled the appointment around noon because I really don't enjoy waking up so early to get down there. We left around 9 am and got there a little before 12. No matter how early I leave it never seems like its early enough because I'm always just barely making it there. I guess because I'm always going at different times I haven't quite gotten a sense of the perfect times to leave. And then coming back is always a question mark. Today we left Baltimore around 4 and barely ran into any traffic. We were home in Philly by 6. Strange.

Anyways, I haven't been feeling very well since all those obstruction episodes a couple weeks back. I haven't been able to do much, honestly. I feel like I get short of breath from walking up a flight of stairs and lightheaded with the slightest movement of my head too fast in any direction. That on top of my normal Crohn's symptoms has been a rough combination. But I am trying not to push myself too much because I have to take the GRE's on November 15 and I need to keep myself in good shape.

I briefly discussed some of my concerns with my doc via e-mail. Between my symptoms and the news I got after my MRI, it's pretty safe to say this colonoscopy is no longer being done to see if my colon is healthy enough to be reconnected. At this point my doctor wants it done to compare it to the one I had before I started Remicade again. Basically, if he does not see much improvement then we need to consider another therapy option.

Now you might be wondering, like a lot of people, why I would abandon Remicade if it made me feel better? And while it did improve my life drastically, I don't think it's enough anymore. My symptoms are still way too inconsistent for me to feel comfortable living a normal life. I think I was so happy about how I was feeling because it was some improvement, and nothing else therapy-wise had done anything to make me feel better. Also, I am now about two weeks steroid-free. And I definitely think there was something about the combination of a small dose of steroid and Remicade that clicked well. But I can't be on steroids forever, and certainly Remicade and 6-MP (Chemo drug which has been shown to extend the effectiveness of Remicade) should be able to make me feel better.

Now back to the scope and MRI. The scope next Thursday will give my surgeon a better idea about the extent of my fistulas. I read the report myself today and I have three of them, two of which are producing small pockets of infection. From my understanding it all depends on the location and size of the fistulas to see if they can be removed. Either way I am pretty sure I am going to need surgery to place the setons in, which I talked about last post.

Everything going on right now is very overwhelming. I feel like I came to a lot of conclusions about my life and I want to be able to carry out all these plans I've been thinking about the past couple of months. I am excited at the idea of possibly being in school next year, but if I do get accepted, I need to be healthy. I don't want it to be like some of my college years where I sometimes could barely even walk from class to class. I want to enjoy every minute of it this time.

I keep telling myself that if the scope next week shows things are still really bad, then I am ready mentally to have surgery, because I have exhausted a lot of my therapy options. I know surgery is the only thing that will give me consistency again. Lately when I go out with my sister somewhere or go for a walk, I think to myself....if having an ileostomy was the only thing I had to worry about each time I went out, I would be 100 times happier, because the problems associated with an ostomy are A LOT more manageable and infrequent than Crohn's problems. But it's a lot easier said than done...

Guess I'll be thinking about this a lot more come next week when I know for sure what's going on.

Baseball and Babies

I was extremely spoiled last week. My family has had a couple of Phillies ticket packages dating back to the last couple of seasons at Veterans stadium. So through the years at Citizens Bank Park we've always had the opportunity to purchase playoff tickets before they go on sale to the general public. Now, my sister being the responsible, positive person she is has always believed the Phillies were bound to go to the playoffs each year. And trust me, we were all happy she believed in them come the 2007 season and particularly, 2008 when everyone wondered how we got suck great seats without paying an arm and a leg for them.

So throughout the 2007 and 2008 seasons I saw some remarkable games and even more remarkable playoff appearances. Unfortunately last year I was too sick to attend so you can imagine how excited I was this year. I probably attended over twenty games this season, which I will shamefully admit, isn't as fun as it sounds. I love baseball, but going to two games a week gets old, and expensive.

And then last week happened. My sister and her husband were supposed to take Wednesday's game, while my brother and I would attend Friday. But being that my nephew is only a month old, my sister decided to lend me her hubby for the night and let me go to the game. And we all know what happened. It was truly an amazing thing to witness and I am so glad I got to experience something so incredible. Here is a shot from our seats after everyone was going to rush Roy on the field and the fireworks were going off. Amazing.

As if that wasn't enough, I got to go with my brother on Friday and witness the Reds collapse from right field again. The misplayed ball by Jay Bruce occurred right in front of us. I kinda felt bad for him but the crowd reaction was pretty hilarious. And I gotta post this pic because of my shirt, taken at McFaddens before the game.

And this picture, just because my nephew is the cutest man in the world!