Lazy Sunday

Today was the laziest of Sundays. Yesterday I drove down to the eastern shore in Maryland to visit one of my friends. He had a barbeque at his house on the bay and it was amazing to see old friends and make some new ones. Needless to say I indulged in some great beer, food, and fun. After leaving the bbq, my old college roommate and I went to her apartment in Annapolis and spent the rest of the night catching up on eachothers lives. We stayed up late laughing and ended up sleeping until 1:30 today. YES. ONE freaking THIRTY. How is this even possible? I don't know, but I slept like a rock and it felt great to sleep past 6 am for a change. We then proceeded to lay on the couch and watch three hours of "The World According to Paris". Yes, I am okay with admitting that show entertains me. I ended up back in Philly around 8 and I am certain I will sleep like a rock again tonight.

Must be hard for my friend to wake up to this every day!




The sunset over the Chesapeake:



Here's a couple more pictures I want to share just because they are pretty. I've been running a lot on Kelly Drive just because I find it easier to run with so many distractions and it's generally safer than the park. I live in such a beautiful city and although the adventurous side of me would love to live somewhere else one day, I really can't imagine loving a place as much as I love Philadelphia.

A shot of the sunset over the Schuylkill River:



And of course, the obligatory photo of the cutest nephew EVER. I feel so lucky that I get to spend every day with this kid and watch as he grows and changes:



As for the week ahead, it will be very busy. Watching Jimmy Rollins break the world record for longest batted ball on the Benjamin Franklin Parkway tomorrow. Tuesday I get to see Cliff Lee take on the Red Sox in a World Series preview. Wednesday I am going to happy hour with my bff to see DARREN DAULTON (woot!) broadcast his segment with 97.5. And of course the excitement of one of my absolute favorite holidays, Independence Day this weekend :)

Yay for friends. Yay for food and beer. And yay for being healthy to participate in celebrations of all kinds. Hope your week is as action packed as mine.

Stevie gets rejected, Part I

I wasn't going to write about this but I realized I'd already gone so far as to share some details about my personal dating experiences so I figured I should follow up on it. Unfortunately this entry might backtrack a bit on the optimism of my previous post, as my wound is still fairly fresh. Yes, last Saturday I decided to have "the talk" with a guy I had been dating for about two months. Seeing as how he turned out to be a complete asshole, I don't mind talking about it openly.

One of the negative aspects of having an ostomy is that I sometimes feel the need to date down. I'm sure even without it I would probably do this as a result of the normal insecurities of being a woman. But, I think I put my blinders on and date guys that have some major deficiency in their persona because I feel like this will make up for the fact that I have an ostomy. Like somehow they will overlook it because they know I'm otherwise too good for them.

But then I met said boy I mentioned in the first paragraph. All was going well for a while. I honestly didn't expect him to actually call me when I gave him my number because he was attractive, had ambition, and had a good personality. Usually I don't get all three. To my surprise we went out the first time and things went smoothly. He opened doors, paid for everything, and did a lot of talking about all the things he thought we would have fun doing together. So we went out again a week later and then started doing more lame things together more frequently; cooking, walking outside, etc etc.

Now last year I had gotten to this point with someone and then dropped the bomb on him that I needed to talk to him about something important. I more-so dropped the bomb via phone because I wanted to make sure I wouldn't chicken out and I would actually tell him. It wasn't exactly my idea way of doing it but I think it was okay because of what I was going through and how hard i knew it would be to initiate that conversation on my own. This particular boy decided that whatever "important" thing I had to talk to him about was too serious and I basically never spoke to him again even though he assured me we could talk about it soon. Blah. Whatever. Even though that was a fucked up thing to do, I am glad that in some way he recognized that whatever it is I had to say was too serious for what he expected out of our relationship.

Okay, so back to current boy (I am calling them all boys because they are certainly not men). So I made plans to meet up with him and drop the ostomy bomb. I was quite nervous all week but after realizing I was prepared to speak about it in the most positive, confident way, I knew there was no reason to worry. I just had to be honest. And I was. I was actually quite proud of myself, although it did feel quite like an out of body experience because I was way too composed for my normal nature. But after talking about it, he changed completely. At first I thought he was just shocked and didn't know what to say so I overlooked it. He was certainly sympathetic but something wasn't right. I was glad we had no plans to hang out for the rest of the night because honestly I just wanted him to be able to think about it and process everything without me there. I pretty much left the ball in his court and told him that regardless of how he felt, I just wanted him to feel comfortable telling me what he really thought, even if that meant he didn't want to date me anymore. When we left, he said he would call me the next day.

And that was the last I spoke to him. No phone call, no douche bag text message rejecting me. NOTHING. When I thought about it after I left him, the thought didn't cross my mind that I would never hear from him again. I knew there was a possibility he would have trouble grasping what I had said, but I still figured that our time together had been worth the decency and respect of a fucking phone call. I think that's the least someone deserves when they pour their heart out to you and share a huge piece of their life. He knew about my past with Crohn's and he overlooked that. Yet somehow he couldn't overlook the ostomy, nor feel like he needed to give some recognition of the emotions involved in opening up to him. What. An. Asshole.

I was certainly upset about it this week. I knew he wasn't someone I connected with on some ridiculous level and I wasn't ruined by the whole experience. But it certainly left me sad and wondering if my friends are all just lying to me when they tell me my ostomy "isn't a big deal". I mean I think about the fact that this boy couldn't even make any contact with me at all and I can't help but think it actually is a big deal, if just that knowledge alone was enough to make him never want to speak to me again. It has also forced me to question that I may have to settle for something less than I normally would deserve. Maybe I will never be able to have it all, because I have an ostomy. It's a sad thought to consider.

I think one more week of hearing the "fuck him if it's a big deal to him" encouragements from my friends and I'll be back on track. It just sucks to feel vulnerable. That's how I feel right now and I don't like it one bit.

Oh well, here's to the Phillies playing a good Sunday night game and the Flyers pulling their shit together and winning tomorrow night. Those are the only men I should focus on for a while. Happy May!

Feeling better after Remicade

During my first stint on Remicade, from 2005 to 2008, I was never one of those people that needed their next infusion. Of course I diligently kept up with my bi-monthly appointments but it was never a big deal when that time came around. Even when I started the drug, I did not see a drastic improvement like many people do. Instead, my turn-around was a gradual process that occurred over three months.

I started the drug in August after a summer where I pretty much lived in the hospital. And if I wasn't in the hospital, I was at a doctors appointment, trying to convince my doctor that I didn't need to be hospitalized. And then days after my twenty-first birthday, I started Remicade during one of my hospitalizations. After everything I had heard about people experiencing drastic improvements on it, I was optimistic. Every hour I spent out of the bathroom, without pain, or a craving for McDonalds, had me thinking, "Is this it? Is this Remicade working?" I wanted it to help me so much that I attributed every little positive moment with the magic that Remicade had to be working.

But I have learned with this illness that you can not look at your symptoms on a day by day or hour by hour basis to judge how you are feeling. Sure, the way you are able to perform your day to day activities is certainly going to determine if you are happy with your treatment, but you have to step back and take account of how you have been feeling over a long period of time. I have to remind myself of this all the time.

For instance, I feel like whenever I have doctors appointments, I happen to feel well at the time. And even though my symptoms are terribly upsetting to me sometimes, I often forget just how much they interfere with my life, because I'm so damn happy those few times when they don't. This can be a problem.

But back to my point about Remicade. I remember throwing myself into my spring semester in 2006 not having a clue about what was going to happen. At that point it had been four months since I started Remicade and I was getting better. But it is one thing to feel well when you are sitting at home and always in your comfort zone, or near it. It is another to return to school, live with strangers, and not have your support system around. And once I got my semester started, something about it felt different. I enjoyed going to class, living with five other girls, and being on campus. My health only improved and Remicade gave me three years of the most amazing time of my life.

Looking back on that situation, I can see that getting my first infusion of Remicade was a turning point in my life.

Now I am in a situation I'm confused with. When I began Remicade again this year, it was like night and day. The differences were felt immediately. This was certainly a different reaction than the reaction I experienced back in '05. I guess I am just trying to make the point that everything is unpredictable. No one can predict this disease, the drugs to treat it, or how our bodies react.

I was feeling like garbage this past month and then bam! I got Remicade on Wednesday and I've felt great since. Now I don't know why the last infusion didn't seem to help me or why this one did. But I know that taken on a whole, there has been so much inconsistency with my symptoms, even since the start of Remicade again. Even though I am so grateful for the fact that I do have good days now,I think if I were transplanted back to my college life of '06, I wouldn't be able to thrive as I did then. Remicade just isn't doing the same things for me this time.

I guess I'm just trying to get myself ready for this colonoscopy on Thursday. There will be so much to think about and a lot of decisions to be made. Taken with my symptoms and blood work over the past several months, the extent of inflammation my doc sees in my colon will likely determine if we continue on this course or come up with a new plan. Either way, it's a scary thought to abandon Remicade. I know it sounds crazy but I feel like I have an emotional attachment to it just because of the things I was able to accomplish when I was in remission.

Sympathy fasting on Wednesday??? ANYONE?????

Oh well. This guy certainly won't be fasting with Aunt Ellen. But I think his mom would agree she could use a break!

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!