Still Alive

Okay.  So I know I haven't updated in a very long time.  There were a couple of occasions where I felt like I could have said something but the past several months were marked with such unpredictability I couldn't say precisely where my life was headed.  Then I realized that I will never know for sure and that's exactly what my life is allowed to be at this moment.

When I say that a lot has happened in the last several months, it's an understatement.  I left a job I was extremely secure at and found a new job in downtown Philly.  I moved out on my own to an apartment not far from my work and began a new chapter in my life.  A new volume, perhaps.

It was a more difficult adjustment than I imagined to live completely on my own. I am lucky enough to be financially secure, but I wasn't prepared emotionally for what that type of drastic change would bring.  I felt like a million things happened at once and it was overwhelming, but I got through it. I am still getting through it.  I am working full-time, living on my own, paying my own bills, going to school full time, and still dealing with chronic illness. The truth is, no matter how healthy I am, I will always deal with Crohn's.  That will never change.

I should mention the small problems I've had with my ostomy.  I've been having a lotttttt of issues with my stoma and saw a surgeon at the University of Penn last month.  He recommended I make some changes, which I did, with little positive result.  I've basically been complaining about my stoma since I first had surgery in 2009 and none of my doctors have ever listened to me.  I was actually shocked that the surgeon at Penn looked at it and agreed, basically telling me, "They set you up for failure with this".  I could go into detail about what a stoma should look like and how it functions, but it's not important.  Many surgeons are reluctant to make such a minor operation to correct the mistake of another doctor, so it was impressive that he listened and sympathized with me. In his words, I have to live with this the rest of my life so I might as well have a stoma that functions exactly the way it should.  The next step will be to schedule a minor outpatient surgery in December or January when I am on break from school.  It's not a big deal at all and it won't require a huge recovery time like past surgeries.  

Otherwise, the last time I posted I talked about how I came off my anti-depressant, but recently I went back on another form.  It was hard to admit to myself that I still needed medicine, but I've been better since I started back on it and while I know it is not a permanent situation, it's what I need for right now.  I'm okay with that.  I went through so much to get my body healthy, it would be shameful to let my pride stand in the way of keeping my mind just as secure.  I know a lot of it has to do with the ostomy issues and feeling like I lost control again in the same way I was when I was really sick.  So I'm looking forward to getting all of this straightened out.

I think I also realized how active I need to keep my mind.  I took the summer off from school and felt like I made a lot of bad decisions in that time because I had too much idleness that I couldn't bear.  I need the structure of school, the discipline, the mental stimulation, and the tremendous challenges each of my courses brings.  While it's stressful, it's also what makes me tick.  I love learning.  I love being challenged.  And I love that every time I leave class I feel like I am a better person because of the knowledge I've gained.  Through school I've also become more confident in myself.  Throughout every job I've ever had, other people always believed in me more than I believed in myself.  Now that I am in a truly competitive academic environment, I understand how much this is true.  I am learning to accept the praise that accompanies my hard work.

Perhaps the most difficult lesson of the past year has been understanding that healthiness doesn't equate to happiness.  I always thought once that part of my life was restored then everything else would fall into place.  But life is a lot more work than that. And I'm willing to work my ass off for my piece of happiness.

Till next time...

2012 thus far

The New Year has come and gone.

I celebrated important milestones in the month of January, notably my one year surgery anniversary and the ten year anniversary of the day I was diagnosed with Crohns.  This staggering momento did not make me sad like it sometimes did in the past, but it just reminded me that I am healthy, I am alive, and I will be okay.

I will not say it was all smiles and happiness as 2012 came.  I was fortunate to be gifted with visits to some of my closest friends when they were on the east coast for the holidays and I had the freedom of expendable time to reconnect.  However, there is always something bittersweet about being surrounded by people that you love.  It’s like being in college when you were a little homesick and you looked forward to seeing your family but it was almost worse when you went back to school because the memory of the comforts of home were fresh and easily recalled.   That’s exactly how I felt towards the latter part of January when the reality of returning to school approached and I realized I would spend the next few months completely immersed in classes, all without the luxury of having close friends nearby.

In addition to all of this, one of my childhood friends lost his sister suddenly and it really started turning the wheels in my head.  I thought about a friend I lost four years ago who was the same age I am now.  These tragedies can’t help but make me think about time, purpose, and action.  We have so little time to determine how exactly we are going to occupy our lives and it is all dependent on being fearless.  I suppose we all draw on the relative tragedies in our lives as motivation to make the best of everything.  I guess that’s what the last year of my life has shown.

I don’t know what this year will bring but I know I will live it being as bold as reason will allow.  There are things I have thought about doing in the past that I thought were too big for me to attempt, however, I now truly believe that regret is worse than failure.  When you know someone who loses their life at a young age, you cannot believe anything else.

My hope is to continue to surround myself with positive, happy people.  I hope by this time next year I have an event-filled year to reflect on just as I did this year.  While I hope for these things I know I will have successes to take pride in simply because I have the attitude necessary to make positive change happen.  If I’m lucky, I might even inspire someone else.

Cheers.

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.

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!