Life and Ostomy Revision...

I didn't update for so long and now here I am updating twice in the span of a week.

I realized how fast the end of the year was coming and it motivated me to make an appointment to schedule surgery.  The thing about chronic illness is that you will have days that are perfect and for a second you think that everything is fine.  No matter how bad the bad days are, once you have a few good days linked together it seems to make you forget about all of the suffering, no matter how bad it was. Especially now that I am relatively healthy.  I seemed to overlook the little annoyances about my ostomy situation that filled my life with anxiety in the past couple of months just because they were nothing in comparison to what I have been through. But I realized recently that my life was again becoming abnormal in a different way, and I needed to address it for my mental and physical health.

I saw a new surgeon today at the University of Penn and it was an extremely emotional, difficult day.  I guess I didn't expect that I would need a surgery that would completely reopen me.  Because of how terrible my current ostomy is, they need to move it to the other side of my abdomen.  The first thing I thought of was that I'll have more scars and another adjustment to make in terms of how to manage my ostomy in general.  I'll also need at least a month to recover because of how extensive the surgery is.  Needless to say, considering I am healthy in terms of my disease, it was quite a shock to hear that I would need another big surgery to fix a seemingly minor problem.  The more I think about it though, the more I understand that I have made huge adjustments to deal with this "minor" problem just because it was preferable to anything I've experienced prior.  I'm just upset that the little normalcy in my life and relationships is being challenged, again.

I think the most frustrating part of it all is that I have always sought out the best doctors and surgeons.  When I started having problems with Crohn's I went to the closest GI but I was then referred to a "specialist".  From there I trusted someone to tell me who to see at one of the best hospitals in the country for dealing with my type of bowel disease.  While I still love the doctor I saw at the U of Maryland, after seeing the surgeon at Penn, I understand that no one listened to me as much as they should have.  That brings forth new feelings of doubt, feelings like I should have done more to press for what I thought I needed.  It makes me feel like I wouldn't have an ostomy if I had just pressured doctors more to do things differently.  But who am I to tell someone with a medical degree how they should treat me?  It just sucks to feel helpless.  It sucks that I have to have another surgery because in the opinion of my new surgeon, someone fucked up along the way.

None of my present problems can ever compare to what it felt like to be sick with Crohn's.  But I will never stop wondering what I could have done differently, especially now that it's being pointed out to me that my disease and surgeries weren't managed as well as they could have been.

I think about another Christmas spent recovering from surgery.  I think about the fact that most of the new people in my life won't really know why I am having surgery.  I think about how far I have come in accepting myself and feeling confident even though I am different.  I think about how much I miss my best friends who aren't in Philly to support me with their presence.  I know it could be worse and I am grateful for the health I do have.  I just wish that right now it could be different.

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.

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!

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!