7.29.2011

27

Next Sunday, the 7th, is my twenty-seventh birthday.

Two years ago I was turning twenty-five and I was 90 lbs and spending that quarter-century celebration by preparing for surgery to happen a week later. My eighteenth birthday I was a newbie to the Crohn's game and although I celebrated that occasion, I was much more sick than I was even aware of. In comparison to what my future with this disease would become, that summer before college when I became an adult; that was a walk in the park.

On my nineteenth birthday I was the opposite of the year before. I was on steroids again and I was puffy and I hated the way I looked. I guess in a way the extra weight made people think I was okay. I think that time was an extremely emotionally difficult time for me and it marked the first time in my life I ever thought about weight or my appearance. Imagine that--I made it through nineteen years as a woman never thinking twice about eating whatever the hell I wanted or wondering if I was wearing flattering clothes.

And then twenty came and it was more of the same. I took the medicines I was prescribed and I never actually knew if they were working. All I knew was that as long as I could get out of bed 75% of the time and live a somewhat productive life, then I would keep taking all twenty pills I was prescribed daily because at least I knew I was doing something to make myself better.

The year I turned twenty changed my life drastically and Crohn's picked up my life like a snow globe and shook that shit hard. I never comprehended until years later that I had actually come close to death and when my family later told me stories of the day my bowel perforated, I understood how serious this illness was. That year I also learned that I had been living my life with blinders on. I opened my eyes to the fact that I had become conditioned to life robotically. I walked to class and took notes and studied but I never did any of those things with enjoyment. I forged casual relationships with classmates I was forced to work with but I didn't actually make friends. My best friends were my mom, my dad, my brother, and my sister.

And as I have spoken of often on here, I will always remember my twenty-first birthday as when I started Remicade. There were no excursions to bars throughout the city for me. I spent my summer back and forth from Baltimore and my cocktail of choice was a saline drip filled with the medicine that would change my life and give me years of fulfillment where I was able to envision a life where Crohn's wasn't a topic I needed to discuss daily. That year I blew out my birthday candles with tears streaming down my face because no amount of joy involved in celebrating that special milestone could make me feel better. Only months after that first infusion was I able to feel the change that comes from a fulfilling life.

And honestly, I couldn't even tell you how I spent birthdays twenty-two through twenty-four. But I know I was healthy; very healthy. I also know, though, that two weeks after my twenty-third birthday I was in the hospital battling a bowel obstruction. That fact is one of the terrible things about Crohn's. That even when you are healthy, all it takes is scar tissue from your last surgery or an insufficiently chewed piece of food to send you bolting to the hospital. It is small in comparison to a Crohn's flare but it is still an awful reminder of how much this disease has the power to knock you on your ass when you least expect it. Even if it isn't the disease per se, there's always something else resulting from treatment or surgery that brings on new problems.

Unfortunately many of my memories of birthdays are tainted with this connection to my difficult times being sick. I also remember these times vividly because every time I've been in the hospital in the month of August and a nurse came to check my ID bracelet to confirm my information, there was always a 'happy birthday' exchange, followed by me laughing in my head at the cruelty of it all. I've gotten too many 'happy birthday' wishes from nurses and doctors over the years.

I will be turning twenty-seven next Sunday and although I might forget about future birthdays years from now, I will always remember this one. I am nowhere I thought I would be when I imagined myself this age but I also know that I have plenty of time to compensate for the past. Recently I have had a lot of frightening experiences resulting from moving on with my life with an ostomy. It has been terrifying to meet new people, date, and start a new job. But this is life. At least I am doing just that. I am living and as long as I am living I am going to be scared from time to time, ostomy or not.

So here's to me and the start of my first completely healthy year of adulthood. 27. HOLY CRAP.

7.18.2011

Back to work after Crohn's and turning 27

I haven't written in a few weeks so I figured today would be a great time to update and talk about some things that have been going on.

For starters, I received the results of my ACTH test and my adrenal functionality came back normal which was a very welcomed relief. Just the idea of having something else wrong with me and needing to see another specialist had me more worried than I let on. I think the bullshit that comes along with Crohn's is enough.

Otherwise, today is my last day watching my nephew full-time. I am a little bit sad because I feel like he is just changing so much every day and he's become this little awesomely amazing person whom I love more than words can say. He really makes me think that one day I might want to have one or two just like him, which is something I never thought I would consider for myself before he came into my life.

So tomorrow I start my first "real" job in almost 2 1/2 years. I can't believe it's been that long since I last worked and naturally I am pretty nervous and anxious to get a few days under my belt and become comfortable with my work place. I got a really sweet serving job at a restaurant about 15 minutes from my house and I got a really good vibe from the management and owners. Even though I haven't started I know it's going to be a place where I can feel comfortable to inform them about my ostomy, should I ever need to.

However, of course there is a lot of apprehension with just worrying about the little things, like, What am I gonna do if I have a leak in the middle of a shift or one of those few experiences where I am running around like crazy and all of the sudden I have a balloon on my stomach and I can't get to the bathroom. These are some of the reasons I was skeptical of taking on a restaurant job when I thought about foraying back into the work force, but I know that once I develop a routine I will no longer be stressed about ostomy-related issues. It's just one more hurdle I have to overcome but it pales in comparison to what I have already been through. The worst that can happen is that I realize I need to be in a different working environment. That concept is one that I didn't quite understand until recently. After all of the stress of my health problems I have learned that I don't need to stay at a job where I am unhappy and I am allowed to say "no" every once in a while.

Otherwise, I have been thinking a lot about turning twenty-seven next month and the fact that a week after my birthday will also be mine and Stevie's (the stoma) two-year anniversary. I can't believe either of those occasions will soon be reality. I have never been one to be sad about getting older and I don't feel that old but it makes me reflect a lot on where I thought I would be at this age and where I actually am. All things considered, I think there is a lot for me to be proud of which is why I really want to organize a night for me and my friends and family to get dinner downtown and do something out of the norm. I never had a twenty-first birthday and looking back, my eighteenth birthday wasn't exactly a healthy one either. In fact, all of my really healthy birthdays were spent in Maryland and I think it's about time to enjoy a night with some of the people I love the most. I think back to how awesome my birthday was last year and I can only imagine with how much better I feel that this year it can really be something special if I want it to be. It's not so much a celebration of my birthday as much as it is a way to share my health and happiness with everyone who helped me get to this point.

Anyways, those are just some ramblings on what is going on right now. I hope you are all enjoying your summer. Time to go eat some lunch with Braden.

7.02.2011

The 4th and my ACTH test

Yesterday I found myself sitting in the University of Maryland digestive health centers infusion room, occupying the same chair I sat in every time I received Remicade. However, this time I was undergoing an ACTH stimulation test. Earlier in the week I received a phone call from my GI doctor saying they wanted to "touch base with me". Now, because of the fact my next appointment isn't until August and I have been feeling fantastic, I knew something had to be wrong. After calling back, I learned that the results of my last blood work showed a deficiency in cortisol. Therefore I needed to come in soon and have the ACTH test done to assess the functionality of my adrenal glands.

I will try to explain this as easily as possible, and note that I myself am new to this, and I am not a doctor, so I could have things mixed up. Basically your adrenal glands are responsible for releasing cortisol. Cortisol is a steroid hormone and if you don't have enough of it you can feel like crap. The extent to which cortisol can affect ones well being is massive. It can affect your sleep habits, blood pressure, immune response, metabolism, mood, and the list goes on. Bottom line is, you don't want to have a problem with your cortisol levels or your adrenal glands.

After talking with the nurse practitioner who administered my test, I came to understand that there is indeed a connection between my past use of Prednisone (the steroid of Crohns patients) and this deficiency. In short, while I tapered off steroids after my last year-long stint, my body never adjusted to this change. It had gotten so used to the amount I was taking in medicine every day that it slowed down its own production and never compensated once I came off steroids.

While my possible adrenal issues are not to be taken lightly, I know that it is a treatable ailment. I also know that I don't feel like shit so it hasn't been too much of an emotional set back for me. It is just frightening to think about all of the long-term health problems that result from steroid use, which is such a form of relief that Crohn's patients so often turn to because they just want their life back, myself included. But it also makes me feel a little bit better about how long I resisted steroids after my last flare up even when doctors were pressuring me to take them. There are just so many complications that arise from steroid use that do not get discussed openly when doctors place you on them.

For now I have to wait for the results of the test and if there is some kind of functionality issue I will have to see an endocrinologist. I am really curious about this Crohn's and adrenal connection because I couldn't find too much about it online, although I have been assured that it is a fairly common issue for people who have been treated with high doses of Prednisone.

Anyway, just a small update. Today I will be making S'mores bars, a flag composed of jello, red white and blue cheesecake, and orzo pasta salad. This is all in preparation for my sisters July 3rd Independence Day party and I can not wait.

Hope everyone's 4th is filled with good food, drinks, family, and friends.

6.26.2011

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.

6.19.2011

I'm still alive...

I never thought the day would come but I am kind of tired of talking about Crohn's and being sick and my ostomy. I guess I am just at the point where it's so much a part of my life that I no longer have daily revelations or frustrations over the changes that have taken place. I have even stopped trying to reach out to other people or google this or that about ileostomy surgery. The bottom line is, I am at peace and mentally okay so there really is no need to compare myself to others because ultimately, everyone copes differently.

As per the past couple of posts, I really don't have much to say. I went on a job interview on Saturday at a local brewery/restaurant. I told myself after my last restaurant job that I would NEVER, EVER, UNDER ANY CIRCUMSTANCES, waitress again, but now I find myself trying to do just that. I think it had a lot to do with where I was in my life at the time health-wise that made my last experience what it was. I know that I have genuinely enjoyed my other serving jobs and the idea of working at a brewery has got me excited. I am looking forward to meeting new people and working in a fun environment. I will find out on Tuesday or Wednesday if I got the job.

Of course, along with thinking about entering the work-force again, I had myself a tad stressed. It is scary to think about working again and being responsible to someone other than my sister for showing up to do my job. The security of working for my family right now and the peace of mind associated with knowing they understand my limitations gives me incredible comfort. But I also know that since surgery, there hasn't been one day when I have been unable to watch my nephew. Really, when I think about it, there are no limitations. The only thing that can limit me is my attitude.

Well, with the job prospects on my plate and my fall classes registered for, it's looking like a lot is about to change really soon and I am incredibly excited, nervous, and anxious to see how everything plays out, all with good health on my side, of course.

6.05.2011

The past month, in photos.

Life is continuing down the awesome path that I am creating for myself. I feel incredibly in control and I am enjoying this present stagnant period before I begin school in the fall. I have had a lot of excitement in the past month involving weddings and visits from friends I don't normally see often. I have met a lot of new people, drank a lot of new alcoholic beverages, and appreciated that my body is allowing me to do so. I am trying desperately to run a half-marathon on my birthday, August 7th, in Providence, RI. I really think it would be an amazing way to celebrate my 27th birthday and also the perfect statement about the new chapter in my life I will begin. Twenty-seven is going to be my year and I want to start it with a bang. Hopefully I can get my body there in time, but I will be okay if I have to hold off until September when there is a Philly half-marathon. So consider telling you all of this my way of making myself accountable for following through now that I have said it aloud.

Anyway, I don't have much else to say so I will share some pictures from the past month of my life.



Natalie and I at the Phillies/Nationals game on May 5th.



Me, Anne, and Grace



Me and cutest baby ever



Me and Matt

That's all for now.

5.31.2011

Your ostomy is not the end of the world

This week I went on some ostomy message boards and forums because I am interested in starting some kind of support group in the Philly area that involves more than 70 year olds. I know there are young people out there who have an ostomy. Even the support groups for Crohn's and Colitis seem to have dwindled in the recent years. Certainly that kind of support group would have a bigger audience than simply ruling out people with ostomies. And I think I could be an example to others suffering from IBD that if you are considering going down the route I chose, it's not the end of the world.

I guess I get really discouraged with all of the negative postings on the internet. I understand that the likelihood of finding blogs like mine are fewer because the people turning to the internet are probably ones who don't have much support. And with an ostomy it's not like most people even know someone else who has one that they could talk to. Even if there is such a person in their social sphere, they may not even be aware of it.

I have become a firm believer in the notion that the rewards you get from your world are a direct result of what you are projecting from within. Right after surgery I was going out a lot socially and for the first time in years I felt confident and happy because I was healthy. It was pretty amazing how many new friends I made and the attention I got from boys, which is something I never really experienced in my life. I knew I was attracting people who were genuinely interested in talking to me because that's exactly how my mind worked when I would go out. I just wanted human interaction again. I wanted to feel the youth that I lost and the two precious years of my twenties that I spent sick.

I've also come to understand, through reading the sad stories of others with ostomies who haven't adjusted well, that I need to chose to project positivity when it comes to my ileostomy. Sure, I am allowed to bitch about a leaky appliance application or the fact that I can't wear a skin tight dress that I tried on the other day, but everyone around me knows that I regard my ostomy as something that brought me back to life. Without it, I am not sure where I would be.

If I explain my ostomy to a potential boyfriend or a curious friend, how are they supposed to accept it and understand it if I feel it is a horrible curse that is keeping me from being happy? The more I have read stories about people being "rejected" because of their ostomy, the more I understand this concept. Of course they are going to be rejected if they themselves can not accept it. This concept is universal when it comes to self-esteem. The bottom line is, until you are happy with yourself, ostomy or not, you will never attract the right person.

I certainly understand that everyone absorbs change differently. I know that having an ostomy isn't always a voluntary decision for some. Sometimes people go in for surgery and wake up with an ostomy they didn't know they were going to have. I feel almost fortunate that I have had a decade of misery with Crohn's because I can make a clear distinction between my life with Crohn's and this new, post-surgery life. For me, the differences are noticeable and therefore I can say with certainty that my ostomy has changed my life for the better. And maybe this is the factor that has made me able to adjust and cope. It just makes me sad to hear that some people feel crippled because of their ostomy.

The only advice I can offer is that life is so precious and uncertain. Whenever I start feeling the slightest bit of self-pity I just think about how much worse it could be. I've known too many people in their twenties who have been affected by heavy issues that have either taken their lives or changed them to an extent I can not even imagine. I feel fortunate to be alive and healthy even if it means I am just a little bit different than those around me.

Now to enjoy this beautiful day.