I won't settle, and neither should you

I'm sure it comes as no surprise that I am continuing to learn and grow with each day, week, and month that passes.  It might seem redundant at this point that I find something new to analyze because of my changing perspective.  In the past several months I learned a valuable lesson; I don't have to settle.  I mean this in every aspect of my life.  From this point forward, I am making a conscious effort not to settle.  I have been through too much shit to be content with mediocrity.

I think part of me assumed the first boy I met who I really liked, who could look me in the eye and tell me I was beautiful, that my ostomy didn't matter--somehow I thought that would be all I needed.  I thought if this one part of me was accepted then automatically that person must, by default, possess all of the other qualities I could ever possibly want in someone else.  Needless to say, I was off.

I'm not saying that in this particular instance I completely settled but I definitely overlooked major red flags because I felt like someone "got it" to an extent I wouldn't find elsewhere.  After years of having my health as a huge strain on every relationship in my life, I am not entirely disappointed in myself for this oversight.  I get it.  I understand why I was so content.

As hard as it is, I try to think of my own baggage on the same level as anyone else's hang-ups.  We all have issues that make being in a relationship challenging and scary.  But when it comes down to it, I am unusual.  I have no template to follow or friends to consult with who are in the same situation.  I just have to go with the flow and it's never the same each time around.  I think that part is the hardest.  The fact that it is never the same from person to person and it requires me to be on edge at the beginning of any relationship because I am trying to feel the other person out.

Sometimes the conversation comes easy and other times it's hard.  I have learned that easy doesn't always mean that the relationship is meant to be.  And sometimes it's simply harder because the stakes are higher.

Hard or easy, I am going to keep putting myself out there.  I don't have to settle just because I feel like I will never find someone.  If the past year is any indicator, I know that people are genuinely accepting, open-minded, and willing to learn.  In short, I am putting an end to settling.  So should you.

I Might Be Getting Old...

I am always intrigued to see the various search terms people use to find my blog.  It makes me feel good to know that my intent is coming through as randoms search the web and stumble upon my writing.  Sometimes the phrases people search are sad because I can imagine exactly what the person on the other end is feeling.  I have been there.  I have combed the web in times of desperation to research a drug or to find someone else who, at some point, felt what I was feeling and chose to put it out there for others to read.

That's just something random I was thinking about today.

Otherwise, life has been good (surprise!).  I had a few days last week where I physically felt run down to the point where I laid in bed for a few days and felt worry that I might be depressed or getting sick (in a non-Crohn's context) but this week I have felt back to normal with the exception of realizing that I am getting old.

Now, I don't mean "old" in the sense that I feel the crunch of my age creeping to my late twenties.  But I just can't hang like I used to.  What happened to the days of staying out way too late and drinking wine without hangovers?  I want those days back!  I might sound like an idiot for complaining about this but I now have to plan my social life around work and school, keeping in mind that I no longer have the ability to be productive unless I get a good night of (sober) sleep.

I guess it all just reinforces how lucky and happy and blessed I feel right now.  Youth is incredibly fleeting and it is to be spent living in a manner in which one day you can feel you have little regret about the past.  I can't imagine if I had spent any more time living the way I was just because I was scared about what my life would entail post-surgery.  I don't know why I have been wired this way--to be able to adapt and remain resilient--but I feel fortunate that I am and that thought is never far from my mind.

Otherwise, as you know from what I have been writing, the past couple of months have supplied me with endless experiences of reflection and learning.  I am adapting well to the changes in my life; my body, school, work, boys---all while knowing that each pang of stress and worry is only moving me closer to my goals.  I can't say it enough but I just feel damn good right now.  Hope you all do, too.

Letting Go and Moving On

A very frightening thing happened this past week. I had my last visit to my psychologist.

It has been almost two years since I started seeing a therapist. At first it was on a weekly basis, then bi-weekly, then monthly. I have often talked about the mental aspect of keeping myself healthy and recovering. I am certain that without this health crisis, I wouldn't need to see a psychologist. I am also certain that one way or another, I would have gotten myself to the place I am at now. However, I think it might have taken a lot longer and it definitely would have been more tumultuous getting there.

I have always been a mentally healthy person but I don't think one person is capable of maintaining a healthy mind under the particular stress I endured. At some point after I had my first ostomy surgery I was very much in limbo between living a life of a healthy looking person but still dealing with incredibly dibilitating symptoms. As I tried to resume parts of my normal life, it was evident that something needed to change but I wasn't capable of doing it on my own. A friend of my family was very aware of the physical and emotional pain I was in and recommended I talk to someone, and so I did.

The biggest reward I gained from therapy was that I had someone to hold me accountable for the things I wanted to do but was too scared to act on. Throughout my struggles with my doctors here in Philly, I always talked about how I wanted to go back to Maryland but I never did. The more I talked about it, the more I understood that the decision to return to a doctor I trusted was the only way I would be able to come to a satisfying conclusion about what decision to make. Therapy provided me with someone whom followed up with every single thought that came out of my mouth. I am not so certain I would have started working again or returned to school as soon as I did without this.

Before this last appointment it had been over two months since I saw my psychologist but she wanted to follow up with me one last time and officially "close" my case. It was emotional to return to her and know it would be the last time I would share such intimate details of my life presently. But, it was also an appointment less focused on the steps I needed to take to regain my life. Instead I told her about how great it felt to tell my boss about my past with Crohn's, the contentment and challenges I feel as a college student again, and the happiness of being able to share the past few months of my life with amazing people who have accepted me completely.

I know I will be okay without that safety net in my life. But, I am also grateful that I was open-minded enough to understand that sometimes I have to ask for help. I am certainly glad I did.

The end of summer...The beginning of everything else...

I think milestones and holidays have been markers for me understanding the passage of time. As I have talked about too much on here, I have a warped sense of time in that I feel like I need to pack so much action into small spaces just because I've never been used to having time. Also, no matter how hard I try, I will always feel like I am struggling to catch up to the rest of the world. However, I think this past year helped me to quell many of my fears because it was the first time in my adult life I knew I was going to be fine so I was free to dream as big as I wanted.

The end of this summer is just another reminder that time will always pass too quickly regardless of me feeling like I'm living every second of it or that I am wasting it away. I got to do a lot of fun things this summer and although I feel like it flew by, I have so many memories that I know I can look back on with a happy heart because they were done without thought as to wondering if I would be healthy enough to carry them out. I got to go to weddings, visit friends in Maryland, make new friends, host my friends here in Philly, and start a new job that has added to my livelihood. I hope every summer from now on can be filled with so much activity.

With the craziness of the hurricane, I have been given an extra week to enjoy myself before grad school starts. Just walking around on campus today and beginning my readings, I am incredibly excited and I feel for the first time in a long time that things are falling into place as a direct result of my decisions. As I delve into reading for school I am realizing even more how much my illness directed me towards my field of study. I still have fears and worries but I know I am ready to face them head on.

In my social life and work life I can see how differently I judge others. I have become extremely opinionated, but open-minded. The fact that I confided in my co-worker about my health so quickly initially boggled my mind but then I realized it made perfect sense with the person I have become. I am ready for it all; to open up, to be challenged, to hurt, to learn. I will never stop learning from Crohn's because it will always be a part of me. It is a huge story of many chapters of my life but as the pages keep turning and I write new memories, it will no longer control the outcome of the decisions I make.

I can't help but think back to what my dad used to tell me all the time when I was sick. He would say, "This will not define your life," and at the time I couldn't imagine a day where it didn't. I understand what he was saying but I have also come to understand that it has very much defined my life exactly opposite of the way he feared it would negatively consume me. What a great feeling to come full-circle and say that aloud. To say that something you never wanted to define you has actually come to add a sense of self-awareness that would never have been possible otherwise; To say that yes, I am okay with Crohn's playing a role in how my life is played out. It is truly a full, exciting feeling and I am happy I have all of you to share it with.

Work, School, Life, and My Ostomy (DUH)

Since starting my new job, life has been hectic to say the least. I have been working an insane amount of hours with little sleep and a lot of socializing in between. I guess I didn't realize how the end of the summer was creeping up and there were so many things I wanted to do before it came to an end. The past two weeks I have been pushing myself hard, but in amazing ways. I know it sounds ridiculous but it feels great to ignore every instinct to refrain from excess in all of my vices yet still somehow remain able to function. For instance, I worked from 7 am until 10 pm tonight after sleeping only two hours last night and the little fatigue I felt all day was nothing in comparison to the physical and mental exhaustion of the most mundane activities performed under the restraints of Crohn's. I know it's silly to think, "Wow I can abuse my body and it doesn't shut down", but the memories and experiences I am having are worth more than anyone can imagine. I am just glad I can finally work hard and play hard. That was never an option for me before.

I've also met some amazing people, although I think I downplay it a lot because I don't want everyone around me to see how invested I am in a relationship. There's always that fear of rejection and I don't think any amount of confidence can change that. Sometimes I wish my ostomy was the first thing someone learned about me just so it could be out in the open and then other times I truly believe that once someone gets to know me there is nothing else they could learn that would change their opinion. I think too often I let myself get to the point where I feel like I've gone too long without talking about it and that somehow that person is going to be upset with me for not discussing it sooner. I need to learn to push past these feelings of self-doubt rather than retreat.

Strangely enough, it was telling one of my co-workers about my ostomy that felt really great to me. I barely know this girl but I know enough to understand she is intelligent and mature, which is why I felt so comfortable talking about it. Long story short the conversation came up because she knew someone with Crohn's who was very ill and thinking about having ostomy surgery. There was no way, at that point, for me to keep my mouth closed and once I talked about it I felt relieved and empowered. I can't really explain why telling a girl I've known for 3 weeks made me feel this way but I am glad I did. I think most of all I enjoy that people are educated a bit on what exactly an ostomy entails and that they change their perception of what I am supposed to look like because I have one. I can't tell you how many times I hear, "I don't understand. You don't even see it. Where is it!?"

Sometimes I am dumbfounded at how much action I can pack into one month and how much my life changes in that short amount of time. In just a week I will be starting graduate school and I have a feeling much more will be evolving soon. I am twenty-seven and I am happy and healthy and I have accomplished so much in the past year that I can not wait to see what is still ahead for me. Somehow even though I am incredibly content, I know there is still something better to come. Stay tuned, friends.

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.

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.