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.

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.