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Showing posts from June, 2016

Prednisone, Surgeries, Vegas, Oh My!

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I like to think of myself as a holistic person. If there is a natural remedy for an issue I experience, I prefer that to any pharmaceutical drug on the market. Unfortunately, my disease has progressed so rapidly and severely that I have been left with no choice but to jump on the dreaded bandwagon of the despised drug that is Prednisone.

Back in 2012, I tried the steroid for the first time in an attempt to combat a flare. I resisted Prednisone up until that point because of all the side effects and horror stories I had read online and in medical journals: insomnia, agitation, increased sweating, acne, insatiable hunger, weight gain, moon face, mood changes, dry skin, decreased immunity, and the list goes on. My pediatric gastroenterologist at that time was insistent on the idea of me giving the drug a chance, as it is the first line of defense when a Crohn’s Disease patient is experiencing increased disease activity.

Hesitantly, I agreed to start out on a moderate dose of 40mg daily. L…

Dear Lady in the Grocery Store

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Dear Lady in the Grocery Store,

I’m not sure if you remember, but six years ago you told me I was beautiful. You approached me in the produce isle with a smile and commented generously on my complexion and features. You went out of your way to share kind words, and I am forever thankful for that brief moment we exchanged. Earlier that day I had been released from my first hospital stay due to complications of my newly-diagnosed Crohn’s Disease. At the lowest point in my life, I was struggling to keep a smile on my face and hope in my heart. I had not yet processed the unexpected turn my life was about to take because of my illness; I was focused so intensely on my pain and suffering that I had not entertained a positive thought in weeks. I felt like a zombie… actually, I didn’t really feel anything at all. I was numb to life around me. My mind was consumed with new medical terms and names for medications accompanied by so many side effects that the thought of it kept me up at night. I wa…

Current Maintenance Therapies

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Throughout my time with Crohn’s Disease, I have tried every class of medication: 5-ASA agents, steroids, antibiotics, immunomodulators, and biologic therapies. When my disease was mild, I even went a year or so without any medication at all thanks to good health and diet habits. As much as I do not like being on medication, many of which come with extreme side effects, I have no other choice at this point. Because my disease is now categorized as severe (wow, sounds so serious), I have no other option but to take medication to achieve remission and avoid flare-ups.             The last resort treatment regimen for a person with Crohn’s Disease is typically a biologic therapy. In June of 2015, I started Remicade infusions after a severe flare that resulted in a week-long hospitalization. I would go to the infusion center at the hospital every few weeks and sit as an IV pumped the drug into my body. This worked pretty well for a few months until my body became unresponsive. I was thrown…

How my Disease Helped me to Understand what is Important

When I was first diagnosed with Crohn’s Disease, I was sixteen years old. Although I had been experiencing symptoms for years, there was no definitive diagnosis until my junior year in high school. Just like any other teenage girl, I struggled to fit in and find my place in the world; little did I know the impact that my disease would have on that process. Figuring out who you are is hard enough on its own, let alone when you throw chronic illness into the mix. Anyone with an autoimmune disease knows that it consumes you, whether you consciously allow for it or not. Not a single day has passed since my diagnosis that I have not been forced to remember that I am sick. The constant reminders, some days big and some days small, get into your head and change the way you think about yourself, others and life in general. Teen years into the early twenties are crucial to developing a mindset that will stick with you for the rest of your life. I am aware that who I am today is largely a resul…

Links to recent publications

http://themighty.com/2016/06/crohns-disease-why-i-cant-go-out-in-my-20s/
http://themighty.com/2016/06/how-to-tell-people-about-crohns-disease/

Look for articles published by xoJane.com and Independent coming soon!

Why Living in the Moment is Only Fun when it's a Choice

People say that as a young adult, you should be living in the moment: not having a care in the world, taking advantage of any opportunity that pops up, acting spontaneously. This all sounds like fun until the idea is no longer a suggestion but an imposed requirement. Not knowing what tomorrow brings and being forced to live in the moment are among the scariest aspects of chronic illness. For someone who is a planner, I have been obligated to take my life one day at a time more often than I appreciate. Having Crohn’s Disease, I have learned the hard way that chronic illness is unruly and unpredictable by nature. Periods of remission are followed by unannounced and rapidly-worsening periods of active disease which have the ability to flip your world upside down in the blink of an eye. One day I may be perfectly fine, exercising, attending class, doing everyday things. The next day my symptoms could develop into what is the beginning of a flare-up of my disease. This sure doesn’t sound l…

I'm Fine: Using Your Battles as a Weapon

“I’m fine.” This may be my most-frequented response to any inquiry regarding my well-being. Being chronically ill, I get asked about my health a lot, particularly by my family. It has gotten to the point where if I use the line with my mom, she gets annoyed because she knows I am not being entirely truthful or informative. Those two words have become so second nature and automatic to me that I don’t even think about what they mean; what does it mean to be fine? I think about my life in a broader sense when answering the question “how are you feeling?” or “how are you doing?” I consider not just my physical and emotional being at that moment in time, but instead over the course of my life. All things considered, I am always fine. I will always respond that way, even though it may not answer my mom’s question directly. In my overly-optimistic perspective on life, I believe that things could always be worse. Okay, I have an incurable disease, but what about the girl in town that just was …

Stages of a Chronic Illness

If everything happens for a reason, I am way overdue for an explanation. For years I have struggled with understanding why I was given a disease. In the beginning, I went through the common phase of denial, pretty much rejecting the idea I had anything wrong with me. That didn’t work out very well because it is hard to deny you’re in rough shape when you’ve been in and out of the hospital for a few months, taking fistfuls of medications daily. Next I moved into the isolation phase. This stage was particularly damaging to my mental health because I went months without talking to anyone unless it was out of necessity. At this time I was in high school and spent all of my time studying or researching Crohn’s Disease and related topics on the internet. I even pushed my family away; I wasn’t myself… I was having trouble figuring out who myself even was. I never dealt with a stage of anger because my feelings mostly manifested as sadness. In general, I do not get angry but rather upset. Ins…

Picky Eating: Food for Crohn's Disease

Around the same time I was diagnosed with Crohn’s Disease, I started paying extremely close attention to my diet and exercise routine. This was a bit of a coincidence because it wasn’t until eight months after my diagnosis I had my first flare and realized the severity of my disease. Luckily, by that time I had already established a health-oriented lifestyle. I was always active in my younger years, playing sports and dancing, and my family kept healthy food in the house, but it wasn’t until I did research on my own that I truly became passionate about maintaining a healthy lifestyle. The hardest part about making healthy choices with Crohn’s Disease is the food-based restrictions of the illness. Every person is different, so it takes a great deal of trial and error to determine what foods or activities work best for each person. In terms of diet, I eat almost 100% clean, natural, unprocessed foods. A problem with this is that many Crohn’s patients have a difficult time with raw fruit…

Wait, You're Sick?

One way to let others know you are sick is by sharing a link to your blog that details your disease (surprise, Facebook friends that I rarely talk to in person!). Just kidding. In all seriousness, letting others know for the first time about your illness can be an extremely difficult task. With time, I have learned what works and what does not work, depending on the person and situation. Sometimes I am met with a blank response or a referral to a friend’s mom’s brother-in-law who has a neighbor with Crohn’s Disease. Other times, the person I am telling reveals that they are pretty familiar with my disease because it has affected them in a more direct way. For some reason, I tend to get very emotional when someone can relate to me on a personal level; hearing a story that is similar to my own experience is touching (and I’m not an emotional person, so I really mean it). No matter what the end result of the conversation is, starting the dialogue is the hardest part. If only there was a …

Gut Honest: Who Am I?

I am a 5’9”, attractive, intelligent, privileged twenty-one-year-old. I play guitar, sing, write songs, am a photographer, get 4.0 GPAs, am earning my master's degree, and have a magnificent family. I have many talents, one of my greatest being the ability to push others away so they remain outsiders. From the perspective of an outsider, I am not defective, disadvantaged or suffering. I portray an image of maturity, composure and perfection that is a somewhat duping illusion to distract from the reality that quite literally destroys me on the inside. I manipulate the phrase ‘perception is reality’ to my benefit in order to convince others I am always fine. I am not always fine. And as I grow older and wiser with each tragedy and triumph in my life, I realize that is okay. I have a chronic disease that causes me pain, embarrassment, exhaustion and setback, but it also has made me the person I am today and continues to make me stronger. I was previously unaware that the stages of gr…

Thank Goodness for the Digital Age

I cannot imagine living in a time without immediate access to information, courtesy of the internet. Most of the knowledge I have acquired, specifically about my disease, and health and medicine in general, has been gathered from the World Wide Web. Whenever I have a question or need to research medicines, conditions or symptoms, my first consultation involves a quick Google or database search. An even larger saving grace is the online community of other patients suffering from the same illness as I am. I remember when I was diagnosed with Crohn’s Disease at age sixteen, the first thing I did was search anything and everything related to the illness online. This led me to a plentiful collection of online forums, support websites, group chats, and even iPhone apps designed specifically for people like me. There is nothing worse than feeling like you don’t belong, and by becoming a part of these online communities, I feel as if people understand me in a way that not many others can. The …