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You're Frustrating, Crohn's Disease, But I Can Thank You for One Thing

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Crohn’s, I hope you’re listening.

I’m a newlywed and have missed out on so much of my “honeymoon phase” with my husband. We still have yet to take a legitimate honeymoon. I’ve had to cancel travel plans. I’ve missed parties and celebrations. I had to temporarily give up work while I heal. I’ve gotten by with fibromyalgia since 2006, pushing through and resting when I needed to but more or less functioning and experiencing a “normal” life.

But what is “normal,” really?

Crohn’s, you’ve slapped so many labels on me, it’s hard to remember who I was before you. Your latest label for me is “Patient Zero” — the first documented patient to get mononucleosis while taking cimzia injections. So until we hear from the drug manufacturer, you cannot be treated and will continue to try and control me.

I hate what you’ve done to my energy, my inner light, my social life. I resent the fact you showed up just two months after I married my best friend, Adam.

I had to leave my own bridal shower for the ER. I’ve gone through two colonoscopies and several density scans. I’ve had countless blood tests, visits to Urgent Care and hours wasted in emergency rooms with no success. Through it all, I’ve discovered I have the most amazing support team of friends, family and, most important, a husband who’s given me strength and never once left my side. Because of his strength, spirit and love, you will never make him leave.

You make it so difficult for people to truly understand what a Crohn’s patient goes through. Some days are debilitating enough that it’s hard to make it from the bed to the couch without feeling winded. There are other days where I can push through and maybe get some housework done. Above all else, the simple task of eating (especially during a flare) has become laborsome. The level of pain I experience while trying to digest anything is incomparable to anything I’ve experienced on the pain spectrum. I love food, I love going out for special meals and I love trying new foods and flavors, but that is lost on me for now. You dictate that my breakfast, lunch and dinner is a bottle of Ensure in milk chocolate or vanilla.

Before you, I had all kinds of adventures: traveling, road trips, parties and concerts. When I left Los Angeles for Louisiana in 2011, I drove cross country all by myself and loved every second of it. While I’m thankful to have lived all over and to have had so many amazing experiences, I selfishly resent that I can’t do that anymore. No more spontaneity — everything has to be planned around how I’m feeling, my energy and pain levels, what food will be available and whether or not I can get to a bathroom.

Some days are more difficult than others to maintain a positive attitude. You’ve taxed my immune system, and I now have limitations I’ve never had before. At such a young age. My home life is key — you can’t take that from me. My husband and I enjoy watching movies and TV shows, playing games and laughing at each other. We also have Loki, our kitten who’s brought us both lots of snuggles and love in the face of this frustrating diagnosis. Until I can resume treatment, the love and support of those who truly care for me give me the strength to keep fighting until my next adventure.

For all this, I can thank you for helping me see what is truly important in this life and what not to take for granted.


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Originally published: March 13, 2015
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