Happy 10 Years, Crohn’s Disease! We’ve made it to the double digits and man has it been filled with a lot of tears, tribulations, needles, triumphs, pain, blood, hospitals, frustrations, laughter (#poopjokes), and some overall maturity and spiritual growth.
While I honestly don’t remember the exact date in August I was diagnosed with Crohn’s Disease, I know it was in early August because I was just about to head to my high school senior beach trip. I was seventeen years old, heading into my final year at the school I had attended since kindergarten, applying to colleges, and wondering what my high school friends/boyfriend thought about the whole diagnosis…truth. You get told you have something with the word “disease” followed by: it’s chronic, you’ll have this forever, there is no cure, you can go into remission, etc, etc. and all you can think about is “WHAT?!?!”
There has been a lot of trial and error in these last 10 years. A lot of patience learned and lost. A lot of tears. A lot of pain, more pain than I would ever wish on anyone. A lot of unwanted surgeries and procedures. A lot of hilarious stories too, a lot of laughter, a hell of a lot of learning to NEVER take myself too seriously and so so so much thankfulness that God gifted me with a sense of humor. There has been a lot of learning about myself and lot of maturing (beyond my years). A lot of doctors. A lot of grace. And a lot of FAITH.
There is so much going through my head when I reflect over the past 10 years. So much in my life has changed – this disease has literally grown with me. I’ve addressed Crohn’s Disease a couple of times on this blog (here and here) and so has Elise (here, here, here), but I am totally aware that my posts kind of came to a stop. Here’s why: Crohn’s Disease does not define me. Yes, it’s a BIG part of me. Yes, it’s something that you’ll learn about me. But it 1000000% is not something I lead with. I don’t want to identify with my disease. It is a part of me (and I acknowledge it is a big part) but I am super protective to not have it as a shadow. Basically, I don’t want to be known as that girl with Crohn’s or have the whole “did you hear her story” phenomena about it. While my story does inspire and does share the gospel, it’s super personal and I just don’t feel comfortable sharing it in certain settings right now. To me, it can sometimes feel like I’m making a spectacle or gaining attention for a very dramatic and difficult time in my life, and it’s just not me to seek any sort of “Im so sorry this happened to you!” attention…even along with the “you’re an inspiration!” words. While those comments mean the world to me and more – I guess I get kind of shy and awkward with the attention I receive for it??? I also would NEVER want people to think that I am using my disease to seek any sort of attention/pity/etc. It all just makes me feel kind of weird. But, I am weird, sooo there’s that! All in all, I have to feel super “safe” to share the nitty gritty. Get me in a small group with Bible study, and I’ll go there. However, putting it all out in the world just doesn’t settle well in my heart. You’ll see glimpses of Crohn’s, trust me, but the legit soap opera of my surgical/near-death complications just aren’t ready to come all out. Maybe writing it down would be such a personal way of reliving it that it’s still too raw…but…I appreciate your patience and understanding!
With all of that said, please know I walk around this world super thankful for the whole second chance I feel like God has given me. I make a million and one mistakes, but I am always centered and grounded by the 7-inch-ish scar on my belly. The fear I’ve faced is washed away when I look at my precious daughter. The memories of my darkest days are so deep in my head and heart, but that is where they stay for the most part. It has taken me 10 years to fully feel comfortable to “own” this portion of my life and I owe a great deal of my happiness and confidence to my husband who has been with me during my darkest hours and has never stopped holding me up and pushing me to be better.
Getting this diagnosis at 17 was embarrassing at the time. People just looked at me and thought, “Oh so she has diarrhea all of the time?” No. Then I went on to college and I had some girlfriends use my disease as an excuse for NOT showing up to class without even telling me until after the fact (insert major eye roll on my end). I just felt at times like an experiment. And now, I am 27, yes only 27, and have learned more in my life than most people have at 40. My mom and Mimi, my sister and my aunts, my dad, and stepparents, etc. etc. can all vouch for that. I, more than anyone, believe that age is just a number for the most part…a person can be forced to grow up by some sort of life change and I consider myself one of those people.
I am much more mature than the number of years I am. In fact, one of my absolute biggest pet peeves is when I hear: “you’re still soooo young” or “just you wait until you’re X” or “you’re SO much younger than me” things like that make me want to scream. I’m like, yes, year-wise I am younger, but please don’t insult me by putting me in a box of age. I am 3 years younger than my husband – and he would jokingly say that he “robbed the cradle,” yet we are MARRIED and have a baby together, so it’s not that much of an age gap – ha! My sister and I are 2 years and 11 months apart and are the best of friends, and I’ve adopted many of her friends as my own through the years – and it’s not weird. Also, while I am on my soapbox, can I just say when you get to a certain point in life, it’s your LIFE STAGE that brings you together in friendship/circumstance/etc. NOT your age. Anyway, off topic, but DANG I’ve been super sensitive/easily annoyed by this whole ageism-ish I feel like I face. At 17 I was diagnosed with a chronic diesease. At 18-21 I was driving home from college to go to the hospital to get an IV infusion of my medication every 6-8 weeks. At 22 I was in the hospital for a month having to get foot and a half of my intestine removed and landing with a ton of complications – and that’s putting it lightly. At 23 I had just had my wound vac taken off 3 months prior and was adjusting to life with a new battle scar. I then got engaged. At 24 I married the love of my life. At 25 I got pregnant! 2 weeks and 2 days shy of turning 26 I had my angel girl! At 27 I am healthy and happy and thankful and prayerful I can continue on the road of remission. That’s my life and I am so thankful and proud of it. But, please don’t judge a book by its cover or a person by their age – can I get an amen?!?!
Okay, I really am stepping off of my soapbox now. Promise! Life with Crohn’s is frustrating. There are many days I truly forget about this disease for which I am thankful because that means I am feeling great! To maintain my health, my medication is a shot I get in my thigh every 2 weeks. Spyros learned how to give me my injection while we lived in NYC, and he’s the best nurse I’ve ever had :). I know my limits food wise and I know how to listen to my body in such an intense way it’s almost spiritual. Seriously, it’s kind of weird how attune I am with my body. But even in the heart of being in remission, I have bad days. In the summertime when I see everyone in their bikinis with their beautiful non-scarred tummies, I get sad. When I catch a glimpse in the mirror, I shudder a little bit sometimes. When I think about the potential unknown side effects of my medications, I get scared and can go down a “what if” rabbit hole. But when I get these thoughts I say out loud something my Mimi taught me at a young age. I say ,”Get thee behind me.” These thoughts from the enemy can be corrupting, and I refuse to let them get into my head and heart, but it is a conscience effort to do so. A few verses that have brought me so much comfort and peace throughout these past ten years have been: Isaiah 41:10, Romans 5:3-5, Romans 8:28, Matthew 6:34 and James 1:2-4.
I have learned and I truly believe that God never gives us more than we can handle. But Lord have mercy there have been plenty of days where I haven’t been able to handle anymore (and I still have those days just being a mama – haha). Some of my most sacred moments have been spent lying alone in a hospital room at 2 o’clock in the morning, deeply in pain and deeply in conversation with Christ. He never left me once during my struggles and I can say with all of my heart I would go through all of the pain again to feel that intense and secure love from God.
10 years of Crohn’s! Tears are welling up in my eyes because you know what, I am so proud of ME. I’ve handled this disease with a lot of grace and a lot of laughter. I may never know or understand why I have this chronic disease, but I will live it out proudly knowing that God has a marvelous plan for me in all aspects of this beautiful but messy life :).
Sorry for the super filtered and overly blurry pictures…Instagram was super new and I loved a good filter to hide my steroid face back then – also hospital lighting is BRUTAL 🙂 – ha!!! Cheers to 10 years Crohn’s Disease, I sure don’t like you one bit but I know you’re sticking around…don’t worry, I 100% plan to continue keeping you at a distance!