Crohn’s and Colitis Awareness Week
I’ve been sick since June of 2007. I was diagnosed with Crohn’s Disease (after several misdiagnoses and the almost dead-part) in April of 2008. It’s been 4, almost 5 years now living with Crohn’s. It’s been years of grieving what Crohn’s has taken from me, what it’s put my family and myself through.
The drugs are almost the worst part. 6mp and Prednisone have been the worst for me, although the multiple allergic reactions to Humira come close. 6mp and Pred alone caused moonface, hair-loss, weight gain/loss, joint pain and inflammation, migraines, nose bleeds, paranoia and mood swings, and PAIN. (I’m currently only on Remicade, I am now refusing Prednisone, PERIOD)
I looked at it like this: So I have this life long disease, that makes me feel like someone is chewing their way out of my stomach, from the inside, with a pack of rabid dogs. So while my weight yo-yos 40-60lbs I have to take these drugs that make me even MORE miserable in an attempt to go into remission? Greeeat.
The only other thing that really got to me, is when I would have really bad days, days where getting out of bed was a challenge, it really hurt me inside to know that I could be in the forest preserve with my daughter, or working on my house, or hell, anything. The bad days were brutal. They would get me in such a funk, I’d think about how if I didn’t have Crohn’s I could be such a better mother, girlfriend, employee.
I focused so long on the things I had “lost”, the things I was “missing out on”, the pain I was in, that I missed the things that living with Crohn’s Disease has given me. Sure, I have to deal with being sick and the drugs and doctors, but you know what, it’s given me a different perspective.
It took me a few years, but you know what? I finally realized that I’m a better person because of my battle with Crohns. I’ve learned that I can still be a great mother even if we don’t play outside EVERY day, I’ve learned that my daughter is very understanding and bright, and her experience with me getting sick (and the hospital stays), has helped her understand another sick little girl and befriend her.
My being sick has forced me to rely on my family and friends, even though it’s against my nature, and in return I learned how much the people I care about, care about me, and how lucky I am to have the people I surround myself with.
I have learned that my self worth is not based on how many days I feel like utter crap, but how many days I don’t let it get me down. How many good days I have, and how many days I go out and do what I do regardless because FUCK CROHNS.
Because of this disease, I learned that I can have a relationship with a very understanding man who will stand by me and support me through every step I have to deal with, a forced step or not. Because of this disease, I’ve learned that it’s okay to lean on people and let them know I hurt. It’s okay not to be super woman all the time.
Most importantly, with this disease, I’ve learned how strong I really am. There have been some moments where I have been terrified, where I didn’t want to face it, where I wanted to trade in my body on the black market. Lets face it, I’m going to have more of those days, it’s inevitable. I’ve learned that I’m strong enough to get through it, make it. There is a difference between Living Life and Just Living, and I refuse to miss out. This disease has taught me that I can make it through and enjoy life regardless.
I’ve come a long way with this disease, as many of my “Crohnies” have. I’m proud of us, I’m happy to see awareness of both Crohns and UC spreading. Now maybe one day we can find a cure. In the meantime, I’ll be right here. :)