Invisible Illness Week

I have been writing this post for the entire week and have deleted it numerous times. I ended up in tears yesterday and deleted again. Now after reading The Great Bowel Movements blog post I have the courage and am basically going to tag off of their post.  

Invisible illness week affects millions of people and its not only Crohn's disease.  About 96% of illnesses are invisible. No visible signs and no assistive device used. That is an astronomical number if you think about it and that number might even include you. 

My roller coaster ride.......

As I think about all my friends, colleagues, doctors, family, people I meet at soccer games.... I really wish you knew alot of this about me. Some of you do or hope you do and others are supportive even without knowing about this roller coaster ride. I am currently on that low point of the roller coaster but can't wait to get to the top of the hill ASAP. I have been at this bottom for way to long. 

I am a talker and like to talk all the time especially smile.  Over the last year I have talked more about my Crohn's disease then I have since I was 14 years old newly diagnosed patient.  I have accepted this is my life!! I will endure this daily and it is how I look at it which will make me stronger. I wonder if one day I will be able to walk up to someone and say I have Crohn's and they just get it?? That's why I continue to raise money for a cure and continue to talk on top of the highest mountain 

What I wish I could say everyday. 

It's not just a pooping disease. Of course that's how it's classified for most people when they talk about it but it is so much more. It's so complicated. I will never be the same person... Each day my faith and strength is tested and its how I look at it that gets me thru. I'm not an attention seeking person or seeking a pity party. I just want people to understand its so much more complicated than you could ever imagine. Faith is something that I need to continue to hold on to and dig deeper into my faith. 

Food vs. Me

There is many days that I really consider not eating because I know that it will cause pain or I will be in the bathroom within 15 minutes of a meal. It is so hard to go to a family gathering or out to supper with friends or Brian and feel so embarrassed when you have to rush to the bathroom during the meal of there is 1 bathroom at the house and its going to smell awful when you leave.  That is a thought in my head daily. Or the time when you are in the 2 stall work bathroom and pray you can hold it long enough until the next person leaves because you know they can see your AWESOME shoes and will know its you. Food shouldn't be an enemy. It should be a conversation piece or a relaxing visit with friends.  There is so much urgency with this and it can be so embarrassing when you could possibly have an accident at age 29.... My 2 year old should be the one having accidents. Hence why I carry an extra pair of underwear in my purse and wet wipes just like my toddler has in his diaper bag. 

Stress

Stress causes flare ups and I hate stress!! However stress is extremely hard to avoid as a human being. I will continue to try to avoid it but as a motivated and loving challenge young adult it's hard to do that. I will push thru everyday. I will continue to be a beautiful wife, an awesome mother, a crazy friend, a successful career woman and a wonderful person. 

I want you to know precisely what “chronic illness” means. I have copied this next section word for word from The Great Bowel Movement because I couldn't have wrote it any better. It means there is no cure. There is no end. We have no choice but to deal. And when that gets too hard, we dig deeper and find strength we didn’t know we had, then we deal some more. There literally is no choice. When you think you’re out of strength, you find more. The human spirit can prove amazing.

Think of the hardest athletic event you can. A marathon? An Ironman triathlon? The Tour de France? Sailing around the world? All of these have a finish line, a limit, a time period that eventually allows you to say, “I did it, I can rest now”. Chronic illness is harder than all of those. We can’t drop out of this race. We have no coach. No one handing us a medal. We have no off season. We just. keep. fighting. You’re not used to this. You get a cold and you know it’s going to be over in 2 weeks. You feel horrible, but each day you feel a little bit better, you focus a little less on your discomfort and a little more on being normal. You have an understanding that this is going to end, like it always does. You break your leg. You can’t walk for a summer. You give up your summer activities, you can’t go swimming, you get strange tan lines. But each week, you get closer to getting out of your cast. And once you’re out, you get stronger and stronger. Forget everything you know about sickness and pain. You can’t comprehend disease with no end until you’ve lived it, and when, as a patient, this concept hits you, it hits hard.

But because of this, because we are left in this situation without an opt-out button, we become so strong. Stronger than we ever imagined, and wiser too. We don’t associate our condition with weakness (although this is real, it’s not lasting). We associate it with resilience, strength, empowerment. The innate knowledge that we have it in us to survive, and we know because we’ve faced it.

We call on the quote “You never know how strong you are until being strong is the only choice you have”, and understand it is truer than true, for us. Not even endurance athletes can claim this. They don’t know strength like we do, because pushing through is not an event for us- it is life. Through it all, we keep a humble sense of pride and accomplishment. We don’t get a medal or our picture in the paper, but we get a stronger sense of ourselves, and maybe even the chance to inspire the next person. And all this is something that I wouldn’t trade for anything. (www.thegreatbowelmovement.org) 

My children

There is so many days that I feel guilty that my children have to endure this with me. I feel very guilty at times that I chose to have 3 beautiful children and give them the risk of developing this ugly disease.  It's selfish in a way but I wouldn't change anything with them. I pray daily that they remain healthy and understand that I love them with my whole heart and that they don't just view me as a sick mommy but a beautiful, strong, fun mommy who has an ugly tummy with some scars. 

I am learning to live everyday by the minute because you really never know what's next. I have an amazing purpose and drive with life that others aren't blessed with.  I am a better person because if this disease. I know God has a purpose and he certainly didn't give me the easy path. 

Always know that you can ask me about my Crohn's if you have questions or just don't understand. I want you to be inspired by me, to try new challenges because you never know what tomorrow brings. 

I want you to continue to see the drive and passion I have around finding a cure for this invisible illness. I am optimistic that there will be one some day and confident that God gave me this for a reason.