On Sunday, March 4 I will be running....ok more like wogging ( jogging and walking when need) the half marathon at Hampton N.H. I know this is late in the game but I do not like to discuss the fact that I have an auto-immune disease called Crohn's/ Colitis. I’m not going to try and get your sympathy for me in order to try and get you to donate to the Crohn's and Colitis Foundation...because if you have known me, that is far from who I am…because of that fact this fundraiser will probably be up for 5 minutes before I take it down. What I will tell you is when I see a former student coming down the hallways crying her eyes out because she is not being allowed to do something as a result of the fact that she has Crohn's....well it breaks my heart, or when a colleague comes to me because she is worried that her young daughter has Crohn's or Colitis or a friends mom who struggled her whole life with it, or even when that amazing person who has been trying to help me get stronger every week is also having her own battle with the disease, I feel compelled to do something . No kid should have to deal with this debilitating, chronic disease with no cure in sight or even real explanations as to why our own systems literally wage war on themselves. Kids have enough to deal with these days. She shouldn't have to try to explain to her friends why two hours ago she made plans to go out and then an hour later cancel. She shouldn't have to explain how just getting out of bed is an accomplishment most days, she does not need to explain to them why her face looks like moon face, why she gained or lost a ton of weight in a matter of weeks. She shouldn’t have to explain that she has been in the hospital and no she is not faking it. ( kids are cruel sometimes) Why she needs to have her own bathroom, or next to it or know where everyone of them are in the world. ( ever need to know where all the bathrooms are ask a crohnie :)) She should not have to explain why she is so exhausted that even the simplest tasks are a struggle. She shouldn't have to explain why her hands are cramping up all the time or why she is so weak she can't walk let alone run. Or why she needs to go to the hospital yet again to get fluids or worse blood because she is losing so much and whatever else pumped into her because she just couldn't keep up with the disease. She shouldn't have to explain that no her stomach pains are not like your typical stomachache or throwing up like when you have the flu. That goes away...this is constant. She shouldn’t have to explain why she cant think straight or has foggy brain and is struggling to finish her work. ( she will get it done, it might take longer) She shouldn't have to explain why every 8 weeks she needs to go sit in a room for hours while she gets her infusion that is the only thing that is keeping her stable right now. She shouldn't have to explain that at some point that medicine is going to cause her hair to fall out completely. She shouldn't have to explain that at some point...that medicine...the one keep her going...the one that makes her feel like just maybe just maybe she can run 13 miles will eventually stop working and she will need to either find another drug or worse endure the surgeries. She is young she should be out enjoying her life with her friends and meeting new people and going on exciting adventures!!! I could go on and tell you how I myself spent almost 3 weeks in a hospital bed this past summer with plenty of time to think....when I could barely walk a lap around the hospital floor...( and you know I made daily goals to walk) or when I tried to go down the stairs alone because well I mean I needed to exercise...( and yes the nurses found me trying to hold planks in my roomJ ) .and well I fell right down the stairs because I was so weak. I decided when I got out I was going to continue trying to run as was my goal in the beginning of the year in order to help push others in races....but I was not sure this was going to happen …the unpredictability of being able to simply run is always a question up until that moment the run starts as that is how fast things can change. But well here I am....Its not going to be pretty....but I will try....and if for a brief moment it helps make others aware of what a horrible disease that no kid should go through well then I have accomplished more than I hoped. Don't tell me I can't or shouldn't because I might get sick again. I won't listen. I knew an amazing woman who had Ulcerative Colitis …and you know what I never knew how sick she was because was always smiling and always laughing. She hid it well…that woman was my grandmother and I know she would be beside herself knowing myself and others have to go through what she did. It is an invisible disease and many of us do just that.. we pretend we are ok and we for the most part don’t look sick. But don’t let that fool you. There is a fight going on inside and sometimes it wins and sometimes you do. So if you have any spare change lying around and you want to help so that student of mine or millions of others from having to go through what they do I would be forever grateful. The more awareness and help we get…the sooner they find a cure for it. I understand if you can’t donate and just know I appreciate you just listening. Thank you.
