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9 Months

Posted May 20 2009 1:20pm

I received word last week that I was accepted as a Camp Counselor into the CCFA’s Camp Oasis! An honor and a thrill to be a part of something that helps young people with IBD. A week away camp in Waupeca, WI, kids from 7-17 will be in a safe and pleasant environment, with 24 hour medical staff on site, and all the wild and crazy activities camp has to offer! I believe this is a wonderful opportunity for the youth afflicted with IBD to meet kindred spirits. It is comforting to know that one is not alone in their suffering; it makes the battle easier to fight. There is certainly strength in numbers and I cannot wait to be a part of it!

Please keep a dear friend of mine in your thoughts. He is but nine years old and enduring a nasty flare-up of UC in the hospital. Out of respect for the family I am not mentioning names. He is supposed to start Remicade treatment on Monday. Keep your fingers crossed for this brave young man and his wonderful mother…this is why I will never stop working toward raising awareness for Crohn’s and Colitis. I hate to think that a brilliant little boy cannot embrace his own childhood. What’s more, I loathe the idea that his mother must watch in vain as her beloved child suffers each day with no idea of when the pain will end. This is unacceptable! This is intolerable! Are we to stand by and allow this to happen to thousands of children and their families every day? Is this to be borne? I say no.

I am of course, fundraising for the Crohn’s and Colitis Take Steps Walk in Chicago again this year, but we’re doing it as a team! To join my team or make a donation, visit http://online.ccfa.org/goto/s_lewis87 Tell your friends, your family, your co-workers, your teachers, and anyone you know can help!

I wrote a letter to the mayor of our town. I told him about the Gut Busters and our crusade for laughter and awareness. I am hoping he can help us put together another charity comedy show to raise funds for our cause. I’ll do whatever I can for as long as I can. Until the day I die.

These days I find that I no longer feel sorry for myself. I haven’t had a breakdown in almost two months. I’m sleeping better again. A friend of mine asked me how I deal with the ileostomy, and I replied, “I don’t deal with it; it deals with me.” I had another accident last week. I woke up to find myself slightly leaking from the side of the wafer. I showered, cleaned up, and started over. It is what it is. I didn’t cry. I didn’t say anything to anyone. I noted that eating a full meal after 9 p.m. is unwise. (It couldn’t be helped, of course.) I didn’t feel sad or angry or disappointed. Nowadays, it’s almost like spilling a glass of milk. Clean it up and move on. Changing the bag is like putting on a pair of pajamas. I no longer regard myself as different or unusual or pitiful or freaky. There is one thing I can say about myself: I’m lucky.
I only cried once about my ostomy in the last month. Permit me to set the scene. Two weeks ago, My boyfriend watched as I packed my bags to visit some friends for the weekend. I gathered my extra ostomy supplies; he observed as I measured and cut the size around the wafer, grabbed extra bags, barriers, and wipes and folded them gingerly into my “potty pack.” Yes that’s what I call it…go ahead…you can giggle. I do. Anyway, he stopped me abruptly, grabbed my hand and said, “One day you won’t have to do this anymore. I promise.” I laughed and then I cried. I think the tears were brought on because of his sweetness rather than my circumstances. I realized that I hadn’t thought about it in so long, and in fact I accepted the notion of living with this for the remainder of my life. It really doesn’t bother me at all. I’m not really hindered in any way. Sure, I’ve had to lose some things in my diet, and it can be a nuisance occasionally; for the most part, I can do what I please. He commented I shouldn’t have to live with it, especially if I have a j-pouch sitting inside me just waiting to be used. Fair point. He’s right. I would always live with the curiosity of “what if?” I’d regret it if I didn’t at least try. My main point is simply that if Mr. J-Pouch didn’t work out, I wouldn’t be too torn up about it. Secondary point: my boyfriend is a dear heart.

Still no insurance, big shocker there, right? I’m working full time and enjoying my job. No benefits yet, although my boss is confident that one day that will change. I’m not in a hurry; I’ve learned to take things as they come.

I started taking an acting class to refresh and refine my skills. I hope to do more of it in the future. I have the ability to perform again–which truly tells me I am back to normal. What’s even better is that I have more emotions to tap into when studying characters. I’ve been through so much in the last year it has provided me with enough emotional memory to really sink my teeth into a performance. I continue to find satisfaction as a result of this surgery…a discovery which leads me to believe I made the best choice.

I hope everyone is well. Best of health

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