Let's face it: anyone in a relationship with a crohnie is going to have some unfortunate side effects to deal with. I am BEYOND fortunate that I married a man with a high level of tolerance and a huge sense of humor. It makes life so much easier!
This video makes me laugh out loud (can you say, "CUPPA CHEESE!")? I think the only move missing from this is the "Dutch Oven."
CCFA’s second annual IBD Awareness Week ended last Friday,
and I have continued to ponder the subject of awareness. I don’t think anyone
(especially Crohn's and colitis sufferers) disagrees that promotion of awareness didn’t end on
December 7. This must be a year-around effort. I’m glad that IBD Awareness Week
has been officially recognized, but I feel we’re just getting started, and that
we’ve got some substantial ground to cover.
There was an Op-Ed
piece by Roger Cohen that ran in the New
York Times last Thursday, addressing the issue of over sharing online. It
struck a chord with me, because it was published during a week in which I was
trying to promote awareness of a topic that, for much of the general public,
would be considered “too much information.” I used my social network to share some
statistics on IBD in an effort to increase awareness. I did doing so sparingly,
cautiously, and with careful consideration of my audience; I didn’t want to
over share. Increasing awareness on a taboo subject is difficult.
My messages weren’t necessarily ignored, but they weren’t
exactly accepted or shared or even acknowledged much, either. After all, IBD is
a medical condition that deals with the digestive system and bodily functions. Shhh....it’s impolite to talk about these
topics in public. It’s “Too much information.”
Too Much Information. There’s even an acronym for it now:
“TMI.” People just aren’t comfortable hearing about bathroom habits, abdominal
pain, and bodily functions (which, as far as many people know, is what IBD is –
bad diarrhea). We are taught about this inappropriateness from the time we are
children. Poop is “gross.” No potty talk or fart jokes allowed. Discussing
these things is uncouth. Even in this About.com
article describing what “TMI” means, bathroom habits and private medical
conditions are cited as examples of things that are TMI – the sharing of “unpleasant
It seems as though we have our work cut out for us.
I do have hope. Breast cancer awareness has grown
considerably since Breast Cancer Awareness Month was first instituted in 1985
(granted, breasts are significantly more glamorous than intestines). And Katie
Couric’s televised colonoscopy in 2001 not only helped increase awareness of
colon cancer, but resonated so well that it has been credited with a 20% uptick
in screening colonoscopies in the years that followed.
IBD has a significant “ew” factor to it. But my hope is that
increased awareness will help people realize that this disease isn’t only about
diarrhea, it could happen to anyone, and it has a significant impact on
people’s day to day living.
For me, IBD Awareness week went beyond spreading awareness. It
also provided another way to connect with a community, one that I have
rediscovered after grappling more often with my disease again. It is
encouraging to know that I am not alone on this journey.
I recently had the opportunity to read Anna Quindlen’s memoir,
“Lots of Candles, Plenty of Cake.” In it, Ms. Quindlen reflects on “Life in the
30’s,” a New York Times column she
wrote in the 1980’s and 90’s about parenting. (See? Sharing personal stories
was happening even before social networks!). She ponders letters she received
““I feel like I’m not alone,” some of those who wrote to me
said. And that sentiment changed my life. That’s what’s so wonderful about
reading. That books and poetry and essays make us feel as though we’re
connected. As though the thoughts and feelings we believe are singular, and
sometimes nutty, are shared by others. That we are all more alike than
different. It’s the wonderful thing about writing, too.”
Although she was talking about connections made over motherhood
(another topic I am inherently interested in), isn’t that part of what we’re
trying to do? Find other IBD sufferers? Find camaraderie in something that can
be isolating? Help each other muddle through these sometimes awful experiences?
People tend to seek out others in similar circumstances. By
sharing our stories, through IBD Awareness Week and otherwise, we can also
build our community and find each other. And by aligning with one another, we
can help raise awareness. After all, there is strength in numbers.
This week (December 1-7) marks the second year the CCFA has sponsored "Crohn's and Colitis Awareness Week."
Senate Resolution 199, passed on November 14, 2011, "Expresses support for the goals and ideals of Crohn's and Colitis Awareness Week. Expresses appreciation to the family members and caregivers who support people in the United States living with Crohn's disease and ulcerative colitis. Commends health care professionals and biomedical researchers who care for Crohn's disease and ulcerative colitis patients and work to advance research aimed at developing new treatments and a cure."
We all have our own stories, and part of mine is struggling with Crohn's disease. Even among the 1.4 million Americans living with IBD, each story is unique, with it's own demographics, symptoms, diets, and treatments. Each story is important and relevant, and they are why increased awareness is vital.
Have you ever seen the 1985 flick "St. Elmo's Fire?" (If you haven't, please do.) In the movie, there is a scene where Rob Lowe's character goes to a dinner party with a friend whose mother is talking about someone who has been diagnosed with "the cancer." But every time she utters the word "cancer", she whispers it, like it's something too awful to be said out loud.
That's sort of how I sometimes feel saying that I have Crohn's. It's not widely known or understood. Whisper it with me now: "I have Crohn's disease." No, it's not something that everyone needs to know, and it doesn't need to be shared with just anyone. But I would like to acknowledge my disease and the impact it has without feeling like it some how makes others cringe, or that it invalidates some of my other traits or qualities.
For what other reasons is awareness of these diseases important?
- More than 70,000 people (children and adults) are diagnosed with a form of IBD every year
- Crohn's and Colitis are not only about having to use the bathroom; these stories involve pain, fatigue, surgeries, hospitalizations, and medications - impacting not just the patients, but the people around them
- For my children!
- Awareness is a first step toward finding a solution
- For increased acceptance - Ally's Law (The Restroom Access Act) is an important step!
- Because Crohn's and Colitis are among a family of autoimmune diseases whose rates of diagnosis are on the rise
- So we can talk about it, without shame
The year I was diagnosed, I found the little plaque below in the university book store. It has had a place on my desk ever since. It says, simply, "Things happen for a reason, just believe." Whether this statement is true or not, is has helped me through some tough days. I always believe it will get better.
I believe in building a community and awareness. I believe in Crohn's and Colitis Awareness week, and what it can achieve.
One of my favorite things about being a parent is having the opportunity to rediscover the world and my imagination (or at least enjoy our children's imaginations). A few years ago, my husband and I started taking photos of oddities we'd find around the house. We don't do it all the time (who has the time?) but we're regularly amused by the creativity(?) of our children.
Here are a few things I found around the house this past weekend that made me chuckle.
Foil around the leg of our coffee table. For some reason, when we had the foil out, the boys each wanted some pieces, too...for a "project". I did not know that would include wrapping up the furniture:
And why wouldn't we wrap Baby Elmo up in foil too? Perhaps that seems the logical choice, for his new crib in the bathroom cabinet:
Our 5-year-old has added several helpful flags around the house to remind us what we shouldn't touch or sit on (like my birthday flowers). The fact that most of these notes are for his younger brother who can't read doesn't matter. This kid LOVES to write notes for any reason (a fact that I love!).
Also, not pictured: chopsticks on the lounge chair. Why? Why Not?!
Whew! Typing that number out makes it feel even bigger than it is!
I know, you're not supposed to share your birthday wishes, or they won't come true. But this one I will. This year, as have done for a number of years now, I wish for good health (or, at a minimum, no hospitalizations). I wish this not only for myself, but for my sons, my husband...for my whole family.
I don't remember exactly what I wished for earlier in life - in the "healthy years." I'm sure somewhere along the lines were a job, success, love, and some material things. Those things matter less, especially now that we have children. But I do wish for them to be healthy, to have many opportunities, to be kind, giving, and to learn from their mistakes. I wish for them to be successful and happy.
This year, I was sick for my birthday. That ill-timed cold I came down with last week turned into a full-blown fever (quite possibly the flu) and eventually settled into my head and lungs as a sinus infection and bronchitis. I've been miserable for days. Fortunately, I have a script for antibiotics, and things are on the upswing! Honestly, I'm glad that's all it is.
This bug I've caught is an annoyance, and may or may not be connected to my weakened immune system. It's also a reminder that lately, I have been sick a lot. I have struggled in the past few months to control my Crohn's disease, adjusting meds and my diet; making extra trips to the clinic for labs and check-ups. It's a frustrating proposition and it can take a toll emotionally and mentally at times. I accept that this is what life will be for me, and I acknowledge that it could be so much worse.
But for the aforementioned those reasons, I (selfishly?) wish for health. Because it gives me a little more freedom to be an active Mom. It makes me feel like I can give everything I can to parenthood, my marriage, and my career. For awhile, it makes me feel superhuman, no matter how long my reprieve may be.
And so today, I close my eyes and I wish, wish, wish so hard....for health.