Showing posts with label Music. Show all posts
Showing posts with label Music. Show all posts

Wednesday, October 26, 2011

IBD Icons: A New Awareness Campaign From American Idol Contestant Casey Abrams & The Crohn's & Colitis Foundation Of America (Voting Ends Soon!)


Who loves American Idol?


If you're a loyal fan, you probably know the name Casey Abrams. Casey was a Season 10 American Idol contestant and won the hearts of many across the country with his smooth jazz vocals and skills on the bass. During the summer 2011 American Idol Tour, Casey began investing in a cause that is close to his heart: a new awareness campaign and contest called IBD Icons for inflammatory bowel disease (IBD), which includes Crohn’s disease and ulcerative colitis (UC).

Despite his own diagnosis and struggle with UC, Casey finished in sixth place on season 10 of American Idol to earn a coveted spot on the 2011 summer tour.

Casey has teamed up with the Crohn’s and Colitis Foundation of America (CCFA) for IBD Icons to inspire people living with IBD to pursue their dreams. Through the campaign, IBD patient have had an opportunity to share their success stories for a chance to win the title of IBD Icon and a trip to see Casey perform at the Zappos.com Rock ‘n’ Roll Las Vegas Marathon & ½ Marathon to benefit the CCFA.
The top nine finalists have been chosen, and the public can now vote for the candidate they find most inspiring. Two winners - one with UC and one with Crohn's - will be voted the 2011 IBD Icons. For every vote cast, Janssen Biotech, Inc. will donate $1 to the CCFA for IBD research and education. I was lucky enough to interview one of these incredible finalists, and today you'll see her inspiring answers!




Katie Jeter-Boldt, a finalist from Kansas City, Missouri, shared her personal story of life with IBD. Her story began on a sunny August day nearly 13 years ago, when her father died from complications related to Crohn’s disease. Four years later she was diagnosed with Crohn’s disease, a diagnosis later changed to ulcerative colitis, another form of IBD.

When Katie received her diagnosis, she thought her life would be cut short. She attended college on a Navy ROTC scholarship and was not sure what affect her diagnosis would have on her plans to serve as an officer in the Navy.  At the time, she even told her fiancĂ© (now her husband) that he could break off the engagement, as she did not want him to experience the pain this disease inflicts upon family members.  He refused to do so, and stuck by her as they weathered her illness, her medical disqualification from military service, a sea of medical bills, and countless insurance claims. Inevitably, they established news goals and a direction for their life together as husband and wife.




Katie found new hope and inspiration from her experience and decided to apply her skills and abilities in order to help others. She has since become an attorney.

Katie misses her Dad every day. His absence is a continual reminder that she needs to do what she can, when she can. She says, “UC may be a part of who I am, but it does not completely define me…Live for now. Find joy in the beauty of everyday life.  Enjoy the good times when they come in order to get through the bad times.” 

Katie signed up on the IBD Icons website to share her story of life with an IBD, and hopes that people vote for her to win and find inspiration from her story. And now, please enjoy this wonderful interview with Katie...


When were you first diagnosed and how old were you ?

I was first diagnosed in August 2002, just two weeks before my 22nd birthday.  As fate would have it, this was my very first day of my senior year of college and was only days before the anniversary of my dad's death from Crohn's complications.  I had started showing symptoms about a year and a half before my diagnosis, but kept being told that I didn't "look" sick and that I was too active and otherwise healthy to have IBD!  

What would you tell someone who has been newly diagnosed with your condition and/or a chronic illness in general?

One of the biggest things is to find a doctor who will work with you with treatments and to manage symptoms.  Not everyone's illness has the same set of symptoms.  One of the hardest things for me has been to learn what my body's signals are so that I can adjust my routine to allow it to heal.  That has taken time and I'm certainly still learning, even 9 years from my diagnosis.  Having a chronic illness has changed my life and has caused me to adjust my goals somewhat, but there are still more things I can do than things I can't.  It may mean being flexible about my goals, but I can still set goals and achieve them.  Chronic illness has changed my life, but it hasn't kept me from living my life on my terms.  I run half-marathons and am hoping to run a full marathon this spring.  I also hiked my first "fourteener" this summer when my husband and I summited Quandary Peak, just outside of Breckenridge, Colorado.  I think that's what prompted me the most to submit my story for consideration as an "IBD Icon"--when I was diagnosed I felt like I'd been given a death sentence, given my dad's history.  If I had seen these stories of successful people living with these illnesses, I think it would have given me tremendous hope during a dark period of my life.  I wanted to be that hope for someone else and to raise money for research.  Treatment has advanced so much since my dad was diagnosed 25+ years ago and I am certainly reaping the benefits of those advancements.  It is exciting to think how much more treatment will advance in another 25 years with the proper funding.

Please explain a bit how your condition affects you. 

One thing I have learned over time is that stress is my biggest trigger.  I'm a very competitive Type A attorney, so stress is a natural part of my life.  In order to keep my disease under control, I have to control that stress.  I discovered a few years back that I love running and that it really helps me relieve stress.  Also, I need my sleep--I really prioritize 8 hours of sleep.  Even so, sometimes the disease acts up.  My major symptom is GI bleeding, which can lead to anemia.  In the past, I've received blood transfusions because of loss of blood.  The fatigue is really hard for me to deal with because it brings me to a complete stop.  I've learned that when that happens, I just have to let go and rest so that I can fight another day. 

Where do you get your strength?

My strength comes from so many sources.  My family and friends are fantastic supporters.  I'm married to a wonderful man who understands when I'm having a bad day.  When I was diagnosed, I actually told him that he didn't have to marry me and was fully prepared for him take me up on the offer--I think I was actually surprised when he refused.  Also, there are so many people I see living with chronic illness every day who get up and go about their days. They give me strength.  I've had very dear friends undergo cancer treatments and then work to share their stories to help others.  They are my heroes and I don't know that I would have shared my story without their example to follow.  Overall, though, it's the little things in life that really keep me going--leaves changing color in the fall, beautiful sunsets, flowering meadows.  The world keeps going and so can we.

What are you most proud of?

Today.  And tomorrow, when it comes.  And then the next day.  Just getting up, living life, and trying to make each day the best day possible, so that when the bad days come--because they will--there are all sorts of good memories to help with the bad days.  None of us ever know what our future holds--all we know is now.  I'm a planner by nature and I was probably the only kindergartner with five year plans.  My family laughs that I create contingencies to my contingencies.  Living with this disease has forced me to be much more flexible.  I still make plenty of plans and I doubt that will ever change--but now I realize that it is OK to change those plans from time to time.

What would winning the title of IBD Icon mean to you?

It means showing the world that living with this disease and accepting this disease does not mean being a coward; that this disease can be part of a full and wonderful life.  For a long time, I hid my disease from everyone.  If no one could tell I was sick, then I wasn't really that sick and there was no way my dad's history was going to be my destiny.  Accepting this disease--and the uncertainty that comes with it--has really caused me to try to appreciate each day and strive for what I want out of life.  I want to share that hope with others and raise some money so that we get closer to a cure so that no other families ever goes through what my family has experienced.
For further information about the IBD campaign and the 9 finalists, visit this website -- http://www.multivu.com/players/English/51547-ibd-icons/

Wednesday, July 13, 2011

In The Company Of Music



My recent engagement has really tapped into my romantic side; a side that's never too far under the surface with me. And what helps dreamers drift further into their own thoughts? Music. No matter what mood we're in or what we're going through, there will always be a song to match it. By definition, then, we are never really alone and that's a pretty comforting thought. So while everything is wonderful for me right now, that wasn't always the case. Anyone who has been reading this blog for more than a few months knows that.

Living with chronic illness means living with a certain level of uncertainty. I know as well as anyone that, no matter how things might be today, there will be hard days ahead. I'm lucky to have found a medical regimen that works for me. I'm lucky to have more "good days" than "bad days." And, while I'd love to think it will continue like this forever, it might not.


But there is always music. When things were at their worst last fall, I listened to Ingrid Michaelson on repeat. While some of her songs lifted me up, others just allowed me to be right where I was. On some of my worst days, I even attended two of her concerts in New York City (which was the best medicine possible). There's just something about her voice and her lyrics that makes me feel understood. During that time, I played "Keep Breathing" more times than I could count. I thought I'd share it today; not only because it's one of my favorite songs, but because someone out there might need to hear these words today. Sometimes all we can do is just keep breathing...and, really, that's just fine.

Please feel free to comment on this post and share the songs, singers or bands that have accompanied you on your journey. I'd love to hear from all of you!

(Double click on the video below to get a full-screen)

Love,
Maya

Wednesday, March 17, 2010

A Fuller Picture


Sure, most of my posts will be about living with chronic illness, but if you're going to read about my living and loving, I'm positive a few things will come up (probably pretty often):

1) My family: As I said in my first post, they're everything
2) My friends: Add them to the aforementioned "everything"
3) John (and his family):  I'll try not to embarrass my boyfriend too much, but he's such a huge part of my life that I'm sure he'll make his way in here fairly often. I know his amazing family will too since they've made me feel like a part of it.
4) Animals: It typically takes at most 10 minutes of talking to me to see what an animal lover I am. I'm that strange girl on NYC streets content in engaging your dog in conversation...and not you (oops)
5) Vegetarianism and Animal Rights: I promise not to turn this into a blog about animal rights, but it will come up. I'm profoundly passionate about this issue, so hopefully you'll either find it interesting and useful or you wont mind too much. I know it's not for everyone, nor am I trying to push it on anyone.
6) Poetry and Writing:I was an English/Creative Writing major at Colby and had the greatest professors. Writing isn't just my favorite past time, it's almost spiritual at this point. It connects me to people through time and space. It just makes me feel alive.

7) Music: I grew up on music and it's just a part of me. I really listen to the lyrics. I've also been singing my whole life, took part in countless choruses (including All-New York State in high school. Sorry for the brag.) and am an alumni of the Colbyettes (Colby's first all-female a cappella group). I'm fully aware of how dorky a cappella is, but it was also a great time in my life and I really miss those girls (see photo). I'm always looking for new music and artists, so if you have suggestions please send away!

8) Travel: I've been lucky enough to travel a lot for a 24 year-old. I've loved everywhere I've been and have even gotten to live in Quito, Ecuador and Melbourne, Australia. Somewhere down the line I'll probably post about those experiences since travelling and living abroad with chronic illness is a whole new barrel of monkeys.

So enough talking for today. How about some sweet pictures of the pooches in my life?

This is our Bernese Mountain Dog, Riley (also known as "Bear", "Panda-Cow", "Boo Bear", Buddha Bear", "Puppy man", "Ry-Pie" and so on.) Interests include: bagels, napping, being a mush, bagels, rolling down hills, cuddling, snow, bagels.  He's the BEST therapy. If you have the time, space and means for an animal, there's really no better medicine.
Here's the other pooch I love:

Meet Lily, the German-Shepard mix we adopted from North Shore Animal League here on Long Island (also known as "Lady wolf", "Sheppy", Lilybelle", and so on...). She can be a real nut job and is definitely the "Alpha Dog" (Riley never had a prayer), but she is also very sweet. Never met a dog who's so in tune with my emotions - she always knows when I'm having a "bad day" in terms of my pain and tries her best to fix it.