Posts filed under ‘General’

2013: Year in Review

Happy New Year’s Eve everyone!

This past year has been an exciting one for Dan and I, both online and offline. In the past year, Caring for Crohn’s & UC expanded incredibly- while I wrote far fewer posts than last year, the blog received over 19,000 views and gained This year, Caring for Crohn’s & UC exploded beyond my wildest dreams, having over 19,000 views by over 10,000 visitors, and gained 45 WordPress followers, 9 Tumblr followers, 131 Facebook fans and 213 Twitter followers. (Disclaimer: I am a huge analytics nerd, so please forgive me for being so excited over these numbers :-)) Thank you all SO much for your continued readership and support- while I haven’t kept up with posting as frequently as I want to, I am so happy that the content I wrote over the past two years has reached so many of you. It’s all in the name of raising awareness and educating others about inflammatory bowel diseases.

Enough about the numbers- here are some of my 2013 highlights.

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December 31, 2013 at 11:24 am Leave a comment

Raising Awareness One Day at a Time

Happy Crohn’s and Colitis Awareness Week everyone!

Today marks the beginning of Crohn’s and Colitis Awareness Week 2013 and more than ever, I can’t stress the importance of this week for raising awareness and educating others about inflammatory bowel diseases.

Before Dan was diagnosed, I didn’t know much about IBD. In fact I was one of those people who thought IBD and IBS were one in the same (I now know that they are most definitely not).

In the almost seven years since Dan was first diagnosed with Crohn’s disease, I have learned more about these debilitating diseases than I ever imagined I would. I have witnessed the good and the bad- colonoscopies, hospitalizations, surgeries, medications, tens of thousands of dollars in medical bills- you name it, Dan and I have been through it.

I have also been able to raise awareness and educate others who knew nothing about the disease learn about why Crohn’s disease and ulcerative colitis are not just pooping diseases. Through Team Challenge and Take Steps, over the past three years Dan and I raised over $21,000 for research and education of Crohn’s disease and ulcerative colitis.

But I’ve also had the pleasure of meeting incredible people who are battling these diseases and have become my second inspiration for raising awareness.

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December 1, 2013 at 12:45 pm Leave a comment

Team Challenge!!!!!!

Today’s blog post is long overdue. I have had a lot going on in my personal life- getting a new job, trying to find (and failing) an apartment in a new state while starting the new job, training for Team Challenge, etc.- that the blog fell to the wayside. I have not given up on it! It’s just on a little hiatus.

TEAM CHALLENGE

I would be remiss if I didn’t do a post today. Today was the Virginia Wine Country Half Marathon. For the past 16 weeks, I have trained with a team of amazing people to walk the half marathon with Team Challenge, CCFA’s endurance training and fundraising program. We were out bright and early on Saturday mornings, rain or shine, hot or cold, racking up the miles to get to this point. I am floored by how much I accomplished. Prior to March (our first training), the most physical activity I had done in recent years was hike 1-2 miles with my dog, and even that would make me wheeze. Here I was walking 10 miles and, while I was in pain, it was doable. That is an AWESOME feeling.

8 mile training

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June 1, 2013 at 8:02 pm 3 comments

Health Activist Writer’s Month Challenge Day 10

It’s often hard to like pictures of ourselves– post your favorite picture of yourself.

I know I’m not supposed to use words to go with this but just want to give context to the photo- this was taken in 2009 at our wedding.

 

April 10, 2013 at 8:49 pm Leave a comment

Health Activists Writer’s Month Challenge Day 9

I am WAY behind in this challenge so I will be playing catch up in the next few posts but I wanted to begin by responding to today’s prompt.

As a parent with health conditions or parent to a child(ren) with health conditions, what do you hope you’re doing right?

I need to begin this response by saying that I am neither a parent with a health condition nor the parent to a child with it. I am the wife to a spouse with Crohn’s disease. Being his caregiver is a full-time job in addition to my actual full-time job.

Being a caregiver isn’t easy- it means putting the needs of your significant other or child before your own. It means dropping what you are doing to help them, whether it means going to a doctor’s appointment with them and going to work late or getting woken up at 3 A.M. to go to the emergency room. It means keeping track of someone else’s schedule in addition to your own. It means, sometimes, cooking special food targeted to your loved one’s dietary needs which differ from your own.

So what do I hope I’m doing right? I hope I am advocating for his best interests when it comes to treatment the right way.

As someone with a very outgoing, sometimes abrasive, personality, it’s easy for me to stand up for my husband when it comes to his treatment. I’m not afraid to ask questions at his doctor’s appointments to make sure he is getting the best care possible. I’m not afraid to annoy the nurses while he is hospitalized if he needs something and hasn’t received it.

Sometimes, I feel like I am overdoing it by not allowing him to have his own voice. I try very hard to make sure there is a balance in which Dan is able to advocate for himself and discuss his concerns and I can voice my concerns. However, there are definitely times where I am overpowering and Dan definitely just defers to me. His doctor often laughs at me because I’ll answer her questions before he can. I can also recite the dates of his hospitalizations, surgery, when he was diagnosed, and when he started Remicade by heart and respond to those inquiries without skipping a beat.

While I may be overdoing it, it’s just out of love. As a caregiver, I want to make sure Dan is receiving the best treatment possible. If I come off as intense or rude, I’m sorry but that’s just who I am and how I get things done.

April 9, 2013 at 2:03 pm 1 comment

Health Activist Writer’s Month Challenge Day 5

“If I could do anything as a Health Activist…” Think big today! Money/ time/ physical limitations are no longer an issue. What is your biggest goal that is now possible? What’s your one, three, or five year plan for your Health Activism?

Man is this a hard one to answer! There are a lot of things that I wish I could do as a Health Activist yet aren’t possible due to my expertise/full time job. So if these weren’t barriers, where are the top three things that I’d like to do as a Health Activist:

  • Become a Professional Patient Advocate: I know this sounds funny since we are all advocates in our own way but there are programs out there that allow you to become a certified Patient Advocate. If time/money/etc. were no problem, I would want to become one. Over the past six years, I’ve seen how advocating for Dan has really improved his quality of care. Unfortunately, not everyone has someone who is comfortable speaking up for them. I think I could be a great patient advocate for those who need ones to help ensure that they understand their disease, their treatment plan, and their rights.
  • Destigmatize Inflammatory Bowel Disease: It’s unfortunate, but there are many stigmas associated with Crohn’s disease and ulcerative colitis. In fact, according to a Live Science article, IBD is the 6th most stigmatized disease. Some IBD patients are embarrassed to talk about diarrhea and abnormal bowel movements with their doctors, friends and family. In 2000, Katie Couric tackled the stigma surrounding colon cancer, another bowel ailment, by televising her colonoscopy. This allowed people around the country to see that there is no shame in having a bowel disease and that talking about having an invisible illness encourages people to seek medical care. I’d like to find a way to encourage IBD patients around the country to talk about their diseases- tell a friend, a loved one, a coworker, whoever- to show that they are not ashamed and that they will not allow the disease to cause them to feel bad about themselves. I would do this through a public service campaign similar to CCFA’s Escape the Stall and have famous people with Crohn’s and ulcerative colitis, like Shannon Doherty, Ken Baumann, Cynthia McFadden, Mike McCready and others film PSAs that would air nationwide talking about IBD in full details to raise awareness and destigmatize the illnesses.
  • Write a children’s book explaining IBD: More and more children are being diagnosed with inflammatory bowel disease now than ever. As a young child, it’s really hard to grasp the concept of having a disease and coping with the mental and physical effects of the illness. I would like to write a children’s book explaining what IBD is, how it’s treated, what it’s like to live with it, and most importantly, reassure them that IBD does not mean that they have to stop living- they can continue having fun and enjoying their childhood. There are lots of books for children with cancer and other diseases, so I’d really like to write one for children with IBD.

April 5, 2013 at 11:40 am Leave a comment

Birthright Israel Trip for People with IBD!

Are you Jewish? Have you ever been to Israel on an organized trip?

Well I’ve got some awesome news for you!

Amazing Israel, a division of Jerusalem-based Routes Travel, is organizing a FREE Birthright Israel trip for people ages 18-26 who have inflammatory bowel disease.

If you have IBD, you know how stressful traveling can be. This trip is made to accommodate the needs of those with IBD while not missing out on any of the sights- the Old City and Western Wall in Jerusalem, Independence Hall in Tel Aviv, the Sea of Galilee and Golan Heights, Masada, the Dead Sea, the Negev Desert, and Mediterranean beaches.

To qualify for the trip you need to be Jewish, going to Israel on an organized trip for the first time, between 18 and 26 and have a doctor’s note or other medical proof of your IBD.

For more information, visit Amazing Israel online or contact Rachel Nissim at rachel@routestravel.com.

April 4, 2013 at 8:51 pm Leave a comment

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The Caged Bird Still Sings

Striving to be content with the life I have been given, instead of the life I had imagined

Brian Greenberg

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