Posts filed under ‘General’

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

Happy Rare Disease Day!

Today, February 28, is being celebrated as Rare Disease Day, an international advocacy day to bring widespread recognition of rare diseases as a global health challenge.

According to the day’s website, this year’s theme is “Rare Disorders Without Borders,” with

“the goal to convey the global solidarity of the rare disease community. Rare disease patients all over the world face many of the same medical, social and economic challenges.  Together, in solidarity, the global rare disease community is determined to build a better world for patients.”

In observation of this day, here are some facts about rare diseases that I found particularly interesting:

FACT: There are more than 6000 rare diseases that exist.

FACT: Rare diseases affect more than 30 million people in the US, about 1 in 10 people.

FACT: It is estimated that 350 million people worldwide suffer from rare diseases.

FACT: If all of the people with rare diseases lived in one country,  it would be the world’s 3rd most populous country.

FACT: Approximately 50% of the people affected by rare diseases are children

FACT: A rare disease is classified as one where there are less than 200,000 Americans with the specific disease.

FACT: There are several digestive diseases that are considered rare diseases including Celiac Disease, Crohn’s Disease of the esophagus, Collagenous Colitis, Gastritis, Ulcerative Proctitis, gastroparesis, Eosinophilic gastroenteritis, Menetrier disease, Whipple disease, diverticulosis, and many more.

FACT: According to the Kakkis EveryLife Foundation, 95% of rare diseases have not one single FDA approved drug treatment.

FACT: There are fewer than 400 approved treatments for all rare diseases

FACT: Approximately 50% of rare diseases do not have a disease specific foundation supporting or researching their rare disease.

February 28, 2013 at 4:44 pm Leave a comment

Attention NYC-area IBDers: Awesome Vintage Clothing Fundraiser Feb. 18-20

I cannot tell you how excited I am to tell you about this AWESOME fundraiser next month.

My brother-in-law’s girlfriend and her twin sister have their own awesome vintage clothing line called The Vintage Twin. They rework vintage pieces. But what’s even cooler is that each piece is unique – there is only one of everything.

Well, The Vintage Twin holds pop-up shops in NYC throughout the year and gives 10 percent of the proceeds to a charity. In the past, they’ve donated to Hurricane Sandy Relief and to Autism Speaks. Well, from February 18-20, The Vintage Twin is holding their next pop-up shop and donating 10 percent of the proceeds to the Crohn’s & Colitis Foundation of America (through my annual fundraising efforts for them). This is a special event for The Vintage Twin as well because their uncle has Crohn’s Disease.

How awesome is that!

So if you live in NYC, CT, or NJ, or want an excuse to road trip out to the east coast to buy some awesome reworked pieces and give to CCFA, here are the details:

WHEN: February 18 (President’s Day) – February 20 from 12 – 9PM all three days

NOTE: I will be at it on the 18th and would love to meet all you Tri-State IBDers!

WHERE: 45 East 34th Street, 3rd floor, Between Park and Madison, NYC

Hope to see and meet a lot of you there!

January 11, 2013 at 12:44 pm 1 comment

Caring for Crohn’s & UC: Year in Review

This has been a great year for Caring for Crohn’s, both on the blog and personally.

After toying with the idea for several months, I finally launched the blog in June. After a few months on Tumblr, the blog was merged onto WordPress and now here we are!

In just six months, I wrote 73 posts and the blog received over 3,600 views, and gained 19 WordPress followers, 50 Tumblr followers, 124 Facebook fans, and 175 Twitter followers. Thank you all SO much for your readership and support– this blog branched out beyond my wildest dreams and I am so appreciative of all of you who made that happen.

Photo on 12-31-12 at 3.45 PM #2

Without further ado, here are some of the 2012 highlights for Caring for Crohn’s!

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December 31, 2012 at 3:49 pm Leave a comment

WordPress’ 2012 in review for Caring for Crohn’s

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Here’s an excerpt:

The new Boeing 787 Dreamliner can carry about 250 passengers. This blog was viewed about 1,800 times in 2012. If it were a Dreamliner, it would take about 7 trips to carry that many people.

Click here to see the complete report.

December 30, 2012 at 10:12 pm Leave a comment

A Holiday Wishlist for Crohn’s & Colitis

Living with IBD, whether you are the patient or the caregiver, is taxing on everyone. I’m sure you have wished for something to help with the burden- from financial assistance to new medication and everything in between.

Every year, children (and some adults too) around the world write up their wishlist for presents for the holiday season. In that vein, here is a holiday wishlist for Crohn’s Disease and Ulcerative Colitis.

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December 23, 2012 at 9:13 pm Leave a comment

Thank you for your support!

This morning, I got the most wonderful surprise in my email box. Someone had commented on my blog (that in its own is exciting for me) and nominated me for a Reality Award! I am mighty excited about this and want to thank Lauren from The Caged Bird Still Sings for nominating me for this award. I humbly accept it and am so grateful to be part of this big blogging community that supports one another through the good and bad times.
reality-award1

 

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December 17, 2012 at 7:55 pm 1 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

Documenting the life of an IBDer, Non-profit Founder/President, Financial Advisor and Triathlete.

A Guy With Crohn's

Just a guy living life with Crohn's Disease.

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Living With Crohn's & Colitis

A Comprehensive Naturopathic Guide for Complete Digestive Wellness

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Caring for a loved one with Crohn's Disease & Ulcerative Colitis

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