Archive for June, 2015

Hey New Yorkers: Take Action to Ensure Restroom Access!

I’ve written before about the Restroom Access Act (Ally’s Law) and how important it is to get it passed in states across the country in order to ensure that patients with inflammatory bowel disease and other illnesses are able to access employee only restrooms in stores when a public one is not available.

Well New York, it’s your turn to act!

Restroomaccess

In 2013, the New York State legislature attempted to pass the Restroom Access Act but it was never brought up for a vote. Earlier this year, Assemblywoman Amy Paulin (D-88) and Senator Kemp Hannon (R-Nassau) introduced the bipartisan Crohn’s and Colitis Fairness Act in the New York State Assembly and Senate. If passed, this bill would amend New York State public health law to provide individuals with “Crohn’s disease, ulcerative colitis, irritable bowel syndrome, or any other medical condition that requires immediate access to a toilet facility” access to employee-only bathrooms when a public one is not available.

Sounds great, right? It would be, but it won’t pass without your help.

On June 17, 2015, the New York State Senate will vote on the Crohn’s & Colitis Fairness Act. In order to gain support and ensure that we get as many votes as possible, we need to join forces with the Crohn’s & Colitis Foundation of America to lobby our legislators to support this bill. So if you live anywhere in New York, here’s what you need to do between now and June 17:

  • Identify who your New York State Senator is here (if your Senator is Senator Hannon or bill cosponsor Senator Simcha Felder, email them and thank them for their support!)
  • Either email them, call their office or visit and ask for their support of S4918, the Crohn’s and Colitis Fairness Act
  • Ask your friends and family to do the same
  • Don’t live in New York? You can still help by reaching out to New York State Senate Leadership and urging them to support the bill

Taking action takes less than five minutes. To make it even easier, here are two draft emails that you can use to send to your legislator:

Crohn’s and Colitis Fairness Act Letter

CCFA Template Letter

It’s up to you, New York, to make this bill become a law.

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June 10, 2015 at 4:06 pm Leave a comment

Living in the in between

For me, the worst part of being the caregiver of someone with a chronic illness and also a patient myself is living in the “in between”- the grey area straddling the line of good and bad, healthy and sick. I am a bit of a control freak (I know, shocking) and get very agitated when I can’t anticipate what’s to come and can’t adequately plan for the future. Ask anyone who knows me- I am the captain of to do lists (and if they aren’t written neatly enough, I’ve been known to rewrite them) and timelines. Professionally, this makes me great at my job because I am always on top of my work and I can multitask incredibly well. But personally, it is a huge source of angst.

(more…)

June 9, 2015 at 2:16 pm 1 comment

Why I Take Steps

This past Saturday my family and friends proudly walked around Clove Lake Park in Staten Island behind a “MVP Team – Relief for Rosanne” banner. We had just received the Second Place Fundraising Team Award for the third year in a row at the Crohn’s and Colitis Foundation of America’s (CCFA) Take Steps Walk.

2015 Team Relief for Rosanne

 

During our walk on that beautiful day, I couldn’t help but to reflect on far I had come. I didn’t attend my first Take Steps walk. A couple of years after my diagnosis my mom went and walked with a coworker’s team in New Jersey. She reported back to me that it was a wonderful event and that I should attend the following year.

I thanked her and told her I’d consider it, when in actuality attending the following year was the last thing I wanted to do.

I was uncomfortable with my diagnosis. I didn’t tell my classmates what I was going through. Instead of going out with my friends and possibly having an episode or accident, I told them I didn’t feel like going out. Talking about ulcerative colitis, or my symptoms, wasn’t an option.

That was, until I participated in Take Steps New York City in 2010. When I showed up at the South Street Seaport for my first Take Steps walk, I was immediately speechless. I could not believe that there were that many people impacted by Crohn’s or ulcerative colitis. Everyone was cheerful yet purposeful. I heard children at least a decade younger than I was speaking freely about their conditions and about their battles.

I had a chance to speak to some of the best IBD specialists in the tri-state area in the doctor tent. I heard about the wonderful work the CCFA was doing to fight for restroom access in the mission tent. I laughed out loud for the first time in a long time when I saw children tossing toilet paper into toilet seats. I was touched when my teammates, who knew what I was going through, reached a new level of understanding thanks to the many patient advocates in attendance.

As much as the New York City walk meant to me, when the CCFA Greater New York created the first annual Take Steps Staten Island walk three years ago, Take Steps became even more of a personal mission. Our first walk was a modest one. From the naked eye, I would say we had 75-100 participants and the whole walk didn’t net as much money as some of the teams from the New York City walk. However, I was home. I was walking with my neighbors with an underserved IBD community.

It was amazing to me this year to look out and see all the new faces. While this is depressing to some – to see more people affected by these terrible diseases – I knew they were there all along hanging in the shadows as I once was.

I also hit a personal goal this year: for the first time, I shared information about my disease and the walk with coworkers. Many showed their generosity and donated to my team. However, the most important moment for me was when I began to get emails back:

  • I had no idea you were going through this. Can you take medication?
  • I didn’t know about ulcerative colitis. I looked it up after your email.
  • How did you manage your pregnancy with this disease?

Advocacy. Friendship. Awareness. Information. Finding a cure.

This is what Take Steps means to me. I’m so thankful for the CCFA for Take Steps and for all the terrific work it does.

Team Relief for Rosanne raised $4,400 this year. Read more about the team on the Take Steps website

June 3, 2015 at 10:30 am Leave a comment


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