Thursday, April 16, 2009

Guest Blog Post - Think, Question and Shout When You Need To

Hi All - I'm not typically a guest-blog-post-welcoming-kinda-lady but I really wanted to share a guest post from Kairol Rosenthal who has more tips and tricks in her big toe than your hospital does in its entire social worker staff. So without further ado.... enjoy!

XOThink, Question and Shout When You Need To

By Kairol Rosenthal

Kelly saw me get all fired up about my underground cancer resources when I was giving a speech at the I’m Too Young for This Conference in Boston and she asked me to write a bit more about it on her blog.

When it comes to getting what I want in the cancer world I have no shame. What could be more important than stealthy thinking and pushing the limits in order to try to save my life? I’m big into being crafty, leaving no stone unturned, and taking advantage of every free resource that is out there.

I want to share with you a little snippet from my book Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, to show you just what I mean. When I was diagnosed with cancer, I had no health insurance, and fought aggressively for it on my own. But once I got insurance, I still had tons of expenses and paperwork to deal with:

“Through a long process of hard, desperate phone calling, I found Nicola, whom I referred to as my personal goddess of health law. She was a law student who took me on as a school project. Because I was her only “client,” she devoted lots of attention to me. We were the same age, and it put me at ease to talk about these overwhelming administrative issues with someone who was approachable and did not scoff at my naiveté. She wanted to succeed in fighting for every benefit she could find for me. She filled out all of my paperwork when the side effects of my meds made my head spin too hard to concentrate. She accompanied me and spoke for me at my Social Security interview. She made the mysterious and intimidating healthcare system approachable and surmountable. She helped me organize my medical records and legal documents. She appealed for an eighteen-month extension of my COBRA benefits and won. She discovered that the State of California owed me money for disability that I had not known I was entitled to. I cried the day that she brought me a $9,000 check, which without her help would have sat in the state’s coffers instead of in my bank account. The money paid for my rent and groceries for an entire year.”

My motto is “Think, question, and shout when you need to!” I believe that sometimes we all need someone to shout with us and for us. I worked my butt off finding the resources that saved me time and money during my cancer care and figured, why should every young adult cancer survivor have to keep reinventing the wheel? So, I wrote my book, which just hit the shelves. If you want to pick up a copy it is available on Amazon and everywhere books are sold.

In my book I include instructions on how you can find a Nicola of your own. For a sneak peak at this and other health insurance and financial guidance tips, go to my website and download for free the first chapter of my book “Ramenonics”, which covers these topics in the resource section:

Have you ever used another person or organization to help with your health insurance or financial matters? What is the craftiest thing you have ever done to advocate for your care or get what you need from a doctor, nurse, or insurance company? I call cancer an emotional, physical, and administrative experience. Do you agree?


Veronica said...

The greatest of respect to you, Kairol.......the thought of the health system in the U.S. terrifies me as I can think of nothing worse than having to battle for and worry about finances during a time when you need to be only concentrating on your own health. Here in the UK health care is free for all - you're sick? You get treated. However, should my husband relapse again I reckon I'll wish I was in the U.S as there are far more treatment options over there. But it's fantastic that you overcame all the hurdles, with a little help, and have reached out to provide help to others........good luck with all you do.......Vx

Kairol Rosenthal said...

Thanks for your comment Veronica. It is a complex toss up between the US and UK systems; neither are perfect. It is great to have far more treatment options, but not if you cannot afford them, have no access to them, or have to declare bankruptcy in order to get them. I eagerly await the eminent "healthcare reform" from Obama, and hope that he includes a governmental coverage option for all.

Wishing good health to your husband!


Kate Burton said...

You are right, Kairol rocks. BTW, having My Moon My Man pop up while I was reading just gave me a great big smile! Keep up the good work!