Advocate: A Decade in the MakingAugust 1, 2013
April marked 10 years since I had my RNY Gastric Bypass. As many post-op patients will admit, the journey has not been as expected, but then again the same could probably be said by anyone regarding events of the past decade. I am looking back on the past 10 years and sharing my thoughts with ObesityHelp.com because OH has played a major role in shaping my journey path - the good, the bad, the scary, new friends, new adventures, and new opportunities.
Where do you see yourself in 10 years?
I was asked that question ten years ago in one of my college courses. At the time I was pursuing a degree in Higher Education, and my ten year plan was to be a Director of Student Activities at a university. My undergrad college experience and leadership involvement had a great impact on my life and I thought that was my calling and a career for which I would want to work for many years. I took an exciting leap and moved from Ohio to Miami, Florida to pursue my dreams with vigor. I went on to work in Student Affairs for 5 years! I decided to have weight loss surgery to better my health. Little did I know I was about to encounter a huge detour in my plans, one that led me in an unexpected, but more fulfilling direction.
A Real Leg Ache
Part of my health problems were in my legs, they were abnormally large, seeped clear fluid, and were prone to serious skin infections. I was diagnosed with lymphedema in my legs in 2001. Before weight loss surgery, I started treatment on my legs that consisted of manual lymph drainage (MLD) and compression wrapping therapy. Lymphedema is caused by non-functioning lymphatic system. Manual lymph drainage is performed by specially trained Physical or Occupational Therapist and is a gentle full body massage that focuses on stimulating the lymph nodes in order for the body to process the collected lymph out of the body. After MLD is performed to stimulate the lymph system, the affected limbs are compression wrapped to help further reduce the lymph fluid that has accumulated. The treatment is emotionally and physically draining, as the compression wraps can be uncomfortable, but the results are worth it.
I was so thrilled with the results! Then I had weight loss surgery and that even furthered my progress. For the first time in many years, I had hope that my weight would finally be under control. Instead of all my health issues being blamed on my weight, my concerns were being addressed and I was getting the medical care I needed. My WLS and Lymphedema treatments had been thankfully covered without issue by Medicaid during that time. With the new job, came new insurance coverage. I was so excited to finally have real insurance with the new direction in my life. To my dismay, real insurance was a real leg ache and a new challenge!
I transitioned my Lymphedema treatment to a lymph specialist who properly diagnosed me with Lipedema, in addition to Lymphedema. As I continued my treatment, for the first time ever I was limited in the number of therapy visits. This was really concerning as proper compression treatment must be uninterrupted; any lapse in treatment can undo progress made up to that point. My therapist thought it was possible that I would be ready for compression garments at the end of my visits, so authorization was requested. Due to the size and shape of my legs I needed custom made garments, and there were no vendors in my insurance network that could provide what I needed.
And so it began…
The phone calls, the insurance appeals, the WINS! I will not go into the all details of what it took to get the therapy and garments that I needed because it was a long and complicated process. Unfortunately many people would just accept the garments would not be covered and pay out of pocket or worse yet, go without the garments they so desperately need. To sum up the long process, I requested “network gap” coverage in order to get my compression garments covered. I often joke that I have more time than money.
The next year my employer changed insurance providers and I had to go through the entire process again, to prove my condition and my need to for special garments. So far I have successfully obtained coverage for my compression garments through three different major insurance companies.
If there was a silver lining to having Lipedema, it was that it affected my arms and made brachioplasty a medically necessary procedure. Of course, it took two appeals and an external review to convince my insurance company. However, once again I was successful. I completed the appeal completely on my own; my plastic surgeon’s office did not assist. I read the policies, wrote my own letters, and submitted my own documentation. I soon realized, I had a very good understanding on “how to get things done” in the insurance world. Others noticed too, because soon I had friends and co-workers asking for my assistance with their own insurance questions and issues.
The ObesityHelp message boards provided lots of valuable information and resources. Reading other OH member’s experience with the insurance process gave me ideas of where to research guidelines and policies pertaining to my situation. As I learned, I also shared through interacting on the message boards, writing articles for the ObesityHelp newsletter, and presenting a session called Navigating the Insurance Process, at the ObesityHelp Event in New Orleans.
In addition to my advocating for better health insurance coverage of obesity and Lymphedema, I am advocating to reduce weight stigma and bias in society, and more specifically in healthcare. My Lymphedema and Lipedema went undiagnosed for several years because physicians blamed the problem on my weight. I have also encountered weight bias in the workplace. I have worked hard to improve myself overall, when I first began my WLS journey was goal was to be educated and employable. My success has never been based on a goal weight or size, nor do I accept others judging me by those standards.
Earlier this year I was featured in the OAC’s Your Weight Matters Magazine. They have a section called, “Members Matter” where the OAC shines a spotlight on how their active members are making a difference. In my spotlight, I shared my very personal story about how workplace discrimination empowered me to join the OAC to become an advocate. While my advocacy with the OAC is just beginning, it is the knowledge and experiences gained through a decade of membership with ObesityHelp that has prepared me to broaden my horizons and take on a greater cause and new life directions.
I ended up having such an interest and passion in health insurance and advocacy, that I decided to change careers. I earned my BS in Health Services Administration in 2009, and am now currently working towards a Masters in Health Law!
…the next 10 years?
I know better than to try and predict where I will be a decade from now, but I do know that I will be continuing on the path of support and advocacy.
With that said, I know where I will be in the short term.
I urge you to join me, together our stories, our voices can bring much needed change!
- August 14-18, 2013 at the OAC Convention.
Here’s how you can get involved. http://www.ywmconvention.com/
- October 4-5, 2013 at the ObesityHelp Conference.
Here’s how you can get involved. http://events.obesityhelp.com/
- September 3-7, 2014 at the The National Lymphedema Network Conference.
Here’s how you can get involved. http://www.lymphnet.org/2014conf/2014conf.htm
There are currently two bills, The Treat and Reduce Obesity Act of 2013 and Lymphedema Treatment Act, being introduced to Congress which I fully support and want to see passed into law. I will be writing letters to legislators, regulators, blogging, talking to my local representatives in person and through letters. I will do my best to educate and encouraging others to use their voice and tell their stories.
Join me and visit the OAC’s Legislative Action Center to urge Congress to support the Treat and Reduce Obesity Act of 2013.
Join me and visit the Lymphedema Treatment Act Legislative Action Center to urge Congress to support the Lymphedema Treatment.
ABOUT THE AUTHORSarah (aka Sarahlicious) has been an active member of ObesityHelp since 2003. Her specific areas of interests are Lipedema, Lymphedema, Obesity, and Health Insurance advocacy. Sarah writes about her life experiences at Born2lbFat. She is a member of the Board of Directors of both the Obesity Action Coalition and the Lymphedema Advocacy Group. Sarah has a Masters in Health Law.
Read more articles by Sarah!