Check out this great infographic from Lymphedema Products that explains the importance of compression and how garments work.
Today my story of living with lymphedema and lipedema airs on The Doctors TV Show. I taped the segment back in September, just days after my 37th birthday. I was suppose to be on a cruise with my sisters, but sharing my story to help spread awareness about lipedema and lymphedema was an awesome way to celebrate!
I was in the midst of my major advocacy trip in Washington, DC, which was a part of what I deemed the #SummerofSarah, when I was contacted by producers. So it turned into a whirlwind of travel, but worth every moment of the experience. I admit, as with any media opportunity I was on alert for any possible twist or negative spin that might be attempted. I once was not selected for a TV show because I was too happy and confident, usually the media wants to portray fat people as sad and miserable.
However, The Doctors producer had read my blog, so he obviously knew that my life was not sad or miserable, it was actually how I was was living my life despite having a chronic medical issue that caught his attention. The entire staff of The Doctors were so nice, and thanked me for coming on the show to share my story. Of course, I am VERY thankful for The Doctors giving me a national audience in which to share my story.
The actual doctors on the show thanked me as well, and I was impressed by the information they presented and the way my story was told. The segment was short and sweet: like me! It’s odd that I provided them the pictures, I told them my story, and yet I was still moved to tears when they played the video.
My story always makes me cry, I’m crying as I write this, its emotional thinking about how much I have had to fight to be where I am today. No one, especially those who live with chronic illnesses, should have to fight so hard against bias and stigma and insurance bureaucracy in order to live. But I fight because I can, I know others are not as strong as I am to stand up to the critics and naysayers.
“I could either get angry or get active, and I chose to get active and fight for change.”
What is my alternative? I have never let others’ opinion of me stop me from living the life I want to live, my body provides enough challenges, there is no sense in allowing outside influences to have a negative affect on me.
Living with lymphedema and lipedema is not easy, it’s a painful daily struggle that requires constant management. There are setbacks. I am currently recovering from an infection in my left leg. It’s my life, it’s the only life I know, so I make the best of it and I think those who know me personally would agree I do a pretty good job at living life to the fullest!
Again, I want to thank Nick, Dr. Travis Stork, Dr. Rachael Ross, Dr. Jim Sears, and Dr. Drew Ordon for allowing me to share my story with your audience.
I am overjoyed to see that my congressman, US Representative Brad Wenstrup signed on in support of the Lymphedema Treatment Act. Last summer I met with Rep. Wenstrup’s staff member, and then I had the opportunity to speak with Rep Wenstrup personally during a “Coffee with Your Congressman” event. As a podiatrist, Dr. Wenstrup was familiar with lymphedema and was very receptive to my story and my request for his support of the bill.
It feels very empowering to see the results of my advocacy efforts, I have shared my story on the Lymphedema Treatment Act website and utilized the Legislative Action Center to make initial contact with my representatives. However, this is just one small step in getting this legislation passed. Please you if have not already done so, contact your representative and ask for their support of HR 3877 Lymphedema Treatment Act.
Thank you Congressman Wenstrup!
National Health Blog Post Month Day 10 – Alternative Medicine
Write about alternative treatments and regimens and tell us how you feel about them. What do you support? What is crazy? Have you used any?
Lipedema does not yet have a diagnosis code, let alone a known cause or effective treatment options. Lipedema is an abnormal accumulation of subcutaneous tissue aka FAT. However, lipedema fat cannot be reduced by restricted diet or exercise. Treatment options focus on the inflammation and swelling associated. Some lipedema patients, such as myself, also development lymphedema. Compression therapy has done wonders for my lymphedema, since it pushes the fluid out of my legs, however compression can help maintain lipedema progression the effectiveness is not as successful. There is a promising information for liposuction for the treatment of lipedema, while it doesn’t not address the “cause”, it does relieve the symptom. Currently, the most knowledgeable and experiences surgeons performing liposuction on lipedema patients are in Germany. There are plans for US doctors in New York City to begin performing liposuction for lipedema in 2014. The next challenge will for us to get insurance to cover the treatment, I am currently advocating for passage of legislation to cover compression therapy for lymphedema.
Current treatments lipedema patients use to reduce/manage symptoms:
- Manual Lymph Massage
- Compression Wraps
- Compression Pumps
- Compression Garments
- Compression Sleeves
- Lymphatic Brushing
- Vibration Plates
- RAD Diet
- Detox Bath Soaks
Each of these options deserve a blog post of their own for explanation, I will have to expand on them at a later date.
If you are a Lipedema patient, share with me what options you have tried and if you found any relief.
National Health Blog Post Month – Day 5: Election Day!
Votes are in-you won! If you got elected President, what are the 3 changes you would make to healthcare?
- I would create a single payer, government based system of healthcare. The best healthcare coverage I ever had was Medicaid. Seniors love their Medicare. Our health should not be profit based.
- I would increase funding for genetic and stem cell research to improve disease prevention and treatment. Lipedema is a congenital condition for which the gene has yet to be identified.
- I would mandate all adults to have a Living Will, at age 18 require the advisement of rights and assistance in creating a Living Will of end of life wishes. Can be reviewed and changed as needed, complete renewal at retirement age.
I might not be able to enact those healthcare changes but I will continue to advocate for the passage of the Lymphedema Treatment Act and the Treat and Reduce Obesity Act.
National Health Blog Post Month Day 4 – Training Wheels
Write about a time your health condition forced you to grow up and take the training wheels off (so to speak).
My training wheel moment involves health insurance, of course! It was very much like learning to ride a bike, I even had someone there guiding me, holding the bike seat to make sure I didn’t tip over.
When I was initially diagnosed with lymphedema I was on Medicaid. While it took a couple months for my initial treatment and compression pump to be approved, I never encountered a coverage issue or claim denial. I received unlimited physical therapy sessions, and was in the process of being fitted for compression garments when I got my first REAL JOB with REAL INSURANCE. And then came my first coverage issue and the experience that started me on my journey to advocacy.
Due to the size and shape of my legs I needed custom fitted compression garments, as it is important that the compression is correctly distributed over the limb. Jobst, the manufacturer of the garments my doctor and therapist recommended requires vendors and fitters (those who would take the measurements) be trained and certified to be sure the garments are fitted and ordered correctly. The average price for a pair of garments is $300 so it is very important they are made correctly, and since I needed two pair (one to wear, as the other is washed/dry) it was important that insurance helped cover the expense. After all, by wearing compression garments I was saving the insurance company the expense of physical therapy and hospitalization due to cellulitis. I was unable to find a DME (durable medical equipment) provider in my insurance network who was certified to handle my garment order but thankfully the vendor I did find guided me through the process to request network gap coverage.
I wish I could remember the employee’s name at Luna Medical, as I owe her a huge THANK YOU! She very easily could have just told me I would have to pay out of network for my garments. I would have known no different, as do most patients. Instead, she explained that since there was no in-network provider within a 50 mile radius of my home my insurance company had to cover an out-of-network vendor at in-network coverage level. She coached me on what to ask for and what to say when I spoke to my insurance company. To prove there was no vendor in network, I called every DME provider within 50 miles and documented whether they sold compression garments, and if they did I would document who I spoke with and verify they were not a custom Jobst certified vendor. It took several phone calls, and finally the insurance company said they needed to speak with my physician. I happened to have an appointment with her the next day so I asked her if she would call them. Knowing there would probably be hold time with any insurance call, my doctor told her staff to take me into her office to call the insurance and once there was a representative on the phone to get her. To my surprise, after reviewing the information I had already provided the supervisor only asked ME a few questions and then approved my request. She said she didn’t need to speak to my physician at all, she already had her signed prescription stating medical necessity.
The training wheels were OFF…and I never looked back!
I followed the same process with the next 3 insurance companies I had and successfully obtained approval for my compression garments. I transferred those skills into reading coverage documents, researching vendors and providers and overall navigating health insurance. I often help friends and family with their coverage questions. The experience managing my own health insurance coverage led me to a new career. I earned my BS in Health Services Administration and I am currently pursing a Masters of Science in Health Law.
Although I have been successful in obtaining coverage for most of my lymphedema and lipedema treatment needs, there are still obstacles that block patients from getting the care they need and deserve. That is why I share my story to advocate for the passage of the Lymphedema Treatment Act.
Fresh off my return from #YWM2013 in Phoenix, AZ and my second year of advocacy training, I had the opportunity to put my skills to work at a local event held by my US Representative, Brad Wenstrup. On August 27th, Rep Wenstrup hosted a “Coffee with Your Congressman” event here in Portsmouth. I have previously communicated with Wenstrup’s staff members about HR 2415 – Treat and Reduce Obesity Act and The Lymphedema Treatment Act, but I know it’s a very special honor to be able to speak directly with my congressman. Rep. Wenstrup is a Podiatrist and was very aware and knowledgeable of lymphedema, and of course obesity is a major health issue for our area.
Again, I want to thank Rep, Wenstrup and his staff for the outreach into our community!
You can be an advocate without leaving home! Check out the links below learn more about the bills and to contact your representatives and ask them to support these two very important pieces of legislation.
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 Act.
In 2010 I shared My Story in support of The Lymphedema Treatment Act. The bill did not make it through the congressional process at that time and must be re-introduced. I am committed to using my newly acquired advocacy skills to help make this act a LAW.
WHY THIS LEGISLATION IS NEEDED:
- Lymphedema is a non-curable but treatable medical condition that results in an accumulation of lymph fluid swelling in parts of the body where lymphatic vessels and/or lymph nodes are damaged, nonfunctional or inadequate. Lymphedema affects an estimated 5-6 million Americans, with the majority of cases caused by cancer treatment.
- Untreated, or under-treated, lymphedema is progressive and leads to increased morbidity. Complete Decongestive Therapy (CDT) is the gold standard and only known course of treatment for lymphedema. CDT is a multi-modal treatment that is only effective when used in its entirety.
- Medicare currently covers all but the most critical component, the medically necessary compression supplies used daily in lymphedema treatment, citing they do not fit under any existing benefit category. As a result, many patients suffer from recurrent infections, progressive degradation in their condition and eventual disability because they cannot afford the compression supplies required to maintain their condition.
WHAT THIS LEGISLATION WILL DO:
Although this legislation relates specifically to a change in Medicare law, it would set a precedent for Medicaid and private insurers to follow.
Specific goals of the Act are:
- Provide comprehensive lymphedema treatment coverage, according to current medical treatment standards;
- Enable patient self-treatment plan adherence by providing necessary medical supplies for use at home, as prescribed for each patient (including gradient compression garments, bandages, and other compression devices);
- Allow for new treatment modalities to be considered for coverage as they become available and are approved;
- Reduce the total healthcare costs associated with this disease by decreasing the incidence of complications, co-morbidities and disabilities resulting from this medical condition.
In case you need a refresher on how the process works: