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.
Day 2 of National Health Blog Post Month and today’s prompt is “The Little Engine” taken from the children’s story, The Little Engine that Could:
Write 3 lines that start with “I think I can…”
Then write 3 lines that start with “I know I can…”
I had to laugh when I thought of the train analogy and my medical condition because my caboose is a much more prominent and powerful train car in my journey. Do trains still have cabooses? For a few years during my childhood I lived near train tracks and I would always love waiting for the end of the train to come by so I could wave to “Mr. Caboose Man”. My caboose (butt) is big because of Lipedema. But that size and weight does not hold me back, instead it is the real source of my power and strength. Living with Lipedema has made me strong, resilient, resourceful, and compassionate.
With that said…here is my Big Caboose – Little Engine Remix
I think I can be a catalyst for change.
I think I can encourage others to be their own advocates.
I think I can change society’s perception of obesity by sharing my story.
I know I can be myself.
I know I can survive.
I know I can win most battles with health insurance companies.
What do you THINK and KNOW you CAN do? What is your source of power and strength?
November is National Health Blog Post Month and Wego Health is providing daily prompts. Since I’ve been slacking recently at posting and even had my blog called “the inconsistent blog” I thought participating would be beneficial to me and my readers.
This year there will be Favorite Friday posts, and today is both the FIRST post of the month and a Favorite Friday!
Nov. 1 Favorite Fridays
Tell us what your favorite health apps are and how people can find them.
GoodRx (FREE) – My number one FAVORITE health app is GoodRX. It is an app, and a website, that helps you locate the lowest price prescription medications in your area AND provides discount coupons for many of the medications. I first heard about this app on NPR. I have used the app a lot recently as I have been in transition between health insurance coverage and do not have prescription coverage right now. I just present the coupon information to the pharmacy and they enter it and I get the discounted price. The price has not always been accurate, but within a few dollars, and still MUCH lower than original retail price.
MyFitnessPal (FREE) – This app is great for tracking food intake as it has a very diverse directory of foods, and a bar code scanner for foods that are not already in the system. Having been tasked with documenting my food intake at various points in my life it’s great to no longer have to keep a little notebook with me, or try and remember every bite at the end of the day. The app also tracks activity, and weight, and provides you an estimate daily calorie goal based on your weight goal (loss or maintain). MFP also syncs with many other fitness apps and devices.
Health Insurance Carrier App (FREE) – Apps vary by company but most major health insurance providers now have mobile apps. I find the apps most helpful in locating a provider or facility. How often are you in your doctors office and are referred for a test or to see a specialist and you have no idea if they accept you insurance. With the app you can quickly check the directory right from your phone! I have personally used the Humana app, but I went ahead and found the links for other companies: BCBS, Aetna, Cigna, United Healthcare.
This prompt made me realize I’ve NEVER even checked to see if any lymphedema or lipedema related apps exist. I found LymphTracker ($.99), which helps track measurements of your affected limbs. This can be very helpful, unfortunately when I went to purchase the app on my iPhone it said the app was no longer available. It would also be beneficial to have an app to locate lymphedema therapists, compression garment vendors, etc in your area.
Have you used any of these apps? Tell me if you found them helpful! Also if you have a favorite health related app share it with me in the comments!
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.
Getting ready for more education, friends, and fun at the ObesityHelp 2013 National Conference in Anaheim, CA, October 4th & 5th.
I’m also hoping to have time to visit with my college mentor who now lives and works in California, the man truly changed and saved my life!
There is still time to join me in Anaheim! This will be my 8th ObesityHelp Event!
I like to stay active with ObesityHelp and the weight loss surgery community because I’ve met many fellow Lipedema and Lymphedema patients who have had or are considering weight loss surgery and it is great to meet others with similar experiences.
Social Media is responsible for me writing this post. First, I saw a post on Facebook by ZocDoc, which I “Like” because a friend of high school who lives in NYC uses their services and “Liked” them one day, and being in the healthcare profession I wanted to learn more about the company, I liked what I read, especially their service philosophy. So I read this post from ZocDoc about Social Media and Health, and how bloggers can submit their writings on the topics. Hmm, I knew how much I utilized Social Media in my healthcare advocacy to help others and myself, but had I actually written a blog post on the topic of Social Media? No, but I knew I could, so I added it to my “to do” list.
Then the next day I saw my new Twitter friend, Rhiann, Tweet about Social Media and Health, and it happens to be a Blog Carnival writing prompt. Awesome! Now, I met her during a Twitter #HAChat hosted by WegoHealth.
Leslie at ‘Getting Closer to Myself‘ is hosting the ‘Patients for a Moment Blog Carnival’, and has given the following prompt.
1. Describe your illness in 140 characters.
Perfect it’s a Tweet! And to my delight, my normal Lipedema description fit into 140 characters.
Lipedema: Abnormal accumulation of subcutaneous tissue; primarily in hips, thighs, legs & upper arms. Does not respond to diet & exercise.
2. How has social media impacted your illness experience?
I was diagnosed with Lymphedema in 2001, and Lipedema in 2004, before Facebook, Twitter and even “Social Media” were the current means of communication on the internet. At the time I was diagnosed I connected with other lymph patients via Yahoo groups and message boards. I have also been very active on weight loss surgery forums, such as ObesityHelp. I have gained a wealth of knowledge, and many friends via the Internet. The internet has always been a means of support for me. I lived in a small town in Ohio, so the internet provided a means to reach out to people beyond my geographically limits. I then moved to Miami, FL, and the internet provided a way to meet new friends in my area and get healthcare recommendations.
In addition to getting support and information from the Internet, I have also given back. I started this blog to share my story and promote awareness of my conditions, Lipedema and Lymphedema. I also am advocating for two pieces of legislation currently in Congress. I was please to find a whole new world of Lipedema patients on Facebook. Until this year I knew only one other Lipedema patient. While I have been maintaining my illness, I had lost hope there was any other new developments in the treatment options or interest from the mainstream medical field. Through the new connections I made via Social Media I learned that in fact there are new options. And I met others LIKE ME, and NEAR ME! And there are plans for a small gathering this October, so we can meet and share our experiences in person.
I began promoting my blog by sharing posts on Twitter. It was there I found WegoHealth and began participating in #HAChat. And I realized there is a way to connect with other chronic illness patients, despite our conditions being different in disease, our daily lives share a common experience..typically themed in getting the best and most appropriate medical care for ourselves. Social Media has opened up an entire new world of support, and knowledge.
The entire experience has given me a renewed sense of empowerment. I am a healthcare advocate, my goal is help others. Social Media is helping me reach that goal.