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.
“A picture is worth a thousand words, this picture turned out to be worth $500…
“I’s not whether you win or lose but how you play the game…
I never imagined a day at the pool with an underwater camera would lead to my story of living with Lipedema being featured on HealthCentral, nor that the contest would be an experience in itself. There are several stories to be told, the story of being fat shamed while at the gym when the picture was taken, the story of why I entered the picture for the HealthCentral #LiveBold contest, and the story of the connection I made with fellow contestant and second place winner Gabe Howard.
I became aware of the contest through the Obesity Action Coalition, I have been a member since 2012 and am known for being a strong advocate against weight stigma and bias. Upon seeing the contest guidelines, to share a picture of how you live bold with a chronic condition, I immediately thought of this picture. While I initially thought the picture made my butt look big, I quickly realized the powerful message captured in the moment. I crafted my words to fit the image and submitted it for the contest. I did not set out to win the contest, my only intent was to share my story. However, as voting continued I saw I had the potential to win and ramped up my social medial campaign to solicit votes.
One day I decided to check out the #LiveBold hashtag on Twitter to see which other contestants were promoting their stories. I came across Gabe’s posts, I had read his story and really connected. I began to follow him on Twitter and sent him a Tweet. I liked his story so much, that I started requesting that my friends and family vote for both of us. It turned out Gabe lived only two hours from me. Small world indeed, his father is actually from my hometown. Win or lose, I had made a new friend.
So then the announcement came and I won! My story was going to be featured on HealthCentral.com. This was huge, not only for me, but for the Lipedema and Lymphedema communities. The prize was well timed also, as I was preparing for my trip to Washington, DC to attend the National Lymphedema Network Conference and Lymphedema Lobby Days. I used the $500 Visa Gift card towards my hotel expenses.
So it turns out HealthCentral’s offices are located in Alexandria, VA and when they heard I would be in DC they invited me over to meet the staff, tour the offices, and lunch. I also filmed an interview with them to be included with my blog post, Living Boldly With Lymphedema and Lipedema
Lesson learned: Never underestimate the power of your story…or a picture of you in your swimsuit.
I shared my journey to health in the pool during my FitBloggin’ 14 Ignite in Savannah, GA. This was my first FitBloggin’ conference but it will definitely not be my last. Forgive my rushing, the point of an Ignite is to give quick information within 5 minutes, I excel at talking fast, I fail at getting to the point of a story within 5 minutes. Overall, I shared my story, I raised some awareness about Lipedema and Lymphedema and I found an entire new community of support and friends.
Another study was released attempting to debunk the idea that healthy obesity exists. I had lab work done in March and was boasting about my good health status as my normal lab results and other doctor appointments indicate all my vital statistics are well within normal range. I consider myself to be healthy, the medical test results are proof. I admit I slacked with exercise during the winter, but even after months of absence, upon my return to the gym I found my stamina and ability unchanged. However, according to these recent studies my accomplishment in achieving and maintaining good health is still not good enough. That despite normal cholesterol, blood sugar, and blood pressure, individuals affected by obesity are STILL at risk for future cardiac issues. Therefore the study recommends that doctors should emphasize healthy diet and exercise. *eyeroll* I do eat healthy and exercise, that is how I maintain my current “healthy” status. So a doctor lecturing me on diet and exercise will not help with my weight, which is due to Lipedema. Actually, the only “fault” most doctors find in my eating habits is that I drink diet soda. And the assumption is made that I might be consuming more calories by drinking diet soda, blah blah blah. Let’s be honest, 400lbs is not due to drinking diet soda. I do not understand the purpose of these studies to debunk the Healthy Obesity “myth”. Why not research the cause of the excess weight? It seems so unbelievable that people can be healthy while obese, then why attack the healthy status which are supported by medical tests, why not focus on the reason that despite having a healthy lifestyle some patients still have excess fat? Or why despite healthy diet and exercise, weight alone contributes to cardiac death? Or is the use of “cardiac event” just a scare tactic? I know many normal size, otherwise considered healthy people who died suddenly from a heart attack. Most coroners will tell you everyone dies of cardiac arrest, your hearts stops, you die. Patients affected by obesity already face weight bias in healthcare, and these studies seem like an extension of that bias into the research part of the medical world. There are known gaps in obesity research, perhaps it would be better to research the positive, the healthy so it can be replicated. Would I be better off if I weighed less? Of course I would. Is diet and exercise the answer for Lipedema? No, it’s not. We need more research of the cause of excess weight beyond the assumed poor lifestyle choices, and we need treatment options beyond those that control hunger or limit caloric consumption.
Ignite Fitness is THE FitBloggin’ keynote event. Five minutes, 20 slides, a whole lot of fun…yes, I am limited to 5 mins. Think I can do it?
Finding Sarah – Just keep splashing: My journey to health in the pool
Weighing more than 500 lbs, I began my journey to health by walking laps in a pool. I progressed to water aerobics and learned that water fitness was actually one of the best exercises for my lipedema and lymphedema. While my physical abilities may be limited, fitting on gym equipment and mobility, in the pool I have freedom with my movements (foot at shoulder level) and the ability to adjust the intensity of my workouts. I have taken classes at many gyms, my favorite being with “Coach” as we called her, thick accent and “more faster” commands. My first day in her class, at a new gym she advised “do your best.” She obviously noticed this was not my first class, and in the midst of an exercise as I was daydreamingly making “rolling” moves with my arms she dropped down into a push up on the pool’s edge so she was in face and yelled. “Faster, faster, faster.” Whoa? What happened to “do your best?” She obviously noticed I was not doing my best, which was appreciated, and funny as heck. My journey to health has definitely been full of waves, and even a rip current, but I keep on splashing. I am healthy, and my lymphedema has amazing improvement.
Help me raise money for Stomp Out Lymphedema!
During the month of May I’ll be walking a Virutal 5k to help the National Lymphedema Network raise money for lymphedema education and awareness. I have a very interesting location where I’ll be walking. I will have to pace myself and complete the 5K over a few days, but I will complete it!
Check out my fundraising page for more information and to make a donation. If you’re a lymphedema patient, caregiver, or therapist consider registering to participate!
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!
This is the article for which I had My Abnormal Photo Shoot. In late August, I replied to a Facebook notice shared by the Obesity Action Coalition. Being a member of the OAC has provided many opportunities to share my story, and thus spread awareness about lipedema and lymphedema.
Does my fat make you uncomfortable?
According to the article that is YOUR issue, not mine. I knew this already, but I admit I misunderstood the article concept as originally told to me: “story about the experiences of those with physical differences—and how, on both a societal and individual level, we can overcome negative or prejudiced responses.” I thought the article was going to focus on those of us on the receiving end of the negative and prejudiced responses. Through my own sessions with a psychologist, I learned I cannot change other people’s behaviors, I can only control my own reaction. To my pleasant surprise the article’s focus is on the response people have when they see a person with a physical difference. It is a refreshing change for the discussion to address why some people have such adverse reactions to ME, since it is usually just accepted that it’s normal for people to act in such ways towards people who are abnormal. And yet, it’s not normal. Not everyone who sees me has a negative or prejudiced response, if that was the case I would not have so many supportive friends. So what does prompt the negative response?
The theory discussed in the article is that people’s negative and prejudices reactions towards physical difference is rooted in an immune response and survival instinct protecting against disease. Interesting idea for sure! And does go along with the idea that people project their own insecurities towards me. The personal stories shared tell of instances for which we have experiences negative reactions based on our appears, mine included the now famous “check out them cankles” incident. It is inspiring that the other individual profiled in the story have the same positive attitude and outlook as I do and the hope that by sharing our stories we can help others.
Research suggesting that prejudice is a flexible trait abounds — and simply being aware that it’s not fixed can significantly reduce discriminatory behavior. Accepting that we all hold negative associates and becoming aware of the one we automatically make are also critical steps in the process of counteracting our biases. So, too, is encouraging people to talk about their negative perceptions.
My abnormal appearance is beneficial in life, it serves as a screening process. If people do not want to get to know me because of my looks, their loss. Now sure, it hurt when I experienced weight bias in the workplace but obviously that was not a company whose values align with mine.
Leave me a comment:
Have you read the full article? Share your thoughts.
Does my appearance make you uncomfortable?
Have you ever experienced a negative or prejudiced reaction to your appearance?