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!
Backstage at The Doctors
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 have Lymphedema in my legs. I will be watch that show hopeful it have will have answers to some of questions. This is one of them and every Doctor I have asked has had no answer to it.. Why can not Dialysis be used on the Lymph node system in the part not working anymore?
I also suffer with this problem. My right leg is totally out of control. I a huge growth on my upper leg and an open wound on the lower that won’t heal (10 years and still going). My left leg is managed with compression wraps.
Hi, Sarah!!
We have a lot in common…I have primary lymphedema in my legs. Swelling started when I was 17 and four years later I was diagnosed after a doctor finally listened to me rather than told me to lose weight. It has been a long journey but two years ago I woke up and thought the same thought you shared: it is my life and the only one I know. It is up to me to make it better. I reconnected with my occupational therapist and took treatment seriously. I was able to lose 13 lbs of fluid in about 6 months and me and my compression garments have never looked back! I have found, similar to what you spoke to, that people can be so miserable when dealing with chronic illness. I have visited various lymphedema support sites and the people affected by this can be so dang negative and hopeless. We have to fight for ourselves! Thank you for sharing you story and being happy at the same time! It is comforting to know that there’s someone out there that I can look up to. Well, figuratively anyway, as I am 6 ft tall and you are not 🙂 Take care!!
Heather
Hi Sarah, I just seen your video, that was on the Dr’s about Lyphodema. My sister-in-law Tina Duplantis, was diagnosed with this disease a few years ago. She is currently in a Nursing Home. I would really appreciate it if you can contact her on Facebook to tell your story and give her words of encouragement, I think she would really love that. Thanks so much and thanks for fighting for people with this disease.
Thank you for sharing the story of so many of us.
Please let me know info on trying to get medicare to pay for our sleeves etc Any help I may give you please contact me. Ridiculous we need these bandages or sleeves& can’t
afford them. Any monetary help would be appreciated with this insurance I was forced to have when turning 65
Hi sarah keep smiling thank for shari ng your story god loves you
Hi Sarah,
You’re a blessing to many out there! I finally got dignosed with Lipedema/Lymphedema in 2008. I had gastric bypass surgery in 2003 and of course lost very little in my lower half. I’m now scheduled for surgery on Nov. 10 in Minneapolis Minnesota. 8 days before my 40 birthday.
You’re story inspired me! Thank you
I believe that I have Lipedema which began at age 18. All the women in my family have the same legs. I’m trying to get my Insurance company to send me to a Fat Disorder Specialist. I have a MRI show fat in my legs and have been diagnosed with lymphedema. How did you get your Doctor to understand the difference and what type of specialist were you referred to?
I was @ deaths door 15 yrs ago with cervical cancer, aggressively intense chemo/radiation, & flat out refused an implant, being just worn out. Didn’t realize the ‘long term after effects’ would tear my body down in such a debilitating way after all these years. Lost my teeth, most of my down there hair, instant menopause, IBS, incontinence, hearing loss, vision impairment. My saving grace was being clean/sober 7 yrs by the time of my surgery.
Lymph edema is my current curse . Developed a DVT broken up with xeralto then on to massage therapy, compression garments & looking for cold weather boot as none of my shoes fit. Receive SSDI benefits but Medicare will NOT provide for medical accessories.>-)
I wear croc flip flops nearly year round, I just try to avoid going out when it snows. I know some people wear fuzzy winter clog crocs but boots are a challenge to find. As for Medicare…please visit http://lymphedematreatmentact.org/ and click on the left side Email Your Members of Congress to send a letter to your Rep asking them to cosponsor the Lymphedema Treatment Act.