The following was submitted by Jessica Sousa (@beardette39):
My name is Jessica Sousa, I am 31 years old and I live in the amazing state of California,
specifically the Monterey bay area.
What has your experience been with lymphedema?
Earlier this year I was diagnosed with Primary Lymphedema in both of my legs, yea! I am actually excited for this diagnosis as I suspected I actually had COPD.
What has your experience been with the health care system/doctors?
I had been actively avoiding doctors for the last several years as my previous doctor
could not see past my weight.
I had been actively avoiding doctors for the last several years as my previous doctor could not see past my weight.– Jessica Sousa
I went to her a few years ago (2015 I believe) asking about the swelling in my legs, she told me it was most likely edema and she wouldn’t prescribe compression stockings as she assumed I wouldn’t wear them.
She also told me I needed to lose weight… For the record, this was always what she wanted to talk about during our visits. I was actively training for half marathons, so I was working out and eating well consistently but I wasn’t losing weight. At the time I didn’t realize I was in the beginning stages of exercise bulimia and anorexia tendencies, which is something my doctor supported. I currently see a therapist who specializes in eating disorders and she has helped me tremendously.
After this appointment, I decided to never go back to that office as I didn’t feel like my doctor was listening to my concerns, so I didn’t see a doctor for several years.
In 2017 I was laid off and lost my health insurance. For the remaining 2017 and all of 2018, I didn’t have health insurance and with my luck I developed bronchitis 3 times in 2018. My ankles and feet almost doubled in size due to swelling. For as long as I can remember my legs have also been large and in charge (so I never was concerned about them) however my left leg developed what I call a dent which also was causing what I assume is my muscle to be pushed out. Also during this time, I gave up working out as I was dealing with the anger of my exercise bulimia. Between the swelling, my dent, bronchitis and my therapist insisting I practice self-care, I finally was determined to get health insurance and see a doctor.
I got an appointment with a doctor I have never seen before and I hoped they would listen to me. To my surprise, she was someone who was part of my half marathon training. Because we had trained together before, she knew that my swelling was not due to COPD or my lack of working out and she suspected it was Lymphedema. She had me complete an ultrasound on my legs and other tests to confirm I didn’t have COPD. My test results confirmed I had Lymphedema.
I was instantly referred to a Lymphedema specialist and I just love her. She not only had compassion for me but she also guided me on how I can best manage my Lymphedema without judgment. She even suggested I may have Lipedema and I am currently waiting to see a specialist at Stanford Hospital (December 2020 baby!).
I was instantly referred to a Lymphedema specialist… She not only had compassion for me but also guided me… without judgement.– Jessica Sousa
How does lymphedema impact your everyday life?
I currently wear compression stockings every day and find interesting outfits to wear with them. I recently received a Flexitouch pump and use it as often as my schedule allows. I have also started working out again, including water aerobics, while also working hard not to get back into old habits.
In all honesty, the only struggle I have had with Lymphedema has been the fashion component, the compression stockings don’t scream trendsetting but with each passing day, I become a little more comfortable incorporating them within my style.
I do wish people would come up to me and ask questions regarding my legs and/or compression stockings as I am not embarrassed by my condition. I actually enjoy talking about it when I can and want to inform as many humans as I possibly can. I try to find creative ways to insert a conversation about Lymphedema when I can, usually its some type of joke about my compression stockings.
I do wish people would come up to me and ask questions… as I am not embarrassed by my condition.– Jessica Sousa
Have you ever met anyone else with lymphedema?
Unfortunately, I have yet to meet someone in person who has Lymphedema but I am definitely looking forward to the day I do. I wish to have a community I can rely on when I need help and understanding around Lymphedema.