is a new post series i'm going to feature as long as i have volunteers willing to share their story and help spread awareness to whatever they may be living with. We all live with something and have all felt alone in our struggle at one point or another, and I want the world to know us. Know who we are, and how hard we work to stay healthy and happy and positive in our struggle.
If you would like to be featured- please email me at email@example.com
and include your story, and if you want, an image of you kicking ass at life =)
Please let me know if you want to remain anonymous!
No story is too big or too small
SO, to get this first week of warrior Wednesday started, I will share my personal journey with Lymphedema, and how I've come to my real diagnosis of a rare primary form called Lymphedema-Distichiasis Syndrome. Sometimes the most important thing is to be your own advocate and do your research. Especially when what you have isn't common.
What is Lymphedema?
Lymphedema is swelling. It can occur in your legs, arms, groin, abdomen, etc. It is due to either being born with a faulty lymphatic system (Primary), or due to damage or removal of lymph nodes (Secondary).
What is Lymphedema-Distichiasis Syndrome?
This is new to me. So bare with me as i'm still learning. I've had extra eyelashes since puberty and always just thought it was random. But recently found out it was related to my swelling too! Lymphedema-Distichiasis Syndrome is a rare form of primary lymphedema. Its a genetic mutation of the FOXC2 gene that i inherited as a autosomal dominant trait. Basically meaning i was born with it. With Lymphedema, it usually presents itself at birth, or during puberty. Or in rarer cases like mine, in adulthood.
The swelling started sometime in 2010 (age 20). It started in one ankle and soon was both ankles. It slowly spread to both legs below the knee. For a while [as anyone will contest to] the doctors didn’t know what it was. I had my kidneys checked, blood drawn, and finally after about 8 months a vascular surgeon told me it was Lymphedema. In June 2011 I got some compression stockings (knee-high... aka my sexy stockings) to help keep the swelling from increasing, and from there i tried to learn my options. I got set up with a pump, I zip myself in and it fills with air from my feet to mid thigh and then decompresses and repeats.
In January 2012 I went to physical therapy at Faulkner Hospital. My legs decreased in size dramatically- in some spots up to 30% decrease in size! my therapist then measured and fitted me for custom compression stocking and toe-caps. These have helped me greatly to maintain the reduction i achieved during therapy to this day.
Lymphedema can be both physically and mentally draining. I never thought I would be self conscience of my muscular calves. It’s life altering. I can’t sit for too long in a chair and I can’t stand for too long. My legs are heavy- I don’t walk as fast as i use to and I find myself having to ask people to slow down because I can’t always keep up.
I can no longer enjoy simple little things like i used to. Wearing compression stockings has saved me and ruined me. It keeps my legs smaller but i miss barefoot walking and being able to dip my toes in the water, wear sandals… Wearing Heels… I’m a girly girl and LOVE shoes- but now its all about whats comfortable and I have to consider how my feet will swell in my shoes- obviously something I’ve never thought about! Even pants-jeans, dress pants, leggings etc. Some wont go over my calves! I have taken a love to yoga pants because they stretch and fit comfortably and don’t require a bigger size for my calves making the thighs too big (Also never thought i’d hear myself say that my thighs aren’t fat enough for my pants! ha!) Going to the beach, or anywhere my legs were showing was hard. I didnt wear shorts for years because i thought i looked stupid with my stockings and shorts.
Summer 2015 I said f*ck it. I bought shorts. TINY shorts, and wore them. I loved it. I loved the confidence i found again, and the sense of achievement and pride i felt in myself for embracing who i am and for accepting this beautiful body i have in this life. Is it perfect? Nope. But it's mine- beautiful cankles and thick calves and all. Everyday is a different struggle but for now, i know that i am me. And that's enough. Lymphedema-Distichiasis is something i have but it's not who i am and I'm done letting it define me and hold me back from experiencing all this life has to offer. This is my life, and I choose what defines me, and it's not this.