Two Strong Women, One Focus: Lipedema & Lymphedema Awareness
Meet Susan O’Hara of Legs Like Mine!
Susan is a bright light in the Lipedema Community. She has written and published two books: Aqua Therapy for Lipedema and Lymphedema and Jeans on a Beach Day, where she wears and features JunoActive plus size swimsuits. Susan always has her next project on deck, so be sure to watch for more of her publications! We were delighted to meet Susan and spend a day with her at our headquarters facility earlier this month. We learned so much and are thankful for the insights she shared on clothing needs for the Lipedema Community.
Journey
JunoActive: Tell us about your journey with Lipedema.
Susan: That's really interesting. So, my legs were actually just regular plus sized legs until I went on fertility treatments with my son and that's a hormone that is the trigger for Lipedema to start. So, how did I find out? I had a leg problem. I was taking my Girl Scouts to New York City on a walking tour and one of my feet was just jacked up. So I went to a podiatrist who sent me to a brace company and the woman there looked at my leg and said, “Who is treating your Lipedema?” and I was like, “My what?”. I had no idea what that was but that at least gave me the nugget to go back to the internet and start searching. And it led me to some pages, just like I have now, of people showing pictures of their legs. I showed pictures of my legs to somebody and she's like, “Oh, you've got Lipedema”. So it was all about somebody who had the courage to over-share their story that helped me figure it out. Now, I pay forward by helping other people.
Fitness
JunoActive: Tell us about your exercise routine.
Susan: Oh my gosh, I love my exercise routine! So I hop in the pool. That's typically what I do. I do some serious deep breathing before I get in. I do this (deep breathing) several times during my swim too. So typically, I'll walk a few laps first to just sort of warm myself up. I always have stupid crazy heavy metal from the 80s blarin’ because it just helps you get all jazzed up! I like the deep water stuff: cross countries, high kicks, scissor kicks. I'll do a lot of just the athletic kicks and stuff like that. American crawls too, but I try to do more stuff where my feet are vertical because I get that graduated compression. I try to do it for 30 minutes every day if I can. And then I do what's called the “lymphatic break”, which is different from just regular swimmers, but it’s super helpful: so I do the deep breathing, and then I'll do this massage to squish the fluid up to the belly. And then, by the time you get out of the pool, you really have to go to the bathroom because you've squeezed a lot of fluid out. That pool is your best friend. I used to walk, I did a half marathon a few years ago, but my knees dislocate so much now that I don't trust it. The water is gentle on your joints.
Favorites
JunoActive: Do you have a favorite JunoActive product and why?
Susan: Absolutely! The AquaSport Crossback Aquatard. I think it looks pretty good. You feel confident in it. It stays in place when you're exercising and nothing falls out. “How do I look in this bathing suit?” is not the first thing on your mind anymore, and that's all you want. You just want to get into the water. And, I think for my ladies, they're going to really dig those Capri Swim Pants because they're looking for even more coverage in the wintertime. I think I'll wear them in my pool because it really does make a difference in how much heat you retain when you're in the water.
Inspiration
JunoActive: Aqua therapy has been important to your fitness goals. Tell us about your book Aqua Therapy for Lipedema and Lymphedema and what inspired you to write it.
Susan: The first time I went to the YMCA and went to water Zumba, I couldn’t believe how uplifted I was. Whenever I left that class, I was surprised at what I was capable of doing in the water. And one of the questions I get all the time is, “What's the best exercise for Lipedema?” and I tell people to “Get in the water, get in the water, get in the water!”. I learned that there aren't very many books about Lipedema out there right now, and nothing married up the compression strengths–comparing the compression strengths of garments to the depth of water compression and how much (total) compression you get in the water. So I married that up as a table, and the doctors have gone crazy for (that information). I just wanted to show people some simple things you can do to move so they can make a difference with their bodies.
Advice
JunoActive: Are there any words of wisdom or advice or do you have an inspirational message for women like you that you’d like to share?
Susan: I would say, don't be afraid to wear what you want to wear. Find clothes that fit you and know that you're still beautiful. Stay active. Don't ever, ever go one day where you don’t get out of bed because that can turn into a serious problem for people. Get out of bed and do stuff, stay active, stay with people, and find what you were meant to do and do it. Don't let your weight or your body shape hold you back. I know so many people who tell me the story about who they used to be. They are brilliant women but, they just have given up on life. So don't give up. I think that's the other thing. You still have value on this Earth. Even though you may be shaped differently than other people and you have trouble walking. So, find your value and go for it!
Meet Pattie Cornute of Lipedema Fitness!
Pattie advocates for the Lipedema Community in her truth that “Getting & Staying active with Lipedema is Critical.” Pattie is unstoppable, and once she regained her mobility and strength after her diagnosis in 2007, she was inspired to help others do the same through the creation of Lipedema Fitness. She is the proud creator and organizer of the Lipedema Triathlon and is celebrating the successful completion of the 8th annual event that just took place on June 24!
Journey
JunoActive: Tell us about your journey with Lipedema.
Pattie: I had my daughter in 2004 via C-section. In the hospital recovery room, one of the nurses saw a mark on my leg and asked me if I had ever had Cellulitis. I was like, Cellulitis? I didn't understand. I thought she meant Cellulite. She explained briefly and it was left as I should talk to my primary doctor about it more. That was the first mention of something being possibly different about my legs.
I had always been active, even right up until I went into labor. Growing up I was plus size on the bottom half of my body, but several sizes smaller on the top, I had normal-shaped legs–they just looked like a bigger version. But after the birth of my daughter, my lower leg shape changed, they became column like (no definition from knee to ankle), with a pronounced cuffing at the ankle, with my feet seemingly unaffected. I started retaining a lot more fluid in my lower legs, and would later learn that Lipedema shows up during times like this (puberty, pregnancy, and menopause). For years, before I even had my daughter, I just didn’t understand why my body did not respond to the efforts I was making. I was at the gym a lot. (I thought) “I don't eat enough food to look the way I do. I was baffled and would ask my doctor repeatedly what was wrong with me, telling her of my workouts, and she said, “I know, I go to the same gym, and I see you there when I get there, and I see you still there when I leave.” My doctor would test me for whatever I asked her about possibly being the issue, like my kidneys and my thyroid; anything I could think of, she'd test me. And every test would come back and she would say, “Everything looks great! You're all good.” And I would reply, “That’s lovely. But I still don't understand what is going on with my body.”
One day I just started Googling big legs, and hit show images, and when I saw a pair of legs that could have been mine, I clicked on them. Attached to the image was a blog by Patricia Washburn that was about all about Lipedema. I went through every post she had written (and thought) “Wow, this is exactly what I have!”
Through one of the links in her blog I found a Certified Lipedema Therapist in my area, drove 45 minutes to go see her, and within 10 minutes, she said, “You've got stage 3 Lipedema, and because it took you so long to get diagnosed, you also have secondary Lymphedema. When combined, it's called Lipolymphedema.” I was so happy, finally I thought, "I know what it is!” Two seconds later, she said, “There's not much we can really do for Lipedema.” She said complete decongestive therapy treatments would get as much fluid off as possible and then I would be fit for medical grade compression. That process would take about 3 months, and once I had my compression I was on my own.
(At that time) we were told diet and exercise wouldn't help with Lipedema. And in fact, they thought exercise might make it worse. And we all listened out of fear. I sat in my house with my legs elevated to help minimize swelling, stayed in the air conditioning to also try to minimize swelling, and I basically watched my life and my family just go on without me.
For the next couple years my physicality declined rapidly, without the workouts I was so used to, I lost nearly all my mobility and strength. In 2013 is when I finally said, “That's it, I'm not listening to nothing I can do anymore. I'm afraid I'm going to die if I don’t do something.” Nobody should live in fear like that. So one day I asked my husband, “What's the workout of the day?” He was a CrossFit instructor at the time, and had a weekly Saturday class where he trained martial artists and MMA fighters. “Why do you want to know?” he asked. I said, “Because if I fall down, I need to be able to get up on my own.” He replied, “We can do that.” And we began a very modified version of CrossFit.
I say that CrossFit saved my life, and I mean it wholeheartedly because doing those crazy workouts make you feel strong; not just physically but emotionally. That was the biggest thing I learned. I could improve my emotional wellbeing while improving my physical wellbeing – it went hand in hand.
By taking these steps, even though it was very modified in the beginning, it was taking action against Lipedema. (Lipedema) doesn’t get to have all the say in my body. I get to fight back, and man, that is huge emotionally.
Fitness
JunoActive: Tell us about your exercise routine.
Pattie: First thing in the morning I do some lymphatic yoga and fascial stretching to get my body loosened up and then I hop on my vibration plate. I will do 20 minutes total: a seated version, and a standing version, and when time allows I’ll hop in my compression pump for an hour. Finally I massage and lotion my legs and put my compression on. My go to way to stay active during the week are Peloton rides on my stationary bike that I got off Amazon over the pandemic, it is pretty inexpensive monthly fee and so much fun picking music to ride to. I also do things like mini Tabata workouts. Tabatas are my favorite workout because its 20 seconds of work followed by 10 seconds of rest, for eight rounds, which is a total of four minutes. You can do that for any movement, like pushups, squats, kettlebell swings, or wall balls. Anything you want. I feel like I can do anything, knowing I have 10 seconds coming up for a rest. Then we have our ongoing CrossFit workout on Saturdays, you can see what is involved in those each week, as I have been sharing them on social media for the past ten years.
Inspiration
JunoActive: What was your inspiration to start the Lipedema Triathlon event?
Pattie: When I first started training in 2013, I did a 5K in May, only a few months
after we started training again, and then did another one in October (for Lymphedema). My training mates used to do annual Mud Run 5K (obstacle race events), and I would go cheer them on. One year they said, “You’re doing the next one with us!” I was scared but I signed up, I thought it could be my annual event that I train for, because I had been giving myself annual events to keep me going, like motivation. But the year after I did the first Mud Run, the organizers stopped hosting them, and I thought, “What am I going to do now? What’s going to be my goal this year?” I went looking for a Lipedema 5K and couldn’t find one, couldn’t find any event in honor of Lipedema. So I said, “What if I create a Lipedema 5K”? But when I thought about how many lipedema patients use the pool for movement, it went from a 5K to a Triathlon really quickly. This is our 8th year of the Lipedema Triathlon! It’s a virtual event.
Locally, the YMCA hosts my training mates and I. We all head over to the Y at 9:00 AM and do 30 lengths of the pool for our 750-meter swim. And then we do a 20K bike. I do it on the stationary bike, and my husband and a few of the others go outside on a plotted course through the park. Then you can do the 5K portion outside in the park, or on the indoor track, or on one of the treadmills. I tend to do it on the treadmill because by the time that portion of the event rolls around I need something to hold on to.
A virtual event is cool because anyone can partake from wherever they live, and we say participation is “all or something.” So all abilities can participate in any way they want to. If somebody just wants to do the swim, they can, or just the 5K, or if they want to take the whole month to do the full thing, they can. They can build up to the distances. It is less about the distance and more about the participation.
Finding a group and connecting socially online is everything, Lipedema can be a very lonely condition. And that's kind of what I wanted the triathlon to be–an event that brought us all together, everyone choosing to do whatever they are able to, “all or something,” we want you to do it with us. Because when you do it, you feel so empowered. You feel like, “Wow, I just did a triathlon!” It started as a way to spread awareness for Lipedema and the importance of staying active, but it became so much more.
Advice
JunoActive: Are there any words of wisdom or advice or do you have an inspirational message for women like you that you’d like to share?
Pattie: You're not alone. Finding people who you resonate with makes living with Lipedema a whole lot easier. One of the benefits of Lipedema is the amazing people we have made connections with. Like going to the FDRS conference and meeting people in person–it is overwhelming to be in a hotel full of people who look just like you. You don't have to explain anything. It's empowering.
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At JunoActive, we strive to innovate and evolve our business and are thankful to learn first-hand that women with Lipedema have particular, unique plus size clothing needs. We hope our conversations with Susan and Pattie can help us develop more apparel that will suit the Lipedema ladies and help them achieve their personal fitness goals. We are proud to support the Lipedema/Lymphedema community and their Active. Life. Style.
We are thankful for the time and collaboration with Susan and Pattie to help raise awareness for the Lipedema/Lymphedema Community. Follow their commendable work and inspirational lives on their social sites listed below. By raising awareness, we can help more women get diagnosed earlier so they can seek treatments and slow the progression of the disease. Maybe you or someone you know has legs like Susan and Pattie. Perhaps it’s time to ask more questions and seek more information. Knowledge is power, and with knowledge comes understanding. With understanding, we can be hopeful to live in a world with more empathy and acceptance.
Susan O'Hara - Legs Like Mine
Aqua Therapy for Lipedema and Lymphedema Book
Jeans on a Beach Day Book
Legs Like Mine Website
Legs Like Mine on Facebook
Legs Like Mine on Instagram
Pattie Cornute - Lipedema Fitness
Lipedema Fitness Website
Lipedema Fitness on Facebook
Lipedema Fitness on Instagram
Lipedema & Lymphedema Resources
Lipedema Foundation
Fat Disorders Resource Society
Lymphatic Education & Resource Network