My name is Amy Beaith. I am from Edmonton, Alberta, Canada, married with two little girls, Iris and Sage ages 3 and 1-1/2. I have primary lymphedema in both legs and was diagnosed at age 6. Back then, it only affected my left leg. It appeared one afternoon while out playing in the playground with the other kids and by the time I got home that day, my leg was so swollen I was walking with a slight limp. I don’t really remember much about when it happened other than I didn’t notice and it didn’t seem to hurt at the time. So begins my lymphedema journey.
We lived in a small town in Ontario and not much was know about the disease back then in the 1980s and still really isn’t managed well in Canada today. Through my childhood years we managed my condition by getting me involved in competitive swimming and wearing compression daily and bandages at night time. As a child growing up with lymphedema, it was hard. All I could see was that I was different from the other kids and I was really self conscious about my appearance. Through childhood and into my teenage years I went through fluctuations of acceptance wearing shorts and being okay with my crazy swollen leg and denial hoping it would just go away one day. By the end of high school, I had a healthy management program in place with lots of swimming, biking, playing school sports as well as eating healthy. University took it’s toll on me – late nights up with friends, poor food, and lots of sitting in class and studying. That’s when the cellulitis infections started. Before that I was very lucky and had only had 1 infection at age 7. The infections became frequent and I realized I had to take better care of my leg or things might get a lot worse. It was in my 20s that I first learned about lymphatic massage called Manual Lymph Drainage and was keen to try it out. After having a few sessions, I was hooked and it became a regular part of my routine. I graduated with a Honours Bachelor of Arts and went on to get a Masters in Information Studies and work as a Medical Librarian.
Next comes the second part of my lymphedema journey, the swelling of my right leg.
In my early 30s, my right leg began swelling on and off. After a few doctor visits and tests they confirmed that I had lymphedema in my right leg too. Once I found out I had a deep sense of dread and was sad and angry. How could this be happening to me I thought? What was I going to do? Eventually after a lot of soul searching, yoga, and dog walking my puppy, which helped a lot, I heard a little voice in my head that said it’s going to be okay. It was also around this time that I met my future husband. I was so wary of what he would think of my legs and the swelling issues I had with them. He once told me years later that he never noticed it or thought of it as a problem. It was just part of who I was and that he liked me for who I was. He also saw that I tried to do everything I was interested in doing and didn’t let it stand in my way which was inspiring to him.
The turning point for me that helped me become ‘chronically motivated’ was after the birth of my second child. Through my two pregnancies I was able to go for intensive massage drainage sessions as well as go on a regular monthly basis which helped control the swelling a lot.
My little girls who are full of light and energy, motivated me to be a good role model for them and show them that you can live well with a chronic disease like lymphedema. I wanted to be a positive example and show them that it’s okay to be different and that it’s important to love yourself as much as you love others. To fill up your cup so you can serve others. That last sentence is my mantra for motivating myself to go swimming each week, to get on the bike, to keep putting on my stockings every morning. It’s not selfish to make time for self-care, it’s crucial to being a good person to yourself and others.
I started swimming/biking again several times each week, making regular massage therapy appointments not just when my legs felt sore, reaching out on social media to find other lymphedema thrivers, and I kept asking for answers. I was no longer okay with the answers from health professionals here that I just will have to live with it. I wanted to know what was happening in other countries in regards to treatment. I put on my former Medical Librarian hat and began looking into the research and asking questions. I’m happy to say that I now have a lymphedema therapist and family doctor who are supportive of my quest for better treatment and that I recently found out that I am a candidate for lymphatic surgeries and will be pursuing this in the near future.
Today I’m motivated by my kids but also my passion, which is herbalism and herbal, plant-based skincare. I’ve always loved plants, growing up foraging for berries, apples, etc. in our woods, then working at greenhouses and farms as a young adult. This plant passion started to take root in my late 20s when I began dabbling in making my own skincare products to create all natural products that would help me manage my lymphedema. I was unhappy with the green choices that were out there and there weren’t many 15 years ago. At the time I was still working as a Medical Librarian and this was my creative outlet. After my kids were born, this hobby became my passion. I was able to start a little herbal skincare company that is called PLANTiful which focuses on detoxifying skincare products. Lymphedema has definitely played a role in my life and it was when I let it guide my choices and my passion, that I found more happiness. I love having my own business so that I can set my own hours, work at my own pace. It’s helped in the management of my condition a lot.
Finding a passion for me was like a light being turned on. It helped bring me out of the darkness, accept my lymphedema better and when I let it guide me, I was able to use it as a driver for my passion. Find something that motivates you, brings you joy everyday. It might take time and it might not be obvious, but keep looking. Don’t give up.
Life with lymphedema is hard. It can feel like an uphill battle sometimes and something you need to work at everyday. I know there are lots of people living with lymphedema who have gone through various stages like I have of acceptance, denial, seeing the swelling get worse and hopefully get better too. Reaching out to the instagram community and finding other lymphedema thrivers, was a game changer for me. It helped in so many ways in terms of finding people who can relate, to getting ideas for new garments, comfy lymphie friendly shoes, to learning about surgical options, and getting an inspiring quote that helps motivate me for the day. Keep asking questions and keep looking for health professionals who can support you. It makes such a difference to have a lymph team at your side and online.
My top 3 lymphedema helpers I can’t live without are: my Medi custom compression garments. They stay up well all day and last a long time. My Jobst relax garments for nighttime. They are something new I have been trying and they have been a lifesaver to have something that’s not too hot for sleeping. And lastly, my deep water aquavit classes are my favourite way to exercise my lymphedema legs. It’s refreshing to be in the water mentally and physically. The exercise and the water pressure really helps move the fluid along.
My best lymphedema tip is to: switch to a vegan and gluten-free diet. I switched my diet from being mostly vegetarian with whole wheat options to vegan gluten-free about a year and a half ago, and it made a big difference in my swelling as well as energy levels. My legs dropped quite a bit in size as well as got a lot softer too.
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