At age 20, Amanda Sobey was diagnosed with Secondary Lymphedema. Since then she has faced many challenges: mental and physical but also financial and social. Her story of working hard and doing everything possible to live a normal life is truly inspiring – this story recounts the darkest and brightest moments of a patient battling Lymphedema.
I had been living in Vancouver, British Columbia, for a year when there were two situations that occurred within one week that contributed to my condition. Firstly, I had the strangest mosquito bite on my right thigh, which may have been a parasite known as Filariasis (doctors refused to test me, thereby giving inconclusive evidence to support this theory). The second situation was a traumatic event in which I was physically assaulted at random.
After the assault, I was left with multiple bruises and blood in my urine. I was unable to put any pressure on my right foot, which made me think I had sprained my ankle. I used Rub A-535 and a tensor bandage to, hopefully, try and remedy the situation. After three weeks of limping around, I decided to take off the tensor bandage and take a closer look. Instantaneously, my foot swelled right before my eyes. I called the doctor immediately who referred me to a Lymphatic Specialist. The specialist performed a lymphoscintigraphy test, in which they injected radioactive serum between my toes. Once the results came in he flatly said, “Your lymphatic system is compromised”. He continued to inform me that the condition is known as Secondary Lymphedema (LE). In a short, lowered, voice he said there was no cure for my condition and I would need Manual Lymphatic Drainage (MLD) once a week for the rest of my life. He handed me a prescription for compression stockings and walked out of the room.
“Over the following four months I lived in complete denial.”
I began to self medicate with alcohol, as it helped me detach from the reality that my leg was completely engorged and puffy like memory foam. I wanted to believe that it was all a bad dream and that I would wake up one morning and the condition would disappear as fast as it came. Nonetheless, it was no dream: I was permanently disfigured and there was nothing I could do about it.
Over the following years, I found myself obsessing about my condition. It affected me, daily. There was not one area of my life that remained untouched. It affected my self-esteem, mental well-being, physical appearance, wardrobe, footwear, and my career. I was left feeling deformed, ugly and hopeless.
One day, I developed the courage to get fitted for compression stockings. The process was exhaustingly awkward. I couldn’t believe at the age of 21 I had to wear “medical equipment”. I felt it was embarrassing for someone like me. It took multiple efforts to figure out what styles, brands, compression grades, and sizes were appropriate for me. Considering garments were expensive and were not covered by health care, I had to learn, very quickly, as to what worked for me and what did not. I experienced bunching behind the knee, rolling of the top band, complications putting them on and using too light of a compression grade. These were some of the issues I had to deal with. Thankfully, I had a very patient garment fitter who helped find the perfect fit, allowing me to turn a negative situation into a positive one.
“Now, I wear compression garments all day long, every day, and at night time too!”
It took several more months to build up the courage to find an MLD therapist. I experienced three visits, with three different therapists. The therapy left me disappointed and frustrated, as it was ineffective and expensive. I almost gave up on this form of therapy until, by fluke, I managed to find an amazing therapist in Winnipeg, Manitoba. It was this experience that changed my opinion of MLD and taught me how to properly “wrap” and perform self massages.
Over the years, I began to develop a passion for homeopathic remedies and Chinese medicine. I read many books and researched anything that involved the lymphatic system. I visited numerous holistic centers, as well as eastern and naturopathic doctors. I learned tips and tricks on how to manage my condition, yet nothing seemed to make the swelling go away.
In 2005, I wed my long term boyfriend and gave birth to our first child. The thought of the responsibility of caring for a child caused a panic inside me, urging me to start taking better care of myself. I began to exercise regularly and focus on eating healthier. A clean diet and regular exercise helped me cope with the excess fluid. After the baby was born, my leg grew increasingly firm and became more difficult to reduce the edema. I believe I was exhibiting signs of Stage II Lymphedema.
In 2007, we were blessed with our second child. I now had an infant and toddler to take care of while my husband traveled, for work, three-quarters of the time. Dealing with a colicky infant, a fast-paced two year-old, and an absent husband, did not leave me much time to focus on my health. My marriage deteriorated and I had to make the decision to file for divorce.
I moved back to my hometown, Winnipeg, Manitoba, with my two boys and I started to rebuild a new life for us. Being a full-time single mom was incredibly exhausting. I was uninterested in taking care of my LE. I only had the energy to focus all my time and attention on my sons. I look back now wondering “how in the world did I manage?”.
After a difficult year of transition, I began to address my health again. I tried different diets and lifestyles, running, swimming, soccer, MLD and hot/cold therapy. Regardless of my efforts, in 2010 my leg was at its fullest and heaviest to date. For two full years I gave up hope for any improvement in my health. All my efforts stopped and I focused on other things.
By 2012, I had had enough. My attempt to ignore my LE was not working. Around my busy parenting schedule, I got back on track with my MLD therapist. I started to use a compression pump on a regular basis. I took advantage of other therapies such as the use of a microcurrent machine, an inversion table, a poultice, reflexology, hot/cold therapy, various skin oils and exfoliants.
I purchased four brand new stockings and a set of compression bandages and committed to wearing my stockings every day and wrapping every night. The endeavour was exhausting and financially draining. However, it did stabilize my symptoms, but nothing seemed to truly reduce my LE.
In 2016, I noticed that my mobility was becoming impaired and my skin was hardening and appeared to be buckling under the heaviness of my leg. I was exhibiting symptoms of stage III LE. I had lost hope. I believed my vision to be healthy and all my efforts were for nothing!
Depression tightened its grip on me; I lost my job and became bedridden for months to follow. At that moment, I recognized that I could not live my life this way anymore. I had to take care of my kids, they needed me. I had to take care of myself… but how?
It took all of my brainpower to convince myself that I had the tools and knowledge to figure this out… once and for all! Every day, I gave myself small challenges to rebuild my strength, mentally, emotionally, and physically. I started to drink more water. I concentrated on watching what foods I ate and how they affected my leg. I incorporated light exercises on a daily basis to keep moving. Slowly but surely, my health began to recover.
I also began to understand how to use compression therapy, using
“I felt my pants loose around my leg. In this very moment, I realized that I was starting to make a difference with my Lymphedema.”
Bit by bit, all my hard work was starting to pay off. On October 21, 2017, I reached a personal best when I entered an All-Natural Bodybuilding Competition in the Figure Category. I entered the competition for a couple of reasons. The first reason was that one of my girlfriends encouraged me that I should. Secondly, I felt it was a good goal for someone like me, who had been physically disfigured, to compete in an industry where they judge you on physical body symmetry. To my disbelief, the judges did not notice my afflicted leg. I received two trophies that day; one for 1st place and one for 3rd place!
As a result of all I have been through and in dedicating my life to become an advocate for creating awareness about Lymphedema, I have received my certificate as a Certified Personal Training professional, helping others reach their physical goals as I have done and continue to do so. With respect to LE, my goal is to help others reduce their edema by providing the necessary tools in fitness, nutrition, self-care, medical equipment and education while understanding that ordinary people like us, living with Lymphedema, are stronger together. #ifeelbetter