December 2018

No Excuses: My Journey with Lymphedema

Amanda Sobey

When Amanda Sobey was diagnosed with Lymphedema, there was limited information available about treatment and the resources suggested to help maintain her condition were expensive and did not provide a viable solution for her. Initially, Amanda was traumatized and thought there was nothing she could do about the increased swelling in her right leg; but through perseverance, education and medical compression therapy, Amanda found a way. Here’s her inspiring story.

I was diagnosed with lymphedema (LE) in 2003 after having a lymphoscintigraphy test. The doctor told me I needed Manual Lymph Drainage (MLD) and to wear medical compression stockings for the rest of my life. I was in complete denial and did not take any of the doctor’s advice.

Everything changed for me. None of my friends could understand or provide the support I needed to snap out of my devastated mindset. My clothes did not fit, and I resorted to wearing bagging pants all the time. My shoe size also went up to compensate for the swelling in my right foot. I felt deformed and ugly. And, I lost my self-confidence.

Eventually, I decided to purchase compression stockings. It took some trial and error, but once I found the right fit I regretted waiting so long. Sampling different LE garments was a critical step in my satisfaction with them. Some garments would bunch behind my knee causing painful heat pimples, while the silicone band at the top of others would fold and pinch my groin area. Once I found the right brand and compression strength, it was like a dream, and I wore them as consistently as possible.

It took several years before I finally decided to try MLD and finding the right massage therapist took some time. The first few therapists I tried left me feeling unsatisfied. Without medical insurance, I was quick to give up on the whole idea. After a few more months, my body was telling me I needed something more than just the stockings, so I committed myself to finding a therapist that had experience with lymphatic drainage and was someone I felt comfortable with. Finally, the fourth therapist I tried worked for me. She was located in Winnipeg, so I couldn’t always get the service I needed, but at the very least I knew that MLD was effective.

The Journey Back to Healthy
Since my diagnosis, my life has been in constant flux. I became a mother in 2005 and had another child in 2007. Becoming a mother has become my greatest accomplishment. That being said, trying to take care of others is challenging enough, not to mention the added demands of having LE. In 2009, I became a full-time single parent. After a difficult transition year, I finally began to address my health again. I tried the elimination diet, 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. By 2012, I had enough. I was willing to try anything, and I did.

Around my busy parenting schedule, I got back on track with my MLD therapist, the compression pump, micro-current, the inversion table, poultice, reflexology, various skin oils and exfoliants and even a rolling pin! I knew my compression wraps were effective, so I focused on perfecting my techniques and products. I purchased four individual stockings and a set of bandages for compression wrapping and committed to wearing my stockings every day and began wrapping my whole leg at night. This all helped stabilize my symptoms, but nothing seemed to truly reduce my LE.

I fiercely carved out time to maintain my LE care regime. It was the same routine everyday non-stop. After one year, the non-stop circuit was taking its toll on my body. 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 lost hope. Depression tightened its grip on me, again. I lost my job and became bedridden for months to follow. But, I did not give up.

Finding an Effective Treatment Routine
I evaluated the treatments I had tried over the years and finally figured out what really worked for me – compression stockings, compression wraps, massage, skincare, a good nutrition plan, exercise and one critical component that I had overlooked – stress management.

Compression has helped my condition immensely. It is such an important tool to help control the swelling. It is critical to find a qualified garment fitter, as well as stockings that fit appropriately. If the garment is too tight, it can be damaging to you. If it is too loose, it will be ineffective. I can attest that once you find the right garment, it fits like a glove and makes a world of difference.

I committed to drinking more water. I made a list of all the foods that worsened my condition. That list was long and included things like bagels, deep-fried foods and fruit juice. Lastly, I revamped my fitness plan and got more active! Every day, my physical and emotional health began to recover a little more.

Following this treatment routine, I achieved a personal goal last year by registering myself into an All-Natural Figure Bodybuilding competition. I knew there was a chance that my leg could swell on competition day, but I committed to performing because I accept who I am, the things that I can change and the things that I cannot change. I received two first place awards that day!

Lessons Learned
My advice for anyone that is recently diagnosed with lymphedema or struggling with this condition is to know that it is not hopeless. Do not let the words “no cure” devastate you. Looking back, I could have done so many things to prevent my condition from worsening. However, I was mentally paralyzed by “no cure,” and I did not take care of myself. My negative thoughts prevented me from doing the basic things required to maintain this condition.

My goal for the New Year is to continue on my journey of health, wellness and mindfulness. I plan to compete in my third bodybuilding competition in May 2019, and I will continue to spread awareness about lymphedema and offer support and inspiration to others.

Christina Rotondo commented on Jan 16, 2019

Reply

What an inspiring story! You are beautiful.

Amanda Sobey replied to Christina Rotondo on May 10, 2019

Thank you so much! I appreciate your comment!

sue hansard commented on Dec 13, 2018

Reply

Thankyou for sharing .Your approach is inspiring and positive. It will help so many I'm sure.

Amanda Sobey replied to sue hansard on May 10, 2019

Thank you so much! I hope to help as many people as possible!

Nicole Camloh commented on Dec 12, 2018

Reply

Wow! What an inspiring story! Congratulations! I, too have lymphedema, primary lymphedema. I inherited it. I have been living with it since age 15. I am currently 49. I am new to the Danville, Indiana area and would like to start exploring compression garments again. I have tried them in the past, but found them to be extremely uncomfortable. Any direction you can provide would be most helpful and appreciated. All the best to you as you continue on with your health journey!