Living with Lymphedema
Hi, My name is Tina Jackson and here is my story...
I was diagnosed with stage two Breast Cancer (triple negative) in December 2006. I underwent a bilateral mastectomy (both breasts removed) in January of 2007. Then followed by chemotherapy and radiation that winter throughout the summer.
Shortly after that I developed lymphedema. It was moderate for a while and I was referred to physical therapy and fitted for a compression sleeve, but I only wore it when I flew.
I must admit I wasn’t the most compliant patient. I was frustrated and really hated wrapping my arm especially in the summer. It was too hot, and very frustrating. Then things got worse and I got cellulitis twice in a year and a half. Which I think woke me up to the seriousness of this diagnosis. It was a very uneasy feeling to not be able to help myself or understand why I developed it.
I remember when the swelling finally affected my hand which blew up. I was so bummed I couldn’t even wear my wedding bands. My sister Dee recommended I switch them to my right hand.. That made me feel a little better but I was so angry I couldn’t get the swelling down. There were shirts I couldn’t wear, and I felt a constant discomfort. It was very upsetting. It was affecting my daily life.
Hindsight, I would recommend to anyone who is newly diagnosed to seek immediate help once the swelling starts. I would recommend talking to your doctor right away and being referred to a certified lymphedema therapist. The intensive education and therapy really gets the swelling down and under control and teaches you how to be able to manage yourself. My daughter and I want to share our story so that it can help someone who is in a similar situation. That’s where my daughter Babz comes in.
My daughter is an occupational therapist and a certified lymphedema therapist through the Klose Lymphedema Therapist Certification course. When she returned home from completing the course she got right to work on my arm. The course provided her with the knowledge, confidence and skills to help me get my lymphedema under control.
She treated my arm when it was truly at its worst point. She was determined and helped me to help myself.
Above all, finally I was given the tools to help myself. Learning how to self massage and move the fluid myself was amazing. Everyone should know how to do this if they are struggling with lymphedema like I was. Also I’ve been doing lymphatic yoga with Babz for 2 + years. Yoga with Babz has also been an addition to my success story. And yoga was never something I even thought could help, or that I thought I could do! I hope my story will helps someone to get educated and find a therapist like Babz who’s dedicated to helping us get our lymphedema under control and managed and get back to our best self!!! I call it my new normal!!
Hi, I’m Babz, Tina’s daughter...
When I heard about the lymphedema training I knew I had to do it. I watched my mom battle breast cancer, and struggle with lymphedema and I needed to help her. I came home from the intensive hands on training and got right into it.
With the completion of the Klose training, I finally understood what the lymphatic system was, why my mom had developed lymphedema from having breast cancer, and most importantly the tools of how to help someone successfully manage living with the diagnosis of lymphedema.
I have watched my mom improve her lymphedema significantly and most importantly her well being. Her knowledge of her own body continues to grow and I am so excited to continue to help individuals like my mom. If you or someone you know has lymphedema, please share this with them, read the many tips below and please visit my website for many resources.
Below are many of the ways that my mom and I have found helps to decrease swelling, improve range of motion and improve quality of life while living with lymphedema.
1. Daily Self- Manual Lymphatic Drainage (Through hand massage and/or dry brushing). Understanding the pathways that the lymph fluid moves is critical to improving lymphatic drainage of your affected area.
2. Exercise – Rebounding, lymphatic yoga, aquatic therapy, functional mobility (walking), and resistive exercise. Improving muscular strength and activating the muscle pumps in the body helps to increase lymph drainage.
3. Compression Bandaging & Fitting for Compression Garments - Started with a strict two week compression bandaging protocol and then trial and error with multiple day and night sleeves, gloves, gauntlets. We just kept on trying until we found a great routine!
4. Daily Routine - Checking in with daily routines to promote lymphatic system health; nutrition, self-care, skin hygiene, weight loss (maintain a recommended body mass index). Check out my “four pillars of lymphatic health” BLOG on my website here if you’d like to learn more of the key ways that helped my mom!
Back to Tina...
Babz not only treated my lymphedema but she helped me with my whole body’s health. She asked about my diet, my water consumption, my exercise and most importantly she taught me how to do self-lymphatic drainage. She had me fitted for new daytime compression garments as well as a night compression garment. I lost weight; I drink a lot more water during the day and I looked at all aspects of my life to see where I could be healthier. It was a lot but so worth it!! I could see the fluid leaving my arm and the swelling reduced greatly. And the lymphedema has stayed down. I now understand what I am doing, and why am doing it. Today my arm is under control and I am managing my lymphedema through the many ways listed above, and now lymphatic yoga is in my weekly routine.
Back to Babz - Lymphatic Yoga
I moved to Boston right before the pandemic, which was away from my mom and family in Rhode Island. I started teaching virtual cancer and lymphedema yoga wellness programs because I wasn’t able to see my patients and family in person. I now teach this program to many people world wide. My yoga and wellness programs can be found here on my website.
I am happy to say that this pivot of creating an online virtual platform to educate, and help my mom has led to reach those who were like my mom, stuck with a diagnosis that frustrates them and they need the tools to be able to manage. We truly have created a community that is eager to learn from one another, and better themselves to improve their lymphatic health and better manage what they are currently dealing with.
If you have lymphedema, lipedema, are at risk or have a lymphatic disorder please reach out to me! My hope is that my free education and resources on my website and YouTube channel and my lymphatic yoga programs will continue to help people like my mom. Together we are stronger.
Tina Jackson & Barbara (Babz) Jackson
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