I am so glad to know you yet I wish we never had to meet, considering we are meeting because of "cancer's dirty little secret". I know what you are saying about avoiding the curious.
A good day for me is one that no one asks about my arm or hand.

There you were doing all the right things and this insidious disorder still gets worse.
I hate the unpredictability of it.
I find it interesting in this video (below) that they mention care for lymphedema is better in Europe. My lymphedema therapist said the best treatment is in Germany. I might plan a vacation in Germany.

If you are unaware of the Lymphedema Education and Research Network (LE&RN) it is worth checking out their website. There is a good video here. You may know most of what they are explaining; but it is affirming to see Kathy Bates, who has lymphedema and others.

It is frustrating that 10 million Americans have lymphedema which is more than people with HIV/AIDS, MS, Muscular Dystrophy, Parkinsons and ALS combined. Yet, doctors spend about fifteen minutes in their entire medical training studying the lymphatic system. It makes me feel betrayed by the medical system. Those surgeons who do learn about it are extraordinary.

A million heartfelt thanks for sharing your story and your frustration with us. It helps me more than you can possibly know. I knew I wasn't alone but felt alone. I no longer feel alone with this.