Karen

Riverside, CA

I began Stage One LE in my thighs after being diagnosed in 1986 with Congestive Heart Failure. But, the doctors didn't know what it was back then. Then, got Breast cancer about 15 years ago, and it went from my upper arms to also calves, and ankles and often feet. Diagnosed as cellulitis and then other dermatology things, but finally diagnosed as Lymphedema after I fought for this diagnosis.

I had Stage Two (lymph blisters that opened and oozed) until I died (coded) at Kaiser (was in there for pneumonia), and had to be revived. Now, I am in Stage Three, where my skin is turning to "leather" and changing color. No more blistering, but there are open sores that bleed. The itching, burning and pain and stinging is SO excruciating; my ability to walk is severely hampered. Hint: At this stage, I found that a mixture of Nystatin (prescribed for rashes) and Calamine Lotion makes a paste and when you put it onto the legs, it feels like a cast when it dries.

I am still confused about compression, because on the one hand, we are told NOT TO RESTRICT blood flow through things that compress. On the other hand we are told TO USE compression stockings. This is confusing.

Also, My home health nurse, when putting on the Una Boot, said to keep it on until she comes again the next week. That means NO SHOWERING. Like, EVER? I couldn't do that, and also, my sores opened and bled under the wrappings. I ended up cutting them off the next day or day after. I am finding wide calf diabetic socks to be BETTER than compression, and works in a very similar way, leaving me open to being able to have showers.