Curious about Kira

I'm still out here, just kind of drifted away from the boards. I have answered a pm here or there. This forum was a lifeline for me.

Binney told me about the post: thanks for saying I helped with my posts.

Not sure why I stopped being on the forums, but I am sick of LE, that's for sure. I even put my LE therapist into the 6 month check up mode.

I know we value our anonymous status here, but I think those of us that were here in 2008 know that we created the stepup-speakout.org site, and I did do a couple of things in February--a webcast for LE&RN and a postcast for ASCO. I still lecture whenever I can, to teach about LE.

The podcast link is here: http://www.cancer.net/blog/2015-03/expert-patient-perspective-lymphedema

Here's the link to my webcast on how to find a Qualified LE therapist: https://www.youtube.com/watch?v=EkYMZFLWzlI

I had been working for the radiation oncology group, and that ended, and now I'm in a different job, and I still see people with LE--a whole lot of them in the primary care world, but I'm not in the oncology world all the time.

I have a granddaughter who is 2+ and recently she watched me take off my bandages--because although I resent it, it's what works for me, and lets me go without compression during the day, and it's not for not trying every product that could work instead of bandages, and my granddaughter kept asking me "What's that?" So I showed her how to bandage.

No "going away" party, just a drift, and I have Binney to clue me in. Hope all is well with you.

My LE is behaving, and not interfering too much , and as my wonderful LE therapist always says, you see what you can get away with--little daytime compression, wrapped at night...

Can I put in a word about our wonderful LindaLou53--who created our teaching photos--she's stage IV now, and has been dealing with a lot and we want to hold her in our thoughts and hope that she feels better soon. She has told me that she wanted to post here and let people know the challenges that stage IV women with LE face, but right now she's busy dealing with her treatment.

Kira, I came back to the site today because I got an unrelated PM, but checked this specific board only because I wanted to check on you and Binney. You two were the bedrock beneath this group when I was diagnosed, and I came to marvel at such amazing endurance. I am really glad to see your post and that you continue to move forward. Nobody can be everything for ever, but, if you can create a strong-enough foundation, the work can chug on without you having to direct every move.

Carol57, I am also really glad to see you still posting here.

Definitely a village--and one I'm so grateful for. Outfield, how are you doing? Summer's always a challenge with this stupid LE--hope you're managing to stay cool through this "swell" season!

Hugs,
Binney

I'm doing really well.

It's healthier for my life that I not be on this board too much, but I direct people here and to the Stepup-Speakout site all the time.

My current lymphedema challenge is pompholyx. Nowhere near as bad as this picture, but a little hair-raising nonetheless because even though mine is mild, I don't want any sores on my hands, especially the lymphedema side. I don't know how this person stood the itching to allow the blisters to stay long enough to get a photo:

http://www.eczema.org/pompholyx

So far no cellulitis from the buggers, but an ongoing battle with them. I'll let you all know if I learn the magic bullet.