Go K Go

That sounds so exciting when the docs admited they know nothing about LE and you could educate them.  So these Docs were not in denial they just needed someone like you to enlighten them. Oh I am so happy you did it! FABULOUS!

Kira, You spoke for all of us when you made that presentation.  Did you wrap anyone's arms as part of show-and-tell, by the way?  

Thank you so much for your persistent, high-quality advocacy!

Carol 

Carol, for this group, I felt the way to get to them, was to clobber them with facts, so I had a ton of articles--however--the presentation started with a quote, kindly given permission by one of the wonderful women on this board--about how LE has impacted her. And they read it, and there was a collective gasp.

Then, tons of articles about risk factors, axillary web, ways to reduce incidence, how to diagnose, how to follow patients, then the whole gyn thing--you take enough nodes in a radical hysterectomy, theres's a 40% incidence of leg LE.

Lots of photos.

Then, treatment--MLD, wrapping, daytime garments, and I brought bandages and Solaris.

Funny let down afterward--I was so wound up before, but so glad I did it. I normally talk to medical students--and these were chiefs of the department, practicing oncologists, fellows--so they are already ob/gyn but specializing--upped the ante.

The introduction by the head of the LE clinic told them I have LE, and I told them when I got it, I had an absolute knowledge deficit, and I wanted to share with them what I've learned.

There's some history between me and this institution: I wasn't real happy when I was a patient there, and got LE three weeks post op, and this was a healing thing as well--believe me, the head of the department was there to make sure I didn't go nuts on them--but 4 years have passed, and I believe my/our goal isn't going to be achieved by antagonism but by education in a kind and inclusive manner.

When I was first hired at the evil one's office, the evil office manager--the daughter, googled me and found SUSO, and told me she found the site "hostile". Kind of ironic.

We did talk about my former workplace, just the head of the clinic and the dept chief and me, and they weren't surprised about what went down. And I only tell the sanitized version. The head of the LE clinic told me she went to my former workplace to give a presentation a few years ago and my former boss was shrieking at them over something he disagreed with, so she has experienced it.

My former nurse called me a couple of times this week, and I do miss her and the patients so much. But, there's no going back.

So, we are gardening  a ton. I haven't totally bloomed my fierce flowers, but they're germinating.

And you guys are my rock.

Kira

Kira, Many lessons were learned, and not just about the physiology of LE.  We certainly hope that humanity is a very large element of the care we receive from our physicians and other providers, and I think that your presentation was science, but infused with insights that foster the 'care' in healthcare.  I think you should consider developing a continuing med education course for physicians and surgeons.  In your spare time (when you find some of that!).

Carol 

Tina, as always, you see the big picture.

I went to the breast health center 4 years ago, complaining that the LE care was substandard--and it was--without Binney, I would have been lost--and I hired a lousy PT who had previously--just-- worked for them and had an axe to grind and treated my AWS with exercises that likely pushed me over the edge.

Am I angry? Of course I am.

I am still Binney's evil twin.

But, I've learned that the confrontational approach only caused defensiveness and increased anger, and after having been verbally assaulted for the last few years, it sure didn't make me want to engage in productive dialogue with the person yelling at me.

So, did I capitulate by not pointing fingers and sharing my outrage--which I did share with the medical students so they could understand how their actions have consequences--maybe, but I'm in a different place now, and my goals are different.

I want them to learn, and not by shaming them, but by helping them. And it felt a whole lot better than that horrible meeting 4 years ago, where they listened to me, thanked me for my insights and totally wrote me off.

When I wrote some stuff for SUSO, Jane would have me tone it down so it wasn't an attack. She was right, although I was majorly steamed as I wrote it.

Our anger is a tool. And Binney tells me that the history of LE is for women to be shamed and to hide and not channel their anger and concern into action. Boy, has that changed.

I am giving a lecture at the Vodder recertification on diagnositic dilemmas in LE, and I need to get to work on it ASAP. I sent Robert Harris my slides for the last lecture and he wanted slides geared towards experienced clinicians. Although it's a different audience: PT/OT/LMT vs. MD's. 

I had a nice talk with the LE therapist who told me it couldn't be LE, as it NEVER starts in the hand. He checked out my hand, and then stayed for the whole talk. I feel about him like you do towards your first therapist: he didn't know what he didn't know.

Now the PT who was LE trained but had me doing repetitve motions and putting stretch on the axilla with a seroma, because she was ticked off at the LE clinic, she will never be forgiven. She had the knowledge and I got caught, at a very vulnerable time--both physically and mentally--in her agenda.

I may have some medical training, but believe me, Binney knows more than I do--but so many times, we email the same person and I get the reply....Bogus, huh?

Tina, I'm still mad, but on some level, I'm not as mad and sad and after being the receiptent of verbal abuse, it sure taught me that it doesn't encourage a constructive dialogue.

And Tina, the first week after my job ended, I was furious, and it was so much easier to deal with than the sadness that followed. And still crops up.

Kira

I thought I'd bump this thread, because today Kira starts her classroom training at Klose, eleven days of CLT training that will be a marathon for her.  Kira is such a world-class sharer of knowledge, so it's like we're all in that classroom with her.

Kira, if you are able to catch your breath long enough to get a glimpse of the goings-on here at bco, all I can say is--in the words of Cookiegal--

GO K, GO!

I just found this thread and wanted to chime in! Kira, your constant support and use of your talents to help all of us is so very appreciated. Your new path will surely provide so much satisfaction...

TAKE NO PRISONERS~

Kira, Sending you some brownies for stamina...

Kira,

 Sending you a basket  of "navettes provencales" (rowing boat-shaped biscuits perfumed with anise of orange flower water) and a bouquet of lavender.  Great smells and beautiful colours from southern France.

http://a31.idata.over-blog.com/540x405/0/51/11/65/a-venir-7/Navettes.jpg

http://www.beautifulworldphotos.com/img/s9/v15/p358609010-3.jpg 

Glad you are there learning more and more to help us!

Cookie, I am a royal pain in the instructor's butt: she'll be up at the board saying stuff like there's no overlap between primary and secondary LE, and I'll say "Actually....Finegold has disproved that" and pull out my trusty iPad, and she'll say, "lymphatic transport capacity doesn't decline" and I'll say "Actually...and pull up my AW Stanton article on lymphatic pump failure...

So, I'm eating lunch, thinking I'm a royal a@@hole, and all the other students come over and say, "Without you, we'd learn nothing."

The instructor has a gentle demeanor, but I know she wants to strangle me. She said "SUSO, that's YOUR website....?"

Okay, back to the eleven hour days, and I don't want to trash the training, but this is the "ideal" the 135 hour course, and a lot of great women are taking it to serve underserved communities, and this will be their only shot at learning this stuff, and I read the course work again last night, and NO information on how to teach a patient to do self MLD.

So, I don't like being the student from hell, but that's what my role as Binney's evil twin is, and I'm just expanding on it.

Luckily, two PT's from the hospital where I'm likely to be working are there, and they are very dedicated to getting this right. The other students are inspiring, and I heard this is the best instructor, and she got her PhD a year ago, so I don't know why she doesn't know the literature....

Do petunias have prickly thorns???

It is exhausting, just exhausting.

You guys constantly inspire me, and guess what, because of this forum, I know more than anyone else in the class, go figure. 

Kira

Kira, your post made me laugh! I can just picture the expression on the instructor's face when remarking about the SUSO site and realizing your breadth of knowledge. Hope she doesn't think you are a PIA since you clearly are there to learn (even if you end up knowing more than anyone in room). I hope she recognizes how wonderful it is to have you in class - she's just as lucky as the students. If she doesn't have a huge ego, she will see this is an opportunity for all of you.




A petunia with prickly thorns! Love it!

Congratulations, Kira!  How did your arm/hand fare with the physical demands on the course?  Having done the course, do you have a different perspective on LE? Any practical tidbits to share?  KS1 

Kira, you simply rock!  What a terrific accomplishment, and it's crystal clear to me that you will put the new knowledge and skills to work in wonderful ways.  Bask in the great feeling of a job well done.