Go K Go

hugz4u

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!

Anonymous

What Hugz said !!!

cookiegal

go Kira go Kira woot woot!

BeckySharp

Hey, I think everything we do to educate a professional is one step forward.  But Kira I think you took 100 steps forward! Way to go.  Becky

carol57

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 

Marple

I think we should see about cloning Kira and Binney.

kira66715

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

Nitocris

Kira,

 

I have not been on the Board for weeks, and it is only now, after reading the posts that I realized what had happened.  I am chocked that you were treated this way and can imagine how this has been for you.

 

Leave behing the:

Egostistical

Vicious

Intolerant

Lousy

 

Overcritical

Narrow-minded

Cruel 

 

For us on this Board, you are

 

K kind-hearted, knowledgeable, Key (as in Key person)

I intelligent, incredible, important, inspirational, indispensable

R reliable, respected, resourceful

A awesome, amazing, admirable

 

I am sure after your presentation, more doors will open.  You can turn this page, a better chapter lies ahead.  All the Best to you and your mom. 

carol57

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 

Anonymous

Carol, what an excellent idea. Instead of dreaming of a time when LE will be part of the regular medical curriculum or a continuing ed class, why not create it? Well, that's easy for me to say . . but I wholeheartedly agree that Kira has the knowledge and could create an engaging program that has the potential to change patient care. Just think of what has already been accomplished with this one presentation. Perhaps you could be a consultant, Kira. Write the curriculum, market yourself to hospitals and treatment centers and hold classes on how to prevent, diagnose and treat LE for those on the front line of care. The legislation for LE has taken the focus off of this, so why do we have to give up our hope for better education on LE for doctors, nurses, and other staff involved with cancer patients? Besides, if someone else writes it, a bunch of errors will have to be corrected, which always takes more time than if you wrote it yourself.

As I said, it's easy for me to talk, but I don't have the medical background or knowledge of LE that you do, Kira. What class are you creating for the Vodder curriculum? 

I think it's wonderful that you have moved on to thinking about how to help educate the very doctors that hadn't given you the proper care you deserved. I have wanted to tell you that I had a 360 experience with my original LE therapist. She is now a colleague with my wonderful LE therapist. I was originally horrified at her presence in my safe haven of treatment, but I have learned that she is working on getting her LANA certification. I can't think of a better therapist to guide her as she moves forward in her skill level. While it still angers me when I think about how I received inadequate care, I have forgiven her for not having the best answers and treatment. LE, as we all know, is an area where there is little education and knowledge, so we can hardly blame them when usually they are trying their best to provide good care. If I force myself, I can somewhat expand this level of forgiveness to the docs of denial in my hospital system. If they could all just admit, like the doctors in your class, that they didn't know a thing about LE, how it is caused, how it is diagnosed or treated, then that would really help take the sting out of these feelings I have carried with me for over four years. But I am trying, just because it is best for my own wellbeing. It helps me feel less like a victim. However, anger is a useful tool that when properly directed can be quite effective in creating change! The point isn't to erase history, but to learn from it and move forward.

kira66715

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

Galsal

It's encouraging to be on the sidelines as you're finding your new path to educating those that are treating us about LE. 

carol57

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!

dressager

GO K, GO!

moogie

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~

kira66715

I'm in the second day of the nine day, eleven hour/day course. It is grueling, but good. When I have time and a real computer,I'll share what I'm learning.



Am in negotiations for a job, and have to miss the half day seminar on women and negotiating....darn!....I need it....It's hard to set boundaries, but I'm working on it. Next meeting after the course

carol57

Kira, Sending you some brownies for stamina...

Nitocris

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 

 

Alé, Kira, Alé  (Nissart dialect)

Nitocris

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 

 

Alé, Kira, Alé  (Nissart dialect)

GmaFoley

Sending you more *HUGS* You can do it!!! I'm fairly new her Kira, but I know how hard it is to be looking for jobs (I was an archaeologist/osteologist before BC). Keep in mind we are all here to root you on! Prayers are also coming your way!

BeckySharp

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

cookiegal

So many exciting things my petunia~

kira66715

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

BeckySharp

A petunia with thorns!  HaHa.  That is what is needed in this world isn't it Kira.  Keep at it.

Anonymous

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!

kira66715

I passed the CLT course!: I'm a CLT (Klose), and the instructor and I worked out a truce in the end, kind of. 

My test case was RIBP: and guess what Binney worked on for SUSO--and entire wealth of information for RIBP, I had references for assistive devices thanks to Binney.....

The other students are/were amazing, and it gives me hope for the LE world. One of the students has been doing LE treatment for a long time, but only took short courses, and she brought in two real life patients, and it rocked the class--the woman with the arm swelling in the midst of her breast cancer battle who just hates LE and brought her bandages in all tangled, and the woman with bilateral leg LE who asked why it took so long for her doctors to first recognize it and second send her for help--and her bandages were all neatly rolled.

Now, I'll sleep for a week.

And, I'm still not an expert, just more trained.

Kira

KS1

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 

hugz4u

Just knew you could do it. You smarty pants! Way to go girl.

Yes, tell us your experiences as we learn to. Do rest up a bit first though. You must be dog tired!  How about settling down with popcorn, no salt but with a dash of lousianna hot sauce, and a good movie to boot! The alternative would be chocolate anything as this is time to celebrate. I'm sending anything virtual that is tasty cause you worked sooooooo.............hard!

carol57

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. 

Anonymous

Congratulations, Kira!! Sounds like you had terrific classmates. It doesn't surprise me you did well, and I know you will put this training to good use. We are so proud of you!