Working with LE

kimber_1616

How many of you are able to continue to work with LE, mine just seems to get worse and is now under the breast in the ribcage on the same side (which hurts!) I mostly have a desk job, but also teach a class and do various testing and other jobs. Even after LMD we haven't gotten things under control. Feeling pretty lost and broken...

Anonymous

Hi kimber, Im sorry you are experiencing this. Hopefully someone comes along who knows about this. In the meantime there is a recent thread started up about breast LE and you may like to take a peek in there.



I think some ladies here have had to give up their jobs and some havent. It would depend largely on how demanding physically that job is (ie lifting too much) and at what stage your LE is at. For all of us, LE is going to make at the very least SOME difference in our lives. That is, there will have to be some adjustments we make and that takes time to learn about and come to grips with. It's a case of getting things as stable as we can and getting the right garments and the right help from LEist.



You don't say how long you've had LE or what sort of help youve had but please ask any further questions you want to.

kimber_1616

Thanks for your response. It just started in January and we have yet to stop the flair ups. April was the worst. I have had multipe surgeries (19, double mx) and 15 or 16 had an IV in the node removed arm because "it was only three" I am so angry I didn't have the knowledge, I'm angry my life has changed, I can't do my job, I can't do my hobby (photography), it's hell in every day life and I don't know how to fight this. It's just so unfair for all of us haven't we suffered enough?!

Anonymous

Kimber Big gentle hugs. Yeah it's hell. Please don't blame yourself for the knowledge thing or beat yourself up. You are right to feel angry and upset.



We were/are the patients and its up to the Med team to get us wised up but often they dont. Yes we can feel cheated. This has really had a detrimental affect on peoples lives and theres much damage that could have been avoided.



Because a lot of this is conceptual stuff, how are we supposed to know what questions to ask anyway. Also, some of us are more inclined and disposed to do better at research and some of us are not. I was such a mess at dx theres no way I could take it all in. I was like a zombie for months. Be kind to yourself and sometime when you can, you'll get great help from these boards about what this darned LE has served up to us and how we can best cope with it. From that you'll draw from others' experiences.



I had my last chemo in my node side because my "good" side just would NOT give anymore. That may help just a tiny bit, but from now on, don't let them touch your node side. No BP or IVs or other sticks. LE is manageable as we learn to deal with it. It's not easy and yes there's a steep learning curve but its doable.



Is your LEist helping or perhaps it's time to see another?



We are here to support you.

Binney4

Aw, Kimber, I'm so sorry! Tell us what you and your therapist have tried and maybe some of the gals here can make some suggestions for other strategies. What kind of compression garments are you using? Have you found the StepUp-SpeakOut site? Lots of information there, but here's the truncal LE page:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

I'm also wondering about the photography. What specifically about it is making that impossible for you? My LE therapist is an occupational therapist, and she's been really helpful with the kinds of adjustments I need to make to function with the LE.

Gentle hugs,
Binney

Anonymous

I was also wondering about the photography. Kimba with the right treatment and help I'm sure you would be back into that photography sooner or later, and lets hope its sooner! Hang in there and when you want to, let us know how you are getting on.



Big Gentle and warm hugs.

kimber_1616

I am sorry I am guilty of posting and not coming back! I have had an overwhelming last few weeks and along with that I have been going to the dr, chiro, massage therapist and the acupuncturist. So, after work with three kids I have been swamped!

My dr has referred me out to a new LE therapist. I live in a VERY rural area and he said I am out of his league and the therapists. I am about an hour and a half from Sacramento, Ca. if anyone knows anyone amazing in Folsom, Sac. Etc. He is referring me to someone who specializes in treatment of women once they have a mastectomy and she advises them through various steps. She seems to be well educated and has been on the news and in articles recently. Still waiting for an appointment.

My back bothers me a lot after the lat flap. When I am active it doesn't as much, but when I am not and am recovering from surgery (Which I am) it is excrutiating. I started wearing the abdominal brace they gave me after they did a little lipo on my scar from my diep flap and it seems to help the back pain. It is also helping push a little bit of the fluid out from under the right breast where it is starting to pool.

As for the photography. When I have my big lens on (300MM) and I am right handed (right LE) I tend to swell more and my back is unmanageable. Hopefully it will just get better. It just sucks because I knew how to fight everything else and feel like I can't fight the beast of LE!

Thank you all for your support