New here and venting -

[fslady]

Hello All - I just found this forum and would appreciate some advice. Short version - right side mastectomy in April 2009 with 25 lymph nodes removed. I do have mild lymphedema in the arm and have been going for MLD about every 2 weeks and doing the self massage as directed (as much as I can reach).

But I am really beginning to resent the massage therapist and her unending efforts to restrict everything that I do or want to do. She told me not to run the vacuum cleaner with my right arm - okay I said that I'd use the left arm - but she said I shouldn't do that either. I shouldn't pick up anything heavier than a gallon of water - rather impractical since I live alone and have to buy heavier items like dog food or detergent. I am supposed to sleep only on my back with my arm elevated around 6 - 8 inches which is uncomfortably high for my shoulder joint and besides I am a side sleeper (and I'm not supposed to sleep on my left side either). My career requires typing and that isn't good either. She's been pushing me to get a compression glove but the compression therapist says that I don't need it and besides I couldn't type with it.
And forget painting a room in the house!

I have a good income but I cannot stretch it to include a housekeeping service and professional painters.

I guess what has me so upset is that the mastectomy, chemo, and radiation are over and I'm supposed to be getting my life back. But this lymphedema problem seems like it will take over my life, esp if the MLD therapist has anything to say about it. And the only 2 MLD therapists in town - work together.

Am I just being difficult or do others experience this? When I questioned the therapist once about what did people do who had jobs that involved very routine repetitive motions - she shrugged and said that they went on disability. That is not an option - I have a job that I love too much to give up for that.

Thank you for any help, encouragement or advice.

[Ann]

You have described a difficult situation and I have suggestions for you.

Go to the National Lymphedema Network (NLN) website (www.lymphnet.org) On the right side of the page you will find a list of NLN position papers including one on treatment. Find it, print it, and read it carefully. (Of course I'd like to recommend that you read as many Lymph Notes articles as you have time for.)

In short, become an informed consumer. There have been major changes in policy about how lymphedema is treated particularly about exercise and limits on lifting things. What you do with this information is a difficult decision you must make for yourself.

Best wishes,

Ann, from Lymph Notes

[Linda]

I've been reading about patients who have trouble keeping their bandages or stockings.

I've discovered a technique that works for me. It is called "Jobst "IT STAYS." It isn't sticky or unpleasant and my therapist taught me an important secret. This is to roll it on like a deodorant AND, it is important, that it be placed vertically (up and down) on the leg. Do NOT wrap it around the leg. With proper placement the "IT STAYS holds the stockinette and the leg together.

It stays in place easily and comes off easily too.

I hope this works as well for you as it does for me.

Linda

[bornthisway]

I like very much what Ann said about read all of the info out there on your condition.
Continue going to your therapist for the help she can give you.
Know your own body. Take what you need and leave the rest.
If something you drop affects you extremely, take it back up again.
I'd listen to the therapists suggestions.
I'd consider it "suggestions". I wouldn't argue with her or even discuss specifics if you aren't up to it. Read all you can; google all you can, listen to the therapists words:then think about it all and:come up with your own game plan. This is what i'd do anyways!
Good luck!