GRRRRRRRRR I HATE LE..........

Dawne-Hope,

RO referred me to a occupational lymphedema therapist.   Does any of your former BC team have medical records on lymphedema diagnosis and therapy from PCP and therapist?   Were they kept in the loop?   Probably will need to reactivate public aid.  Why pay out of pocket for a never ending side effect of BC.   Good Luck!! 

Teka - No and they don't care.  I haven't seen my PS since he released me a year and a half ago.  I saw my BS in September and she barely blinked when I told her I had LE.  

I have been off public aid since December '10. I appealed the decision and had a hearing in November which was one of the more humiliating experiences of my life. I had to say out of my mouth that I declined the public aid because I was no longer in active treatment for breast cancer.  I don't have it anymore ... there is no way to activate something which I no longer have.  I go to my local office and nothing shows up on their computer ... it was that way when I went in November.  I had a special card that was for breast cancer treatment only.  It's banging your head up against the wall over and over and over again.  At my hearing ... even the officer who sat with me had tears in her eyes and said she was sorry there was nothing she could do.  She said I feel in a loophole.  Yes ... and it is a very dark and deep one.   

Binney4 - and I'm sorry that happened to you.



You are such a rock and encouragement. Thank you for being here.

Grrr...... Does anyone have suggestions on how to convince my fitter to let me return the off-shelf Juzo glove that did not fit (fingers too short)?  (I knew it was wrong immediately but let her talk me into taking it.) I haven't tried to argue or insist yet but at the time she said that since I had worn it for a couple of hours after leaving her office it is not returnable. I think if I asked she would say "company policy."  $95 down the drain....Anyone have references that prove "everyone else" takes back garments that don't fit?  It seems so from what I have read here.

BTW I got my custom Juzo glove and it is better altho occasionally I have trouble with thumb falling asleep. I'm trying to stretch the thumb out a bit with a small medicine bottle.

Kareenie, I returned a Juzo off the shelf to a fitter after having it for a week. I just washed it and returned it. That thumb thing is so common, I get it also with my custom Juzo. The fitter did adjust the gloves for a wider thumb, but it happens. And I've heard about another person who it happens to also.

Dawne--it really adds insult to injury. The health care system in the country is so broken--everyone should have basic coverage. So many of the women on these boards get the coverage for "just" breast cancer, but you know, even when active treatment ends, we still are in treatment. It's arbitrary to cut it off. 

I'm currently working for a community health center, and what I can do is so often limited by finances. What I do a lot, is send patients to the local hospital to qualify for free care--and then they can get all the tests and services at that hospital. Perhaps a hospital near you has that program--I think they all have to. 

And please don't ever, ever think you're some kind of second class citizen for not having coverage. It's a system failure. 

Personally, with losing my last job, I'm now on my husband's coverage, and it has not been a smooth transition, and I call blue cross like every day to try and work out the glitches. And they're still not worked out....And my fury is out of proportion to the problem, but I think it all goes with the breast cancer/LE territory.

Kira

Well Ladies lets add to the GRRRRRRRRRRR - What I would do for an $80 appt. Mine are $300 and tried to get financial aide through the hospital... I just got the denial letter.... I owe $2800 for this month.... They are letting us have payments of $60/ month to pay it off.  Not having insurance sucks... but my DH says he doesn't mind paying for things that actually help (LET and Pain Management). 

Why do you have to get those stupid letters when you are trying to enjoy yourself with your grandkids :-P

Note to self - don't take a breather from your sleeve and try to put it back on when you are hot a sweaty... My arm is swelling again elevate and water here I come! 

GmaFoley - I'm with you on the $80 appointments. I'd be so thankful.

Ok, this is weird.

Last week my hand swelled up after lifting some heavy dumbbells up the stairs to my condo. I was able to show my LET the swollen hand. There was a 2 centimeter consistent difference between right and left arms. I've been doing my MLD daily, but I have not had any swelling in a week.

Is there such a thing as intermittent lymphedema?

Hildy--no one answered your question.

LE treatment can vary, depending on the individual's needs: if you don't have a huge volume increase, then "classic CDT"--where you're wrapped 24/7 to decrease volume likely isn't necessary.

We need the tools to manage this at home, and it might include being taught how to wrap, and it sounds like your therapist is being wise to avoid an adhesive reaction to the kinesio tape.

Most of my swelling is in my hand, and for a while, I kind of lived in gauze hand wraps, because gloves weren't helping much.

We need the tools: MLD, therapeutic exercise, how to wrap, effective compression garments to keep this under control, and LE therapists do vary SO much.

Are you comfortable with this new one?

Kira

Brava, Gma! Way to go! Hope you wake up nothing but happy.

Hugs and high-fives,
Binney

Gma, when you do your self-MLD, do you move the fluid from your right side to the left axilla, or downward to the groin? If you're using your left axilla and you're discovering the left arm is swelling (or the left hand, as you mention above), your therapist will make a new MLD pattern for you that moves fluid to the lymph nodes in the groin and/or the neck/shoulder.

You're not actually doing anything WRONG--you're doing what your therapist taught you, which was completely reasonable until you discovered the left-arm swelling. Now you just need a detour. You can continue to do the node clearing part of the MLD, but talk to your therapist again before trying to move fluid to the left axilla. Unfortunately, when we develop LE on the affected side after bc treatment, it's possible our lymphatic system isn't super-effective anywhere else either, so previous injuries or trauma in other parts of our bodies can come into play. 

LE's just nasty! But you'll get this back under control, just hang in there.

Keep an eye on the rash. If it spreads, feels hot to the touch, if you have fever or flu-like symptoms, or if swelling in the area increases, get help at once. Don't wait until you can reach your doctor. You know the drill! At the moment, though, it sure sounds like a heat rash, possibly exacerbated by all that rocky riding! Rest up and treasure your record-breaking glory!
Hugs,
Binney

We all have sooo much to learn about this well kept secret of LE...

It seems like ever day something or someone comes up with something new and different.

Our Drs.need an education...Big time!!!!