GRRRRRRRRR I HATE LE..........
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Have any of you added selenium to your supplements? I found a study that showed benefits in secondary LE of the head and neck. Sorry I can't get the link to work, just search on "Selenium in the treatment of head and neck lymphedema", then you can download a PDF!
I too tend to have issues with rebound LE when I take my compression off, but it usually goes down pretty rapidly if I elevate for a bit.
I need custom, one piece, glove with sleeve, I got five of them over a year ago, while I still had private insurance. Now I'm on Medicare w/supplement, which wo doesn't cover compression garments, and mine are wearing out!!! Insurance covered the ridiculous price of $700 each that they cost last time. H...l I can't afford that - any suggestions?
I've started getting claustrophobic now with day garments, night garments and wrapping. Not to mention it's a real pain in the .... to cook or clean or pretty much do anything with a glove that how's to my armpit on!
I'm so tired of having to deal with the LE, somedays it's quite overwhelming! Wow, I didn't realize I was this frustrated! Thanks for letting me rant. I would welcome any suggestions!
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I am new to this thread, and to LE, and I hate it! I had no idea how much it would affect my life, or my family, or my frustration level. I started wrapping yesterday (first time ever) and it is just rotten. I made it about three hours and ripped it all off and left it in a pile on my desk for the rest of the day. This morning my very patient husband helped me do it and I made it again about three hours. By the time I got to that point it felt like it was migrating down my arm and I was just ticked off at everything and everyone. I am going to talk to the OT tomorrow about trying stockinette instead of the other stuff (I don't even know what it's called); I am thinking that might be a little easier--the layers of stuff are driving me nuts!
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Linda, there is some evidence of a bit of help with selenium, but I haven't noticed it myself. I get mine from Brazil nuts, which I happen to like so it's a good excuse to eat them. Very easy to exceed the proper dose of selenium, which is toxic, so be cautious with it. Three large Brazil nuts a day for me, and that's the max. Another possible help (also don't see it myself, but who knows?) is bromelain from fresh pineapple. Worth a try if you like pineapple. Has to be fresh, though.
I'm right here GRRRRRRRRRRRing with you and Paula both! Getting hot, and that's never nice for my stupid LE. As for the "compression claustrophobia," I do try to go without compression every evening for a couple of hours, and it helps me if I use the time for some sensory stimulation, touching and being conscious of textures. Being bilateral I have some problems with sensory deprivation when only my fingertips are free all the time.
Paula, you can do this! Hang in there! Keeping your mind busy with something helps distract from the weirdness of being wrapped. Plan to watch some funny movies or invite a friend over for Scrabble--whatever makes the time pass for you.
Gentle hugs,
Binney0 -
Thanks Binney!
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Lynda in the same boat. Insurance doesn't cover and I don't have the money. I went in a state of denial and last week realized I had to get back to doing MLD because my legs were so swollen. So I started back three days ago. I know I need to because today I have felt awful. I think all that nasty fluid has moved some. I remember back in the fall when I was in treatment I felt this way for a few days. Hoping it passes soon.
Hang in there everybody.
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Linda and Kitty, if you have Medicare, you should be able to get a pump. I've had mine for a week and a half and the PT said I was down about 70% already.
The unit is called the Entre' System. The company that got me the unit is Tactile Systems Technology. They do have a website but the page with the unit I have is under construction
(. Their number is 888-435-3948. They did it all for me. The rep came to my house to measure for the leg boot and then put the order in. The company pushed things through Medicare and my supplemental insurance so I ended up paying nothing. If you don't have secondary insurance, the balance on the unit is around $300 after Medicare (the units run @ $2K) and they'll let you pay what you can afford by the month. It's worth a call. I had a hard time doing the MLD for the length of time I needed to do it so this machine is a real boon. My PT is also putting an order in for the arm massager and it should go through without a hitch. They do have a different unit for the trunk, Kitty but all told, give them a call and see what they can do for you. They definitely want your business!
Sue
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thanks for the info Sue! I see my CLT tomorrow and get her thoughts on it!
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RE: LiveStrong at the Y
YES!Please do print out the info from the stepup speak out site. (Thanks Carol- for all your time and hard work on that comprehensive document) Be careful of your local Y. All differ.
Last yr. I had several meetings with the people at my Y . They seemed receptive at first, but then, I think they were afraid. ( possibly of a lawsuit if someone developed LE?) Can't blame them on that - they became defensive and said it was not their job to warn these women and that their DRS should monitor them, and yadyadyad.
I contacted them recently and asked if I could join and " skip certain parts" or modify because I have patella femoral syndrome right now ( kneecaps not tracking right) and they said NO! They said :" You would need medical clearance". I said :" My DR will give me medical clearance " ( because he knows zippo about LE and doesnt take the PFS seriously enough) They said " NO. If you cant do ALL of the program, you can't do ANY."
This is very concerning!This tells me they have EVERY BC pt. out their lifting weights " the YMCA way" . ugh. No modifications allowed.
I started to question them on this and they replied:" We spoke to you at length last year. You should see a a PT or exercise physiologist. Perhaps this program is not for you!"
I said : " The program you are describing is potentially dangerous for ANYONE who has had lymph nodes removed and you were put on notice."
Guess what ?
They hung up on me.Please be careful. I believe the majority of DRS are like mine and would gladly give medical clearance to ANY BC pt for LIVESTRONG at the Y , with or without LE...and most would not ask about a sleeve or mention LE risk. Do not blindly follow anyone elses exercise suggestions if they dont seem right for you , if your arm is achey , if you swell afterward etc etc etc... and wear your sleeve and hand protection.
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WOW Purple. Their response to you is unbelievable. Truly a GRRRRRR moment. I remember years ago one of my aerobics instructors at the Y was trying to educate herself to the limitations that breast cancer patients may encounter. This was about 15 years ago. Long before I was ever dx. I guess she was ahead of her time. They should be doing all they can to encourage you and learn from your knowledge. It sounds like you are the bee in their bonnet. Very sad and potentially dangerous for others who go there.
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I organized a one-day PALS for Life workshop in our area. This workshop is given by the woman who was the lead trainer in the PAL Trial in 2009, and she teaches personal trainers and LE therapists all about the weight lifting exercise sequences and precautions developed through that study. The athletic program director at the Y in Kalamazoo, MI came to the workshop and told me afterward that she would definitely be making changes to their programs for cancer survivors.
On the other hand, the Y in Grand Rapids, a pretty big city that's just an hour away, said they would not send any of their trainers to the PALS program because their community outreach for specific medical conditions that year was diabetes, and they didn't want to divert attention to any other disease or condition. Yikes!!!! The biggest hospital in Grand Rapids both sent a therapist and donated funds to help defray workshop expenses, but the Y couldn't be bothered to worry about LE. That Y did not have a Livestrong program at the time, and recently I learned that they started offering one. I believe that the Livestrong program materials include a short DVD about LE that the trainers are supposed to watch. If that's still in the program, it's something, but clearly in purple's experience, the trainers haven't taken it seriously.
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Purple, I would call your local paper and ask if they'd like to do a story on how the local Y is ignoring bc patients and potentially harming them. A nice, negative write up might get them to change their tune! Sue
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I organized a one-day PALS for Life workshop in our area.
Great job, Carol! You have been the best educator I know of on this topic, by far - thank you.
As for the negative press milehigh, that is always my FIRST instinct, but I have learned to sit with it, take soem deep breaths and realize that it
* probably won't do any good
* might actually make things worse
* might eliminate a program some will benefit from ( not everyone gets LE)
* might make a bad name for LIVESTRONG which is not the problem here ( it's LOCAL YMCAs)
* I think it will close the door and anger people who migh have been open
There seemed so amenable to everything last year. They were stunned that they were handing BC pts weights and just ' letting then do it' w/out any knowledge of LE whatsover. They seemed genuinely concerned. Someone at the top decided they didnt want a lawsuit. maybe they see me as a troublemaker or whistle blower. That was NOT the tone of our meetings at all. That last thing I would want to do is make things worse.
BUT...I SO understand where you are coming from, my friend ! :>)
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My experience with LiveStrong at my Y has been great. Our trainer, a nurse, has talked A LOT about LE. I printed off the SU materials, she read them and was very appreciative. We did the LE exercises in the LiveStrong materials and Sharry Lebed of the Lebed (weird) Method is coming to talk to us next week and lead a class. They tell everyone to listen to your body and don't do anything that crosses your line. I have formed a bond with the participants. I'm sorry about your experience, Purple. Have you contacted LiveStrong about it?
Having said all that, I still hate LE and get very frustrated having to wear bilateral garments every freaking day. I'm not on Medicare yet but am terrified about having to pay for four garments every few months. I'm allergic to the material at the top of the sleeve, so I am pulling them up constantly (Lymphedivas). I know I am blessed not having to wrap, my LE is under control, but it still makes me cry sometimes. With short sleeve weather coming, so do the thousands of questions about the garments. Sigh..Can you ever stop thinking about cancer with these daily reminders??
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Ask your congressman and senators to support the Lymphedema Act, have all of your friends and family write in too. This site gives you sample letters, explains it, and any other info you might need. http://lymphedematreatmentact.org
My garments cost $700 each and I need a minimum of 4 per year, not sure how I van accomplish that!
Also, how can the compression garment companies charge that much, they really can't be that expensive to make! Has any one written to one of these companies and been given discounts? I don't think my insurance should have had to pay that much either, when I had coverage.
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*NEWS! I need your help!
Hi All,I may post on a few threads… hope you will indulge me , but will seek replies on the new LE thread “ GARMENT for truncal”
There, I posted about a great top that love for truncal LE made by sassybax.com :TORSO TRIM TT03: http://www.sassybax.com/search.php?search_query=TT03&x=0&y=0
They also make a bra with BC pts in mind
Celebrate Life bra : http://www.sassybax.com/search.php?search_query=celebrate+life&x=0&y=0
PLEASE go look at that thread when you get a minute.
The owner called me today and she is wonderful! She is very open to the *possibility* of selling these items as garments that we could buy with our health ins. NO PROMISES because she needs to know HOW to do this and what it would take. At this point, she and her husband run the business out of the home and if it requires too much work, they may not be able to take it on, BUT – she would be happy to!
Please post on the “garment thread” and/or PM me and tell me anything at all that you might know about how to accomplish this or who to get in touch with.Many Thanks!
Laurie0 -
Laurie, they look nice and I may try them, thanks
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Linda, that is a fabulous link. Already sent my email to my state rep. Thank you! Sue
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YW!
I love them...just hoping to try to get them approved for our INS!0 -
So nice to hear from you Purple. Yah this dang health stuff can really eat up our lives! I have often thought about you and was hoping that one day you may pop in. You are such an inspirtation to us all.
Regarding the Sassybak. I see there is only XL and smaller. I usually wear an XL teeshirt but when it comes to shapwear it is always a 2x otherwise it cuts my armpits and rolls up at the waist. The bralette is just what I need too. I have a few cheap ones but would love them to carry a wider range of sizes. Some of us LE girls are older and just can't work off the fat like you young spring chickens. My metabolisim is the pace rate of a slug in fast motion. DH just lost 6lbs in 2 weeks and I lost 8 in about 2 1/2 months. Grrr on that one.
Edited to add. Oh I see there is size2X but not in the celebrate style, just bralette. I will have to look at their refund policy now.
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I have AETNA so no help here with a pump either. They wanted a pump but if I can't afford garments I definetly can't afford a pump.
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milehigh, My CLT isn't real hot dogs n the pumps and doesn't think it's a good idea for me, she says I'd still need to wear compression garments. Also, she said that she's seen cases where Medicare wouldn't pay. So we're brainstorming ideas on more affordable options! 😕😕
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That's too bad Linda. I swear by mine. My leg is down 70% in 10-days! I'm also getting an arm sleeve. I also continue to wrap the leg and wear an arm sleeve and gauntlet during the day. I'm hoping I can get it back to nearly normal and eventually get to the point where I don't have to wrap or wrap minimally. I'm already dreading summer and the heat!
The company I referenced rides herd on Medicare. It might be worth a shot just to see if they can get it through. Nothing ventured, nothing gained! If they get it through - you've got yourself a pump. If not, you're not out anything.
Just wanted to share the info in case someone wants to give it a shot. Blessings all. Sue
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nd smaller. I usually wear an XL teeshirt but when it comes to shapwear it is always a 2x otherwise it cuts my armpits and rolls up at the waist. The bralette is just what I need too. I have a few cheap ones but would love them to carry a wider range of sizes. Some of us LE girls are older and just can't work off the fat...
hahhaha!
Hey, NO excuses hugz! I just returned from my WW meeting and lost another 1.4 lbs after a wonderful Easter buffet. If I can do it anyone can! I'm coming very close to getting back to my size 9's woo hoo!
As for sassyax, help me get them on board ( for INS) and THEN, I am sure we can work on sizing.(Refer to GARMENT thread under LE)
Nice to see you again!
LauriePS I'm 56 ,post menopausal and can't exercise . LOTS of ladies in my ww group older than I (and in better shape too :>(
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purple, Good for you on losing the weight. I actually like WW because it is portion control....like your not allowed to eat the bucket of icecream or you have to write it down and pout about it later. I works for me because I give myself the guilt trip and can stand the fact that I will have to record what I ate. Its a true slap in the face it is! My leader was so in shape I wanted to vomit with jealousy. Older too. I am on dairy free, gluten for a while and that pretty much cuts out all the garbage but I want to eat my knuckles at times. Popcorn with dark olive oil has saved me and has been my staple for night noshing.
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hugz4u - I went gluten and dairy free about a year ago … and when I get awful cravings … I find eating an avocado not only fills me up but also satisfies the craving.
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Hugz, gasp! You mean no more incredible gelato from that shop on your beach walk, that you took me to last year??? Now that's what I call dietary dedication!
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Have you ear tried skinny pop popcorn. It's our new favorite treat and only 75 mg. of sodium per serving. Intresting that our bag says 50 mg. of sodium. Wonder why it changed...but still low sodium. I have found it at Sam's the cheapest, Bilo and Walgreens.
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milehighgirl, my CLT did say she's seen pumps work really on lower extremities. I do OK keeping it under control with day and night garments, MLD and Lebeds type exercise. It just gets tiresome. 😵 And with medicare not covering compression garments - YIKES! 😱
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. Popcorn with dark olive oil has saved me and has been my staple for night noshing.
Yum!
Sounds delish - but I would want salt :>(
I normally HATE garbanzo beans aka chickpeas , but got a WW recipe that claimed I would feel LIke I was eating nuts. ( I do not buy nuts because they are a trigger for me ...no portion control!) They were great! First time I missed the salt though in all of this time.So I ask all of you , what about MRS DASH ? Is it safe ? Do ppl use it ? I use to 'salt load' as per DR orders for low BP and have not touched a saltshaker ( or anything " HIGH: sodium since the LE. Has never bothered me a but until lately.
Mrs. Dash ?
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BATHING SUIT:
On sale now ( 4/28/14) at SEARS...
http://www.sears.com/shc/s/p_10153_12605_017VA713...
If you like 2 pieces due to your LE, this may be for you. I went 1 size up so that this would not contrict / feel tight in my arms after lots of movement. Hope someone can ' cash in on this " They also sent me a 15% off coupon in email!
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