GRRRRRRRRR I HATE LE..........
Comments
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Dorian - yes, I do MLD before Flexi and then MLD after. But, I only use the Flexi when my arm is giving me fits and needs the extra attention Flexi gives it. On a daily basis, my MLD only takes about 25-30 minutes, the Flexi is a 66 minute treatment plus the time to put the garments on, get situated, and get the garments off and put away. Just know - once you get that thing on you are committed. Potty first, get the phone and remote control where you can reach them - and whatever you may want/need during that hour.
Flexi was very helpful in teaching me the slow, repetitive strokes for MLD - I don't think I was not doing MLD properly at the beginning and once I started the Flexi I had an 'aha' moment.
As mentioned above, Flexi helps with the back and I hold mine close to the chest for better benefit that area. I do find it a great help, plus it is relaxing.
I did take it with me when traveling (I travel for work) but never used it. I have a good routine and am more confident with air travel so the Flexi isn't getting any more air miles. If I was going someplace hot for an extended time I think Flexi may go along, but I hope I never go anywhere hot for an extended time!
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Because I'm bilateral, I actually lift the top of the vest part of my Flexi away from my skin, because I don't want to send the lymph fluid toward the opposite axilla (I use a folded washcloth to keep it from compressing toward the other side). But for those of you who are finding it a bit gappy in the front, they do have a strap with Velcro ends that you can put across your shoulder to hold the front tighter. You can ask your trainer or area rep to give you one (and do insist on not paying for it if they tell you there's a charge for it, because it's not really optional).
Flexi trainers are not allowed give medical advice, so do check with your therapist about node clearing before and after using the Flexi. Most therapists agree that's an important step, even if a full self-mld is not necessary.
Be well!
Binney0 -
My GRRRRRR I am still waiting on my sleeve that I was fitted for July 12. I haven't had time to read any post. I will just say that Aug. 30, I had a friend of my child's put in our custody. I have had so little time to take care of my LE. My legs look awful my arm is ok considering how little I have been doing MLD. I am homeschooling this child and for once by 12 I have been asleep everynight until Monday night. My child started showing signs of depression. Both of these girls are only girls and they did great for 3 weeks and then the bickering started along with both wanting some mommy time and their own space. The parents currently have supervised visiting rights from 6-8 every night. DSS is coming tomorrow and I am hoping to change some of the rules. MY GRRRR Tired exhausted and puffy....pass some chocolate.
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KittyDog, what an undertaking!
Supervised visiting every night is COMPLETELY NUTS--no good for anyone involved. Stick by your guns tomorrow and get some sanity restored.I don't know how old the kids are, but can you get them to laugh along with you through a few Lebed sections?
Double chocolate brownies for courage! Do let us know how it goes.
Hugs, chocolate, prayers,
Binney0 -
They are both 10 but the friend will be 11 this months so she is 4 months older. When I talked with my PT she agree wrapping the legs right now is impossible. The cruddy fitter has ordered the jux-t fit...something like that just to get something back on my legs. They are so over stretched now I can pull them up and two minutes later they are at my ankles. I had gone back to using glue when I had to be own the all day but after the second break out of hives I figured I had to stop that too. Thanks for the encouragement. Much need. Now off to bed I can't hold my head up any longer. New rule..Home school starts when my child leaves from school now. I hate morning anyway. lol My child leaves the house at 7:15.
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Good morning - I've got a quick question (Quick, because I'm typing with two fingers on my iPad and it takes forever). When doing the MLD, is it required to do both sides, even if the LE is only in one arm?
Also, on the morning where it's impossible to do an entire massage, is there a quick morning fix to get things moving? Some days I'm so short of time that I'll do fist pumping during the dog walk, and then stimulate my neck when I get to work - but save the MLD for when I get home at night.
I just went back to work a few weeks ago after three months off, and realize I am now a much higher- maintenance version of myself. Cancer SEs, and follow ups, recovery, exercise and healing are a full time job. My other full-time job is really getting in the way.
Janet0 -
Janet, yes, the node clearing in the neck, groin, and opposite axilla (if you haven't had bilateral surgeries) is an important "quickie" routine. I include my upper chest as well, since I have truncal LE. The 15-minute Lebed opening is also an option--keeps me from going too fast when I'm in a hurry.
Don't neglect staying well hydrated and drinking plenty of water--harder to remember not that the weather's cooling where I love
We are high-maintenance now, for sure. Also expensive.
Hugs,
Binney0 -
Binney,
Thank you! Though I'm not clear on the oppoite axilla. I've had bilateral surgeries, but have LE in the right arm. So should I do my 'quickie' on the left?
Janet
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Janet, if your surgery was bilateral you shouldn't be moving the fluid to the opposite axilla, but it probably wouldn't hurt to stimulate the nodes there.
Binney
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Binney,
Do most people have an LE massage therapist. I just met with a therapist once, and that was about a year ago. Since then I was assigned a nurse, but she was a bout twelve years old, and an idiot. I'm in the process o f finding someone new.
Also, does anyone know a good video for a self massage? I've googled a whole bunch of them, but have yet to find one that's thorough and fun to watch. Not that it should be fun ....0 -
Here is a good one Janet. http://www.youtube.com/watch?v=pSD7j8mSVkM
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And here is a thread that might be helpful. http://community.breastcancer.org/forum/64/topic/808217?page=1#idx_7
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And SOOOOOOOOoooooo .....most of my paperwork and endless hours of phoning numbers was trying to get Canadian border services to take the taxes off they charged me for my brightlife sleeve order. 79 bucks tax for a 700 hundred dollar order. Medical sleeves are not taxable in canada but some newbie in the border services charged me at customs and when the mailman delivered them he would not release the order to me until I paid. GRRRRRRRRRRRRR
Oh and I still have miles of paperwork to send in with doctor prescription saying that I need them and then they will consider reimbursing me. Of course they want all the reimbursement forms which are reams of pages filled out perfectly to be acceptable.
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR! It is so stressful that I may just suck up the 79 bucks out of my pocket and have them keep my money for their department Christmas party fund. Oh and I ended up sending most of the order back anyway due to poor fit which cost me 25 bucks to send and insure it,GRRRRRRRRRRR end off rant and thank you so much for listening. Only good thing is that brightlife has a sweetheart return policy.
OUT 105 BUCKS, AND THAT SUCKS! Rhymes too:)0 -
Have been thinking of some of the girls.
Anyone heard how Kane is doing, she has not posted for a long time.
I just pmd purple32, I hope we get responses from both, miss them, wish all is going ok for them.
And to think I am grouchy about my stupid little problems ( my post above) when we have sick people here worse off. I should know better than to complain about my miniscule problems. Oh the whole cancer, LE stuff stinks worse than haggis wrapped in dirty bandages sitting in the hot sun!0 -
Going to look for some chocolate right away. Need a mood lifter ASAP! Will have some chocolate on behalf of Kane and Purple also. Night.0 -
Hello all,
Feeling a bit better about all this...honestly felt very alone in all this but, I it is definitely a comfort to know that there are more out there like me than I thought
I did go and poke around on line...found lots of good info about diet and exercise. It all seems to make sense. Cut back on salt, carbs and caffeine and increase vegies,fruit and drink more water. From what I can see it seems you should wear a compression sleeve when you exercise and do strenuous things. I have to say however, the sleeve just sucks. It feels really gross under my arm pit and I can't wait to take it off most of the time!! There are some pretty ones out there but still...blaaa! I go back for massage in two weeks.
Still trying to maneuver my way around this site and seeing what is out there...I will keep you all posted LOL!0 -
Oh, Hugs4u, you crack me up! Can I use your quote about haggis wrapped in dirty rags in the hot sun?0 -
Got the official training on my Flexitouch pump today. The therapist was great. She gave me some good advice and suggestions. I have no idea how I will be able to fit the hour treatment into days I work..."Some people get up early".....some days I get up at 0500, I am not getting up at 0400....So I will figure something out. Now I just have to figure out the $1400 copay.0 -
Marple - Thanks for the link, much appreciated. I watched the videos, and realize how much I don't know. They talked about uni vs bi-lateral and how the fluid should be moved either down, or across.
I don't know if my LE is considered bi-lateral. My surgery was bilateral and I had 20 nodes removed from the left, and two from my right. But my LE symptoms are only on my right. So - should I be moving the fluid down to the groin area, or across the other side? Also - I've been watching a lot of videos about self massage and no two are the same. One LE nurse told me that there are different ways of doing it and I have to figure out what works for me.
I'm trying to find a silver lining today, even though LE doesn't really have a lot to offer. And the only thing I can come up with is it makes fall/winter a more welcome option than other years, cus of the friggin sleeve.
I went out for birthday brunch last weekend and one of my girlfriends gently suggested I should leave the glove off cus it was distracting, and kind of (um) dirty. But I actually prefer the glove to my puffy flesh so I put on a bunch of sparkly bracelets to distract from my dirty muppet hand.0 -
Janet, until someone else weighs in (because I'm really not sure) I'd be moving the fluid down, not across to the other side since you have had bilat. mast. I'm not very impressed with your friend's comment. LE IS distracting!!! Too bad if someone doesn't like the look of your glove. It's not like it's giving you a warm fuzzy feeling either.0 -
Ooh, that's a new one--distracting! Hadn't thought of it that way. Sure wouldn't want to distract your, uh, "friend" now would you? You might suggest she wear a pair of dark glasses so she doesn't have to see it. (Where are those silly little emoticons when you need them? Mods, what have you done with all our facial expressions?!!!!)
It's not about whether your LE is bilateral, but whether your LE RISK is bilateral, and anytime you've had bilateral surgery, both sides are at risk, so definitely down toward the groin.
There is nothing simple about LE. (grumpy emoticon here)
Binney0 -
Marple - Yup - my friend's comment was dumb. And she's had BC herself. And it was my birthday! But I was wearing a fabulous blouse and all of a sudden she became a stylist.
Clearly I need a party glove.0 -
Yep, I'm thinking someone should think of manufacturing a glove that actually looks like it's been rode hard and put away wet. Hahaha. Sorry, no emoticons.0 -
I had my sleeve and glove on at work the other day. A co-worker, one who knows very well what mine is for, looks at me, starts laughing and says "that's quite a fashion statement!" I glared at her and walked away. I was speechless. Has the world always been full of such insensitive people and I missed it, or am I particularly good at attracting idiots these days? Janet - hope you enjoyed the meal regardless!0 -
Hugz, heres a gentle hug from me. ((( ))) Grrrr away! That is exactly the type of scenario you DONT need. Full rights to rant! Red tape and the like are ALWAYS ridiculous. Kinda reminds me of my dramas with broadband in the last week, ranging from very intermittent connections to none at all. So for the interim I configured dialup which they said they wouldnt charge me for and so I got a massive bill for ..... yup, dailup usage. Grrrr It would give me a massive headache to even try and give a very general breakdown that made any sense, let alone anything detailed. CRAZY CRAZY CRAZY. I have spent not hours but DAYS on this idiotic problem.
Janet Yeah that WAS a dumb stupid thing to say. Some people, and some friend. (Duh)
"Sure wouldn't want to distract your, uh, "friend" now would you? You might suggest she wear a pair of dark glasses so she doesn't have to see it. "
Thumbs up.
"someone should think of manufacturing a glove that actually looks like it's been rode hard and put away wet."
Thumbs up.
If emoticons could get "overuse syndrome" then an angry one at BCO would have done it's dash long ago. Perhaps that's why we never had one in the 1st place.
MOds must be changing whats under the bonnet. Getting all kinds of weird formatting issues as I type this post. I cant copy and paste.0 -
Dang lost my post. Weirdness going on mods!
Thanks girls for the encouragement. I am over my pity pary now and doing ok.
Linda-n3. Sure use my Haggis comment but only if you use dirty LE bandages and not rags because I am trying to recycle them somehow and this fits the bill. Oh and don't tell Carol about the Haggis because she loves the stuff.
Janet. Your friend is too concerned with her looks and thought that being next to your glove would distract everyone from looking at her! She is an attention seeker! That is my story and I am sticking to it! Seriously you should ask her if she had nodes out and if she did give her the LE story and warn her that she could be in gloves also or her arm could blow up bigger than yours and it would be way more distracting than a glove. Educate, educate, educate, then she has the chance to maybe apologize.
Hello any new ones!0 -
Excuse me breaking in here, but we are looking to show your faces, names and quotes at our fundraising event in October (www.rockforbreastcancer.org), and would love your help. This event is one of our largest fundraisers of the year and we'll be joined by hundreds of generous donors.
Specifically, we will have two projector screens up during the event, and want to show the people attending the event YOUR faces--- the women of our community, the women who use and rely on BCO ! Having the opportunity to share your photos and quotes that night will reinforce to our donors, in a meaningful and personal way, just how vitally important their contributions are to our community.
For this, we are looking for people willing to share a photo of themselves (either alone or with family, friends, pets, other BCO members, etc.), allow us to use your first name, say where you are from (it can be from anywhere in the world!), and give us a quote on how important BCO is to you. We are looking to have at least 40 people and have (only) a few weeks to work on this.
If you are interested, could you please email Melissa at mjenkins@breastcancer.org, with your photo, first name, where you live, and your quote? Also, PM us if you have any questions!
Thank you, thank you, thank you for helping us!!
Melissa0 -
If my "friends" made comments like that about my sleeve and glove, I might look for real friends. Janet, I wish I could transport to Toronto and give you a big hug.
I am thinking more and more that thoughtless people do not deserve our manners and should be told exactly what we think......0 -
Aww. Thanks for you support. People can be so disappointing. But - I still believe that most of them have good hearts, and for all the stuff we put up with, the angels outweigh the arseholes.0 -
Janet - I understand what you are going through - being compliant and wearing stuff in public always brings the risk of stupid remarks.. I can never think of a good response when I need them either. Usually I say - something stupid back and then regret it.. Funny thing is if I wear the drab beige ones, I don't get as many comments but really get bored with drab.. I wore my pink ones the other day to work and one of my team co-workers said I should tattoo drawings on them and told them I could buy them that way... She was amazed and we started talking about some of the awesome designs out there.. I jokingly asked if she was going to buy them for me.. She said, "you know, maybe I will. It will give both of us a pick me up laugh moment" I really let things brush off the best I can.. It is horribly hard when you are hot, sweaty, and the sleeves are gripping to your skin.. but I smile and move on..0
