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Kicking LEs butt!! Exercise & Self Care Log

Tina337
Tina337 Member Posts: 516
edited March 2021 in Lymphedema
Let's use this thread to post the exercise and methods of self care we are practicing each day to keep our bodies strong and our LE at bay. After experiencing a flare in my arm when I hadn't been as diligent in caring for my truncal LE, I am motivated to begin exercising regularly, performing MLD daily, and wearing prescribed compression garments. Rather than fall down on the job and become overwhelmed by this chronic condition, I want to challenge myself to kick LE's butt into a small, manageable corner! I started today. Here's what I did.




I still have my arm and hand wrapped, and I am also wearing my compression tank with round swell spots on each side in the underarm area 24/7 as per my LE therapist's instruction. This afternoon I did the entire Lebed DVD. Woohoo! It's a start. Yes, that DVD is still creepy! I'll have you know I continued with the exercises even when my husband unexpectedly walked into the room. I started making fun of the DVD, which was kind of fun, so I continued for the rest of the program taunting and making fun of the weird instructions, cheers, and "dancing!", etc. It actually made me feel more powerful and in control, and I liked that!
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Comments

  • Galsal
    Galsal Member Posts: 754
    edited March 2012

    I'm curious - what is this?  "compression tank with round swell spots on each side in the underarm area"

    Wore the prescribed sleeve, glove, breast binder today and did the wall walk-up arm exercises.

  • binney4
    binney4 Member Posts: 1,466
    edited March 2012

    Did 2 Lebed sections today (opening and legs). I'm still recovering from a really rough bout of flu, during which I coughed so hard I cracked a rib -- not even on the radiated side either!Yell So I've been wearing a Jovi night vest even during the day for the past couple of weeks, since my usual WearEase Cami HURTS! (The stupid vest is of course bulky and I look like a sumo wrestler or attack-dog trainer.Tongue out) Gloves and sleeves bilaterally all day except for a couple of quiet hours in the evening. Then Solaris night vest and sleeve/gloves for bed -- the "industrial look"Kiss

    Thanks for starting this, Tina! It's fun to think about the rest of you doing Lebed (or other exercises) while I'm doing it. My daughter and I have been making fun of the DVD from the first, cracks us up. She's got the whole thing memorized. The other day we were walking in the mall and they were playing one of the pieces from the DVD and she started right in exercising smack in the middle of the mall. Private joke, obviously, but we sure did laugh!

    Sally, here's an example of a compression tank:
    http://www.wearease.com/wear-ease-products/compression/slimmer

    And here's a page of swell spots:
    http://solarismed.com/products/swell-spots/112-swell-spots-product-gallery

    I'm not sure which one Tina uses -- maybe the "Sobol." I use the "Kimbe", which is more like a crescent moon.

    Tina, do you do anything special to keep the Swell Spots in place? Just curious.
    Binney
    Edited to add, I've done node clearing a couple of times today, but haven't done any MLD and probably won't as everything looks pretty good.

  • GottaloveNED
    GottaloveNED Member Posts: 60
    edited March 2012

    I wore my brand new glove and sleeve all day and I really, really wanted to take it off. You realize how stretched the old ones are when you get new ones. I give myself an hour or so of freedom to lotion up before I put on my Solaris, so soon I will be off to bed.



  • Galsal
    Galsal Member Posts: 754
    edited March 2012

    Thanks Binney...on track as usual.  I appreciate it.

  • carol57
    carol57 Member Posts: 1,550
    edited March 2012

    I took two flights today, so my self-care was to a) do MLD on waking this morning; b) not do the scheduled weight lifting this morning (normally 3 x per week), to avoid stacking up my swell risk factors, knowing I would be flying; c) wear compression all day and pump arm up in the air every so often while flying (ignoring looks of those around me); d) walk for one hour on arrival and e) it's bed time, and I'm about to do MLD before dozing off.  I can feel the tingles and ache from flying, so MLD will be extra slow and extra long.

    My bad behavior this week has been eating too much salty food!  It's hard to avoid while traveling. No amount of drowning myself drinking water seems to compensate. 

    I recently bought a pedometer and I wear it every day.  I find it's very motivating to get in all the steps I need.  On day's I'm on a treadmill or elliptical, the steps pile up easily.  On other days, it's a good reminder to get moving one way or another.

    I SHOULD do Lebed, but I really don't like it much, so that's what I'll be working on.  Thanks for starting this, Tina. I needed a nudge in the Lebed direction. Will have to try harder to avoid salt, too.

    Carol 

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2012

    Love this thread! So right after my post I will go stick in the Lebed Dvd. My daughter teases me and mimics me doing the DVD. I tell her "back off, your just jealous I have a date with James tonight"! We laugh.  

    I Have being wearig my sleeves faithfully for 10-12 hours now and the ever so loathsome gloves to.Shh don't tell, but I do take them off to cook, I know I shouldn't.  How do you keep that swell spot from drifting around your cami or underarmour? I need that big secret revealed!

    Carol57: All you girls get roses tonight for thinking about Lebed, doing Lebed or anything to do with Lebed! My MLD girl says do the opening twice a day. Lets try to do once a day at least.

  • Tina337
    Tina337 Member Posts: 516
    edited March 2012

    Yesterday the wrapping around my arm got kind of loose, and I started fiddling with it, trying to get back into place. Therapist warned me it would loosen up as day passed, the bandages themselves and the decrease in swelling would tend to make them looser. Happened a couple times today, and I successfully fixed. However, tonight after fixing, palm by wrist started bothering me, and I should have taken bandages off then. A little later palm by fingers felt funny, which was different place than other day. I really wanted to last with bandages until appt tomorrow morning, but I knew something wasn't right and took them off. Looks like fluid had been pushed into hand. Lesson learned, let bandages be or remove when they get too loose - especially since I don't know what I am looking at with all those layers at this point. So, I put my glove and sleeve on for a while, and now I am removing and going to do MLD before going to sleep. Hope I get some wrapping training tomorrow, as it does seem to have helped my arm.




    Sally, the tank I wear is similar to Binney's, Maidenform's "Control It". I looked and couldn't find my round shape on the Swell Spot page, so I pulled it out and looked at the label, and it's a Jovipak. Same concept, different brand. Binney, I just tuck them inside the tank and when I visit the bathroom, I check and adjust as necessary. Mine don't seem to shift around so much.

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2012

    Tina, thank you for encouragement, I just did the Lebed opening. I think I am going to try and stick to it at least once a day.  I did it a couple months ago on my break  at work and the girls just stared in disbelief. Gotta do what ya gotta do! 

    I really like the Maidenform control it.I tried about 500 bucks worth of shapers and this one is worth the bucks for comfort and trunk compression. It comes up high enough under the armpit for that swelling. My underarmour is my top choice but it needs a shelf at the bust level to keep  my foamy's from  floating around and something to hold the swell spot in place. I am having to adjust often. I vow to wear them forever althought this will be my first hot summer in shapers and  will be challenging. 

  • Galsal
    Galsal Member Posts: 754
    edited March 2012

    Hmmm...I've been told to wear Cotton right now.  I take it you all are wearing bras.  I'm not yet and still need the shelf bra camisole/tank type item until recon is done since had skin-sparing bmx.  I do have an Amoena camisole but there's no compression where needed.  I'll hunt around.  There's GOT to be something better than that purply flowered breast binder.  LOL

  • BeckySharp
    BeckySharp Member Posts: 465
    edited March 2012

    Thanks Tina for starting this.  I am so sorry your hand became swollen. 

    My day yesterday:  MLD when I get up and in evening before putting on night sleeve.  Lifted weights as prescribed by my therapist.  I am up to 5 lbs with four different exercises.  Wear sleeve and glove or gauntlet all day.  Wear jovipak and breast swell spot at night.  We had beautiful weather yesterday so I went out to a local dam that has a walking path and walked 2 hours--7 1/2 miles.  It has steps on each round (3) so climbed 180 steps three times.  It really gets me breathless.  I do the Lebed each day except for the legs, balance, and final dance.  I ignore them and visualize the exercises getting my sludgey lymphatic system slowly moving.

  • carol57
    carol57 Member Posts: 1,550
    edited March 2012

    Becky, I am worn out reading your post! What a great report!



    Carol

  • BeckySharp
    BeckySharp Member Posts: 465
    edited March 2012

    Carol--The high amount of cardio is to help promote weight loss.  I have lost 60 lbs of today since I started a year ago!  20 more to go!  My therapist promised I would see my LE abate quite a bit if I lost weight and she was so right.  I had Stage 2 but am now latent. 

     Today I did an hour on a recumbent bicycle.  Lebed and one MLD so far--another one tonight.  I only do the weights every other day.

  • sisterinspirit
    sisterinspirit Member Posts: 29
    edited March 2012

    Ah, Becky,

    That is so awesome to have lost all that weight!  Congratulations and keep up the good work! 

    Deb

  • carol57
    carol57 Member Posts: 1,550
    edited March 2012

    Becky, I know for sure that weight loss did great things for your LE, but I also know that you have been an amazing soldier in all the other LE-management routines.  I think you didn't just kick it in the butt, you gave it a TKO punch!

    I need to lose 20 lbs and geez...snail's pace and I really do work at it.  (Can I blame LE for that???)

    Today is not my best exercise day. Today's hotel has a fitness room heated to sauna-like conditions, with no way to lower the temp (I asked). Rain outside so walking not very good, and I was in a meeting for 8 hours and now I'm grumpy. Tomorrow I fly again, so I'm thinking MLD is the best thing I can do tonight and in the morning.  And I'm about to go to dinner -- restaurant --and simply have to psyche myself into finding some low-salt items on the menu.

    I will be very glad to be home tomorrow so I can return to a normal routine for fitness, food, and managing the LE.

    Carol 

  • Tina337
    Tina337 Member Posts: 516
    edited March 2012
    Becky, your story of weight loss, exercise and self care and its effect on your stage of LE is wonderful! I really need to hear this, as it reinforces my commitment to change my habits in a positive way. Congrats on the 60 lbs! Just amazing.




    Carol, your ability to keep your LE in check while traveling for several days and with so many flights is awesome. I have such a hard time with restaurant food when away from home for an extended time. I partly think it's a cumulative effect. Where are they hiding all that salt?!




    This morning I did node clearing and then went to LE therapist for MLD. She took measurements, and although area on hand and upper arm were still a little high, I am pretty much back at pre-flare levels. Measurements are still higher in upper chest and arm than when I was measured last summer though. Anyway, today she took measurements for custom sleeve and glove and remeasured for Solaris vest. Slight variations for vest, but pretty close. I thought my waist and tummy were larger, as my jeans are fitting differently, more tight in waist. However, my waist and midsection were actually a bit smaller than I was last June. I am almost a year post deconstruction surgery, and my body is still changing. So weird. I wish I had taken photographs. My LE therapist said my chest looks different now than it did when I saw her in December.




    So the plan while waiting for custom garments is to learn how to wrap, and I am wearing my tank with inserts 24/7 and off-shelf sleeve and glove during day. I went for a walk outside this afternoon, did at least a mile around the hilly adjacent neighborhood. Good first time out. Tonight will do MLD before bed.




    Oh, the other thing I have been working on is my sleep schedule. Working on consistently going to bed at same/earlier time and waking same time each day. While I have been trying to change this for a while, the past week was really good. I actually woke this morning right before alarm went off.
  • BeckySharp
    BeckySharp Member Posts: 465
    edited March 2012

    Carol--It is so hard to be compliant while traveling.  Hang in there.

  • carol57
    carol57 Member Posts: 1,550
    edited March 2012

    It is hard to be compliant while traveling.  Picture me staring down the DoubleTree cookie.  It's on the desk in front of me.  Still in its paper sleeve.  I did not have the fortitude to say 'no thanks' at check in.  So far have not had the guts to toss it in the trash.  I managed to navigate my way around sodium at dinner (relatively speaking), but now it's a war of wills with the cookie.

    If I move my pedometer to my knuckles, do we think that all the bc.org typing I've done tonight will fool the thing into thinking I got more steps in today?

    Maybe the best part of my compliance today will be to take Tina's cue and get some decent sleep!

    Thanks to all of you for support today--

    Carol 

  • binney4
    binney4 Member Posts: 1,466
    edited March 2012

    Today I did node clearing several times (I use the youtube video: http://www.youtube.com/watch?v=Q9FP6AHj9Eo&feature=related), just because it feels so good. Did opening and "Arm Stretches" sections of Lebed. Walked for 15 minutes, which is all I can handle after that wretched flu. Other than that I've been a slug, but at least my rib is not hurting today. I'm trying to be patient, but that is NOT my strong suit!

    You're all inspiring, and I hope to catch up with you before too long (at least to some of you -- Becky's way out there ahead!Surprised)
    Binney

  • carol57
    carol57 Member Posts: 1,550
    edited March 2012

    All things considered, in the spirit of this thread, I'm not sending you any virtual brownies today, Binney. But I do send you huge wishes for the rib to heal and for flu vestiges to exit the premises. Bounce back soon! 

    Carol 

  • Tina337
    Tina337 Member Posts: 516
    edited March 2012

    Binney, I love that video and have it bookmarked. The additional moves on the shoulder and back of neck really help with drainage. The presentation is straightforward and refreshing. I hope you are feeling better soon, too.




    Time to do the MLD! Then I am allowed to catch up on what else has been happening around here.

  • BeckySharp
    BeckySharp Member Posts: 465
    edited March 2012

    Oh Carol--throw that cookie away!  It is not going to get to the starving children in China.  As my mother says "let it go to waste,  not your waist".  When I see and crave something like that I think go get a carrot or celery.  If I don't want that I am not hungry.  Ha, ha--easier for me to tell you to do this than to actually do it!  Love the pedometer on the finger idea.  Think of the massive amount of steps we would accrue.

    Binney--Glad you are getting better.  Just keep plugging a little bit at a time.

    I am not sure I am "way out there".  Where is Nordy?  Probably out there running or climbing and has no time to log in with her accomplishments!  She inspires me so.

    Tina-Hope you got your MLD done.  Can't wait to see you when you get down this way.

    Have done my MLD and now on to weights!

    Becky

  • Tina337
    Tina337 Member Posts: 516
    edited March 2012
    Carol - yes, throw that cookie away - it's probably stale. However, if you ate it, I hope you thoroughly enjoyed! Happy travels home.




    Did MLD before bed and wore tank and inserts to sleep. MLD upon awaking this morning and wearing tank, inserts, sleeve, and glove. All this off-on with tank and inserts for MLD and showering is a PIA. Need to switch shower from morning to post exercise. There's insight into why I was falling down on the job, but after being wrapped, I have a different perspective. Scared straight, and sleeve and glove now aren't as uncomfortable as I remember. Need to buy some delicate bags for washing garments and wrapping materials.
  • kira
    kira Member Posts: 659
    edited March 2012

    Becky, I am so envious of your amazing weight loss and energy. I've crept up 10 lb and am desperately trying to get them to go away, but so far, they're staying.

    I have started to ride the recumbent bike 30 mnutes a day, and am up to level 10. I watch HGTV while I do it, and I've learned quite a lot about kitchen rehab....

    Today, I flew to Chicago, and am being a slug--I had to get up at 3 am for the flight. It's for a LE BOD meeting, so the intentions are good...

    Becky, please share your secrets--or probably it's not magic, just hard work and self-control.

    Summer/spring are approaching and I want to get back in the kayak again. Haven't kayaked or played tennis since 2008

    Kira

  • BeckySharp
    BeckySharp Member Posts: 465
    edited March 2012

    Kira--It is hard work and focus.  If I don't exercise a lot I don't lose.  I follow weight watchers.  This is my second go round losing. If I had kept it off several years ago I might not have gotten LE.  Who knows?  This time it is for keeps.  Ironically I am not having as hard a time losing on tamoxifen as I did without.  It says weight loss can be a side effect but my oncologist said I am the first one he has had who has lost!  I did not work last semester and am only part time which gives me more time to exercise--and help start a support group.  It was harder to get everything done when I worked full time until July.

    Did my weights and Lebed this am.  Then out to the dam with a friend where we did the 7 1/2 miles in 2 hours.  Now for a shower and MLD and the jovipak.  It is so loose at the top I have to bandage on top of it. It is almost like wrapping.  PIA as Tina says.  It took me a minute to figure out what she was saying!

    I mentioned yesterday that I am up to 5 lb wts but worked up very slowly and only as prescribed by my therapist.  Started (only two exercises with wts, one with theraband) with no wt, then one lb and about every month and a half move up a lb.  Just don't want anyone jumping up to 5 lbs suddenly.  I am going to stay at that for awhile.  I only do three sets of 15 reps of the four exercises.

    Carol--hope you got home safely

    Kira-Have a good trip.

  • carol57
    carol57 Member Posts: 1,550
    edited March 2012

    Becky and Tina--For the record, I took one bit out of that cookie, and it did not even taste good. So in the trash it went!

    This morning I got up at 5:30 for two flights home, so did some um... 'speedy' MLD before dashing for the airport. Wore sleeve and gauntlet.  Went to the gym for an appointment with my trainer, who attended a PALS for LIfe workshop at the gym in December, so he and other area trainers could learn what they need to coach women with and at risk of LE. I am up to 5-lb weights for upper body work, and when I'm home, it's 3x per week with the trainer. Honestly, I'm chicken to do it without him, both out of fear of losing form and triggering an LE event, and more so because my diep recon's body-part rearrangement has me being very cautious about slow-but-sure core strength work. 

    Oh--I am most proud that I went to the gym an hour before my training time, and I hopped on the treadmill for one hour, including running a bunch of 5-minute intervals.  Usually I do not wear the sleeve/gauntlet for cardio work --wear an Under Armour instead--but this time, thinking about today's two flights, I wore the sleeve and gauntlet on the treadmill and of course kept them on for weight lifting afterward.  My pedometer reads 10,464 steps at this moment, and that's without resorting to taping it to my knuckles to cheat at my keyboard!

    I ate like a saint today (so far) and today's model behavior is only possible because I ate too much and moved too little yesterday, and guilt apparently works really well for me!

    For sure I have a correctly-paced MLD session still on my agenda today, especially because I really do know that I should not have lifted weights on a flight day. It's just so discouraging to work up to 5 lbs in baby increments, knowing that if I miss two sessions in a row, I must back off the weight. I missed one of my resistance sessions this week so just could not face missing another one, which would have me moving backwards on those weights.  Truly, I just want to move forward in my strength training.  In the 'old' days, if I missed a session of what was then much heavier weights, getting back to it just meant risking some extra soreness.  Now, LE means that missing two sessions risks more than just some muscle ache, unless I return to the weights cautiously, i.e. lowering the pounds.  So I chose to lift, despite flying today, which normally makes me ache.

    Hefting suitcase, computer, etc. all week reminds me why it's so important to do strength training. I have to be able to lift 'stuff' in daily life, and I need to reduce my chances that will trigger swelling. My understanding is that slow, cautious resistance training is how to prepare the body for daily-life heavy lifting. Another reason that skipping a session weighs heavily on me, no pun intended.

    Wow this is long. Sorry!

    Kira, I hope you shake up the LE organization, and that today's air travel treated your LE with some modicum of respect. Becky, keep up the inspirational work.  My outdoor walking takes me to a dam, which is 2 miles down the road from my house. How funny we both have such a thing in our walking agendas! And Kira, we're on a lake and you can come hop in our kayak any time you like!  (Maybe wait 'til summer; it is Michigan after all.)

    Carol

  • hugz4u
    hugz4u Member Posts: 1,818
    edited March 2012

    Wow you guys are really motivating me. although it is almost 11pm. I am going directly to my Lebed dvd.  I havae done it once a day since this thread started

  • Tina337
    Tina337 Member Posts: 516
    edited March 2012
    Okay, I was both good and bad yesterday. After MLD in morning, I wore tank, inserts, sleeve and glove all day until bedtime. No exercise yesterday and succumbed to bad food choices after running errands and letting myself get too hungry. Drank lots of water after. MLD before bedtime, tank and inserts back on for sleep. Lights out earlier than usual, even though it was a Fri night.




    Woke up at 5:30 this morning and could not get back to sleep. Feeling rather claustrophobic in tank. Calmly lay there until 6:00, realized this wasn't going anywhere and decided I might as well do MLD since I'd have to do eventually. So, with that done, I was out of bed by 6:45. I gave myself 15 luxurious moments after MLD to relax totally naked in bed, really enjoying the tactile sensations of sheets, blankets. I am up and trying to decide what to do next - early morning is my favorite time to draw, but I already have all my gear on, including sleeve and glove. Glove is bad for drawing, so maybe I will go for a walk.
  • fredntan
    fredntan Member Posts: 237
    edited March 2012

    I'm a newbie,

    just googled Lebed method. I found it at healthy steps-Do I need the DVD and book? or will DVD be enough? I start Rads end of march

  • carol57
    carol57 Member Posts: 1,550
    edited March 2012

    Fran, I have both the book and the DVD, and once I read the book, I never looked at it again. Not sure it was necessary.  The DVD is easy to follow.

  • BeckySharp
    BeckySharp Member Posts: 465
    edited March 2012

    Fran--I only have the DVD.