Kicking LEs butt!! Exercise & Self Care Log
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Linda, it's great that you've decided to join us in this thread! We all have to accommodate our LE, but I think most of us in here would say that exercising with LE is different, but not out of reach. Sometimes we have LE setbacks that make us put exercise aside for a time (or we injure our posteriors in the gym, which has nothing to do with LE!!!). But we come back, and over the long run, despite sometimes feeling it's two exercise steps forward, and a half LE-penalty step backward, we make great progress. I'm a kayaker and looking forward to a week of 6-10 hour paddling days on a river next month. In my sleeve and gauntlet, of course!
Have you bumped into the step-up, speak out exercise-with-LE guidelines? Here are two links, the first for any trainer or fitness or yoga instructor you may be working with, and the second is for anyone who has or is at risk of LE.
http://www.stepup-speakout.org/Trainer%20doc%20for%20SUSO-040113.pdf
http://www.stepup-speakout.org/Handout%20doc%20for%20SUSO-040113.pdf
I'll look forward to reading your updates on exercise that you're getting; and we should also remember that Tina337 started this thread so we could report our LE care right alongside our exercise.
I'm still babying my butt. Dawne-Hope, I do plan to be back to my normal weight lifting routine on Thursday, with a trainer appointment. I'll be modifying or skipping some lower body work, but you can bet I'll be doing my arm work. Paddling is right around the corner!
My recent LE care: hydration, hydration, hydration and deep breathing. Not enough, I know. I haven't done MLD for a while; I'm experimenting and truthfully, I no longer see much difference if I do it or if I do not. My arm does not swell much, just burns like heck and aches like crazy when it flares, and I find that since starting to wear a Tribute night garment, the garment does a nice job of bringing those symptoms down for me. So I do the deep breathing and stretching before bed, just before putting my Tribute on. Glad to know MLD, which I did for a long time, in case I need it.
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Carol, thank you SOOOO MUCH for the links above. And thanks for the encouragement about kayaking - hope to do that again by next summer.
I have checked out the Step-Up, Speak-Out site several times, have it bookmarked, but have not seen all it has to offer. I am on vacation and yoga is part of my traditional vacation activities, and my body craves it, and had not done any in months. So reading the guidelines really helps me (ooops, already did a couple of no-no's, won't repeat the mistake). My supposedly excellent LE therapist discharged me from therapy after 11 session, said I had "plateaued" but did not do any volume measurements after the initial and 2-week mark, so nothing much more for him to do. Taught me MLD, wrapping, said continue range-of-motion PT that I had done for rotator cuff problems a couple years ago. Told me to "get a good fitter" and could get a private LE therapist if I wanted. Not much else, nothing about Lebed exercises. Ooops - wrong thread for complaining.
So I did yoga for an hour Monday & Tuesday, modified poses as best I could. Walked 20 minutes Sunday and today. Have my pedometer working again, will try to remember to use it starting tomorrow. Did Flexitouch (MLD substitute - I know the principals of MLD but don't seem to be very effective with it, left hand cramps and arm gets weak after about 10 minutes - I am sure that will get better as I get overall stronger, but doesn't do my LE arm much good for now!) for an hour this am, 1.5 hrs this afternoon.0 -
Hi y'all
Just wondering about getting it all together. Almost 2 months post rads and my lx&snd are till tender and swollen. June began working out gently at the gym with a compression sleeve...low weights just adding reps. Doing 30 min walks 5x a week, line dancing, Zumba, tai chi, yoga did not go well to tender to get in some positions.
When can I expect to kayak? Miss my 3-4 hr paddles...any ideas?
Am I on schedule or not pushing enough...
Appreciate feedback...what is mld?
Cindy0 -
Cindy, you seem to be doing great, and you're doing a lot but doing it smartly. If you haven't already, look into the links I posted just above, for some exercise guidelines specific to LE risk of LE. For the paddling, just keep in mind that paddling is a double-trouble activity for those with or at risk of LE--not only are you moving your arm and torso against resistance, it's an incredibly repetitive movement. Both unaccustomed resistance and repetition are tough for a compromised lymph system to handle.
So, before you pick up that paddle, make sure that you've given yourself lots and lots of time to build muscle strength slowly and steadily, so your arm will be ready for the resistance load. Then start with a short paddle and work up from there. I paddle long and hard, but I didn't get back into my kayak until about 9 months after surgery, during which time I was a very faithful gym person, working with a trainer following the PAL guidelines for weight lifting. You sure can paddle again, and 9 months may be much longer than you need to get ready for it (for me, seasons and weather had a lot to do with the delay), but don't push it too hard or too fast. Patience now will pay off later!
Carol
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Carol - Thanks! Will check out the links. Have a few friends that suffer from LE and I really don't want to do something stupid ...ugh. So ready to get life back ... New normal just gotta have lake time. Are PAL guidelines in the links?
Patience...yes I'll wait and work on building body up:)
Cindy0 -
I wanted to jump on here to ask for some accountability as I have decided to train with Team in Training for the Columbus Marathon (walking the half). I am almost 1-1/2 years post BMX with right AND. I have lymphedema in the right arm and trunk, but have kept it under control using daily LymphPress for an hour and wearing compression sleeves during the day. I also am a survivor of leukemia and have been under treatment for myelodysplastic syndrome for 20 years. I have been the Honored Hero for the Team for several years. As I am at a relatively healthy spot right now, my daughter challenged me to walk the half myself this year. You can see our Team page at pages.teamintraining.org/soh/columbus13/TeamAlway if you want our whole story. I am finding that I can get by with no sleeve while walking so long as I have time to pump following the walking/cross training. With the heat and humidity lately, the sleeve had to go during the workout. I just finished a 4 mile walk today. Does anyone have any good ideas for sleeves that might be lighter for exercise? I currently use a Solidea Micromassage sleeve alternating with a Solidea compression sleeve. Any input would be appreciated.
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OK Laural, you are accountable. You will do it!! I have used the Pearl Izumi sun sleeves when exercising outdoors. I showed them to the therapist at the lymphedema clininc and she blessed them as a lighter alternative to a compression sleeve in the hot summer sun. They protect from the sun's rays. The key is to get them to fit a bit tight similar to your compression sleeve. Plus, you can wear two and look sporty!
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I don't know anything about that Sun sleeve, but be sure to consider whether it has gradient compression. Our LE sleeves apply compression so that it's more compressive at the wrist, applying a gradual compression reduction upward to the upper cuff. Sport sleeves don't have that characteristic, as far as I know. I'd worry about creating added risk of pushing fluid downward, into the hand.
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Welcome to all our new movers and shakers and hello to the rest. I can't exercise right now because I am busy eating dark chocolate
But not all is lost because I am going for walkies in a half hour to walk the chocolate off.
Laural. Wow that is so awesome. Regarding lighter sleeves. I had tried the solidea and they are pretty light already. One good thing about them is they have graded compression. Remember that our regular sleeves are not sun protective.
I can see right thru mine when I hold them up to the light. They really need to improve these sleeves.I think the manufactures are really decades behind still thinking the old way, that exercise is bad for LE. Otherwise why won't they develop sun protective fabrics and more breathable fabrics so we can be more comfy and EXERCISE our brains out instead of staying indoors because our sleeves get to hot to be moving in.. You could put sunscreen on underneath but then that may "eat" the compression fabric.
Sorry for rant.Mariasnow. I think you have been doing surgery or something, how is it going? Are you able to exercise somewhat. That was a good idea you showed your non offical LE sporty sleeves to your therapist for an "OK" and the sun protection is a bonus.
Hopefully it is graded compression or maybe you are LE mild enough that is works for you. Wish I could do the same. Carol, You posted as I was composing. Thanks for input.
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Becky, Long time no see
You don't know how many times I have thought of you over the past few months. It is so nice to she you reporting in and your doing well too! Keep chipping and chugging away at it!:)Did 1 hour walking at a good clip!
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ok, since I sit at a desk all day and feel guilty with all of you, my new thing as of yesterday is that everytime I get up for anything...I also add a stroll around the plant (I work in sales for a printing and junk company)
got 4 trips today, not much but better than nothing!
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Arrgh, I'm still nursing my hip injury. Well, nursing and cursing! Got about 4 miles of steps in today, but only because I'm busy as a bee getting ready for family visiting next week (there will be 18 of us here and no, my house is not that big!). I am starting to miss real cardio and weight lifting, but I decided to be cautious and give the pain-in-the-butt problem some more time to heal. It's killing me to miss my workouts.
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Best to heal well before jumping back in, Carol. Enjoy the family. We did 12 years of extended family vacations together and have so many great memories. Tomorrow my oldest leaves to start a job in Austin, Texas. He graduated college at age 20, turned 21 last week and is now launching into his career. He is ready to fly, but still will miss those family times together.
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Laurel. They grow fast.
Reporting Lebed opening and only half hour walking. Had to turn back because it was too humid. We are sunny with raindrops falling lightly today. Weird weather. I am camping out in the basement this weekend as it will be too hot upstairs with our heat wave coming up from Arizona. Hey Binney! Do think that is very nice sending us this hot sunshine. Its going to be low 30's here which is mighty hot for us West Coasters. I hope we have our ocean breeze to cool a few things off.
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For many years, my parents hosted an annual week for my family and my brother's family, and as a result, my now-adult kids and their cousins are as close as siblings, even though they grew up 3 hours apart. So we continue the tradition, and their own kids are growing up to be fast friends. In a world where families can be so spread out --ours certainly is-- these kinds of family get-togethers are invaluable. I'm giving up some exercise time to prepare for the mob, but I cannot say that I'm unhappy about that! Hip needs a little more R&R, anyway.
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Off to Saturday Team in Training practice...4 miles today. The weather cooled yesterday so it it about perfect weather for an hour walk.
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Laural, what fun! Walking with others, I imagine? That makes it so much more fun.
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Hugz, happy to send a little warm sunshine your way
--or any way for that matter! I trust you're talking 30 degrees celcius, yes? About 85 degrees Farenheit, right? Even Nitocris in Finland doesn't think 30F is hot! We're supposed to reach 120F today, which is inching up there toward our record temps. Needless to say, I'm not out walking. I'm not cooking either--salad weather. But I am corking around the house, tripping over panting dogs. The whole lot of us is simply pathetic!
Binney (pant! pant!)0 -
Binney - No other words but ugh
That is horrible. It was only '80' here yesterday so I went for a walk in the evening which I haven't during the summer months since my LE started. It is usually hot and humid here and for it to be low 80's, low humidity is very, very strange indeed.
Hope it cools off very soon.
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What is your go-to sleeve for working out?
I need to buy new ones. Debating between juzo soft and Lymphediva. What do you all wear? My old ones are jobst.0 -
Dawne-Hope, I find that the Lymphedivas dry out faster, if that's of any value to you. I have in my drawer Jobst, Juzo Dream Sleeve, and Lymphediva. I have issues with the top of my Lymphedivas (silicone top) rolling slightly, but I find that when I'm all sweaty, the fabric seems to wick better than the other sleeves. I'd say my Juzos are a more comfortable fit because of the divas rolling problem. Mostly I grab whatever's clean when I'm heading for a workout.
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ok, so back in swing with my work out after nasty dumb cold/cough thing. Must asy the first couple of times it was like starting over and I only missed about 10 days. Need to work out a new plan with my little trainer as he teaches at 2 dif colleges so has a crazy schedule and my sessions with him are about over. Do I signup again or not? thinking we will work something out as it sure is helping my balance issues
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Trying to dodge the rain today to get in my 3 miles...hopefully will be successful. Cross trained yesterday doing Body and Soul work out video, an oldie but a goodie with aerobic, strength, and balance work all in one. Humidity is making the sleeve wearing difficult, even though the temp is staying nice here in Ohio. Dawne-Hope, I am finding the Solidea sleeves work best for me, alternating between the MicroMassage and Firm Compression sleeves, Both have a bilateral sleeve component which helps as I need the compression over the shoulder to keep from fluid build up there.
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Hi Dawn-Hope - I have both but prefer Juzo for working out...just stays in place better...the other for be is more my signature dragon girl kicks c to the curb look...rah!
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Thank you!
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I just tried an anti-inflammatory diet - Dr. Perricone's. Oh so bad idea. The diet made my lymphedema MUCH worse. Back to salads and whole grains and fruits...oh yes, and some chocolate too. I was also on an antiobiotic - keflex for a chest infection. I've been reading online it causes weight gain and swelling - my arm is the worst it has been. I've not been able to exercise for about a month with this chest breakdown issue. Stitches come out today and then hopefully I am headed in a new and better direction. I have been very depressed lately - but doing the best I can. I have much to be grateful for but let's just say many areas of life are nothing close to what I've hoped for or worked for. Today is a new day and I'm grateful to live to fight another one. I have a hair appointment after work. Having hair and hair appointments is actually starting to seem kind of normal again. I'm not loving my hair...but I'm oh so happy to have some! My vanity issues are depressing me because I'm going to a special event in my home town and going to see lots of old friends. I'm pretty depressed about how I look. I've put on quite a bit of weight in the past couple of months. I do believe LE depression is a big part of the cause - which of course makes it much worse. My profile picture was pretty much my happiest day in the whole battle. It was after reconstruction before reconstruction went awry - my boobs actually seemed to have "come out" good. Then...capsular contracture and lymphedema and a host of other issues threw my whole symmetry off badly and the non cancer side dropped out of the pocket and looks awful. This is planned to be resolved with a future revision. Not sure if insurance covers. If it doesn't, it will be a while. Then I found out about LE so I can't wear underwire, I gained a bunch of weight...and on and on. I don't look good. But, such is LIFE. I will go to my hometown for this event (in honor of my dad's lifetime of charitible work - he passed away last year) and smile and be happy I survived to attend and that my family gets to have me there. But, I'm depressed and feel let down...a lot. I won't lie. My sister also just hit her 11 year survivor mark. Hopefully I have her post-cancer longevity genes.
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Wednesday night did hill training with Team in Training teammates...35 minutes of hills up and down, followed by a 3 mile walk Thursday morning before going to the 4th of July parade in my small town (my daughter is drum major and this will be her senior year, so bittersweet watching her lead the high school band yesterday). Today is Rest Day...then a 4 mile walk on Saturday. One week closer to the October Columbus Marathon and still going strong. It feels good to be challenging my body again after a very bumpy 2 years. Thankfully the temperatures are staying manageable here, although the humidity makes it feel like living in the jungle.
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Back again, this time I need a swift kick to keep on the bandwagon. Missed two weeks of weight training, so now I'm officially on remedial physical training. Haven't been hiking either, and it's been gorgeous here.
The good news is that my VA claim for the breast cancer was approved. Previously, all of my energy was focused on this claim, now I can focus on exercise, nutrition, and LE care. I was thinking before, "Ok, when is stage II coming." Now, I can afford all the good food I want, all the massage I want, anything to take care of myself. Plus, I qualify for educational benefits to retrain myself, so may be going back to school.
So, for remedial PT, I am cutting all my weights in half, and building up from there. I had a scare this week, thought I was going to flare up. It was very hot and it taxed my arm a bit.
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Nibbana - congrats on VA approval of BC claim!
Yippee back to the gym...pounding those bones and lifting those weights.
Keep it light...do LED warm ups to open the lymphatic system to drain.
At the gym others look at me lime is tat all you can lift..but I know nice steady slow is better...less weight just a few more reps!
Work it out!0 -
Thanks for the encouragement RMlulu.
Did a complete chest ND back workout, so I'm on the way back. Felt good to stretch muscles again. Later on I'm going to pick up a new bike. The single speed mixte is too big for me and was causing pain in both inner elbows. I can sell it though and get a good price for it.
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