Kicking LEs butt!! Exercise & Self Care Log
Comments
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Purple, welcome to the 'crying into the wilderness' club! I have similar frustrations.
I tried to get the hospitals in our area to work in partnership with local gyms to offer some group PAL-compliant weight lifting classes. I brought in a workshop (PALS for Life) and two of the hospitals gave sponsor money to defray workshop expenses. But neither of them is willing to take additional steps to reach out to area gyms (or even their own cancer center's affiliated fitness center) to put on the classes. We trained personal trainers and LE therapists to teach the classes. The LE therapists believe they cannot bill and get paid for teaching fitness classes (although now at Penn in Philly they have OTs/PTs doing just that, and I gave them the UPenn contacts and related information). Nor are they willing to take any time at all to engage with the personal trainers who came, to ensure that safe weight training is available to everyone in our area. My own trainer is willing to give a twelve week group PAL session for free, to anyone who wants to come, no gym membership required. But will the local onc and the hospital's therapy division (where they treat LE) do anything to get the invitation to their current and former patients? Nope! It's as though everyone just wants to keep the LE status quo, which is to say just keep us in the dark so we don't ask too many questions.
I love the thread Cookiegal started yesterday, asking if any of the big charities like Komen will ever get serious about LE. She and Kira expressed that frustration perfectly. The problem is that our medical community doesn't take LE as seriously as they should. So there's no awareness on which the charities can build. They probably think WE don't care about getting education and risk reduction information to women at risk and who already have LE. Because nobody is shouting for it on our behalf. We're all out in the wilderness!
Rant, rant, rant...but it feel so good!
My exercise today was minimal. Babies on knees. Rocking...I hope that counts as exercise!
Carol
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Carol - I don't know about exercise but it sure counts as therapy.
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Carol, I bet you have done your fair share of deep knee bends with kiddies. Yup that counts!
Becky, Where are you. Did the dam swollow you up?
I misssssss your encouraging reports.Purple. I did qichong a bit when I was first diagnosed. It was wonderful and I don't know why I don't do it again. SOOOOOO relaxing.
Learned self mld at last LE session and did that on awaking. Did lebeds opening and 40 min fast walk. Did lots of belly breathing today, especially paid attention to breath while driving.
I succumbed to costcos fries and woke up this morn with a bit of swelling in the crotch of the elbow. This is my sign that the fries had too much sodium which I never even thought of as I was having my mouthparty with them. I looked up the content of salt and nearly fainted! eeeeks.
Going to bed but Lebed opening first.
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The problem is that our medical community doesn't take LE as seriously as they should.
And the thing is Carol, we cannot afford to " not take it seriously." OK, I dont think that sentence was grammatically correct, but I'm in a hurry! grrrr! ( wrong thread again)
Oh, it's so frustrating becuase it IS ' the medical people' that are putting on the woirkshop with the R bands. I'm sure they just think I am ignorant. They will not listen. grrrr again.Oh yes- babies count !
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Learned self mld at last LE session and did that on awaking. Did lebeds opening and 40 min fast walk. Did lots of belly breathing today, especially paid attention to breath while driving.
Wow, hugz
Thats great! I doubt you could fit the qigong in ( but do try )
No more fries for you- called it !
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I did buy some resistance bands early on in my exercise program. My ex-LET didn't say anything about resistance bandes being bad, so I bought them. I don't use them anymore, the only thing I used them for is pulldowns for my latissimus dorsi. I really need to get my lats and rhomboids in shape and I'm so tempted to get the resistance bands back out to throw over the door for some pulldowns.
I do pullovers, laying on a bench, with my 15 pound kettlebell. I hope thats helping my lats and rhoms.
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My PT (who works with my LE-T) had me using resistance bands to try to regain strength, flexibility, reduce pain in me BC side arm and shoulder - but she gave me the lowest resistance ones and said to stop as soon as my arm started to feel tired, even if it was just one or two reps.....
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Did my mld in bed and stretched. Which is easier or correct, Mld, doing it standing or in bed? In bed, on my back, my shoulder gets tired from holding my arm up. I am new to self massage. I do Lebed mostly but realize I need all tools in the tool belt.
Now off to physio for this dang back/hip. It is slowly improving.
Must walk today. Will use poles.
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Hugz- I cannot do all of MLD standing up, I can do some of it standing - the neck, down the sides, but when I come to the arm I do it sitting or reclining on a bed or on the floor...usually finish there too. But often I start standing up.
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I do my MLD in bed, it relaxes me for sleep which is a nice side benefit.
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I do my MDL in bed.
Today I am just about to walk 2.5 mils and will have 20 mins of rebounding. Been pretty consistent with this routine all week, and was bummed to find out at the doctor's office weigh in this morning I had gained 2 lbs. Grrrrr. This is why I never weigh myself when I am dieting, it is discouraging when you are good and work hard and loose nothing, or gain. But unfortunately I have to weigh in weekly at my doctor's for my Herceptin treatment. Grrr!
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Grrrrr is right, Victoria! Scales are the pits.
Especially with LE we can gain a lot from fluid retention, sometimes when we're least expecting it, and it sure is discouraging. Next time, don't look!
A recent blog post by Joe Zuther of ACOLS (therapist training school) suggested you could do MLD sitting up, but relaxing sure helps with lymph flow and that's harder to do sitting up. I do find it hard to hold my arm up though, as Hugz mentions, so I support it on a pillow in bed.
Bottom line is, best to do MLD when and where you're most likely to actually do it.
Be well,
Binney0 -
Have to help my DD study for her science midterm tonight, so very proud that I went to the gym at my lunch time at work. Did 2.5 miles on the elyptical in 35 minutes
. Couldn't go any faster or I would have been too sweaty to go back to work.
Would rather have gotten my exercise bouncing a baby on my knee though0 -
hugz
you can try the MLD sitting if standing is an issue. I have , but I prefer it on the couch, propped up and watching tv, lying down
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OK so I called the place where they use the R bands and told them of my concerns. One of the ladies I spoke to was an RN and had 16 nodes removed. I made it EXCEEDINGLY clear that I was nobody but a LE pt. who'd been doing a lot of research and had concerns- an expert of NO KIND!
She thouight it over and said : " You know, it makes SO much sense to me ! I actually used those dam* bands , but I never will again!" I repeated that it was merely a CONCERN, and she said : " But it makes perfect sense, and a concern is good enough for me with 16 nodes out."To each his own, but until I see studies that prove R bands do no harm, I personally will not use them either.
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I found the dvd on ebay for cheap. Just arrived today!
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Purple, GOOD FOR YOU to be so tenacious in sharing, and especially explaining, your concerns!!! It sounds like you have a convert, and that is just terrific.
No stroller walking today, because it's bitter cold outside. I did my quotient of baby bouncing, playing kitchen, reading lots of books, building blocks...you get the picture. AND I used naptime to work out with Leslie Sansone! Lebed yet to come.
Carol
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Have you ever skipped exercise, Carol?! Talk abouit tenacity!
I did 2 miles with Kendra Kemerley ( exercise TV) and went on the rebounder twice yesterday. I woke with sore knees this morning ( hmmm...keep forgetting a broken knee was one of my injuries) ouch. Maybe better slow down a bit here. I am sure I am causing inflammation. Perhaps a tylenol. I dunno'.Then , went for some MLD in the shower followed by extra long MLD while watching TV last night. Got caught up here in the forum this morning and doubt I will get much accomplihed before work - speaking of which, I had better get up off my ars and get ready!
Have a great day , ladies. Must keep moving here - we are in deep freeeeeze!0 -
On the posture issue - I signed up for a stride/running clinic at a local running shoe store last week - it was given jointly by a foot-ankle doctor and a sports PT. They get you up on a treadmill and evaluate your running stride. You also fill out a form with your goals and any issues you have, and they sit and talk to you about all of that. One thing they noticed immediately is that I was running slightly bent over. As I walked around afterwards, I realized that I was slightly flexed at the waist even while walking and standing. I had DIEP surgery, and while the area is no longer tight, I believe that because of the surgery I got into a bad habit of staying slightly flexed at the waist. I've been trying to concentrate on maintaining more of a "mountain pose" (shoulders over hips over knees over feet) and I feel like the LE fluid is moving better through my truncal area. We'll see.
Yesterday was a stretching day so I did a stretch yoga DVD before work, then did some work on a foam roller after work to stretch out legs and back. I have to adapt how I use it a bit for some of the exercises so I don't put all the weight on my hands, but I've worked up strength over the years so I'm strong enough to rest on my forearms without LE issues, so that should work. This morning was a cross-training day, so 30 minutes on the elliptical. Did MLD but no Lebeds yet - I've been lax about those lately and I don't know why.
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Purple, I do indeed skip exercise once in a while. Not often, but it happens. I read some online exercise tips yesterday, for people who travel for business. One tip was from Chris Freytag, the DVD workout leader and an advisor to Prevention Magazine. Her tip was that she never lets two days go by without doing some kind of workout, even if it's in a gross hotel fitness room or, lacking any other options, an in-room workout of some kind. I think the two-day window is a very good one--allows for letting exercise go from time to time with no guilt, knowing it will be high on the priority list in a day or two.
I think the biggest reason I don't often skip exercise is because after about nine months to get myself pretty fit, I really, really like the feeling, and I'm paranoid about letting it go. It took a long time to actually enjoy the hard work of a fast-paced cardio workout, or lifting weights. I don't want it to feel like 'work' again, so I stay with it, to keep what I have already accomplished. I'm still no athlete, but happy where I am!
Carol
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oops, almost forgot to report on today's exercise! Did two miles of intervals with Leslie Sansone, plus an hour of weightlifting with dumbbells, then stretching. Bundled my granddaughter up like a mummy for a half-hour walk outside (she loved it and stayed toasty warm in her stroller). Total mileage about 4.5 for the day and I feel great just having stepped outside into the sunshine!
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I worked out with my trainer today. Felt good. Cancelled on Friday because my stomach was hurting.
I'm having a hard time bouncing back health-wise. I got the flu shot in the fall and I'm wondering if I have the flu ... but the flu shot is preventing it from being full-blown? My stomach has HURT for a week but that's all ... just pain.
Walked a lot downtown on Monday and it hasn't been this cold since I've had LE ... had no experience with rebound swelling ... but it was in the teen's and windy ... so I froze ... and my fingers were swollen that night ... so yes, now I know rebound swelling is an issue for me when's it is frigid outside. But I'll gladly take it rather than the summer heat.
I think I'm on the mend. Feel better than I've felt in about 4 weeks.
Stay healthy and stay warm. xoxo
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Her tip was that she never lets two days go by without doing some kind of workout,
sounds like a good plan, Carol- and I love Chris Freytag. May I ask, if you dont mind answering on thois public forum- can you lift the grandkids ? I mean, like a 1 or 2 yr old ? Since you have bene comditioned so to speak with the weightlifting, would it bother you to do so, if wearing compression?
Alternatively, f you would feel more comfortable answering this : how much weight can you confortably lift with reps in dumbells?
If for any reason you do no want to reply, I do understand.... not trying to pry mind you, just looking for a hopeful answer and trying to get an idea by quantifying.0 -
Purple, these past ten days, I have been celebrating the fact that I've been faithfully lifting weights, respecting precautions from the PAL protocol! I am currently lifting two 15-lb dumbbells on a chest press and bent-over rows, two 12-lb dumbbells on a biceps curl, and I'm using a 9 lb dumbbell for triceps work. There are lots more lifts in my program, but those will give an idea of where I am. I do 12 repetitions, which means that if I did just one repetition (like lifting a child every so often), I can safely lift much more.
I lose ground regularly with my crazy work travel, when I have to miss two sessions and then back off the weights, but slowly and surely, I have built some strength. So, I can indeed lift the grandkids, but I'm wearing my sleeve and gauntlet all day, every day, just to be sure I minimize the LE flare risk.
One wonderful byproduct of doing a weight lifting program with help from a trainer, is learning proper form. I really do pay attention to that when I pick up a child (or a box or a pile of books, etc.), and it's because I'm so aware of proper lifting mechanics. When I was kayaking all week last summer, I realized I could shift the resistance burden on my arm by picturing myself doing a seated row at the gym, which shifts the weight from the arms to the back. It was not the customary way (nor the most efficient way) to paddle, but I used it periodically each day to give my arm somewhat of a rest. That benefit of a supervised weight program is priceless to me--helps me lift things safely in daily life. Oh, like putting a bag on a TSA table or in an overhead bin!
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Carol, you are the master of your universe. Just look at what you CAN do because of your great self LE care.
I love the idea of not letting 2 days pass without moving. I am going to meditate on that!
Gotta go do MLD etc. Wasted so much time at the passport office waiting and because I forgot some of my papers and had to walk to the car twice, that was about a good 20 minute fast walk. eeks, ate up the day! Maybe it was a good thing I forgot my papers in the car!0 -
. I am going to meditate on that!
OK, hugz- enough meditatiing. Now , it's time to DO the exercise!
All kidding aside, Carol- you are truly an inspiration. Thanks very much for your detailed reply . I appreciate it, and I am sure it will give others the best idea of how this has been a slow , gradual, closely supervised process that has paid attention to every little detail, building until you got to where you are.
thx
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Strength training on the schedule for this morning, so I did MLD, half an hour of strength training, and did the Lebeds for the first time in a few days. 30 minute run on the schedule for after work tonight - since it's in the teens here, I will definitely be running inside on a treadmill!
Carol - what a fabulous opportunity to participate in a PAL protocol. Over the years I've gradually built up to 8 pound weights, and it's made such a difference in being able to do every day things like lug groceries or pick up a box. I'm impressed that you've been able to work your way up to the weights you're using, especially since I know you did it slowly and carefully. It's nice to know that done properly, slowly, and carefully, there's a chance I might get back to close to my pre-dx strength.
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I remind myself often that I've been very, very fortunate in that my bmx/diep was prophylactic, meaning no chemo, no rads, no hormone therapy. And I suspect that means that absent the full-body abuse that many of you have powered through, I have had an easier time than most with my recovery. My only side-effect issue is the LE, and once again, I'm blessed that my case of it has so far been pretty mild and easily controlled. Fear of worsening it keeps me on the straight-and-narrow with the weight lifting, but so far--knock wood--so good! We all have so many different challenges that stand between us and the fitness levels we desire, all the more reason to keep in mind that we each do what we can, when we can, working at our individual paces.
And...I WAS fortunate to be able to help my trainer get trained in implementing the PAL Protocol! The wonderful PALS for Life program travels around, to train personal trainers and LE therapists. I brought that workshop to my town, with the help of some hospital sponsorship funds. I mention this pretty often, because it was that wonderful of a program! Anyone who lives remote from the Philly area, where the UPenn folks run the actual PAL programs, can bring PALS for Life to their town. PM me for lots of details, if interested. (I am a big fan of the woman who puts on the workshop, but not a paid spokesperson, really!)
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I just got back from my last visit on the PAL study. I feel very fortunate to have done it. I asked the lead study coordinator what was next for him since the study will be completed in a few months. So crazy, their thinking goes right along the lines of this thread. They may be coming out with a DVD, and also may be setting up programs around the country. He did say that they did not think it was going to work out doing anything with the y. His reasons were that the turnover was too high. Had a good visit and chat with him.
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Kay_G - You are fortunate! What a blessing!!!!
Would be awesome if they did a DVD.
My life is way too busy and crazy right now ... but someday I'm going to contact carol57 ... I would love it if the trainers around here had a chance to attend a seminar led by these people. I'm near a large university ... there are a couple of Gold's Gym nearby ... I am friends with a lot of the Gold's Gym personnel and I think I could persuade the need for it ... I honestly just don't have the time right now.
Like TinaT mentioned several pages back ... I'm trying hard to put the pieces of my life back together after the last couple of years ... but maybe in a couple of more years I'll have the time, energy and stamina to head something like that up.
Right now ... all energy is focused on job and emotional healing. xo
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