Kicking LEs butt!! Exercise & Self Care Log
Comments
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Becky - I have a ton of weight to lose and I am so glad to hear that losing weight has helped you so much. I am actually in Georgetown (Washington, D.C.) and I am attending Dr. Marga's seminar at the Four Seasons tomorrow. The afternoon dicussion is related to lymph node transplant surgery. I need to lose 150 lbs but I work out 3 times a week, lift weights (40-50 pounds in my arms and a lot more in my legs) and can knock out cardio - 30 minutes on the bike without difficulty. I have gained 80 pounds since treatment and I really need to get my act together. The idea that my lymphedema can significantly improve (mine is stage 2) by losing weight is certainly the most motivation I have had in a long time! Thank you for sharing! Emily
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Emily, I'm in DC for Dr. Massey's seminar on Saturday, too. Hope to see you there. I plan to include my BCO name on my name tag in case there are other members attending. I am hoping that once I develop a consistent exercise routine that my LE will subside a bit. I want to be like Becky and reduce mine to stage 0! Speaking of exercise, I intentionally stayed across the river and have to walk about 11/4 miles to the Four Seasons tomorrow, which means I will get in at least 2 1/2 miles tomorrow. Hopefully more since we'll probably walk around Georgetown.
Please tell me more about the indoor walking DVD, ladies.
MLD in morning and evening with lots of node clearing, deep breathing, fist pumping during car ride. Short break to walk and stretch midway. Lots of water and found fairly decent food without too much salt. Compression all day and tonight. Feel better upon arriving today than I did after packing last night.0 -
Tina--Happy to hear you arrived in great shape. Like Carol I also use the Leslie Sansone walking DVD at times. I also have a treadmill, elliptical and stationery bicycle. So if I cannot go outside I get to pick my poison. You can get the DVD at Walmart.
Carol--I listen to books on CD when on treadmill or elliptical. Makes it a lot less boring. Plus each CD is about an hour to 75 min long and keeps me on the machine. Our library is loaded with them. When in a hotel I take a CD book along to listen to while in the workout room. My bike is in front of a TV to get my 90 yr old Mom to use so I have that entertainment.
Emily and Tina--I started out Stage 2 LE in arm. I don't know about trunk stage. Anyway, I don't know if I am Stage 0 but my right arm (LE) is only 2% larger than left and slight volume only in upper arm. I just know my therapist said that it is latent. She did stress that I have LE and have to keep wearing compression garments night and day plus the MLD, exercises, etc. After 20 more lbs I get to start going w/o night for once or twice a week then periods w/o day. Says if I stay compliant I may be able to keep it this way but no guarantees. I will do anything to try to keep out of wrapping! Right now my right arm looks almost like my left. No puffiness.
I am getting ready to start exercising and house cleaning. Hope everyone has a good active day! Becky
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Tina, wow you have really set yourshttp://www.walkathome.com/try-walk-at-home/lf up for success on this trip! I'm going to Dr. Massey's symposium in Chicago, and really looking forward to that.
You can see some Leslie Sansone samples here: http://www.walkathome.com/try-walk-at-home
Emily, that's a lot of weight you're lifting! I was there before surgery, but now I'm following the PAL Protocol and have been taking the slooooooow route to rebuild upper body strength, starting at (what felt like a silly) 1 lb a few months ago, and now I'm up to (whohooo!) 6 lbs. Not saying you should think about reducing the weights, as you're already 'there,' but you might chat with whatever experts are in that room in DC about weightlifting stragegy for someone like you who is clearly able to lift the weights--is there any reason to suspect that backing off the weights and then rebuilding slowly might help the LE?
Becky, good thought on the books on tape. I'll try that!
Emily and Tina, have fun at the symposium!
Carol
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Had a patient tell me about the Leslie Sansone walks, and she loves them.
I watch garbage TV to get me through the execise bike.
I've been taking an on-line oncology rehab course--the one created by Julie Silver MD--it's called STAR, and they stressed that weight lifting should only be twice a week, as muscles need to heal.
There's an entire module on LE--I'm not there yet, but I'll let you know. Here's the irony: the LE clinic where I first got treated, and had my issues, I've forged an alliance with the director, and she put me on the grant to get this training. It's all on-line, and I so wish I could have a directory. I might print some of it out.
We're going to Boston--Carol?--to see our daughters, so I'll try and get some exercise and MLD in today.
Kira
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Kira, we are in Boston today, having just completed the Freedom Trail. The 294 steps up the spiral staircase in the Bunker Hill monument nearly killed me. So much for thinking I was in cardio shape! But I am racking up lots of walking miles in a most fun way, so no complaints. Sun just came out, it is stunning here, so I hope you have a lovely St. Pats day with your daughters!
Carol0 -
Carol, we just returned, having eaten our way through Brookline/Brighton: there is a huge Asian grocery, the Super 88 and my SIL is Chinese, and after pho noodles, we all bought tons of Asian food and my younger daughter bought us some dim sum for the 4 block ride back to her apartment.
I need to get some exercise!
My younger daughter lived in the North End for a short while, and we walked the Freedom Trail, and then got tiramisu.....
You're exercising, I'm eating.
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Oh Kira--you just made me so hungry!
Wow Carol-- 294 steps at once! A killer.
We had thunderstorms today so I walked on my treadmill for 85 mins. I only got 5 miles in as I did the highest incline for about a third of the time and could only do 3 mph when inclined. As soon as it hit 5 mi I quit. When I took out my pedometer it read 10,000 steps exactly! I have completed my two MLDs, Lebeds, weights and am now snuggled in my jovipak.
I don't think I have said but I HATE to exercise!!! But it is the only way I can lose weight.
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Becky, Way to go. I have to stop reading posts and get to exercising.
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Kira, I simply have not mentioned all the delicious food I have eaten since arriving in Boston on Wednesday night! Somebody please tell me that New England clam chowder has no fat in it! All I can say is that I am earnestly hoping that all this walking has cancelled out the food on the calories in/ calories out equation.
Today was a good walking day: 22,015 steps for 10.4 miles. I just started using a pedometer about a month ago, and I will say that it certainly keeps me honest about the exercise during the day. When I'm on an elliptical, it does not capture the steps very well, because it needs vibration and the machine is too smoothe. But for everything else I'm likely to do-walking, Leslie Sansone DVD, or treadmill work, the pedometer keeps tabs and even if it's off a little bit, there's no denying when I get toward the afternoon and haven't had adequate exercise. Like having Jiminy Cricket clipped to my waist.
On the LE care side of things, I drank buckets of water today (not even remotely tempted by any of the Irish national beverages!). I did morning MLD and will end with MLD in a few hours. Also I'll do some stretches, including some of the Lebed opening tonight. Then crash. My little legs are tuckered out.
Becky, it's a triumph that you exercise even when you don't want to. I don't like to exercise, either, but I do love how I feel after I do it, and especially when I've been consistent and realize I have a lot more spring in my step than before I was working on being fit. Exercise this week has been easy, because it has been mostly fun. Next week I have a few days of the real world, and then another long trip for work, but I won't have my DH to walk with so will have to work harder to stay motivated.
Carol
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Tina--Hope the conference was enjoyable and profitable. Are you back home yet?
Broken record--Went to dam with friend and did the 7 1/2 miles. Hot and humid so had to keep pumping and hydrate. We did decide to go up and down the steps each time rather than just up. I figured if I cramped up going down she would be there plus car was at the bottom. The first time we went up as fast as we could, not quite as fast the second time, and truly trudging the third time! Oh well much easier with a companion.
One MLD, Lebeds down, one more MLD to go. No weights today!!
We had some incredible thunderstorms last night. I should sleep better tonight.
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Becky, Well done! I am almost home after the weekend away. Did more walking, nothing speedy, but got in 5 miles plus a little bit. I am flying--between flights now--so focus has been to stay hydrated, wear sleeve and gauntlet, and try to move my arm. I will end my day with MLD in a few hours.
Carol0 -
Finally coming up for air! Still in DC, staying an extra night. Dr. Massey's conference was Amazing! I think I had a special experience, as she limited our group to 30, and probably no more than 20 attended. Dr. Massey said there were 230 people in Denver, and she wanted this to be smaller. I was only prior patient. Shadylady/Emily, and a potential patient and her husband were only other laypeople. The rest were LE therapists and a doctor (doc had brought three LE therapists). Dr. Massey told me when I arrived that this would be more advanced session but she thought I was informed enough to handle. It was so good to see her! Carol, you are going to love it! So much info, but I don't have the energy to talk about it right now.
Walked over three miles yesterday. Brief MLD in morning, drank tons of water throughout day, and very thorough MLD before bed. Compression for bed. Food was impossible to control during day. After pastries for breakfast, lunch was elaborate, the equivalent of dinner. Delicious. Cream of mushroom soup, grilled shrimp over a bit of sautéed spinach and a spicey tomato chutney/condiment, cheesecake for dessert. I ate half of each, as I have been closely monitoring my salt intake, which helps my LE. Prime rib and steamed vegetables for dinner. This morning I woke up very sick! Raging headache and upset stomach. Slept all day, finally got out of bed around 6pm, but still have an achy head. I am desperately trying to hydrate after not being able to keep anything down. Did MLD before getting out of bed. Only thing that sounded good was sorbet and a grilled cheese sandwich. More, more water. Will do another MLD before bedtime. No idea if this was food poisoning or random virus. Didn't have any alcohol for St. Patrick's day!
When I finally got out of bed, I realized there were over 15 missed messages on my cell. No reception downstairs in conference room yesterday, and since I left on vibrate didn't hear any calls this morning. Turns out my mother fell and broke her hip yesterday around noon, and she was taken to hospital (she is in FL). They were trying to get my consent to perform hip replacement surgery. Doctor determined to go ahead with surgery this afternoon and my mother is stable. I feel awful, can't believe I didn't know about this for more than 24 hrs when they were trying to reach me for consent, and can't go see her. I know she is in good hands, but the whole thing is upsetting. I can't talk with her as she has an oxygen mask for now. Fantastic day yesterday, followed crazy today. We are hoping to walk around and do some sightseeing tomorrow before we return home. This seems a bit off topic, but trying to manage LE while sick away from home has been interesting. I have a prescription for an antibiotic in my purse just in case.0 -
Tina, Yikes, you have been on a serious roller coaster, and I am so sorry to hear that your mother had to have hip replacement, and I am so super sorry for both of you that there was a miscommunication. She must have been worried, wondering why her doctors could not reach you, and of course, you are rightfully stressed realizing you were out of touch at such a critical time. All's well that ends well, as they say, but the in-between can sure take it out of you. Certainly getting sick did not help! I hope you're feeling better and can get back into normal mode pronto.
The conference sounds wonderful, and I'm looking forward to it of course. That you got three miles in, working around the conference, is amazing, because you had a pretty scheduled day.
Best wishes for a sightseeing day on Monday, feeling good and enjoying nice weather and some healthy walking!
Carol
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Tina--Such good parts to your weekend and such lousy ones! I do hope you are feeling better. I am on a low sodium low fat diet. If I ever several meals high in fat or sodium I get really sick. It sounded as if it was a lot of rich food. I do hope your mother is on the mend. How frustrating. My 90 yr old mother lives with me and I try to keep cell phone on all of the time in case she or someone else tries to reach me. I am fortunate to have a sister within an hour. Hope today goes well for you.
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Just checking in, as we are finally on our way home. MLD this morning, compression tank, sleeve and glove all day. Lots of water. We were able to walk around the Washington Monument, see the cherry trees in blossom, the Jefferson Memorial, and walk around The Mall past Smithsonian buildings, outdoor sculptures, etc. It was a beautiful day, and we really needed to relax.
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Tina, Yay for what sounds like a day that felt much better than yesterday! You got some great walking in, and sometimes 'relaxing' is just what the LE doctor ordered.
Today I was seized by the back-at-work bug and didn't do enough to manage my LE. No particular issues with the arm/side, but I did only about 25 cardio minutes, although I did work out at the gym with my trainer for an hour, on our weight lifting program, wearing proper compression get-up. I get a star for all the water I drank, but will have to do MLD tonight, especially as I did not start my day with it.
Carol
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By the way, I discovered the most delicious way to drink all the water on my daily intake assignment. A friend gave me several boxes of Trader Joe's Candy Cane Green Tea-decaffeinated, and while I was feeling so-so about it hot, today on a whim I made a bunch super strong for use in iced tea. Wow! Just pepperminty enough to feature the mint without it being overpowering, and it masks the somewhat bitter taste of the green tea. I usually sweeten iced tea, but this I like just plain.
The box says there is also vanilla and cinnamon in the mix, although I don't detect those. When I run out, I think I'll just brew some decaf green tea with peppermint tea and see what I get. To me, this is really good, and maybe I'll convince myself it's just as tasty as the citrusy grown-up drinks we tend to consume on weekends during the summer. (Ah...maybe not...)
Carol
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I have to say Becky is an inspiration indeed, but especially because she said she hates exercise. Here I was thinking she was the sort of person who loves that sort of thing, can't get enough of it, lives to move. That does not describe my lifestyle one bit. But, Becky, when you said you hated it I thought, well then! If you can do it, so can I!
So I've been walking, jogging, and Lebedding like crazy for the last two days and I feel tired, bored but incredibly self-righteous. I need to lose seven more pounds. Lost three last summer and haven't lost any since, but thanks to Becky hating exercise, I'm back on track!
Hate it; do it anyway! What the heck!
Binney0 -
Oh Binney--I could sit in one position for hours and daydream without moving a muscle. I think some people are born to be movers and some to be thinkers. I am in the second category (good excuse huh?) But since I want to stay on this earth as long as possible I make myself move. Since I have to put on a sleeve twice a day--once in am and once after exercise--I am trying to figure out how many calories I burn doing that! I don't mind wearing the sleeve once it is on but I do HATE putting it on! It does not want to go easily over my loose skin.
I was incredibly tired yesterday for some reason. I did my MLDs, Lebeds, and weights but only 15 minutes on the elliptical but not full out as I had been. I do feel great today so back to it! It is now too hot today to go outside so will do treadmill. I will be driving all day tomorrow which I love because the car is moving and not me!
I wonder if Nordy loves to exercise?
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I used to Love to exercise pre BC. I loved the meditative quality of weightlifting, getting in the "zone". It just felt so satisfying. I enjoyed running and hiking, and my husband always would complain that I walked too fast. I went hiking with a boyfriend years ago, and he said to me at one point, "Do you ever look around while you're hiking?" I did, but I had a natural rhythm/pace I needed to find to get in the "zone" and then I loved seeing what was (zooming) past me. I was fascinated by that feeling of being "at one" with my body in motion, if that makes any sense. Now I am out of shape, and I have this inner fear about pushing too much. As much as I do like to move, when I have gone through periods of inactivity I have found it difficult to get myself back into the habit. So, part of my issue in recent time has been lack of motivation, and not knowing how much is the right amount to push myself. One thing I have on my side is that when I had been inactive for a period, I always gradually worked myself back into shape. Never was into forcing my body to do things it wasn't able to do at the time, so as much as I had exercised I never injured myself once. Thank goodness that's the focus of the PAL protocol. For now, I am working on walking and increasing distance, and will then focus on increasing aerobic level. I'm getting my muscles to remember how to move right now! The motivation issue is why I appreciate the company here!
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Tina, very well put
Previously, I wasn't a natural exerciser, but discovered tennis, and I loved to chase the ball. When I gave up tennis with LE, and after I broke my hand, I just "went to ground"
Now, I approach exercise with some trepidation, but what I'm doing--walking and riding the exercise bike is so easy.
Yesterday, had a terrible, horrible, awful day at work, came home and vented and then rode the exercise bike to burn off some of the negativity.
If this thread didn't exist, I would have just continued to wallow in my misery.
Today has not dawned a whole lot brighter--just missed a Fed Ex package while doing MLD, but you know, I can just leave a signature tab and it will come tomorrow, and the other things that are upsetting me and my family--well most of them, I can't control. But I can control my exercise.
Thanks for the motivation and the re-framing of us as proactive and not victims
Kira
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Yay, Kira, on using the bike to burn off some negative energy! True, exercise doesn't erase problems, but it can make us feel calmer and clearer headed about them. It often temporarily shuts off that internal dialogue that's cycling (heh, heh) through our heads and provides a sense of distance and freedom from our worries and annoyances.
Today, MLD with therapist and wrapping 1.1 - I think I have a much better grasp of the process now. Surprised myself and remembered how to do fingers and think I got the hand bandaging sequence down now. My swelling, in spite of car ride home last night and bailing on full MLD before bed, feels so much better. I think the walking yesterday really helped.
Becky, what's the temp in TN?0 -
Tina, I invoked this thread with my students today--we were teaching motivational interviewing and smoking cessation, and they practiced with "standardized patients" and we talked about support and how important it is, and I said that I would never exercise unless there is a firm boot planted in my behind and if I felt supported and accountable.
Still a lot of negative garbage: although re: work--I talked to the psychologist I teach with, and he declared them "the devil I know": these are the same people who called me at the hand surgeon's office and demanded I get into work.....Free counseling.
Time to exercise and burn off some more of this stress.
It's supposed to be 80 here by Thursday.
Kira
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I have an exercise and heat question!
It is 82 here in normally chilly Michigan, and my breasts, formerly known as my stomach fat, are feeling mighty funky in the heat. I don't see swelling, but they feel heavier than normal. I am praying that this is some weird extended post-surgical response to the heat (diep in July; stage II with lipo and fat grafting in December).
In about ten minutes I'll be hopping around to a Leslie Sansone DVD and will report in later on my exercise and any heat-related LE outcome. Has anyone here had flap reconstruction to comment on this heat experience I'm having? This will be my first summer since the surgery. I was definitely swollen last July and August, but that clearly was breast swelling from the surgery. Sigh...I hope there's not more LE brewing here than I was accustomed to dealing with.
Ughh.
Carol
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Hi,
85 here today and humid. I think the heat affected me so much Sunday that I stayed in today. Packed and did treadmill for 70 min. To make less boring I varied every 30 seconds for awhile doing 30 secs of 6.0, 5.5, 5.0, 4.5. 4.0--then 3.5 for 2 1/2 min. Then start over every 5 min. Then 10 min high incline at 3.5. I did have a good book on CD to listen to. As usual two MLDs and Lebeds.
I am psyching myself up to get up early tomorrow and do MLD, weights, 30 min full out on elliptical, and Lebeds. Then off to Indiana by car. I am staying with a friend. I will have to be very careful with a decadent dinner I know she will cook. Then MLD at bedtime. Let's see if I am a success or failure. Kira you might have your students vote on the odds. At least they have a treadmill to use while I am there. Answer will be forthcoming tomorrow night!
Carol--I had a lot of trouble with heat last summer and my arm swelling. I did not go out for long periods when over 90. I dread this summer which seems to be already here.
We are having thunderstorms right now.
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what is MLD? Also, I have been trying to get my doctor to prescribe a sleeve and he says not yet which is frustrating. I am high functioning autistic[ Aspergers] and exercise has always alleviated many of the challenges. I NEED to exercise but I am afraid to unless I have a sleeve. How long did you all have to wait after surgery or did they make you wait until you were diagnosed with lymphadema? Thanks
Vicky
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Vicky, some people who are at high risk get a sleeve and glove for exercise, if your doctor is reluctant, perhaps you could be evaluated by a lymphedema therapist who could assess your risk and the need for garments.
MLD is manual lymphatic drainage which is a kind of massage to move lymphatic fluid, a lymphedema therapist could teach it to you.
Exercise is very important.
Here's a link to finding a qualified lymhphedema therapist.
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Please let us know how you're doing.
Kira
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Vicky, MLD is manual lymph drainage, a special massage-like technique we use to gently nudge trapped lymph (the fluid that makes us swell) around areas of damaged lymph vessels and/or missing lymph nodes. The idea is to reduce swelling by manually draining the lymph--giving it a pathway to re-enter the circulatory system.
A qualified lymphedema therapist performs MLD during intensive lymphedema therapy, and as the therapist helps us to control our LE symptoms, he/she will teach us to do MLD for ourselves. It's not something you can pick up from a book or a video, because you need some good hands-on training to learn the light touch you need to apply, and because the direction you move the lymph using MLD is very specific to a patient's individual LE.
Doctors seem to differ on whether they recommend wearing a sleeve if you do not have a lymphedema diagnosis. If you do have LE, it's very important to use a sleeve and some hand compression when you are lifting heavy weights or doing lots of repetitive arm motions. So, you can see how working out in a gym or doing jazzercise or other arm-intensive cardio might require a sleeve for someone with LE. If you don't have LE, but are at risk, a sleeve is probably not needed for cardio, but it's a judgment call for weight lifting.
Why not ask your doctor to talk you through this? If you have lots of LE risk factors--say, lots of nodes removed plus rads to the armpit, and if you're seriously overweight (a known LE risk factor), you can sure tell your doctor that you are aware of heightened LE risk and want to understand what he thinks are the pros and cons of wearing a sleeve during exercise.
If you have swelling, a feeling of heaviness in an arm, or tingling, then you should be insisting on an evaluation by a qualified LE therapist. If your doctor resists, and you believe you have symptoms, there is wonderful information here that you can print and ask him to review: http://www.stepup-speakout.org/what_we_need_healthcare_providers_to_know_about_lymphedema.htm
I had an LE diagnosis before I started wearing a sleeve. I had to push quite a bit to get a prescription for LE evaluation/therapy, because my surgeon just did not want to believe what I was feeling could be LE. I pushed hardest when I was approaching the time when my plastic surgeon would give me the green light to return to weight lifting after my reconstruction. When I finally just laid out for him why I was worried and the importance of safe weight training, he responded very well and wrote the script. So I can relate to what you're feeling.
I do hope you can work with your doctor or a lymphedema therapist to sort out your risks and get you going on whatever precautions let you get back to that exercise!
Carol
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Today's LE compliance report: Tons of water (easy b/c it's hot here), one hour of Leslie Sansone cardio DVD plus some miscellaneous walking. No morning MLD (oops) but I will do evening MLD soon. Just cannot bring myself to do Lebed. I'll try harder on that tomorrow. I ate heaps of veggies today, hoping that counts for something! (Becky, I too hate exercise, or at least I hate getting started on it each time. But I do love fruits and veggies--for me, that's the easy part of a weight loss plan.)
Carol
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