Kicking LEs butt!! Exercise & Self Care Log
Comments
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Tina, your mom sounds amazing! 92 years young! Wow! Your husband sounds even more amazing! What a great guy and son in law. I do hope there's no shoe coming his way today but I sort of can appreciate how angry and frustrated your mom must be. You do have a lot on your plate and dealing with aging parents is so hard, especially from so far away. Hang in there! Appreciate your posting about bra/cami shopping. I'm still searching for comfort and compression.
My exercise yesterday was 30 minutes of Just Dance on the Wii with my daughter! Nothing more embarrassing and humbling than having an 8 year old critique your moves all the while wrapped in ultra fashionable compression! Followed by NORTON DVD, MLD, stretching and chocolate.
Carol, I think you are traveling today? Good luck and hoping for non swell flight.
Ball bouncers! You rock (or bounce)! Love the crazy bouncer in the corner visual! Let's all unite and bounce away.0 -
Someone should make a youtube video of hulking and ball bouncing. Becky???
Seriously, I think I will suggest to my trainer that he add some of each to group training sessions for bc survivors.0 -
Actually I do my ball bouncing at home in private! Carol is the one who goes to the gym. I do pump every ten minutes out at the dam. Some people think I am waving to them and wave back. One little girl asked why I was doing that as if I were crazy. When they see my sleeve I think they figure it out. Only MLD and Lebeds so far as I have company. Will see how far I get this afternoon. Retail therapy. I HATE to shop! Stressful for me. I love to read for pleasure or listen to music for pleasure.
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Oops, Becky, I thought you did the gym, too. Okay, so you're not a public bouncer - yet! I prefer music and reading, too. However, over the past year I have enjoyed retail therapy since it's been all about finding new clothes for the new flat me, post deconstruction. It has helped me feel good again about my appearance. However, compression tops are not fun at all, but it has been on my to-do list. I can only try on a certain amount of things in one day before I start swelling, so I have to do in a few rounds.
So, yesterday was a bust and I stayed up way too late rummaging around on the computer. Back on track today. I feel like I took this thread off topic with my personal ramblings (should trot those over to the Grrrr thread), but I really appreciate all of your kind words. Carol, I think we must have posted around the same time yesterday, as I somehow missed your response to my long post.
Catherine, did you Mad Men yourself? You look very cute! I will continue to post the results of my compression garment research. Did you find an UA that works for you? That is slated for my next round of shopping later today. First, some exercise and self care to limit the swelling of that expedition!0 -
Tina, ramble away when needed! And I agree on the small-dose shopping. I have to travel a good distance to find a clothing store, so I tend to wait until I need a few things, but it gets tiresome fast because taking off/putting on tries my patience even when I'm not feeling puffy. Yesterday I was in a perfect little town with fun, non chain stores, and walking the streets from place to place was pure pleasure. And I found some fun duds. I have lost weight since surgery (but not as impressive as Becky's amazing work!), so it is fun when I find something I really like that would never have worked before.
Today was a two-flight day, and I got 30 minutes of fast terminal walking between flights. Then once at my hotel, I found the fitness center all wet, including the treadmills and other equipment, after a group of kids went from the pool to play on the equipment. Not sure how they didn't get hurt! So I did the stairs to my room three times in a row and then walked my floor for another 15 minutes. 16th floor! I took the elevator down each time. Thought of Tina while walking up! Pedometer says 5.66 miles. Also, I did lots of kegel breaths in the airplanes. And neck clearing twice each flight. Along with fist pumping, this really seemed to help because I have no postflight ache tonight.
It is really wonderful to feel accountable for reporting in here. Thanks, ladies. It means a lot to know I have company in my LE care.
Carol0 -
Carol, so good to hear you arrived with no post-flight ache. Those kegel and hulk breathing exercises are terrific. Walking to the 16th floor three times - that's really something! I am curious, but with all your airport walking, do you wear workout clothes and sneakers when traveling?
I am pretty much back on track today. Compression, water, 500 steps, bouncing, ab exercises, stretching, hulk and kegel breaths, fist pumping, queen's wave, and cat scratch. Now I'm off to bed to do a slow and thorough MLD. Thought it best not to shop again today for compression tanks/tops, as I was a little swollen last night.
I forgot to mention I spoke with my therapist about the four week training sessions using the PAL protocol. I had thought it wise to save my insurance for MLD and appts during 2012 since I could pay the PAL trainer to come to my house and do a refresher. She charges $60 an hour, and a therapy session is $130 if I've used up my allotted sessions. According to my policy, there really isn't a limit on therapy for mastectomy-related LE, but that would probably require tangling with my insurance co again. Group participants can now pay for sessions out of pocket, about $35 a session. Financially it makes sense to do it this way. My therapist thinks it would be helpful since I haven't done weightlifting since my deconstruction or arm flare and I would get close supervision and monitoring. The first week is a two hour LE info session that my therapist presents, and then the weightlifting sessions are taught by her colleague. I would be part of another of Katie's studies and complete a survey when it's done. There is a group starting in mid-April, and if my arm behaves and garments arrive in time, I will be able to enroll. If the timing is off, there will be two groups in May and again in June, so something will work. Trying to think about how this all fits in with traveling to FL in May.0 -
Flying is the final frontier for me ... I am scared to death to fly with the LE.
Carol57 - Your experience gives me hope. I flew a lot prior to bc ... haven't flown since ... and that's been 2.5 years.
I haven't been a good girl with my LE care today other than I did make it to the gym with my compression garments, did light weights and fortunately ... the group work-out room was dark ... so I did my weights in there ... and I bounced on the ball for 50 bounces every time after doing a set of bicep curls or a tricep kick-backs and I can tell a huge difference ... I'm usually swollen on nights when I do some lifting ... but then it goes away the next day ... but tonight I'm much less swollen than normal ... that ball thing is AWESOME! I'm going to tell some of the people at the gym what I'm doing and why so if someone says, "That girl is nuts what is she doing?" They can at least say we know ... just leave her alone. LOL!
Whatever it takes ... I'd stand on my head ... do anything to keep the swelling at bay ... 0 -
Tina, I wear very comfortable clothing for travel, such as jeans made of very lightweight fabric with some spandex woven in, but not sweats. I walk long and speedy, but in the airport keep it just under what would cause me to break into a real sweat. Airports are usually quite cool and I have never been one to sweat a lot even if my heartrate is quite high, unless of course the temp is warm or it is quite humid. I do wear a very supportive walking shoe. So all said, I am able to walk for some pretty good fitness effect without looking like I should be in the gym! Once at my destination I have real workout clothing for my Leslie Sansone DVD, walking, treadmill, whatever.
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Okay, I just have to pop in here and catch up a bit.
It's going to be miserably hot here before long
, so I'm trying to brace myself for that and plan out my hot-wearther exercise and self-care accomodations. Lots to think about, review, and get ready for. Like a new swim suit, for instance -- Becky, I'm with you on finding "retail therapy" less than therapeutic!
I now have a pedometer -- yes! I've spent a few days testing it out, checking it for accuracy, and trying to get a feel for how many steps I generally walk a day so I can build up to the suggested 10,000. I've been averaging about 7,000, so I'll see if I can come up with some strategies for increasing it.
Like some of you gals here, my budget is limited. At $5 my pedometer is not a precision instrument, but it's accurate enough to get me in the ball park range, and I'm good with that. It doesn't have any sort of safety attachment to keep from losing it so I improved with a piece of yarn and a carabiner. I don't have room or cash, either one, for in-home exercise equipment, but I've found bouncing on my toes to upbeat music to be as helpful as a mini-tramp or a biggish exercise ball -- fun is what you make it, so I get my daughter involved with me and she helps make it lively.
Don't have an elliptical or a treadmill, can't do the gym membership, much less a trainer -- but I jog or walk indoors or out and when I need specific help with exercise advice I email my LE therapist or stop by and see her (she's used to my 1,001 questions by now!
) Just wanted to note that, in case anyone was feeling LE butt-kicking was out of their price range. It's not! We can do this!Onward!
Binney0 -
Binney, you are smart and wise, as always. Two feet and a pair of decent shoes are enough equipment to get the body moving, and I know two fabulous women whose feet aren't up to the task, but they have found ways to move arms and torso while in a wheelchair, to music that gets them in an aerobic state for 45 minutes each day. My pedometer is not fancy, although it did come with a leash. I don't think any pedometer is 100% accurate, and really, if it tells you you walked a mile but you really did 0.8 or 1.2, does it really matter that much? The value of the thing to me is that it simply keeps me mindful about moving. Especially when I travel for work, when I am tired, crabby, and could easily just chuck the exercise, the pedometer says to me hey...you want to see a lot of steps tonight at bedtime, don't you?
Binney, if you're getting about 7000 steps without making yourself run circles around your house or go on a long walk or jog, I'd say you must be in constant motion! That's amazing!
I went for a speedy walk today after teaching my seminar, getting in about 9,600 steps in an hour. It was sunny and nice out so I really enjoyed the walk. MLD coming up soon.
Carol0 -
You all sound so amazing, you windsheilding, ball bouncing, hulk breathing, walking powerhouses. (look out Olympics here we come!) Did 5 floor stairclimbing and 45 min walk today and hope to do lebed opening.
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hugz, the image of a sports commentator explaining the finer points of Olympic ball bouncing and hulk breathing is simply irresistible! And we could pump fists in the air from the award podium in a collective show of LE power!
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Binney I am in the same boat. No budget for anything extra. I have not heard of wearing any of the garmets described here for my LE. It is so confusing sometimes. I wear these very flattening "surgical vests" which my LE therapist approves of. Tomorrow I get my new sleeves and gauntlets. As far as exercise, nobody has even mentioned it! I have no idea what this bouncing ball thing is, nor the CD that everyone laughs about! I have heard of Under Armor garmets, but know they are terribly expensive. I would think my LE therapist would steer me toward these camisoles and such if I needed them? I only have two more sessions with her then I am done. The only exercise I currently do is walking. I need to do far more I know, but have been depressed and lacking motivation. I am trying really hard to work through all of this.
I'll keep reading here and see if I can get inspired to do more. Binney.....thanks for all you do in your quest to educate us about LE. It is so appreciated!
I really look forward to getting to know everyone here!
Janis
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Janis, you are right that Under Armour shirts are expensive. I think that Binney has mentioned that she's had some success getting insurance to cover a shaper camisole that she finds very comfortable and does a great job of compressing where her LE issues are. Maybe she will fill us in when she stops by again.
Shaper camisoles and UA shirts are not official LE garments, but lots of us find that wearing them simply feels good! Your surgical may be exactly what you need, and I cannot comment on whether a cami or UA would be a good alternative strategy for you. Why not ask your LE therapist what she thinks about using a cami? TJ Maxx sells some, as does Target, so you might be able to find something to try that's not so expensive.
The ball bouncing is using one of those big exercise balls, sometimes called a stability ball or a Swiss ball--huge, and you can sit on it. Many LE patients find that bouncing on a mini trampoline (gentle bouncing; not leaping off the tramp) helps the lymph flow; and some of the women here found out that sitting on one of the big balls and bouncing it up/down for a few minutes has the same effect.
The CD is The Lebed Method Focus on Healing through Therapeutic Exercise and you can see a description here: http://www.gohealthysteps.com/store/?productID=3
Many parts of this DVD are available online as youtube videos. I don't have those links, but perhaps someone will be able to post them for you.
And keep on walking! I travel a lot for work, and when I'm away like that, walking is what is most available to me, and it's a great way to get the heart and spirit pumping. And it's great because you can work up gradually to speedy walks, no trying to keep up with a class or a DVD, and you can do it pretty much anywhere (at least when the weather cooperates).
Oh, and Tina got some of us started climbing stairs. A little goes a long way!
Looking forward to reading your posts about some great walking!
Carol
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Carol. Sheesh your funny! Yes, we do need the LE Olympics. Wouldn't it be a hoot! Of course we would all get Underarmour teeshirts given to us by UA company sponsering us. (yeah) We could use bandages strung across for the finish line. I'm sure you have enough floating around to donate. Can you just picture Binney in all her heavy LE gear passing us and heaving forward through the bandage finish line!
Janis. You will like comming to this thread. It will brighten up your day. Walking is great,it will lift your spirits. I know it is hard to get going somedays but we are all here for you. During your walk and any time during the day raise your LE arm above your head and slowly pump your fists. I do it about 30 pumps a few times a day.This helps drive the lymph fluid out.
Dawne- I am so proud of you showing off your ball bouncing skills. You really are bouncing LEs butt real good.
Tina- You are voted the "Step killer" I know you are pretending that each step is LEs head and that is why you can do so many!
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Janis, the StepUp-SpeakOut page about truncal LE has links at the bottom of the page to lots of compression options (including the kind of vest you mention). You might want to look those over so you have an idea what kinds of things you can bring up with your therapist:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htmSometimes therapists tend to stick with one or two options they know about and don't have experience with everything that's out there, so doing your own research is important.
I use a WearEase Slimmer. It's a compression cami, which insurance covers because it's made specifically for LE, so it's like their coverage for sleeves and gloves. You might also want to consider a night vest by Solaris or JoviPak.
I hear you on the depression and lack of motivation. Been there!
Do what you can, and know we're here to cheer you on!Gentle hugs,
Binney0 -
I thought of something today: when my kids were babies, we used something called a Johnny Jump-Up to keep them happy--a contraption hung inside a doorway, and it had recoiling, spring-like tethers so the baby could bounce up and down in it. (Probably not considered safe these days!) Does anyone else know what I'm talking about? Because the ball-bouncing discussion makes me think it's sort of like having a big-girl janie jump-up!
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Carol, my older daughter adored the johny jump up.
Binney, as usual, makes an excellent point about time and money as obstacles to getting in shape.
I used to work for a medicaid HMO and had an obesity project, and we were stymied as the neighborhoods weren't safe for walking and there were no nearby YMCA's.
The bouncing balls are inexpensive: they're balance balls, and I see them at TJ Maxx all the time.
For me, the biggest obstacle is work. I come home wiped, and get up early--but I do find that riding the bike helps me burn off the frustrations of the day.
Carol, you are a dynamo, keeping up with exercise while traveling, and I can barely do it at home.
This thread does make me feel accountable.
I have to see my onc this morning before I teach, who I have never thought is the sharpest tool in the shed today: and my DH said, "why do you go???" Hmm, because I was treated for breast cancer. I contemplate making a shift, but until she has to make a big decision for me, I'll take the path of least resistance. Hate those visits.
Kira
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Thank you all for you replies, encouragement and helpful suggestions! I apprecaite all the time each of you took to reply. Many thanks!
Binney i will ask my LE therapist as I see her again tomorrow. Today I go to the fitter and pick up my LE sleeves and gauntlets. I will find out if I have qualified for a program that provides custom bras for low income LE patients. I will know more today.
I am going to be doing a lot of reading later. Thanks again to everyone!
Janis
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I love this thread and I thank you all for keeping it going ~ and as a result, keeping me going. I'm only about a week into slow and steady exercise, but I hold all of you responsible for getting me moving. I think knowing that I will come here and "report in" keeps me doing something, anything. Some days its the stairs in my home (thanks Tina) or the ball (which I dug out from years ago) or just fist pumping and Hulk breathing......the point is, I am moving and getting my heart rate up and its making me actually feel better! Binney, you make an excellent point about it not needing to be in a fancy gym or need to cost much. We just have to get the heart rate up and the swelling down!
Sign me up for the Olympics! Oh, the visual! Screw the Pink ribbons and such.....we'll have the LE gear and wraps and don't forget, Hugz, the under armour will all be inside out! what a fashion statement and trend we would start!!
I love you all! You've made me smile today. Oh, and I have been a good windshield last few days. 2 miles of vigorous walking last 2 days, Norton tapes, ball bouncing and MLD. I really think the deep abdominal Hulk style kegel breaths are doing the most work - along with the walking and step climbing. Now, if only I could walk as many steps as our dear Carol - you go girl!!
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I did go to the onc's and my weight is the highest it's ever been, but with the exercising, my clothes fit better.
She was sympathetic and felt that the level of exercise I'm doing is great (!)--thank you guys, because it wasn't before....And not to stress over the scale. Just keep up the exercise.
Overall, a much better visit than I anticipated.
Kira
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Kira, Terrific on clothes fitting better, even if weight is up! I have not been able to budge my weight s single pound in the past month, even though I am eating like a saint. But I too see and feel a big improvement in how my clothes fit, so I am not really discouraged by the scale.
I do manage to keep moving while traveling for work, but in many ways that is easier than when I am home. At home, there are many more problems to solve, chores to complete, and especially fun distractions. In a strange place, on foot with no car, there is not much beckoning to me in a hotel room, and in an airport there is really nothing interesting to do. So I walk! I savor reading on the plane and for an hour or so before bed, but otherwise, walking feels like the perfect way to pass idle time. In winter I use hotel treadmills and that's boring, but I need to follow up on Becky's suggestion to listen to books. Anyway Kira, my travel fitness requires much less dedication than everyone else who is home and has lots of good reasons to do other things after work or after home duties.
Carol (writing this while eating a bag of raw veggies during a seminar lunch break. Participants just told me about a river walk I can do after 5, so looking forward to that!)0 -
Carol, I've got to get a pedometer, as I spend far too much time behind the computer. I want to put some buzzer on my computer chair to get me up!
This weight gain is very discouraging. I do eat well, and I am moving, and in the past, that would have been enough. The onc blamed tamoxifen and the perimenopause.
But, thanks to you guys, I have motivation to keep moving.
What happened to the days when I could skip lunch and lose 5 pounds?
Kira
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The skip lunch-lose 5 ship sailed away years ago!
Kira, at home I work mostly standing up, and it does keep me moving. It started when I got trifocals and realized that I had to tilt my head unnaturally and painfully upward to see my monitor. Glasses cost a fortune, so I swapped my desk for a pub-height table we had and a high, rolling drafting chair I bought online pretty cheaply. I can now see the monitor with an appropriate head tilt, but the bonus is that backaches stopped and I really do pace and move more, because standing up is just as comfortable as working from the chair, something I did not expect.0 -
Hi All--Welcome Janis!
Did not report in yesterday as I have company and we were in Dollywood all day. Did my MLDs and Lebed but no cardio---but we walked all over the park all day in heat. I am waterlogged! Did fairly well on diet. Got home at 8:30 to hear carbon monoxide detector going off. Called fire dept and really high levels of CO. Took several hrs to clear out and had to also wait for gas company to come. Did MLD while waiting.
Hey I personally think walking is the best exercise there is--and free! The hardest part is for those who do not have a good place to walk. Plus just a pedometer cheapo that measures steps. I cannot walk fast without sweating. I sweat a lot--especially my head which makes my hair wet. So I have to shower after cardio. Wish I did not sweat so much Carol.
Saw my therapist for measuring yesterday. My right arm (dominant and affected) was smaller than my left in all places except right above the elbow in the back where the fibrosis is! That part also had gone down considerably! The jovipak has also been softening the fibrosis. The great part is that my therapist had an off the shelf juzo for me to try on and it worked! She is moving me from Class II Jobst to Class II juzo which she says is somewhat lighter. Then the next sleeve move to Class I if I remain this low in volume. Plus she added some more moves to my weight lifting with only one lb wts. I think she was more jubilant than I was. My right arm has never been smaller than left even before LE. Maybe I should put my left arm in a garment and MLD it! I still have a little swelling in the trunk on the side. I have to wear a swell spot at night there.
Well off to Dixie Stampede. So much fun with a 3 yr old. I did do 30 min on elliptical this am. Am going out to dam tomorrow hopefully.
Oh--Olympics. We have a Buddy's Race for Cancer that supports a cancer center every November. Our support group is going to have an LE team to walk the 5K. Tshirts and everything. Maybe we can kick some LE butt. There will even be some sleeves showing!
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Whooo Hooo! On my lunch hour, I got a cookies n'cream milkshake from Chick-fil-a w/whipped cream and a cherry and whirled through TJ Maxx looking for bargains.
Oh, wait. Wrong thread. Sorry.
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I have had trouble with my Verizon connection lately, composed a message yesterday and couldn't post. I lost another one earlier today. Let's see what happens now.
Welcome, justmejanis. The gals here are terrific and keep everyone going. Yes, I think basic and no frills is actually a good way to start. It lets you get into the groove at your own pace. There's no pressure, and you can stay aware of how your body is responding to movements and gently urge yourself to do more when it feels right. I believe when it is easy at first, it is actually more motivating, seems less like drudgery. Anything to make it fun or a great experience helps. That's why I love the ball and walking outside. The ball makes me feel like a kid, and blooming flowers, trees, and listening to birds sing make me feel terrific. Music has always been a big deal to me, and having my own private dance party in my living room is more my idea of a good workout vs the Lebed dance routine. Whatever works for You is the most important.
Okay, it looks like I am going to be able to post, so I should report in. Yesterday I did trunk MLD in the morning and full routine at bed, wore compression all day. Took tank off for sleeping, as I was feeling claustrophobic big time. 500 steps, bouncing, Hulk breathing and node clearing a few times during day. Staying hydrated. Hand is feeling pretty good, and arm seems to be doing much better. I really think the exercise is helping. Torso is actually starting to feel better, I think it's a little trimmer, as my clothes are feeling more comfy in the waist. This morning I did trunk MLD and I am wearing compression. Lovely outside, and I am definitely going out to take a walk.
KIRA - when I used to start working out after a hiatus, I would actually gain weight because I was building muscle. Only after a couple weeks did my clothes fit better. So, you are doing terrific! Don't let the scale get inside your head. I actually weighted almost 10 pounds more when I was at my fittest, but I wore the same size. No one ever believed me when I said what I weighed. Muscle weighs more than fat.
By the way, tomorrow will be FOUR WEEKS since I posted this topic and began to exercise! The time has just flown by, and I can hardly believe how much I have stayed consistent with self care, continued to exercise, and gently push myself to do more and more. I couldn't have done it without you guys! Thank you so much for the motivation and keeping me accountable. I can't say that everything is second nature to me yet, but I've noticed I'm spending more time doing MLD than griping about having to do it. And my compliance with compression has changed dramatically.0 -
Suzy! You are so darn funny!!! Thank you for that belly laugh - you just helped move more lymph fluid! That is much more like my personal idea of retail therapy!
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Carol, after you mentioned the Johnny Jump-Up, I remembered loving my Hoppity Hop as a kid. Thought I would check YouTube for a video, and, oh, my word! We are behind the curve! Perhaps it is possible to do the Hulk while bouncing. We just need to modify the green jumpsuits!
I wonder if bouncing like this is just as beneficial as using a regular exercise ball? I bet you can tilt the handles away from you if you want to do stationary bouncing with your arms straight above your head.
I don't know how to make this a direct link with my iPad, so could someone fix this for me, please!
http://www.youtube.com/watch?v=Lb0bzs6axZw&feature=youtube_gdata_player0 -
You all are doing great!
Today ... I am the bug ... but the day isn't over so maybe by tonight I'll have squashed the bug.
I know the reason ... Mondays are 4 hours in the car driving days ... so that never helps ... especially after a stressful weekend.
Yesterday I did my stretches and MLD before bed but I'm pretty swollen today. Plan of action is to do some ball bounces, Lebed opening, some cardio with compression ... there are storms coming too which always make me swell ... bug or windshield? I'll check back in tonight and let you all know.
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