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Topic: Kicking LE's butt!! Exercise & Self Care Log

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Mar 7, 2012 06:32PM

Tina337 wrote:

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

I still have my arm and hand wrapped, and I am also wearing my compression tank with round swell spots on each side in the underarm area 24/7 as per my LE therapist's instruction. This afternoon I did the entire Lebed DVD. Woohoo! It's a start. Yes, that DVD is still creepy! I'll have you know I continued with the exercises even when my husband unexpectedly walked into the room. I started making fun of the DVD, which was kind of fun, so I continued for the rest of the program taunting and making fun of the weird instructions, cheers, and "dancing!", etc. It actually made me feel more powerful and in control, and I liked that!
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 23, 2012 05:49PM Tina337 wrote:

Binney, I'm sorry you are having new swelling. Being careful is no fun, but that's part of good self care. I had new swelling in that area when my arm was flaring the other week, and it's still is not completely gone. Very uncomfortable. I observed that when I wore one of my more flattering garments (naturally) and did more walking than usual, that the armhole kind of rubbed and irritated the area. I'm back to wearing my tried-and-true garment except for shorter periods where I am less active. Since you've been jogging more lately, which often involves some natural movement in that area even if you're keeping your arms from swinging broadly, have you noticed a certain garment might be rubbing more than others?

The fact that I am concave in the breast area from the expanders/implants and have some extra skin and slightly loose muscle above the incision works against the natural flow of the lymphatic pathway. I discovered the other day while doing MLD that I had an area of skin in the concave part that was a tad adhered and did some gentle myofascial release and it let go. The area drained within 10 min. I was shocked and asked my therapist about it. She said that was great. I wondered if chest adhesions like this are something I will always have to watch for, or whether this was still part of my healing from last year's deconstruction surgery. She told me poor posture can cause new adhesions and that I'd always need to watch for that. Ugh. Just another reason to strengthen our back muscles.

Hang in there! ((((Binney))))

"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 23, 2012 07:51PM hugz4u wrote:

Girls, It's the weekend, put down the bon bons and pick up sports gear. I see you making strides despite, flares/ nervous test results and garment woes.

Carol Thanks for UA advice. I will experiment

Binney; I do 45-1 hour walk 3 times a week. More if sunny and time is available. I think 1 hour is 10,000 steps, the recomended amount daily.

Girls. How high can you make those handle bars go on the bike.  I really would like the banana seat bike I had when I was a kid. It is so LE compatible  

Kira, I can see from here your dog really, really, really wants to go for a walk. Guilty yet? 

Tina. Your buns are firmer every hilly road and step you take.I also can see from them from here. Don't worry I am not a creeper. ha ha.  

take care all 

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Mar 23, 2012 10:04PM Tina337 wrote:

Okay, I didn't get everything done today I wanted to do, but I did the important stuff. I walked 75 min and did some steeper hills. I was huffing and puffing, and my forehead was really drenched. Haven't worked up a sweat like that in a while. Came home and did entire Lebed DVD. I did not do the "paper towel" move with my hands facing downward, as last time I thought it made my fingers swell a little. Haven't figured it out yet, but I am overdoing some kind of arm movement, as my forearm seemed to swell a little after. Need to take it easy and not get too gungho. After all, Lebed is supposed to help reduce swelling, not cause it! Maybe it was general overload from my additional activity today. Water, water . . Off to bed and going to do thorough MLD.

Hugz, interesting you mention my buns becoming more toned, as I was going to buy a roll of quarters and place them next to my gym clothes! Just a subtle reminder that will engage my vanity! Guess I should put my copy of the PAL protocol with it to keep myself in check.
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 23, 2012 11:24PM Binney4 wrote:

Tina, jogging or no, I've been wearing night vests 24/7 because with this cracked rib I can't wear my usual WearEase cami. And yes, they sure do affect the axilla differently. So I'm pretty sure that's the source of my problem, but I'm not sure what I can do about it, since I for sure can't go without chest compression.Frown Today I've been switching off between the JoviPak and a Solaris to see if that will at least help. Because I'm afraid to aggravate it further I didn't jog at all today (though I did go for a long walk--I too have a dog with pleading eyes!Wink). The Flexi seems to be helping most for now, oddly enough. I need to get back into a cami and out of these infernal night vests!

Not a happy camper!Tongue out
Binney

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Mar 24, 2012 12:43AM carol57 wrote:

Tina, what a great day you had, and huffing/puffing/drenched is testimony to working hard.  (and maybe the heat!)

Binney, how frustrating! I hate to thing you have to do garment roulette to find a way to be comfortable.  And tell us more about your pooch!

Today I reported in to my client at 7:30 am and was indoors for my seminar all day, but I did manage to walk 3.8 miles in one hour before meeting a client for dinner (boring dinner!). Walking in San Francisco brings inevitable ups and downs, so I got my heart to work pretty hard for some of that walk.  Started and will end my day with MLD.  Did not drink as much water as I should have.  I leave for the airport at 5 am tomorrow and will try to do some good airport walking between flights.  

On pedometers, mine is an Ozeri 4xrazor that I bought through Amazon. It is easy to use, and it works whether it's clipped to my waist or in a purse or pocket.  One feature that I think is mandatory is a backup leash/clip.  The main clip is strong but moving sometimes causes it to detach from my waistband, but fortunately there is a short leash with its own clip that offers a second chance at not losing it.  I don't know if this is standard, but it's worth making sure that whatever pedometer you get has this second anti-loss feature.

Thanks to all of you for your reports that continue to make me feel accountable!

Carol 

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Mar 24, 2012 06:27AM BeckySharp wrote:

Hi all--Been busy.  Have done my two MLDs and Lebeds everyday but not as much cardio--just 30 min each Th and Fr on treadmill.  No weights since Wed.  Spent Thurs with my cousin who had a double lung transplant in Nov.  She is home now.  We did do a short walk around her neighborhood.  Yesterday I had lunch with 15 high school friends---a looong 5 hour lunch.  We were at a friend's house.  I leave in a few minutes to go back to TN so will do weights and some cardio when I get home.

My pedometer is an Omron.  I got it from Walmart's online site.  Amazon also has it.  Mine is a older version and the walking style one.  Several say you can put it in a pocket and it will measure as mine does.  It has been quite accurate for me.  It records up to seven days of steps, miles, etc.  It clears at midnight for the next day's steps. 

I have always read that we need to get at least 10,000 steps a day in for good health.  That is about five miles.  It can be steps you do normally at work, housecleaning, etc.  So I always try to get 10,000 on mine.  Some evenings I am going up and down the steps to my house or walking around to get those last few in. 

Hope I can get to the dam tomorrow afternoon.  Too little exercise and too much good food! 

Good weekend everyone!!

Becky Dx 1/20/2011, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Mar 24, 2012 12:24PM Tina337 wrote:

Binney, I don't know how you do it. You are amazing, because I can't imagine trying to jog with a broken rib and wearing a vest. I hope that rib heals soon so you can get back into your WearEase during the day.

Thank you for the pedometer suggestions. I will have a look later today. Carol, what I wouldn't give to be walking the streets of San Fran! Becky, I hope you thoroughly enjoyed visiting with your cousin and catching up with old friends.

Does anyone find that trying on clothes, especially tops, can aggravate truncal LE? Sometimes it's just the rubbing of fabric across the axilla area. I think it's also the additional exertion of the arms to reach and pull things on and off over head. The motions aren't very natural. Anyway, I dread trying on the UA tops since you can't step into them.
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 24, 2012 12:36PM carol57 wrote:

Tina, you are spot on about the dread of trying on UA. It makes me feel like a contortionist.

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Mar 24, 2012 05:14PM carol57 wrote:

I am home, just in time to head to dinner and a show with friends. And I must report that today's LE care is well, lacking. I was up at 4 am to catch a very early flight, no real time to walk at either of my airports, and for sure no walking or cardio tonight!  Pedometer gives me credit for 2.2 miles, which are just to-and-fro steps as I navigated in and out of airports today.  I skipped MLD this morning -- too worried about missing a shuttle--but I did drink buckets of water, pumped my arm and did the kegel breaths.  (And saw two other women in sleeves in the departure gate. So got some silent solidarity today, too!)  Tomorrow will be a better day.

Carol

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Mar 24, 2012 06:06PM Tina337 wrote:

Couldn't bring myself to have the UA adventure today since things are just under control. It's rainy, so no outdoor walking. MLD in morning, tank, sleeve and glove all day. 400 steps on stairway - my legs were a little wobbly from yesterday's hilly walk. Did a couple of torso/lower ab exercises that don't require use of my arms. Now I am throwing caution to the wind and having white pizza with spinach and onions for dinner. Water, water, and more water! Definitely will have to do thorough MLD at bedtime.

"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 24, 2012 07:19PM kira wrote:

Well, feeling like a slacker, I did am MLD, walked the dog on the 1.2 mile loop and then the exercise bike.

They have dumb shows on animal planet. Get a crate! Don't video tape your dog trashing the house again and again...

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 24, 2012 10:33PM Tina337 wrote:

Slacker? No way! A walk and time on the bike sounds good to me, Kira. So funny about the animal shows!

I just struggled to get my large orange foam insert into my tank and put my pjs on, only to realize I hadn't done MLD yet. Phooey. Nodes, deep breathing it is, as I am not fighting with this stupid insert again. It tires my right arm to hold tank away from my body, probably worse than those exercise bands!
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 24, 2012 11:11PM marcy4 wrote:

Hi Ladies,  I have not had an LE, but did have a bout of cellulitis a few months ago which was quite scary.  I have found a personal trainer who works with breast cancer survivors.  She guides me through weight training programs, cardio etc. that work with my limitations.  I always wear my sleeve and glove when exercising. So far I am feeling great.  My arm went from feeling very heavy to feeling "normal".  I am still very cautious when I work out, but feel that lifting weights...no more than 12 lb free weights, has made a big difference for me. Gloria

Dx 1/6/2010, IDC, 4cm, Stage IIB, Grade 3, 3/15 nodes, ER+/PR+, HER2+
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Mar 25, 2012 06:45AM BeckySharp wrote:

Came home to TN from IN Saturday.  It rained most of the way so no walking at rest stops.  I did pump at gas stations and lots of water.  I did am MLD before leaving.  When I got home I did weights, Lebeds, and pm MLD.  No cardio.  I was just too tired.  So hope to get to dam today if it does not rain.  I did go up and down my steps seven or eight times unpacking car, putting out trash, etc.

Besides deep breathing is there any way to pump when you are driving?  Or any other safe exercise? 

Becky Dx 1/20/2011, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Mar 25, 2012 10:00AM kira wrote:

Gloria--12 lb weights! That's pretty intense, as most women with LE start--or re-start at 1 lb. For those women who can tolerate weight lifiting, it does help reduce flares and keep things under control. Good for you!

I want to be able to kayak this summer, so I do need to start to work on my arms. I have a copy of the PAL protocol--for a few weeks it was up on the NLN site in error--but can't wrap my mind around the pictures. There is a "Strength and Courage" DVD that Katie Schmitz likes and I have some issues with, but it has some simple weight lifting segments.

Becky: some people do the "Queen's Wave" while driving, rotate your wrist. But still it's hard not to have both hands on the wheel....

Kira

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 25, 2012 10:26AM Tina337 wrote:

I think Binney posted a "cat scratch" movement somewhere. I read that but wasn't sure of exact movement, but I just move my hand/arm like my cat and it works really well. Did that on the way to DC in car. My husband kept saying Meow . . So just think of how a cat would flex their leg and paw/claws, or Cat Woman.

"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 25, 2012 10:35AM carol57 wrote:

Kira, I'm with Tina-- 1.2 miles with the dog followed by exercise bike is not slacking, no way no how. 

But here's some tough talk for you: if you find the PAL exercise photos unclear, take the document to a certified trainer and have him/her work with you for a few sessions. Those photos will be crystal clear to an exercise pro.  I'm working out in a gym, so we use a combination of gym equipment and dumbbells to implement the PAL Protocol, but it's entirely possible to do it just with a set of dumbbells at home. 

In the gym with dumbbells and machines, my trainer is super creative about changing up the exercises and exercise combinations so it's never boring.  But...I live in a small rural town where people don't charge so much for their time, at least not this trainer, so the cost is really minimal--not like what I'm sure you find in bigger cities.  So I appreciate that using a trainer long-term is not realistic at $50 /  hour for trainer time.

Long story short, it works best when you can have a trainer watch your form each time you pick up the dumbbells, but I think if you are focused on what the trainer tells you and pay careful attention to stance, arm/leg/hand positions, etc., after a few sessions you can use the weights at home and be just fine.  Then perhaps do a tune-up session once per month, to check form as you've added some heavier weights to your program.

Somehow, the PAL exercises and guidelines need to be more accessible to the LE masses. In the NLN newsletter a while back that focused on exercise, Katie Schmitz wrote about the challenge of getting it out there safely.  She said they're working on a four-week in-gym program to get women ready to continue a lifting program at home.  The challenge is still to train enough trainers to make even that accessible to enough women.  I wish they would consider a DVD that demonstrates the in-home exercises, and a second DVD meant for personal trainers so they can train lots and lots of trainers. Or something!

Carol

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Mar 25, 2012 10:37AM carol57 wrote:

I do one-handed neck node clearance, one side at a time every so often as I drive. I also do the belly breathing, of course.

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Mar 25, 2012 11:43AM Tina337 wrote:

Carol, my trainer gave me the regular PAL protocol and a copy of the PAL home protocol. The home study had just been completed when I had trainer come to my home and run me through routine and set things up so they were right for me. I bought the PowerBlocs so I could go up in 1 lb increments, and they definitely are worth it. She modified a couple of moves for me. For example, I didn't like how it felt on my hand/arm to lean down on bench to do tricep or back/lat exercises. She showed me how to position hand on thigh and get myself in similar position so that it eliminated the weight bearing on my hand/arm/trunk. I agree it's best to have a trainer show you proper form and follow you for a couple of sessions.

When I saw my LE doc at Univ. of Penn last Sept before she left her position at LE dept, she told me they were just starting to offer their patients access to PAL trainer for six sessions as a way to get properly started with PAL protocol. I think she said patients got a set of PowerBlocs as part of the program. Done in small groups of 5-6, billed to your insurance as PT/LE sessions. Since I already had the weights and had hooked up with PAL trainer for home workouts, it really wasn't worth it for me to use my insurance. I will see where I am toward the end of the year as far as needing MLD/treatment, and maybe use then if I am feeling good. Not that I won't do weight training before then, but it would be nice to have the benefit of trainer.
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 25, 2012 12:18PM carol57 wrote:

Tina, It's wonderful to hear that there's a program in place that allows the LE/PTs to bill for sessions focusing on safe strength training.  I would love to know how they are coding this.  I'm working with my own LE therapist, who is also a PT, and with our commuity hospital to expand the local LE resources and services.  Getting paid to supervise/train in weight lifting is not something they believe is reimbursible with insurance. I think I'll send an email to Dr. Schmitz to see if she can help me navigate to that information.  I'm very glad you mentioned this!

Carol

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Mar 25, 2012 12:23PM kira wrote:

Carol, one of the women who posts--I'm sorry, I can't remember who it is--has participated in the classes.

Knowledge is the antidote to fear, Ralph Waldo Emerson Dx 5/10/2008, IDC, 1cm, Stage IB, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Mar 25, 2012 12:30PM Tina337 wrote:

She should be able to help, Carol, or steer you to someone there at Penn who can. The LE doc had said that this was part of the effort to get the PAL protocol safely out there. My doc had been part of what is their physical/cancer rehab program, and I saw her at the Rowan Breast Center. At my last appt with her, she had one of their LE therapists there along for my exam, and that was when she told me about program. So someone there knows how to bill for this.

"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 25, 2012 02:15PM carol57 wrote:

Kira, you are correct, and I remember now that the PAL participant in Philly is Kay1963.  I'll PM her and ask if she knows or can find out about the insurance coding.

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Mar 25, 2012 04:09PM carol57 wrote:

Update:  Kay responded and has put me in touch with the coordinator of the UPenn program. I sent him an email and with luck he will help me understand how reimbursement is coded so we can all approach our therapists about some help with appropriate weight training and other exercise therapy.

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Mar 25, 2012 04:30PM BeckySharp wrote:

I made up for no cardio yesterday by logging in 10 miles or 21,000 steps at the dam today.  Four times up the steps.  I was in the zone.  I guess a day of rest did me some good.  It did take me 2 hrs and 40 minutes with a bathroom break and three water breaks.  Now I feel on top of the world.  A good friend died of cancer yesterday so I was able to walk my sadness off.  Did MLD and Lebed this am before church.  Am ready to jump in the shower and then last MLD.  I should sleep well tonight.  I gained two lbs on the trip and hope to get it off this week. 

Becky Dx 1/20/2011, DCIS, 2cm, Stage 0, Grade 3, 0/2 nodes, ER+/PR+, HER2-
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Mar 25, 2012 05:17PM - edited Mar 25, 2012 05:17PM by Tina337

Excellent news, Carol!! 

Becky, I'm so sorry about your friend. You are crazy wonderful with your walking!! Funny how a day off can help recharge your batteries. 

"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 25, 2012 05:39PM carol57 wrote:

Aww, Becky, it's so sad about your friend.  Walking really is balm for the soul, but still....

Today I took the day off.  Yesterday I seriously had no exercise opportunity, as every second was accounted for.  Today I slept long and well, but I still woke up pooped, and I decided that a day of true rest would do me good.  It's good to read that Becky and Tina vote for a day off to recharge, so I don't feel so guilty.  Tomorrow I will make sure it is a very good exercise day.

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Mar 25, 2012 07:33PM Tina337 wrote:

Carol, when I used to work out religiously, I noticed that no breaks were sometimes counterproductive. Of, course, I'm talking about the more intense levels that you and Becky are doing. A nice walk each day is great - those 10,000 steps. But Nordy put it well in her post about knowing when to take a break if you listen to your body. I can remember that I would lift weights every other day, no matter what day of the week it was. Never missed. I would do cardio at least five days a week. Once in a while I would reach a plateau and wonder why I couldn't seem to push forward. A day off often produced a much more powerful workout, just like Becky's today.

I used to freak out when I went away on vacation and didn't have access to a gym, go to all sorts of lengths to find one. If I couldn't, then I would do more cardio. However, there were a few times when my husband and I took some road trips, and it was impossible to plan or even predict where we would be. I thought when I returned home I would be weaker, but, nope, it actually helped, which was probably a sign I pushed myself too much. So, I eventually didn't get freaked out when I took vacations and couldn't do my usual workouts. Finally realized it wasn't often that I got to see amazing cities, museums, parks, and nature, so why was I driving myself nuts about getting in a workout? It was partly fear that I would lose my motivation, especially if I was really in a good spot before I left. All I had to do when I got home was to start again and I was fine. I guess I should mention that I wasn't on a weight loss program, nor did I have body image/health issues. I was just a regular workout junky that loved the feeling (also the meditative quality) and it always kept me mentally and emotionally in a good space.

"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Mar 25, 2012 08:40PM carol57 wrote:

Tina, such spectacular wisdom!  (and of course, it's just what I want to hear!)

I'm where Becky is--not really a workout junkie; a more accurate description might be that I have a love/hate relationship with exercise.  I'm motivated to push hard to a large extent because I'm so afraid of falling out of the habit.  But your're right; the timeouts to do other wonderful activities are really nothing to fear.

Thanks for the great post!

Carol

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Mar 26, 2012 07:23AM 11BC wrote:

Tina337/All who are exercising w/ lymphedema (LE): I applaud you.

True confession: I "almost" let LE "kick my butt" while I was undergoing manual lymphatic drainage (mld) and had to wrap my arm 24/7. The therapy sessions were only supposed to last a few months, but when my arm/hand showed little to no improvement, they stretched into almost six months.

The heavy and cumbersome bandages weighed down my energy and mood, let alone my right/cancer/irradiated/lymphedema side arm. 

But Tina337 -- you're doing it. You're out there exercising. My challenge, at this time, is to get back to doing something regularly. Before cancer, I exercised, on average, 30 min to an hour every day and did some form of aerobic, strength and stretching exercise.

I can do it again. If you don't mind, I'll check in here, too.

My goal today is to: walk briskly for 15 minutes and stretch for 15 minutes. I also will try to find a physical therapist who deals w/ cording (axillary web syndrome) and make an appt w/ to see him/her.

Let's have a great week! 

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