Kicking LEs butt!! Exercise & Self Care Log
Comments
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Nordy--Oh no. I try to stay compliant to stay out of wraps. It is my LE nightmare. Hang in there.
Hugz- Yes I have lost 63 lbs now. 25-30 more to go. I joined Weight Watchers 7 yrs ago and lost 104 lbs over two yrs. Then over the next 4 yrs gained 80 back--mainly because I was not exercising well. The bc and LE hit. My therapist promised that my LE would get a lot better if I lost weight again. So I went online to loseit.com and track my exercise and calories. I have always eaten healthy--just too much. As for the exercise. I hate it! But I would rather be outside than on my machines if I can. The dam I go to has a lot of people on the walking tracks. Half in the woods, up the many steps, then across the dam. Three loops make 7 1/2 miles. It takes me 2 hrs--I can only go about 3.5 mph on the gravel and inclines--plus steps. Some of the same people come daily and we cheer each other on. Even a lady from here who was on Greatest Loser a few yrs back comes out. She has kept her weight off. If you join loseit the number of calories they say you can eat each day is a joke. If I ate that amount I would not be losing. Yes, the view is incredible.
Carol--I probably would not have walked yesterday except my friend wanted to go. She had not been going with me and really wanted to get back into it. I wanted to get her back out there too. We are going to go again today. The bread smells so wonderful. I love bread! I had been eating 100 calories dark chocolate a day in the pm. Have switched it to breakfast. It is wonderful. I thought like drinking alcohol you could not eat chocolate before noon.
I hope Tina is finally at least an upright bug if not the windshield!
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When Tina isn't posting here, we know it's because she's feeling really beaten up, so Tina, sending you lots of sinful, dark chocolate to help expedite getting you back to feeling positive.
Chris, working out with weights is great. With LE, it means being careful to respect some precautions as you build strength. I can't remember if we have posted on strength training precautions since you joined us here--forgive me if we have, and also I recall you have been lifting weights for a while, so you're not new at this. Just in case, however, have you read the PAL research and related articles? If not and you'd like to see the study and some clarifying commentary, here are links:
http://www.lymphnet.org/pdfDocs/PAL_NEJM.pdf
http://www.lymphnet.org/pdfDocs/Weight_LE_Misconception.pdf
Becky, funny thought about not eating chocolate before noon...I guess we're ok so long as we're not drinking chocolate martinis!
DH and I are off in a few minutes to take a stand-up paddling lesson. I figure I'll either love it or hate it. They tell me it's a full-body workout. I cannot wait to find out if that's true!
Carol
(edited to correct link)
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Thanks Carol-
Both of these seem to take me to the same doc. Is that what you intended?
And no, I would love to hear more about precautions! My PT has told me to move the pneumatic weights slowly (less resistance) and watch things. I have been doing Curves for about 5 years prior to surgery, and was back at it slowly when the LE began. I have passed the PAL site on to my PT who is going to see if she can get the protocol.
Also, does anyone have any good info about diet stuff? I would be interested in sites or info you found helpful.
Today I walked over 2 miles, did some light gardening, did the 11-min version of lebed on nwlymphedemacenter.org, had MLD from hubbie, and rewrapped after a shower this morning, and now I am going to make us a lovely dinner: homemade calzones, stir-fried asparagus, bean sprouts and garlic, and fruit salad. Hope you are all having a lovely Saturday.
Chris in NM
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Chris, sorry 'bout that! I have fixed the first link so it goes where it's supposed to go.
The challenge with the Curves machines is that it's not possible to measure the amount of weight you are pushing against, unlike using dumbbells or weight machines that use weight plates. That makes it a challeng to use a consistent amount of resistance with each lift, and to know for sure that you're adding in small increments. On the other hand, the Curves machines are built so that as you get stronger, you push harder and by definition, you get more resistance--sort of a built-in way to add weight just as you can handle it. Curves is the world's largest fitness-training operation, so literally millions of women --and therefore BC survivors--are using those machines. I asked one of the PAL researchers how the good practices of the PAL Protocol can be brought to all those BC survivors and well...there just isn't an answer. That doesn't mean the Curves machines are bad for us--they're not, because they get women working on strength training. It just means that the PAL work was not designed to work wtih or test the the special Curves equipment, so when you work with it, you need to be extra, extra mindful to add resistance in very small increments. The good news for you is that you were using it before your LE, so you are familiar and can probably gauge the amount of resistance you're adding. I worry more about someone who goes there, with LE or at risk, not realizing how vital it is to slowly add small resistance.
If you know anyone at the Curves where you work out, who is a BC survivor, you would do a great service to mention the PAL research and see if she is working with (or has an opportunity to do so) someone who can help her think through how to use the equipment in a way that's appropriate to her needs.
Homeade calzones! What time is dinner????
Carol
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Can you tell me if cording and LE are intertwined or independant of each other? Can you have one without the other? Does one preceed the other? Thanks.
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hugz4u.....thanks so much for asking about me. I am doing pretty well. I am going through a fairly stressful time and so I have been really distracted away from my LE. My bad, I know. I just now am catching up here and can't believe all the energy you gals have. Becky, you are amazing! I have been walking daily, yes. Usually just about a mile and a quarter, but better than nothing. I enjoy it especially since it is finally getting warmer here. I do dread the heat of summer but will walk early in the mornings. I am an early riser.
You ladies are an inspiration, you are all amazing! I have to try to focus and keep up. I do not want to lose touch with you.
I have a doctor appointment Thursday and will likely be facing some surgery. I hope it won't keep me down too long. I do really want to keep moving!
Hugs to all,
Janis
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Janis, Every step is worthwhile! Keep us posted on the Thursday results, and if you need to have surgery, we'll be there to gently encourage you to start moving when it's appropriate for you. What's so wonderful about walking is that you can tailor it to your needs and ability--speed and length of time you do it are infinitely variable. One step at a time is more than a tired saying. You'll be able to put one foot in front of the other soon enough, and to build from there.
Carol
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Carol- Thanks for those links, and for the clear warnings. I promise to read the docs, talk to my PT, and take special care. I so appreciate the advice!
FLWarrior- I'm new here myself, but i think the cording can come seperately from LE. I am not real sure about that, but that is what I've been told. Maybe one of our "experts" here can jump in an answer more definitively than that.
Chris in NM
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Tina, I just read your post on your marathon workaholic day. You did exactly what I would be doing and that is "too much". Isn't it hard to stop doing things you want to do so Le won't bite you.? So far I have been able to stop and rest and not have any horifying flares. Still I find it very disapointing to not be able to do my chores like I use to. It really is an education in itself. My sis stops me from getting carried away with chores when she is around. In fact she has been lifting for me for the last few years to prevent an le attack and now she has wound up in two carpal tunnel situations helping me. Poor dear. Tina you are my stepper inspiration. Haven't done any for about two weeks but I am going to try my 16 flights Monday. Are you able to joing me?
Janis.I am so happy to hear you are walking a whooping 1/1/4 mile that is really good. The morning s are a good time as we have more energy then and we get our exercise done and over. Good idea you have. You encourage me. Is the exercise lifting your spirits abit?
Becky. One word in capitals to describe all your great health efforts "WOWZERS! I will consider some of your ideas, thanks
Nordy. Oh man you must be bummed about your arm. Do you have relief yet? We need you to help us, You litttle power house biker chic.
Chris. 2 miles is a really nice bit of exercise you did. Sounds like you are on track with investigating the PAl.
Rest of girls. go for it.
Carol: Is SUPing your deal now? How did you do the sleeve/glove thing. Did you wear one.
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Hugz, I didn't wear a sleeve/glove for the SUP lesson, because I don't have a solution yet. Those 90 minutes were not terribly strenuous, although it showed me that once I'm on the board out on lake water, the paddling can indeed be rigorous. The good news is that if you do it correctly, you work your core more than your arms. Less good news is that it still works your arms! So, I continue to search for a compression solution I can wear while wet. Oh, and I also concluded that as a beginner, the chances of falling in are at least 100%! Even though I'm an experienced kayaker. But it is really fun, so I want to do it.
I found a source online for athletic compression sleeves, and they even have graduated compression like our sleeves, although they say 'not therapeutic compression strength'--but probably at least as much as an UA shirt, with the added advantage that it's graduated compression like our sleeves. Also found a source for athletic compression fingerless gloves. I have sent both companies emails asking for the specific amount of compression, and for their opinions on what happens when the items get wet, and I'll post whatever I learn when I hear back from them. For now, our lake water is too cold to tempt me to get on the board while I know I'll be falling in. (Lesson was inside, in a huge pool). So I have time to figure out the compression question.
Today is a yukky, rainy day, so my exercise will be indoors. We had nasty thunderstorms during the night, and I woke up thorugh that feeling mighty achey in my arm. Was it the paddling, the storm, or both? I did MLD during that awake period and it's a bit better this morning.
Carol
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Carol....thanks for the encouraging words! I plan on at least one walk today, and maybe two. That is the only exercise I get but I really do enjoy it and it is great for the dogs as well. They love it of course. Baby steps, but I always feel so good after I come home. If I have to have this surgery I have no idea how long I will be "down" but I rarely stay down for anything too long. I recover pretty quickly and I get restless pretty quickly.
Hugz.....I guess that answered your question about it making me feel better. It sure does! I am doing better. I had my doctor double my anti-depressant a couple weeks ago. I just was not feeling perky for too long and it bothered me. I have a VERY strong family history of depression including the suicides of both my uncle and brother. My oldest son suffers from crippling depression but refuses to take meds for it. I am not ashamed to admit I need them. They do help. I feel my inner energy returning as well.
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Hugz. - I think you are the best cheerleader!
Went skiing yesterday, rewrapped when I got home last night. Grrrr.
Carol - thinking about you while I am making lepinje bread today. Never made it before, so we will see...0 -
Today began with MLD, and the day's highlight was a one-hour+ hike in a somewhat hilly, forested park with the pooch and DH. It was 78 degrees and very humid (a week ago we had snow...) and the vegetation is getting quite brushy, so there was lots of hopping over brush, climbing over fallen trees, etc. But no bugs yet! We covered about 3.3 miles. The only downside to the whole fun affair is that a pricker bush reached out and grabbed my LE arm. I was wearing a long sleeve, but the darn thing got me right through the fabric (but didn't tear it, oddly). Found out I was bleeding on the drive home. So, neosporin and I'm watching it. This is the first time in my life I have to be wary of such things. Boo, hiss. I hate the thought of dressing in armour just to walk thorugh the woods.
Nordy, how deflating to have such a happy ski day and then to have to bookend it with wrapping. I feel for you!
Carol
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Carol--I think you are ahead of me on the cardio! A rugged hike.
I did the MLD exercises and weights yesterday but decided not to do cardio but take my Mom shopping after church instead. I feel as if I have been neglecting her lately. I still lost a half lb from yesterday. That usually does not happen if I don't do cardio. I have been eating my chocolate for breakfast last week and have lost 2 lbs with no other changes. Wonder if there is something to that?
Nordy--hope you will soon be out of wrapping.
Today I am out to the dam early to get in my 7 1/2 mi as it is supposed to storm this evening and it is going to be HOT today. I do not do well in heat. Soon I will have to move all of my cardio indoors. Luckily I live 1 mi from a Community Center. It has a walking track, pool, and weight machines.
I do want to let everyone know that this time last yr I was wrapped 24/7 and felt very much like a bug. I could do very little cardio. When I went to a sleeve my therapist said to do 15 min daily on my elliptical. I used to easily do an hour before bc. I could only do 5 minutes at a time! When I first went out to the dam I could only slowly do one loop (2 1/2 mi) and could not go up the steps. So hang in there those early in treatment. Build up slowly. Just do something!
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Becky, that great report of then-vs-now is just what the doctor ordered! You are so inspiring! It's amazing what a year of keep-working-at-it can do! One step at a time, a tiny bit faster each time.
And I just have to type that as I stand here at my keyboard, next to a window, I am watching a bald eagle fishing. Watching nature is so calming. LE...what LE?
Carol
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Becky and Carol...can you come stay with me for a few weeks? You inspire me so!! Becky that is a wonderful, wonderful milestone. You have come so far. Congratulations! 0
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I'm such a bug today! Exercise and LE care were normal--one hour weight/flexibility workout and 40 minutes on a treadmill, half of that at a steep incline. And I have one MLD in, with another to go tonight. But I'm the bug because I forgot to detach my beloved pedometer from yesterday's hiking clothing and it went through the wash! Yeesh. Can I somehow blame that memory lapse on my LE?
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Well you are all doing so good. I will report that I just did 45 walk before the rain hit.. Weather is a good motivator. Got to get that exercise in before it is too hot, too cold, too wet, too freezing, too snowy, too muggy, and lastly too whatever!
Tina, I am going to do my stairs at work today. I thought about you when I was walking earlier. I miss you stairclimbing LE;s butt off. Are you Ok with your LE?
Becky, I need you to eat my calories today so I can lose weight like you!
Carol, Washing your pedometer won't count steps faster you know, It just gets it cleaner. (sorry I just couldn't help the bit of sarcasim) You know you may as well throw that wrecked pedometer to the bald eagle,they are known to like shiney objects.
Janis, I am glad the meds and walks help your depression. In case you forget it goes like this:Left foot forward, right foot forward, left forward ward, right foot forward. You know the drill!
Nordy, You are so brave to do those activity's.
I am chicken that I will make my LE worse.
Binney, Kira and newcomers. We need you here to inspire us.
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Raising my hand up to say hello, waving a black and white checkered flag for Team Windshield! I have been popping in periodically to read a little, but no energy or enthusiasm to post. Finally in the neutral zone, I think. Adjusting to new requirements that are hopefully temporary. Maybe the swelling in my arm has affected my cognitive abilities, but it sure seems like a huge balancing act when you start incorporating daily wrapping, a custom sleeve and glove that require constant washing, ordering supplies and deciding where to stash, getting used to wearing new garments and figuring out best time of day to bathe, wrap and wash bandages. Went out to buy delicates bags, plastic gloves to protect good glove, stupid tennis balls for drying with vest, etc, etc.
Anyway, while my arm is not 100%, it is feeling better. The past few days I have focused on self care and the logistics surrounding developing a new routine and being compliant. I received my new pedometer in the mail but haven't tested yet. I have backed off the steps for now, as I was feeling too wiped. Still doing my best each day, but right now it is all about self care. New routine for now is tank, sleeve and glove during day; Solaris vest and arm wrapped at night. PAL group sessions postponed for a month.
Becky, I really appreciate your comparison between where you were last year and where you are now. When my arm was flaring last week, I had such trouble doing the steps I had been bounding up and down just a few days before. I realized I needed to give my body a rest.
Oops! Almost forgot to mention that Solaris vest, and custom sleeve and glove fit perfectly. My therapist was a little shocked, I think! Anyway, at least all is well with that part of things so I was able to hit the ground running. Custom sleeve and glove are SO much more comfy than off-shelf ones. Ahhhhh!0 -
Alright.
Does being extremely ticked off count as exercise?
But, now I have two job interviews this week, and I'm feeling like it's too soon....
So, I walked my dog, and then DH came home and he's a serious bike rider, and he got me to ride one of the hybrids with him, just for a loop of a bit over a mile, and funny how I can ride that exercise bike for 6+miles, and yet this worked different muscles.
And, I did MLD this morning.
And, I cleaned up some stuff in the house that I was never getting to.
Carol, back in the days of beepers, I used to drop them in the toilet regularly, and I have washed my cell phone. It happens.
FLWarrior: I pm'ed you about cording.
Kira---trying to figure out what comes next.
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Kira, I say if it makes your heart beat faster, it counts!
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Back to the question of sleeves while paddling. After Saturday's stand-up paddling lesson, I know two things for certain: I need to wear a sleeve, and I will fall in the water.
So, I need a sleeve that can get wet, will dry pretty fast (assuming I'm on the board more than in the water, at least eventually), and won't tighten up too much as it dries on my arm. Here's one solution: http://www.zensah.com/womens-arm-sleeve.html. I wrote to Zensah, the manufacturer to ask about the amount of compression and how the fabric behaves when wet. The company replied, saying that:
"Our sleeves are moisture wicking, meaning they do not retain moisture like other brands. Some even wear the sleeves while swimming! We do not put an exact mmHg level on our sleeves, as the only true way to get an accurate mmHg level is by having a garment custom fitted; generally, however, they fall in the 15-20 mmHg range."
My Jobst is a stock, 20/30 mmHg, so the Zensah would be less compressive, and I am supposing that in the event it does tighten as it dries, that might help prevent problems, even though the amount of support is not as much as I usually get when exercising. My LE is very mild and I use the sleeve / gauntlet only while exercising and flying, so I'm not sure how much pressure I really need anyway--I am in an entry-level prescription sleeve.
I'm still searching for a glove or gauntlet that makes sense to use while paddling. The most promising I've seen so far: http://www.tommiecopper.com/product/fingerless-compression-gloves . I'm ignoring the part about copper having some special muscle-recovery properties (is that possibly true?) and zeroing in on the part about wicking fabric, which is the same feature the Zensah fellow touts as making their sleeve suitable for swimming in. I sent an email asking about water use and amount of compression, but the Tommie Copper people have not responded yet.
The sleeve seems like a bargain, because at $29.99 for a pair of sleeves, I really have to wonder what is so different about my Jobst that makes it nearly twice that price for one sleeve! The gloves, not such a bargain; also about $30 for a pair, but only one will fit on my LE hand.
Both items seem like reasonable approaches to compression while paddling, and I'm all for wearing a sleeve instead of a full UA long-sleeve shirt when it's hot out. One question: if I learn something about the glove that makes it unsuited for getting wet, do we think that I'd be safe with no hand protection, given that the athletic sleeve is less compressive than a 'real' LE sleeve? I've worn UA shirts without hand protection many times while flying, before I got my sleeve/gauntlet, and I never had issues. Of course, I'm clueless on the amount of compression in a UA garment, compared to an LE sleeve.
If anyone has any thoughts, I'm all ears. Er...arms!
Carol
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You know... I really hate it when I have written a big long post and it disappears. Therefore, you are going to get the abbreviated version!
Carol- this is my favorite glove. Quick drying, does not turn my fingers blue. Not expensive - however, my hand is not involved so I can get away with it. Buy the opposite hand so you can wear the seams out.
http://www.pattersonmedical.com/app.aspx?cmd=get_product&id=89366
Hugz - there are some activities that I refuse to give up. They make my quality of life my higher... So I sometimes pay what I consider to be a small price on occassion to do what I love. We are all different though. You will figure it out as you navigate the lymphedema maze! Then do what works best for YOU!0 -
kira, Good to hear that you went for a bike ride. I am excited about the new job oportunities.
Tina, so that is where you have been. Buried in bandages huh! I am learning to wrap tomorow so I can be prepared to wrap in an emergency situation. You poor dear, your right about the stash of gear. My drawer use to house jeans and joggers, now it is 3/4 full of LE garbage. grrr. I did my promised steps 16 flights. I hope you can join me soon but first let my breathing recover.
Carol, I am interested in your new sleeve venture. Have you tried Lymphedema sleeve co? There sleeves are mild compresssion and dry really fast. I know they have offical 15-20 compression. they are more money though. I am interested in your glove venture also. Sheesh it's too bad experimenting with this stuff gets so expensive. If you are doing vigorous paddling without the glove but a sleeve only you may push the fluid into your hand. I would start out very slow and watch for any ill effects. No weekend SUP warrioring OK.
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Nordy, Thanks for the great tip! Hugz, I'm looking at 'athletic' sleeves because I want a fabric that will not retain the water as readily as our LE sleeves do. The idea is to have a sleeve that dries relatively quickly on my arm after I haul myself back up on the board. I'll take a look at the Lymphedema Sleeve Company.
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Carol. The sleeve I mentioned dries quick but I think if Zenzah sleeves are marketed for getting wet then maybe that is the way to go. They are cheaper. I see vertical seam lines are sewn on them. Watch the vertical seams don't irritate. Vertical lines are always better than horizontal lines my MLD girl says, as the fluid moves that way. Check to see that they are long enough.
Off to the beach to walk. I am learning to wrap today for my toolkit so I would like to exercise first. I think someone said to do exercise first and then do MLD session. Is that right? I would think so as it would help empty the fluid you accumulated through exercise.
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Good morning ladies,
I am trying really hard to keep moving and doing things to feel better. Getting some other medical issues cleared up is a huge priority now. Thursday I go to see a gynecologist for my pelvic organ proplase. I call it my POPP! I had a total hysterectomy 17 years ago and now apparently things have shifted so I have a visitor down south. I have had it for years but it annoys me more and more. That and a bad neck limit my activites. I am not allowed any lifting at all. I have a herniated disc in my back, and although it is not real painful again it limits my activities. I am going to a place called "The Spine Institute" my PCP refeerred me to. I go for my initial consult May 1st. Fingers crossed we can come up with some good pain management.
I am planning on walking the boyz this afternoon. I think I have mentioned the boyz are Murphy and Sampson, our Golden Retrievers. Both these glorious dogs were rescues. Next month we celebrate 6 years with Sammy! he is such a joy boy, they both are.
I guess I have wandered way out of the thread topic. Sorry! I am having quite a bit of discomfort in my BC breast and underarm. I have been doing my MLD and my stretching but both sites have been sore. I do not have a vest of any kind, just a compression bra. It does cover my side well up to the underarm. I just have no idea why I am experiencing discomfort now. I am six months out of rads. My BC breast is pretty swollen but it has been for a few months. Funny that my 'good' breast is smaller!
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Janis--Have fun walking the dogs.
Carol-I image you walking Chicago counting steps as you go!
Stayed home today and cleaned out some drawers. Did the weights and now on to the elliptical for an hour. Storms are abrewing!
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I am developping aschedule: MLD, Lebed Lymphedema opening exercises, then either walking (today walked about 2.5 miles in about 45 minutes, and I live at 6300 ft altitude...) or going to Curves. Talked to my pT about Curves, and she said gentle is fine- and if moving the machines is tiring or causes too much stress, just make the motions without the machines. :-) Slow but real improvement in my left arm, so we moved down to a smaller sleeve under the compression wraps. Hurrah! Doing <MLD in abdomen and seeing some change, and starting MLD in right arm, still hoping to avoid wrapping it, but may have to once the left is under control. So over-all good news here. And a pretty weather day and a good lack-of-hormone-day to boot!
Those of you who use Lebed method, is there a lot more on the DVD than the opening the lymphsatics exercises? i feel like I have a good grasp on those from the various voideos. What are the rest of the exercises, and how long a program is it? Trying to decide if it is something i should order or not. Seems to be helping.
Thanks-
Chris in NM
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Today I walked about 3 miles, which is just an estimate, because I replaced my washing-machined pedometer, but the new one doesn't work!!! Back it will go, but in the meantime, DH gently suggests I should lighten up a bit on the self-imposed daily exercise assignment (he may have a point there), and as I'm having minor surgery in the morning (getting the reconstruction fipples), I will do exactly that.
Chris, the rest of the Lebed exercises are gentle movements, something more than stretches, but certainly not cardio. Some cancer centers offer Lebed classes; can you find one to try out once, or chat with the instructor? I think the full program is about 45 minutes--but I could be wrong, as I do only the lymphatic opening part. I just don't have the patience to do the whole routine, when I am also devoting at least an hour to some other form of fitness each day. Your report is terrific, so certainly what you're doing is working for you. Congratulations!
Carol
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