Kicking LEs butt!! Exercise & Self Care Log
Comments
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Ohio, my gut reaction is to not name your arm something. Your car isn't you, your GPS isn't you, but your arm? That's definitely you. While it may feel like it has a life of its own at times, a name elevates it to something alien. It is hard to feel connected and at peace with a body that has changed so much because of BC and LE. Continuing to think of it as a whole entity is an affirmative attitude of your body with all its strengths and weaknesses. I understand you probably mean it as a humorous thing, but words are powerful. That arm needs all the love and kindness it can get, so if you do name it something, I hope you make it something encouraging and kind. Hang in there with caring for your father and you - can be difficult to do both at the same time.
Train arrived three hours late last night. I crashed practically all the way home, napping throughout the day. In bed early and now off to appts for ME for a change! Be back later.0 -
Hi,
Report about day 2. LOL day today - it started in the car this morning on the way to Helsinki. Turned the radio on and guess what come on... Donna Summer "I need some hot stuff!". Coincidence? Boy, am I in trouble today? Burst out laughing
Day went by pretty quickly, checking athletes' accreditation passes and chit-chatting. Took a closer look at some of the Shot put competitors. Wouahhhh impressive features, but very nice and friendly. The "hotter" vikings look like they come out straight of scandinavian mythology. Is almightly Odin back on earth? And....they run by the dozens around here. Just watching, I swear...
DH, who has been complaining about extra pounds lately, got extra motivation to exercise and sent a text message saying he was heading straight to the gym after work. Can't wait to see him when he gets home
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Nito, are you there to volunteer or ogle?!? The view must be spectacular! :-)
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Tina, volunteer work for the b.c association, but as a first time participant to that kind of event, the "view" came as a cherry on top of the cake.
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Ohio, I hope your dad is receiving the care he needs (besides his wonderful daughters' care!) and that he can return to his normal abode soon. You did remarkably well on your steps--big back-pat deserved there (do it with your non-LE arm to avoid repetitive motions, because you deserve LOTS of pats on that back, for your dad care as well as for the steps). And I think you might name your arm 'baby' b/c that's what you have to do with it!
Tina, I hope you don't fall for the do-everything-I-couldn't-do-while-away trap. I have to have a stern talk with myself sometimes to keep from over-doing after travel. It's easy to get carried away, so walk, don't run, on missed jobs and errands.
Nitocris, sounds like you are indeed having fun! And maybe your DH is just feeling the need to compensate for all the rich French food he ate on that extended holiday in Nice?
Today--12,000+ steps, including a rousing half-hour on a treadmill, plus an hour of weight training. And lots of continued running around at home. It's like being an orchestra conductor, only instead of musical instruments, it's people and things I'm directing. Not a complaint, though!
Carol
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Not much today. Took DH for cataract surgery today and an hur and half appointment turned into fiv and half hours. Was tempted to walk but he wanted me right by his side. Oh well there is always tomorrow.
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Oh the trials of elderly parent care! I am at Flagler Beach in FL. We arrived Wed after an 11 hr drive. My sister and I walked 2 1/2 miles on the beach. We did it again yesterday am, went to St. Augustine to shop, then back on the beach in evening to do 2 1/2 miles more. It became dark on us in the evening and we almost could not find our way back. Thank goodness for the flashlight on my iphone. I am going to Orlando today for a reunion of friends from Panama where I used to work. It is a large resort so I should get a lot of walking in. They also have a fitness center. Didn't do too bad on the diet so far either. It was 81 here yesterday and 100 at home. It is supposed to be 105 at home today. Nothing like coming to FL to cool down. Have a good weekend everyone! Stay cool!
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Hello, I am new to this forum. Thanks for the resources. Has anyone continued to use Korean spas or hot tubs and saunas since developing Lymphedema? I am sad considering that the wonderful body scrubs and massages and saunas and soaks that I experience at these jimjilbangs may not be possible any longer.
Thanks,
VVH
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Carole - I like it - my arm is now named 'Baby'. Now I can say 'gotta to take care of baby' or 'baby doesn't like the heat'. Cracking myself up here.
Dad came home yesterday and is doing well. Had an oxygen tank delivered to the house and he isn't very accepting of the change. THAT I can relate to - there is things (like LE) that we don't ask for but they are part of life now.
WH - I haven't even been using my own jacuzzi tub. Just not sure it outweighs the risk yet. I am thinking of trying a massage - surely the therapist knows something about LE. If I stay away from the deep muscle massge (that makes me sore) then I'm thinking a massage should be tolerable.
Only made 2975 steps yesterday - just too much 'parent' stuff happening. But things are settled so I am mvoing again.
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Ohio, the name Baby is perfect. Such a kind word. Carol, as usual, your gift for language and choice of such a thoughtful word is excellent!
Yes, these changes in life can be difficult. I can relate to watching a parent have to adapt to a greater need for assistance. Can be difficult for parent to handle changes, and for you as well. It is a sense of loss for all. Your attitude with self care for LE can be a model for acceptance. I share with my mom about doing what needs to be done to keep my body healthy given the differences in how it used to be. She responds positively to this. I think it's sort of like our group here, knowing others are stepping up and taking control is encouraging and makes one feel not so alone.0 -
Hugz4u,
Being around these beautiful, young and healthy athletes kind of takes the mind away from one's own disease and pain. You concentrate on something else, you don't feel sorry for yourself. It is also motivating because you see that the level of excellence they have achieved is the result of hard work and dedication. I can certainly relate to that; taking care of my body after all it has been through and managing my LE require hard work and dedication. I, too can achieve great results. So, can all of us. We could create a new category for the next Olympics - "The Lymphers' Decathlon".
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Today: 10,120 steps, including 29 flights of stairs, and 45 minutes on the stand-up paddle board. I think I sat down only for meals. A good fitness day!
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Hi, I'm new to your discussion, so glad I found it yesterday.
I was 8 weeks out of surgery yesterday and feeling pretty down about the possibility that LE can change my life for good. After reading some of your posts, I got out of bed and walked a mile for the first time since surgery. It was slow, but it was a start.
I am trying to understand the abbreviations so that I can be proactive in keeping LE away. So if possible can you answer from your experiences some questions for a newbie!
Does everyone get LE?
I had 33 lymphnodes removed, 18 contained cancerous cells, so I will have radiation after some chemo I am doing now. Is my chance greater due to the number removed?
What is MLD, should I do that every day to prevent, or do you start it once LE sets in.
What's Ledeb? I got a DVD from the American Cancer Society with arm exercises, is that the same?
Do you find dietary restrictions help ward of swelling?
What have you found to be the most reliable online resources available also.
Should anyone recovering from breast cancer start physical therapy with an LE specialist, or did you all wait for an LE episode to occur to begin PT?
Sorry for so many questions, I really want to be informed so that I can make good choices with my care.0 -
Hi GraceEmbraced ... One of the resident experts (Binney, Kira etc.) will probably be by soon, but in the mean time, here's my take:
1) The more lymph nodes that are removed, the greater the risk of LE. Receiving axillary radiation also increases the risk. Data are also beginning to come out that chemo may increase the risk. So you are at high risk for developing LE. That said, not everyone with these risk factors develop LE
2) There are data that suggest that there may be things that one do (and *not* do -- like excessive stretching early on) that reduces the risk of LE in high risk individuals. If I were you, I would ask one of your docs to write an RX for a LE consultation. S/he can get measurements and educate you on these things.
3) Exercise can be both a good thing and a bad thing. Many experts say that people at risk for LE should wear compression garments while exercising, and some would say that walking counts as exercise. Lebed (aka HealthySteps) is one particular type of exercise designed for people with LE. Here's a link
http://www.gohealthysteps.com/
It sometimes takes a while to get an appointment with a LE therapist, so in the mean time, check out the excellent step up/speak out website on things you can do:
http://www.stepup-speakout.org/
Good luck - KS1
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Fell off the kick-LE-butt wagon a bit while on vacation (managed to walk 4+ miles two of the 4 days, but did not manage to say "no" to german chocolate cake & batter-dipped fish). Since coming back, I have managed to walk at least 5 miles most days. After 6 months of wrapping & wearing Tribute sleeve around the clock (including during exercise), I finally received my custom all-in-one glove/sleeve.
I'm pretty sure it needs to be altered (I'm smaller now than when I was measured for it and the fingers slip down & some material bunching in the arm). The DME rep told me I could wear it between now and when I next see my therapist in 3 weeks. It has been in the 90s the last 2 days, and it was so nice to walk wearing a day garment instead of the heat-trapping Tribute.
Though the garment is big, the fit isn't horrible, and so I've worn the day garment for 10-12 hours the past 2 days. Both nights when I took it off, my hand was quite a bit bigger then it is when I unwrap or take off the Tribute. However, wrapping for 12-14 hours reduced the hand back down.
So here's my question: Do you think it is ok to continue wearing the day garment for 3 weeks until it is altered? I love the freedom (and coolness) of a sleeve, but I don't want to undo 6 months of 24/7 wrapping
KS1
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Ugh, KS, such a dilemma. I understand the freedom and coolness of a sleeve, but you have worked hard to reduce your swelling. Three weeks to see therapist and then time for garment to be altered? . . I think I would opt in favor of what is best for your hand since it has been so stubborn. If you continue to wrap, by the time you see your therapist your measurements will be consistent with the reduction you have attained and the garment can be altered to match appropriately. I would take the conservative route because you are more likely to know where your measurements will be in three weeks if you wrap. Not the easy answer, I know. I'm sure Binney and Kira will have some thoughts on this, and they know much more than I do when it comes to this kind of thing.
I'm currently in a holding pattern for ordering my night sleeve because my measurements are up and I am traveling again next week. After I return, we are going to work diligently to get arm and hand where it was and then take measurements. Most likely this means I will have to wrap when I return, but I'll do what I need to do to get the right size garment. I'm so happy with my vest - I want the same experience with the sleeve/hand garment. I had instructional video with me on last trip to practice wrapping, but discovered no DVD player at condo, so I need to try now while I am home for a couple of days. Ideally, I should wrap for car ride vs waiting until I get home.
MLD with therapist Thurs and Fri. Have not hit the aerobic exercise after returning home. Yesterday it was 93, sunny, and humid. I parked my car in far away spots in parking lots while doing errands, but it was miserable walking to car and then getting inside fire-hot interior. Awful weather, and I was swollen by the end of the day. I am still wearing my night vest. Doing things around house and out to A/C theatre to see movie tonight - nothing outside for now. Goodness, it is 105 in Knoxville today! Why in the world am I going there next week?!! Becky, I'm glad it's cooler where you are in FL!!
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Wait, KS, I misread your post. So wrapping at night reduced the swelling that occurred during the daytime while wearing new day garment? That's definitely a question for Binney and Kira.
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KS, how soon will the new garment be here? It's not ideal that the daytime garment doesn't maintain the reduction, but I totally understand your need for functionality. I'd vote for wear it as little as possible so you don't lose your volume reduction. See what you can get away with.
I'm also hiding from the heat, and it makes me a total couch potato.
My LE therapist started with mynetdiary.com for weight loss, and I'm joining her. There's a free version. Mary recommended lose it.com and that's good too.0 -
KS, I've never heard of a garment maker giving three weeks to try a garment before returning it for alterations. Call the company and see what their time limit is so you don't miss out.
Can you move the therapist appointment up? Meet her on her lunch hour (sometimes they'd rather not schedule for a brief consult because there's so much paperwork involved for a full appointment)? If not, at least call the company and tell them you have an unavoidable delay in assessing the fit of your garment.
I hate be the one to say this, but that up-and-down that goes on with the day garment/wrapping really is not ideal (but you already knew that
). Anytime there's excess fluid in the arm/hand it increases both the infection risk and the mess-up of tissue inside (fat deposition, fibrosis, inflammation). So the quicker you can get the adjustments made the better. It obviously isn't right for you now, so needs a remake.Bummer!
Binney0 -
What Binney said makes more sense than what I wrote.....the return rules for custom garments are usually you inform them of the need for a redo within 14 days of delivery. some will let you keep the garment until the new one comes.
Jobst used to be stricter, but Juzo had the two week policy and fit guarantee and they've changed.0 -
Well, it seems from these recent posts that we should add 'garment wrestling' to our Olymphics events. KS, it sounds like you are having to be patient to the point of madness.
Gracembraced, what are the abbreviations you need help on? And by the way, good for you that you're being proactive about learning about LE and how to minimize your risks.
Today, not so many steps for me, about 4500, but I was on the stand-up paddle board for about a half hour, and also paddled a silly raft with some kids--lots of furious paddling but the raft is not at all streamlined, so mostly we went in circles. The kids loved it! And I just finished some extra MLD, because I did a lot of arm work today.
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Graceembraced,
Here is a link where you can find a list of abbreviations:
https://dl.dropbox.com/u/47710826/List of Abbreviations.pdf
Take care
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Kira - I've been hiding from the heat also. I was never one to like the heat and my arm likes it even less. I go out in the early morning to water gardens and that is pretty much the extent of my outdoor activity for the day.
I used MyFitnessPal.com to track diet and protein during chemo and radiation. I need to put focus back on weight loss. Argh - - it's always something, easy to get discouraged. I said goodbye to many pounds during treatment but there are many more that could go away. Need to get more active as soon as I can get back on anti-inflammatories for the knees. Surgery tomorrow for port removal so Tuesday I'm back on the knee meds.
Logged 4750 steps yesterday - it's usually higher on the weekend but....... oh well, it's still an overall improvement for me so I'm taking it. Oops - gotta go out and move the sprinklers - yeah! more steps.
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Ohio, yay on the port removal! Hope all goes well. Keep up the steps, you're doing great.
My husband and I went to the movies last night. I made him cool down the car ahead of time, and to prove a point - and allay my fears about baking in car while traveling - he blasted the AC so it was icey cold by the time I got in. Wasn't even on coldest level. My husband just got a new (to us) car, and when he was looking I found out some had AC seats!! I said this was a primary criteria for my comfort and health, otherwise I didn't care what kind of car he selected. He found a 2005 Avalon with 38,000 miles and we love it! It also has a sun block screen that raises on the back window. He went to auto store and got screens you can put on side windows that cover the whole window! So, my previous years of sitting, baking and swelling during car trips south should be minimized. Still have to get out and move around - our plan is to do it every hour. Obviously, with the tremendous heat we are experiencing, I will have to walk around inside somewhere.
Well, I am wearing my night vest, sleeve and glove here in house. Preparing to travel again. Checked my pedometer and have hardly any steps. Looks like indoor jogging/walking in place later today. Gotta get some activity in.
Let's not forget to hydrate during this heat, ladies!! Water, water!!0 -
Thanks so much for your input about wearing my "not perfect fit" day garment. I was hoping to hear that, if I reduce with wrapping, it is ok to wear it, but Binney, what you say makes perfect sense. So I am going to play it safe and only wear the day garment a few hours a day while doing hand intensive things (cooking, handwriting). I am disappointed, but I am also feeling more optimistic that eventually I will get a day garment that works. My skin seems to like the juzo expert silver fabric better than the regular juzo fabric. More importantly, unlike a year ago when I didn't have enough strength in my hand and arm to don a sleeve/glove combo (fingers and arm just crumpled), I managed to get this one on in under 5 minutes. Guess all the PT and OT paid off!
You are so right about returning garments. I called the DME rep to tell her that I was going to need longer than a 14 day window for returning the garment since I couldn't get an appointment with my LE therapist for 3 weeks. She said that her company has no specific time limit on returns of custom juzo garments -- just to make sure I wash it before returning it. I think she feels bad about all of the ordering snafus, but she also said that her DME company is a huge Juzo customer and that they never have trouble with Juzo. Interestingly, she said that, if a garment is too big, Juzo may be able to alter it, rather than starting from scratch, and alterations only take 3 or 4 days!
On the fitness side, I got out walking early enough to beat the worst of the heat. I gotta say, even though it is ridiculously warm walking in my Tribute sleeve with gauze wrapped hand, my hand and arm look great when I am done (and much better than the two days I walked wearing the day garment). Too bad no one makes day garments that work as well as wrapping. KS
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KS--I learned at the CLT course that the Juzo silver fabric is especially cool (temperature wise) and some people complained about the color, but I'll take cool to wear any day.
Good for you for walking. I've been captive to the heat.
Kira
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Hi all--Have been too stingy to pay $15 for room internet at the resort I was at for reunion and the hot spots were always full. Back at beach yesterday. Wrote a post but it did not go through.
Walked a lot inside resort while gone. Last night did 4 miles on beach, got a beautiful pic of sunset. Then back again today at 6:00 am for 4 miles and beautiful pic of sunrise. Have to stay in until evening as it is too hot--but hotter at home. Nothing like coming to FL to cool down. Hope to do 4 more miles tonight. Have to do weights today too.
Temps at home have been 105 and more so we decided to stay here until tomorrow. Temps will be going down by Wednesday Tina.
Traveling with LE is so much more work. Washing garments, lugging huge jovipak around, etc.
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Hi, not much time for exercising yesterday. Managed to get 3 miles done on the elliptical before heading for Helsinki for the last shift at the athletics championships.
Today, back to the daily routine. "Dancing with the Stars"; 30mn of jive, swing and charleston and some stretching in the morning. Evening 15-20mn of remedial exercises (Norton II) and MLD. Back is still pretty stiff and sore after standing up for so many hours last week. Ai Chi would definitely help relieve body tension and pain, but the local pool is closed for the summer. AHHHH.. lucky those with their own pool!
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Does running around like a chicken with its head off count as exercise? I wish I could counter the stress of all this, but I am really feeling it. Trying to keep my non-exercise related posts off this thread and posted in the Grrr thread.
Just over 5,000 steps yesterday. It was unbelievably hot and humid. MLD in evening, wore sleeve and glove all day, drank lots of water. Today feels very warm but not as humid. Still, no way I am exercising outside. I do have errands, so there's no avoiding the sun and heat for a while.0 -
Hugs to you, Tina. It's been so hot here...the only thing I feel like doing is lie in a darkened room with the air cranked. Haven't been exercising much, but have been drinking and doing mld.
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