Kicking LEs butt!! Exercise & Self Care Log
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3Jays, brava for you!
YES to doing whatever you can! The reason I like the Lebed is because you can do it sitting down and still get good effect from it. And it's slow, too -- all good. You can start with the first section of the DVD or the first video online and work up from there, so it's also an easy way to get back into some therapeutic movement.Tina, goodness, I hurt for you!
Five hours, huh? That translates into about 20-25 times re-rolling the lousy bandages, yes? Do you have a bandage roller? I'd have been crying and flinging bandages long before that--you qualify for sainthood! I sure hope you're doing something soothing for yourself today--LE means we have to care for our emotional well-being right along with the physical. Do something chocolate, yes?Carol, that "little voice of LE reason" is indeed very little, especially when I'm engaged in a project. I find myself not stopping, but instead rushing to get it done before that "little voice" gets any louder. Later on, of course, it's screaming, but by then it's too late. If somebody wants to develop a little-voice-of-LE-reason amplifier I'd love to buy one.
Name your price!<sigh!>
Binney0 -
Well, we can do ourselves some little bit of temporary harm by ignoring that little voice of LE reason, but isn't it good for sanity to tune the thing out once every so often, in a gesture of 'it's my life and I'm gonna live it' ??? So long as most of the time, we listen. The voice is guidance, not a drill sergeant, right?
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Ok- here's what I did today:
- I left my compression wrap on
- I watched the videoes regarding MLD at NMLyphedemacenter and will begin doing these things daily to myself in addition to either the PT or my husband doing it.
- I resumed teaching a class for the first time since my January surgery, and explained the wrapped arm to my students.
- I planted tomato and flower seeds
- I planned dinner, and am letting it do its thing while i go watch a student's softball game in the beautiful spring sunshine.
Now my question: When you all were in the compression bandaging stage, how often did you rewrap? Did you unwrap to to MLD every day? Or is it wiser to stay wrapped for 48 hours or so? I will also ask my PT, who has told me to stay wrapped between my twice-weekly visits with her. But I was wondering what you gals have done.
Today is a better day. Thanks for the encouragement!
Chris in NM
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Chris, I'm not wrapping so cannot help you there, but others will no doubt offer suggestions from their experience. Glad you're in here reporting your LE care! Now if I could just find a way to swoop over in a few months for some of those tomatos (we live in the woods, literally--not enough sun!).
Today I did MLD in the morning, 45 minutes of treadmill jogging/walking, including some slow speeds with steep incline, just to break up the pace. Did a 45 minute weight-training/ stretching session. I showed ball-bouncing to some folks at the gym, who speculated that it would be fun to scoot forward with each bounce, and compete in ball-bouncing relay races! (We could do that at our imaginary LE camp/spa!!)
Today's mail brought me a variety of 'lymphpads' that I ordered from Bandages Plus, so I can experiment with cutting shapes and inserting them in my bra or cami, to try to move some fluid out of a pesky corner of my recon breast. I didn't know what size of ribbing or napping I needed so I have some of each: ribbed, finely napped, and coarsely napped. Coarsely napped looks like bubble wrap on steroids. This should be very interesting. I did not get much guidance from my LE therapist. I don't think she has seen my particular issue before.
Carol
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I am trying to learn as well. Thank you everyone here for all the valuable input!
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Chris, there is some research on wrapping that indicated that the greatest effectiveness of wrapping happens in the first 8 hours. That makes sense, because if compression works to reduce swelling, and it reduces the swelling inside the bandages, then the compression is going to be less. None of us wrap every 8 hours, usually (I've done it when I had a flare and was in panic mode, but it's really not necessary.) Most of us do a 24-hour wrap, take a shower, lotion, MLD and re-wrap. IF you and your husband are good at wrapping, by all means do that. If you're not, talk to your therapist about scheduling four or five days a week (which is standard protocol, by the way).
Carol, there are lymphedema hospitals in Germany and Austria that have just about everything you've mentioned. There they DO massage and wrap every eight hours, everyone eats healthy meals together, and there are both exercise rooms and planned outdoor activities. They're in absolutely gorgeous settings and the facilities are resort-like. You can bring a friend or spouse to learn and enjoy the experience along with you.
It's not free. Nitocris corresponds with the folks at this one (isn't that right, Nitocris?):
http://www.lymphedema-clinic.com/We could all just meet there, yes?
No, huh?
<sigh!>
Binney0 -
Well, Binney, at least dreaming is free!
I was imagining more of a summer camp atmosphere...smores and all!
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Oh smores!!! Carol you are killing me!
Chris--When I was first wrapped I was told to keep it on all of the time. I was seen by therapist three days a week. After about two weeks she taught me how to wrap and I was to wrap at first on weekends. Then I rewrapped on non therapy days. I remember Binney's posts about every eight hours. That would have driven me crazy. After I received my first sleeve I only wrapped at night until I got a night sleeve. It sounds as if you are getting back into the swing of things. When I had to explain wrapping to my students one blurted out "How do you take a shower?" And this was a college student!
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I have done my MLD for the day and will do weights now. I am increasing the time on weights so will decrease the cardio time on those days. I am going to do an hour on my Mom's stationery bike. The Lebed. It is below freezing today and will stay fairly cool the rest of the day. I dread the hot days coming.
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I'm a freakin' bug that's turned on it's back with arms and legs wiggling! Trying to right myself to no avail. Thank goodness LE appt shortly. Maybe it was stupid, but I did my 500 steps and 200 bounces yesterday. MLD's, compression all day and for bed. Hand and arm moves, water, breathing exercises throughout day. Last night I noticed my forearm has swollen more than it had been, my hand as well. New spots on both. Ugh! Should I have NOT exercised yesterday? I thought the breathing aspect of it would be helpful. I was unusually winded and tired more easily, so maybe not.
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Binney-thanks for the tips on scheduling thing. Seeing the PT today, so will discuss this. And before I go today, I will unwrap, shower, moisturize, do MLD as best I can at this point. What a time-consuming prospect! Then to Curves, PT and walking this afternoon. By the time I cook healthful meals, do exercise and lymph stuff, I don't have toime to do anything!
Tina337: Hope tour appt. helps you settle on aa course of action. It is tough.
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Oh, Chris, you have hit the nail on the head as they say. LE and related care can really steal your time. I'm commiserating with you on that one!
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Yes, Chris, the time drain is enormous as are the financial and emotional drain as well. Hang in there! You sound like you're doing amazingly well. Dearest Tina-bug, oh I can almost picture you with your amour and flailing arms, legs. Just give into it for now. It's frustrating though, isn't it.
Binney, I so want to go to the LE clinic but with promises of s'mores from Carol. Carol, you and Becky are the "kick butt" queens this week!!!! Kira, hope your mom is doing ok, and that you are too. 3jays, way to go. Just keep on trying what you can manage. That's really all we can do, right?
So, I do in fact have confirmed shingles and got my valtrex rx. At least it explains the increased pain and truncal swelling. Of course, the shingles are on LE side so it's like my immune system is trying to fight but just can't drain. I'm trying not to freak out about it and I'm going to just surrender and resume LE management/exercise when I can. So, my "kick butt" strategy is only sleep, compression, node clearing, and hydration. Just doesn't seem like my body can handle the stress exercise might put on it.
Go windshields team! Make me proud till I can join in again soon.0 -
Isn't chocolate is a sure cure for shingles? I'm sure it's an immune-system booster! Seriously, Catherine, time out for healing makes perfect sense here. Your kick-butt strategy is just what you should be doing.
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Catherine--Take it easy. I hope you heal quickly.
Heard on the Today Show today that dark chocolate is good for you and should be eaten at breakfast--for example chocolate chips in oatmeal. One fourth of a cup! Said those who ate it at breakfast and not later in the day lost 40 extra lbs. Lost over what period of time did not say. I love the way this chocolate research is going.
I said I was going to do 1 hr on bike today. Well I worked up resistence to 18 then hit the button to go back to one and it was stuck. I could not handle staying at 18 so I stopped at 45 min and did 15 on the elliptical. I did get my hour in!
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Wow, Becky, tha't chocolately good news! But I am puzzled. Every morning for the past six or nine months--in any case, for a very long time--I have been in the habit of eating one packet of Quaker Instant Oats with High Fiber. I like it at lot and it's really quick to make, but I find it too sweet. So I put a square of unsweetened chocolate in it--makes it chocolatey and tones down the sweetness. I use mostly Ghirardelli baking chocolate. Sometimes just a spoonful of baking cocoa.
But I didn't lose those 40 pounds! And in the past month, since really stepping up my exercise, I have neither gained nor lost a pound. Vary within one pound every single day.
Maybe I need MORE chocolate! A fourth of a cup is a lot! Between 210-280 calories, depending on the nutrition source I look at (I don't have any choc chips here to look at the bag). My portion is about 70 calories. I'll be experimenting in the morning wtih more chocolate!!
Carol
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Tina - I'm sorry! I too see the clear image of that bug on his back with his legs wiggling in the air. #sigh#
I'm not having a good week ... was in bed last night hurting so badly ... trying to figure out what I had done wrong. I went hiking on Tuesday, a rough one, through brush, under fallen trees, up steep banks, it was cool so that wasn't the problem. There was one point when the person I was walking with almost fell and she reached out and grabbed my hand and she pulled on it. At the time I thought, "uh-oh." It was the first time since my surgeries that I've had anyone do that. I was concerned but then forgot about it. I've been incredibly swollen since then. Last night I just hurt. Today it is better?! That is one of the things I absolutely hate about LE. I think it is weather related. It was 90 a couple of weeks ago and now it is 50. I'm thankful it is better but I hate the drama of it all...you do everything "right" and it isn't enough.
Hugs to you, Tina. If it is any comfort at all...I too have been a wiggly upside down bug. xo0 -
One more thought...do you all ever feel like that despite your best effort that there are days that your LE seems like it has a mind and will of it's own? I think that is when I feel most defeated ... I try ... and some days it just isn't enough.
Thankful for all of you...because with your encouragement, I'm not going to quit trying.0 -
Carol--Maybe the trick is you only eat breakfast with chocolate and nothing else the rest of the day! 40 lbs might go then. LOL
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Wow, you all have kept this tread so active over the last week. I haven't read what I missed yet. I went to a beach cabin for 5 days and walked 1-2 hours a day and I gained 2 pounds! Yah....well, I did eat my head off. So today I walked 45 min in 66 degree weather and complained that it was too hot. I feel like such a heel as most of you are in much hotter temperatures. Anyway girls after all those Easter goodies it is time to shake a leg and get moving again.
I am worried about Kira during her difficult times with her job loss.
Kira, when you feel down could you try to get outside with that cute shepard.. I bet your doggy will smile at you if you say the word "walkies".He will help you feel so much better and you will both benefit in the end.
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Hugs, my shepherd is half aussie and adores walks. And now I have a lot of time to walk her. We used to spell it, but she even recognizes the letter "W". She'll be 8 next month, and still has lots of energy, but the walks will do us both good.
I saw a patient today who was really depressed, and she started to walk and listen to Pandora radio, and it pulled her mood right up.
Great idea. She'll be thrilled.
Kira
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Walking with a dog is a special kind of walk, so I hope Kira that you do find more time for that now. Not that I did any walking today! I must have been flirting with being the bug today, because I let work steal all my time, plus I had a two hour meeting with some of my local LE advocacy group (an informal group to this point). Somehow I found time to do some kitchen work, but rationalized away any and all exercise. Tomorrow: another day. Expecially since I have Becky's permission to start it with an all-chocolate breakfast!
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Breakfast: Old Fashioned oatmeal nuked with a square of Trader Joe's Belgian dark chocolate, topped with chopped almonds.
All those in bug mode, I'm so sorry!
Brava for continuing to wiggle, at least!Dawne-hope, I can sure identify with your sense of defeat when you do the best you can and the LE acts up anyway, or when something as "normal" as somebody grasping at your arm can trigger a rotten flare. It can make me just frantic. The emotional aspects of this can be paralyzing, so when it gets like that I just try to keep putting one foot in front of the other and lower my expectations of myself for a time. It's too easy to try to maintain a "normal" schedule when we're actually overwhelmed and need to give ourselves some room. "Chronic" means we have to develop strategies that take both the ups and the downs into account. (I'm actually telling you all this because I need to remind myself.
)Be well!
Binney0 -
All you bugs and slugs, I am here to encourage you. We need to get all those old chemo toxins moving out of our bodies so lets move all that sludge out by tramping/jumping/dancing/ tapping toes or anything that constitutes calorie spending!
Kira, I saw those doggy pics. What a cute combo. If my mom saw the shep cross she would die in her shoes. She is nearing 90 and just wants a shep puppy so baaaadd! We can't allow it though as she just can't take proper care of it and she would become the "dog hoarder lady" quickly. We satisfy her doggy wants by sending over the golden doodle which is really well behaved and she can handle her well.
Kira, I used a gentle leader on a couple of my dogs in the past. They didn't like it but I could literally loop the leash on my baby finger and lead them without pulling. I loved it! Glad you now have more time to walk with your pet!
Binney. You need to find work at a chocolate factory quick.. You actually put choc in your porridge! What is this chocolate mad world comming to. ps. I like to put choc chip on a banana with peanut butter. yum
Going for my walk today and I have been faithful with my arm gear. My glove is hurting my web in my finger though. any solutions?
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Had two temporary crowns put in two back lower jaw teeth--old high school fillings had cracked. Was in dentist chair for 3 hrs!
After I met my friend at the dam and we did three laps--7 1/2 miles. The weather was beautiful!
I had some dark chocolate after breakfast and before appt. Heaven...
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Becky: How long does it take to do 71/2 miles? Is it hilly terrain or flat?That is so amazing,
I would just love to do 5 miles one day. I need to up the mileage but since I finished Arimidex a couple years ago,I just don't seem to have the same energy level and unless I stretch out every 15 mins I seize up in the legs which I believe Arimidex is to blame also. The other question is, are you the girl that lost 60lbs? I am trying to put the two together 71/2 miles = 60lbs!
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Becky, 7.5 miles after 3 hours in the dentists' chair--makes you a superwoman! I need to come see that dam; it must be drop-dead gorgeous there to keep you moving after a day of dental work.
Today: morning MLD, 30 minutes' heart-rousing cardio, and an hour of weight training.
Hugz, Becky is indeed our big loser, so to speak. She is amazing in her commitment to fitness and weight loss. She'll tell more, I'm sure, next time she's in here.
Today I baked 16 loaves of various kinds of bread, to give to friends--a big family whose patriarch is in hospice, and they are working so hard to make sure that he's never alone, and neither is anyone who is at his bedside. So eating is on no kind of schedule, and bread makes a convenient good start on impromptu meals. Kneading can be aerobic! I put my sleeve / gauntlet on for the marathon morning of dough slinging, and out of curiosity I put my heart rate monitor on. Not good for endurance, but it sure does give the heart a workout--however brief the bursts.
Bread baking and morning chocolate were the highlights of today's LE care for me. I hope everyone else's day was as good!
Carol
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Hi all-
I can so relate to bug days and the discouragement. But you'all are helping me geta plan. Today I did a short online vid. version of lebed, did some mild bicep and hand strength work at home, and did a full (but not too hard) workout at curves. I also worked on some teaching stuff, and helped a young friend cut out a quilt, went out to dinner with my hubbie, rewrapped my clean foam and bandages, took a short walk, and now to unwrap (my favorite part of the day!), MLD, rewrap, and watch a movie with my hubbie. It feels like a pretty good day, though so little gets done... *Sigh*.
I might have to try chocolate at breakfast...
Chris in NM
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Becky:I want know what you did to lose the weight. Spill the beans Beckells! I also want to know about those "Dam" wallks your doing!
JustmeJanis. I haven't read many posts over the last week and have lost track of you. Are you trying to exercise still? Please let me know how you are doing and do get outside a bit and put each foot forward unitl you walk a block or two. You never know you may keep walking further once you start and it is so good for you when you are down.
Nordy: Are you stuck on your bike and can't get off to post your success. We need you to drop in once in a while.
Carol: Breadbaking could be in the LE Olympics if it raised your heart level! The bread sounds delightfully sinful. Bring on the Carbs! So glad you are helping a family. Feels good huh.
Dawne: Oh I am so sorry about your arm and you were just trying to get healthy and set yourself back. No fun. Can you ride a stationary bike soon. I think you could exercise still without moving your arm too much. You probably are bummed and not wanting to move especially with pain and all. Oh dear.
Tina: Are you kicking LE butt all the way to LE OLympics. I heard there is going to be LE stairclimbing and you have to balance all your LE gear on top of your head and not spill any. Go for it.
All the rest of you that I missed: I hope you are Kicking LE dead on in the butt. Make it hurt and feel vindicated. There you go LE! GET THE HECK OUTTA HERE!
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Hugz - I am here feeling sorry for myself because I am back in treatment and have to wear the wraps again. I am NOT a good patient. No major exacerbation, Dr. Massey just wants me to try to maximize the potential of therapy. So... I was wrapped at PT, then came home to blue fingers and pain. Immediately unwrapped and rewrapped to where I can stand it. I hate paying for people to wrap me when I can totally do it myself and NOT turn my fingers blue! I have already informed my PT that the wraps have to come off tomorrow so that I can fit all my ski gear on, as I am going skiing. I can envision all the notes in my chart about my noncompliance... Wa, wa, wa.
I told her I would wrap the minute I get home and showered.
As for biking-- Yes! My hubby and I did a duathlon last weekend (run, bike, run) and it was a blast! And then I rode again Tuesday night. I have not done much else thIs week- running kids all over creation and PT, and had family in town the beginning of the week. I hope to be back to a more normal routine next week! All of you ladies are rocking the exercise! I love it!
Kira, I am trying to read back and figure out what all is going on. You probably don't want to rehash, but I am thinking about you and am sending all positive energy your way. A million hugs. ((((())))))0
