Kicking LEs butt!! Exercise & Self Care Log
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11BC, not only do we not 'mind,' we are delighted to have another cohort to help keep the energy up! Looking forward to your check-in posts going forward.
Carol
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11B,
LE treatment does tend to set us back, as does LE itself.
Everyone is welcome on this thread--even slackers like me.
I didn't get any real exercise in yesterday, but hope to rectify that today. I'm planning on getting a pedometer to document the few steps I take, and wondered if it would register when I'm on the recumbent exercise bike.
This thread is for LE self care and exercise.
I did read an article in the paper today about Pilates that the reporter did at home, and how she always does it on alternating days.
My goal is to be kayaking this summer and have a regular exercise routine: lately I walk the dog, but find I get more aerobic work out with the exercise bike, and will try the real bike soon.
Kira
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Kira, I don't think a pedometer will register on an exercise bike, at least I know mine would not. Mine is a type that registers vibration, and for that reason, it doesn't pick up pedaling at all, and it's a bit inaccurate on an elliptical. To use it on a bike, maybe a little google searching will turn up a model that others have found works for bike as well as for walking steps. Good luck with that!
Carol
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11BC - Yes, please post. The more, the merrier!
I think it is important to acknowledge that everyone here is at a different stage in their recovery. Each of us comes to this thread with a different level of fitness pre/post surgery and treatment, and after developing LE. We all need to respect our bodies and do what we can today, with the goal of making good self-care a habit, as well as increasing our fitness level safely. No one is considered a "slacker" when they are doing what they can for today. At times, some of us will be making strides and provide great motivation for others. However, because we have LE, and due to its unpredictable nature (which seems to have a mind of its own), there will be times when some of us are experiencing swelling, flares, or cellulitis. Extremes in weather, barometric pressure changes, heat, humidity and changes of routine/diet due to travel and flying - these are things we sometimes can't avoid, and we won't always be at the top of our game. The purpose of this thread is to keep ourselves on track as much as possible, to take care of ourselves when we need to deal with flares, and to provide support to each other whatever our current status. Sharing how you care for yourself when you aren't at your best is also helpful. It provides a broader picture of what living with LE is like, the natural ups and downs. It provides hope that each of us can work through our lows and will feel better. So, with that in mind, let us all forge on in our journey to greater self care and fitness!!
Have I mentioned recently how much I love you guys? Well, I do, and I am so grateful to have your companionship here on this thread. The difference in my compliance with self care and motivation to do some form of exercise regularly is like night and day. It really is helping me get through this arm flare in a better state of mind.0 -
Tina, beautifully said! It is indeed companionship, of the very best kind. Maybe we should permanently resolve to use the term 'back off' instead of 'slack' --we need to back off the activity out of respect for our LE from time to time (and for sanity sometimes!). But a considered backing off is far from being a slacker. And if truly we're slacking...we're not slackers, we are just in need of a little dose of motivation. And this is a good place to get that.
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11 BC--welcome. I hope you meet your goals today. It is so hard to do when LE kicks your butt!
Carol/Kira--I will check my pedometer on the bike. I have tied it to my shoelace and it worked but may only do so on one side on the bike.
I have done the weights today, one MLD and Lebed. I am DETERMINED to do an hour on the elliptical in about an hour. I will only log back in if I fail. I don't think I will. Then one more MLD.
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11 BC, my name is Catherine and I'm a slacker! And a "bug". And LE was kicking my butt! LOL
Today I vow to be the windshield! Tina, thanks for continued encouragement and the recognition that we all are at varying steps in the process. I am so motivated by your attitude and by Becky and Carol and others here who are finding ways to make exercise and "self-care" a priority.
I met with a new LMT today (thanks Kira and cookiegal) and it was the best 2 hours. Of course, I wasn't swelling today!! (Murphys law). But, I finally feel more empowered as she taught me how to correctly do MLD - which my previous LMT did not believe in.
So, reporting in with a one-mile brisk walk this morning. 10 minutes of stretching (bad cord still in my axillae) and MLD with and by LMT. Upping the hydration today too.
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Hey, I usually call myself a slug, which is kind of funny since it's sort of a cross between slacker and bug!
I noticed today that with all my yacking last night I forget to report in yesterday. No morning MLD, but I wore my tank with large orange foam insert, sleeve and glove all day. Did 400 steps on stairway inside. Thorough MLD at bed, and I switched to tank with round inserts on both sides of trunk.
This morning I did MLD, put on tank, sleeve and glove. Did 400 steps, and goal for later this evening is a few ab exercises. Water, water, and a bucket of water tonight with my sushi. I wish the weather would cooperate; it's gone from low 70's to rainy, and now windy and chilly. We actually have a frost warning, and forecast says down below 30 degrees overnight!0 -
I feel light as a feather tonight, because I got some pretty good exercise in today. It must have been a windshield of a day.
I started with morning MLD, am well over 10,000 steps today, including 3.5 miles on a treadmill where I alternated running with walking and played with the elevation a good bit to keep it from getting too boring. That's Becky's strategy, and it works well. Then I worked out with a trainer, doing abs, core, weights, flexibility and balance for 90 minutes. He's very interested in my LE and post-recon-surgery progress, good at what he does, and a real human being to boot. I'm so lucky to work with him. (The man has a world 'squat' record in powerlifting...yet a real softie when it comes to helping others.) I drank tons of water today and of course, wore my sleeve and gauntlet while working out. And UA for truncal. I'll do MLD before bed, soon.
In the 'bad' department, maybe, just maybe I ate too much chocolate today. But I heard a fabulous radio teaser, just as I needed to exit the car to hop into the gym, that said people who eat a lot of chocolate consume extra calories, but some study seems to show they don't gain excess weight from it. I don't even want to check out the study, lest I discover the science is flawed. Let's just believe it!!
Also, you don't read the word 'Lebed' in my posts much. Today I decided I truly do not enjoy it.
Catherine, it's great to see you here!
Carol
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Final checking in. I did my ab exercises and bounced on the large ball for a little bit. Why is that so much fun? I feel like a kid when I do it. All tucked into bed and ready for MLD.
Carol, it is so nice to SEE you! What a wonderful smile you have!0 -
Yes, there I am, my gray-haired old self! I decided that if I could put my photo on Facebook (which I use only because I figured out there were more photos of my granddaughter on Facebook than were being sent to me!)--I could put it here, where I've come to 'know' people through their wonderful help. Of course, if I had a beautiful work of art I could capture for an avatar, I would use that instead!
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Carol, there is a very funny Modern Family about when Claire tries to "Friend" her daughters. The rule in our house is that we are not allowed to friend our children. I set up Facebook, back in the days when you had to belong to certain Universities, and barely use it. My daughters will send me links to photo albums. I'm a Luddite about it, since google mines your data just as much, but it feels so exposed and public to me.
Yesterday: high winds and cold here, MLD and exercise bike.
Carol, once I had pm'ed a woman who was getting PT at the same place I was--when I had my frozen shoulder--and I'm signing in and someone says "kira?" and I was thrown for a loop. Good to see your face!
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I don't make my facebook access public, and my 'friend' list is pretty short. My daughter and SIL do put a good number of photos on thier FB page, and ultimately they hounded me to join FB instead of making them upload to any photo site. They had the carrot...cute baby..and we're five hours apart, so I caved.
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Yeah I caved into FB with 10 nieces and nephews scattered and friends all over the world. I like the pics and videos.
Kira--pedometer did not work on bike. It captured only about a third of the moves. My elliptical gets only about half. I had not been using it on the machines as both record distance.
I have to go to work today so I have already done MLD and an hour on the elliptical. Will do Lebeds in a few minutes and off I go. I like knowing the cardio is behind me but hate to have to put on sleeves twice in a day if I do am cardio. If I do it in pm I have one sleeve on all day and after put on my jovipak (which I love) for the rest of the evening. But then I dread knowing I have to do it all day. Decisions, decisions. Anyway this windshield is finished for the day!!!
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BRRRR.....its cold in NY today! Who knew? I went out for my brisk walk and had no idea how "brisk" it actually was going to be. Brrrr.....
Ok, cardio done. MLD done (although, I really stink at it), stretching done. Deep breathing, Hulk-style kegels done. Sleeves in place after shower.
Now on to hydrate. I'm determined to be a windshield!
Tina, (or anyone else??) do you use the ball for bouncing alot and does it help with the LE? LMT told me about the rebounder but I don't yet have one. Anyone else use either of these tools?
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I'd like to hear more about the ball and the rebounder, too.
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I forget where I first read about it here, but I know Binney has mentioned sitting and bouncing, Becky recently said she bounces on the ball and pumps her fist in between weight lifting sets, and I just read about someone else doing it but can't recall thread. My house is old and has low ceilings so no way could I use rebounder. (Did you just get an image of my head going through the ceiling?!) I was so excited when I heard about using the ball because that is perfect for me. I put both of my arms out straight above my head when I do it. I can't say whether it makes a difference or not. It feels good, and I assume you're getting some core exercise since you have to stabilize yourself while bouncing. I wish I could count this as core exercise, but I don't. :-/
I don't have any experience with using the rebounder, but I think it's best on your joints if you bounce without feet actually leaving the ground (the center fabric of small trampoline).0 -
Carol, how lovely to "see" you! I was thinking of you as a gorgeous but kinda goofy white poodle. As for that study you mentioned, OF COURSE they found chocolate didn't cause any weight gain. Look no further!
Hmmm, it that reminds me I have some Trader Joe's dark chocolate-covered blueberries in the cupboard. I remain bummed (or should that be "bugged") over this new area flare, but I'm back to walking and dog training (lots of exercise there!
) and Lebed. No jogging yet because I wonder how much that may have contributed to this
(of couse the cracked rib and lying around with the flu didn't help any). What's causing me despair is the fact that this is my left chest, and ever since this flare started it hurts when I type, even though most of the swelling is down now. I have a left-hand-only keyboard that I had to learn to use because when I type right-handed my arm/hand/chest swell on that side. Does this mean I have to start looking for a toe-only keyboard?!! Grrrrrrrr!So, yeah, some exercise and a handful of, uh, blueberries. Fruit is good, right?
Binney, in bug mode0 -
Oh, Binney, the hurting while typing sucks! I had no idea you have a special left-handed keyboard to avoid swelling on right side. The compromises you have made and setbacks you experience without broadcasting amaze me. Makes me feel like I have a glass head! I can't keep quiet about a freakin' hangnail! I just checked your BC.org membership date, and I am shocked to see that it is 2004! Do you mind me asking how long you have had LE? We are so used to looking up to you for info that sometimes I think we forget a little (okay, I will selfishly admit that I do) that you have your own struggles with self care and have had to cope and adapt to accommodate your LE. The fact that we are mostly aware of your activism and incredible kindness and generosity with your time here really overshadows these things. I suppose that is a sign that you work hard to not have LE define who you are in life. You seem to have found a way to thrive in spite of the ups and downs of LE, and that is very much the point of this thread. I really hope this left side hurting while typing is a temporary thing. Yay for walking, dog training AND chocolate covered blueberries!
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Binney, I am overcome with gratitude for all that you do for us. Advocate, cheerleader, supporter, friend.....and I just want to "ditto" what Tina so beautifully expressed above. Crap! You just can't catch a break.
Jo - I hear ya! I am not always motivated to exercise and I do much better with a buddy. As I don't have a "live" BC buddy around who is at the same pace as me (or that has LE), I am now relying on this group to be my "kick in the pants". The accountability is great and in the end, you take it day by day. As Kira reminds us, Some days you are the windshield and some days you are the bug. Yeah to you for doing your Lebed and MLD. Gotta start somewhere and some is better than none. Welcome - and feel free to kick me in the pants any time while kicking LE.
Catherine
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Binney, have you ever tried Dragon Speaks software? My brother swears by it. You use a microphone and talk; the program is voice recognition, and he finds it easy to use and accurate. Or so he says! I know he uses it for email, which is usually so short that to me, the program must be really easy to use, or it would be just faster to type a short message.
If you're dog training, might I send the goofy poodle for a visit? He could use a training tune-up. He's loving, lovable, at home in a kayak, but he becomes deaf to suggestion or command in the presence of squirrels or anything/one he thinks has approached to play with and/or chase him.
Seriously, I'll join the chorus to say thank you, Binney, especially knowing how you go out of your way-left handed keyboard and all--to give help and support to all of us.
Carol
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Tina, Catherine and Jo, thanks for your kind words! Tina, I joined in 2004 because that's when I developed LE. The bc (which was diagnosed in 2001) was a long haul to get through, but while doing so I couldn't handle bc.org -- just didn't want to hear anyone else's woes, I guess. I had a good team of docs and trusted them, they listened to me and got me all the information I needed. But when the LE hit they were clueless, and I found myself amazingly alone with a serious chronic medical condition and no help at all.
So I came here looking for other women who might have answers. Just to show you how upset I was, when I first signed in I was Binney1, but somehow I got signed out, forgot my password and ended up re-registering as Binney2. That time I carefully wrote my password down, lost the paper I wrote it on, and soon became Binney3. And so on. I have been Binney4 for many years, mainly because I never sign out anymore. Otherwise by this time I'd be Binney5687.
But of course any day I could morph into Binney5 -- watch for it!When I joined there were only a few forums here, and you could easily read every post on the entire bc.org site every day. (Hard to imagine now!) I started asking about LE and, though there was no one else diagnosed with it, there were several other women with "mysteriously" swollen arms who were as amazed as I was that the swelling had a name, much less a way to treat it. Outrageous! We asked for our own forum and the mods gave it to us, and it's appalling to find that almost eight years later there are STILL women elsewhere on these boards who have no idea why their arm or breast is swollen. But now they have this safe place to land, because all of you are here to catch them -- and to catch them up on what they need to know!
THANK YOU, ALL for being here for me!
Binney0 -
Binney--What a trooper you are. I saw where Carol told you about Dragon Speaks. I had a student who could not write (or read) but had an incredible memory when read to and beautiful things to say when he spoke. He used Dragon Speaks to do his papers to me. What a drag when typing is painful--and you type so much for us!!!! Bless you.
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Today I limited my cardio work to a 40-minute, 2.5 mile walk outdoors with a friend (it was beautiful out!). I exercised my fingers a lot doing work at my keyboard; too bad that doesn't help with LE!
I did not do morning MLD but will end my day with it.
Carol
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Binney, you have helped immeasurable women. I know when I was terrified and lost, you patiently returned all my frantic pm's, and I know you keep on helping anyone who turns to you.
I believe you have single handedly created this tremendous resource for us.
Heal up, it's been a long haul with this flu.
As for my self care: cut and paste: MLD, exercise bike, a bunch of Hulks.
Binney, you make advocates and educators out of all of us: with your example, we learn and try and help others with that hard earned knowledge.
Think I'm more windshield than bug today.
Kira
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Hi ladies!
I've only read the first page of this thread but I've marked it as a favorite and I'll definitely come back, catch up and post.
I will do my stretches before bed (prescribed by my therapist) and the Lebed opening before bed as well.
I'll be back!
I HATE doing the MLD. It takes up so much time and I feel like I'm not doing it correctly because I never notice that much difference when I do it. 
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Cardio/walk - check. MLD - check. Stretching - check. Hulks - check.
Now on to inflate my exercise ball and go buy a paint roller (I can't reach my back and I have a stubborn spot of swelling).
Hope everyone has a great day!!
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So, speaking of doing things good for my lymphedema... Last night I went to bed and about an hour in realized I had wrapped my hand way too tight. It is not often that I do this, but a long time ago I learned not to suffer through it! In a half conscious state, I tripped off all my wraps and put my arm up on a couple of pillows. Sometimes you just have to know when to remove the wraps. The elevation made it so that my arm is no worse this AM - but I know what would have become of it had I left them on overnight (red spots, blisters, spots of swelling where they weren't before...). Sometimes we just have to know when to say when!
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Nordy--you are smart! I woke up last week--at least twice-- with a painful and numb pinkie, and went back to sleep, and managed to create a blister on my pinkie. Still nursing it along this week....
I don't care how tired I am: if it hurts, it comes off!
Kira
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Binney, thank you for sharing your story and the beginnings of BC.org. You really are a trailblazer! Hope you are more windshield than bug today.
Boy, got sidetracked yesterday - partly my own doing and partly due to external events. I succumbed to being a slug in the morning because I didn't "feel" like doing MLD, even though I had been experiencing subtle effects of this roller-coast weather. Yeah, pretty stupid. I wore my compression garments throughout the day, though.
Goal was to wrap my arm, exercise, and do a thorough MLD at bed. In the afternoon, my plans for the day changed. Husband had car problems, I had to pick him up at work, run errands with him, then take him back to pick up car. I get home, my forearm is not feeling good, and I am pooped. Realize my sleeve is killing me and rip that thing off. Eat dinner and an old friend calls. I am on the phone for three hours and it is suddenly 11:30 pm! I'm ready to climb in bed and realize I haven't done anything I promised myself I would do.
Did some quick node clearing, then walked up and down the stairs, 400 steps, pumping fist frequently. Then bounced on the ball with both arms straight above head. More fist pumping. My forearm immediately felt better. I get in bed after cooling down and drinking a bunch of water. I start with MLD and realize I am too tired to make it through the whole routine. I do thorough node clearing and turn out the lights. Lesson learned, do what you can for self care when you have the opportunity because you never know what the day holds. Also, I could have cut phone call short, but let myself "forget" and get caught up in the moment. All I could think of as I was climbing into bed was Steve Martin saying, "I forgot. I forgot bank robbery was a crime. I forgot . . "
Nordy, it is so good to hear you say that about wrapping. When I left my therapist's office the other week, by the time I got to my car I realized the wrap was too tight in my hand. It had been a demonstration with me helping, and my fingers weren't spread the whole time. Took it off when I got home. I was upset because it was an opportunity to be bandaged for a while, but I felt it was going to do more harm than good. Glad to hear from an experienced wrapper I did the right thing. My therapist had confirmed as well. I had the same feeling about the sleeve I wore yesterday. It is one of three that are supposed to be the same size but it fits slightly different. I had been tugging at it all day and was bothering me. Sure enough, by dinner my arm felt worse than better from wearing it. I am putting that glove in the trash so I never wear again. My forearm was a million times better after the exercise and fist pumping without wearing a sleeve.0
