Kicking LEs butt!! Exercise & Self Care Log
Comments
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Purple, I am very appreciative of the PAL program and what they did for me, but everyone is entitled to make their own judgments.
Kay
I TOO am very grateful for what PAL has done for you, Carol and many others. I TOO *think* there may be some ' profit making' thing influencing... Anyway, I have a feeling we are not that far apart in our thinking. I would be forever grateful if I were you, and I applaud you for coming to their defense. Of course, I stand by what I said in my limited experience with 2 of the 'top' people there.
On another note, I know this is the EXERCISE forum, but so many of you ladies are great advocates and well informed that I wanted to post this here. I hope you can help(?)
POSSIBLE OPPORTUNITY
My local Cancer House of Hope has moved. Today I called the corp. who ran the house and said there was a void now in our large city . (there is ) She said she would be willing to call me back tomorrow and discuss what plans I might be thinking of fo the house ( YIKES- tomorrow? )
What ????!
A patient driven BC support group ?
Lymphedema info ?
????????????????????
Advice ? Suggestions ?
I cant let this house go by the wayside without trying something. They were there for me when my husband had colon cancer. It's just I have no LICSW qualifications. Mine would be volunteerism. ( how could they trust that ?) Yet, all their hired ppl are gone to the other locale. I am sure they do not want ' people for hire '.Please help!
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purple, deep breath but bet you would be good at helping folks at this place! Hey, you have this whole gang on here as your support and info!
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Beach walked next to the lapping waves, twas most beautiful. Now gotta fight the traffic and go for a appointment in the big city. eeks, I'm not paying for parking so MORE walking! Stretched, now I got lebeds opening and MLD to do. Then I call it quits. (for today!)
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Hey, you have this whole gang on here as your support and info!
THX
You know, that's not a bad angle ----support through internet forums ... education is power. Listings of great edu. info (Like SUSO). But there has to be lots more- and facetime.
One thing I didnt like about the place before was that it was sort of a 10-2 thing. If you were working, tough luck. After work support groups. Sat. morning yoga ( I do have some friends at the Y! :>)Possibly some reiki or massage therapy- I do know ppl.
But, more. Lots more.
What would YOU want, available to YOU ?
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well as someone who is still employed, I would like some evening things. I remember looking at support things at Gildas Club when I was diagnosed, but all the stuff was during the day and yikes, I still need to work for my health insurance!
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Exactly, proud !
Being employed myself, I guess I couldnt actually do anything there unless it was in the evenings or on SAT .
ok, sorry I de-railed.
thx
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Back to the topic of warning newbies about LE - remember I said that I tended to "adopt" my anniversary groups, and since my bmx was in January I tend to pop into the January surgery threads each year to give them education and encouragement. One newbie just posted this yesterday:
"BTW my dear surgeon told me it was perfectly fine to allow them to take blood pressure on my same arm he removed the lymph node a few weeks ago.I thought that was a no no."
ARRRRGGGGGGHHHHHHH! As you can imagine, I did a posting letting her know that her surgeon was flat wrong. I gave her links to SUSO, especially the Essential Info for Medical Providers page and the What We Want Our Health Care Providers to know. At least she must have read something about LE - either my previous postings in that thread or somewhere else and had the smarts to know that maybe the info she was given wasn't correct.
I CAN'T BELIEVE SURGEONS ARE STILL PEDDLING THIS NONSENSE!!!!!!!!!
OK, I have a headache now from banging my head against the wall on this one.
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I CAN'T BELIEVE SURGEONS ARE STILL PEDDLING THIS NONSENSE!!!!!!!!!
Grrrr!
What jerks!!
WHY do they do that . I honestly do not believe they are that stupid. What could the motivation possibly be ?!
At least you can feel good about helping one person learn the truth Nats ...and that is how the chain begins!0 -
as someone told me years ago, before a sinus surgery where I hated the surgeon....surgeons are not trained in bed side manner and have HUGE eggos!
they do not want to admit that what they do is anything less than perfect!
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Nats. Thanks for spreading the good LE word. Somtimes I go to other threads and do the same. I really hope they listen when I say to come and visit our LE threads or the suso website. Sometimes I am not in the mood in the public eye to educate and want to tell everyone to buzz off when they ask me about my glove. Yikes, What I really should do is carry a spare glove and have them try it on if they are that interested! Could you imagine!
Going to do Lebeds now. Good night.
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Lebeds are a great way to calm down from an angry stress event...like learning that a surgeon would give such misguided advice as NatsFan describes. Somedays, it just feels hopeless, doesn't it?
I've been absent for a day, from these threads--busy, busy with work and a reunion with an old friend! Yesterday I did have a few hours for walking, so I got about 6 miles in for the day. Was too tired for Lebeds or MLD by the time I went to bed, and this morning, I can sure feel it. Today is a travel day for me, so I'll get some good airport walking in.
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Yikes, What I really should do is carry a spare glove and have them try it on if they are that interested! Could you imagine!
hahahaha!
Good one, hugz.
I have some colleagues who have been doing the ' whispering' thing around me lately.
Finally one said :
"Whats with the glove ?"
I replied: " Oh sorry, not for retail sale. Dr prescribed" and just walked away, pretending she must have wanted to buy one. I figured it accomplished two things -
1. I was as rude to her as she was to me ( Yep, I confess- I bite back)2. Now she knows it is Dr prescribed. Lay off or I will report you vilolating my privacy in the workplace.
I have been doing the rebounder and lost of aeroboics lately. The toe is much better.
MLD always at night, but usually brief in the am.0 -
Purple, Love it, love it, love it! That was a great response. My only problem is that I would hang around to hear her answer intead of departing, thus entrapping myself into a sticky situation.I must take a page out of your book!
How much rebounding do you do? I take it you are doing the light bounce keeping toes on the mat. Good news on the pesky toe.
Did lebeds opening, stretches and that's it for today, no cardio. I am packin it in for the day. Well I will do MLD before bed.
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No HUGZ...MUST go or else they get to say :
"No, that isnt what I meant ..." and question further.
LAST word is imperative!
As for the rebounding, I only do about 5- min sessions 2 xa day , but I think a bit more, if you build to it , would be fine. I HIGHLY recommend it. I do alternating feet with arms gently going in a 'normal walk' fashion ( My LEist showed me this )
I believe the gentle bounce alternating feet method is described on LIVESTRONG. Feet do not really leave the mat- correct.http://www.livestrong.com/article/305690-lymphedema-rebound-exercise/
http://portjefferson.patch.com/blog_posts/rebounding-for-health-lymphedema-and-more
http://caligirlscorner.hubpages.com/hub/Rebound-Your-Way-to-Health
I just spoke with a ' lymphatic massage specialist" the other day ( posted in MLD method thread) and she said in her opinion NOTHING is better at moving lymph fluid than the rebounder. Claimed it moved lymph " 15 x more than anything" ( I doubt that )
I wouldnt go that far, but my LEist does recommend it strongly.
The *ONLY* reason ( I am aware of ) that the recommendation has stopped by some is strictly due to risk of injury. Having said that - be careful ! (DOH)
Either use one with a handlebar or place near a wall where you can gently hang on with your good arm now and then. My LE'ist also suggested I might open and close my fist now and then as I have hand swelling.I use ' slipper socks' when I walk/bounce.
I honestly believe the rebounder works.I would like to build up more time on it. My knees are not esp. happy with it, but I have broken one before, and I am strapped for itme too, but this is one thing I never skip before work.
Mine was under $30 at Walmart, but has no bar.
Happy hopping!
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purple - Is a rebounder essentially a little trampoline that you bounce on? I'm thinking that is what it is ... but I just want to be sure.
I know that several pages back ... I think it was Becky (?) that did ball bounces and fist pumps in the gym and I've done that when no one is looking and it really helps me. I think I've seen the $30 little 'trampoline' at Wal-Mart ... and I just want to make sure it is the same thing.
http://www.walmart.com/ip/Gold-s-Gym-Circuit-Trainer-36-Mini-Trampoline/12167834
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Yes, that's it Dawne.
Mine is the $29.77 one you linked to. Don't think I would get that one with the ' jumprope like " handles.
Again, my LEist suggests gently swinging or 'pumping' the arms in a very natural walking manner- the same way you might in an ' exercise walk'- not just dangling by the side.
I ESPECIALLY like the rebounder because I have very poor circulation and icy cold feet. The pumping of the calf muscle really seems to help with that. My feet have not felt 'as cold' as before since I began. I like something that I can actually feel working.
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Yay purple! Glad you found something that works for you!
Did 3.25 miles on the elyptical and then the 30 minute circuit. I am feeling strong and fit!0 -
I have a rebounder - I really need to start using it, especially on the ugly days, but it still hurts the toe, so need to wait a bit - or I could just hop on it, probably fall and break my head or other foot
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Linda - The hardest part is learning to pace ourselves. You'll be back soon enough. Take care of that toe!
I'm so going to get a rebounder. The ball bouncing and fist pumps totally helps ... I'm sure the rebounder will help too. My trainer recommends doing it in the morning first thing ... nice little gentle bounces to get everything warmed up.
I ran 24 minutes on the treadmill tonight - a new record for me on the treadmill. I hate running on a treadmill. But it's something. I will do MLD tonight before bed. I've done well this week on the MLD ... out of necessity. Been super swollen ... partly because of weather ... also lots of traveling and haven't been drinking enough. But it's better today. Running gets the fluid out of my fingers better than any other singular thing I do. Working hard on hydration tonight too.
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My rebounder is upstairs and looks out the window, nice view, I actually like using it, it's something great to do when your on the phone too, get a little exercise in, synergize! Thanks for the sweet words Dawne!
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Sue wish my lungs would let me run, Dawne !
Yes, first thing is the morn. is a nice way to get blood flow moving.
LindaThe last thing your toe would enjoy is a rebounder- hold off a while, my friend.
Meanwhile, back at the ranch -I have some sort of a 'pulled muscle' feeling in front of my thigh ( was doing new yoga moves w/ aerobics Fri and woke up with the feeling SAT morn.) Sure hope it is just a pulled muscle as I am paranoid this pain could be a blood clot! Dont know why I am thinking that way- just paranoia I guess ( hope !)
Still, I can walk, and will do some ' fast walking' later.Happy Super Bowl to all who watch. The family will be here - but I don't care much about the sport. ooooops, did I say that ?!
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Purple, at our house, it will be just DH and me for the big game. I will be cooking his favorite game-watching food (chili made with tips of filet mignon...don't ask me how I feel about using such an expensive cut of meat to put into chili of all things...but I love the guy so what the heck, for once a year!). But during the game, I will be multi-tasking for sure--catching up on all kinds of reading, because the game means zero to me! I do like the commercials, though!
Here in w. Michigan, we are getting a huge dump of snow that started the night before last. I think we're up to 22 inches or so by now. Yesterday, after doing 2 miles of intervals with Leslie Sansone, followed by an hour of weight lifting and then Lebed opening, DH proposed taking the dog cross-country skiing. I LOVE being outside with both of them, so I agreed, only decided to snowshoe instead of ski, thinking that I am a klutz on skis and would need to use my poles a whole lot less on snowshoes, i.e. do a favor to the arms and avoid putting weight on them. Well, turns out that the snow is of the incredibly light and fluffy variety, and being on snowshoes was about useless, as the snow did not compact at all underfoot, and I sank. I did not need to use my poles, except very lightly just to support my arms--that part was just fine. But yikes, did my legs get a serious workout! Every step was like a step-up in the gym. DH was having a challenge X-country skiing through it, too, because we were not on any kind of a groomed trail. But the dog--well, standard poodles have very long legs, and we should have named him Pogo based on his ability to jump vertically. So he was in his canine glory, running and jumping. We all came home pooped but happy, and my fitbit tells me that I walked just over 3 miles in the 1.5 hours we were outdoors. Today we will go out again, but I'll take the skis this time and see if that's a bit easier.
Here's a question for all: It is quite cold here--18 degrees yesterday when we were on the snow walk. I was bundled to the max, but the hand on my LE side was giving me problems, cold fingers to be specific. Of course, I had sleeve and gauntlet on. I was wearing glove liners under my huge mittens, and the combination was snug, so I took the liner out of that mitten to see if that would improve things, and it did. My hand stayed toasty warm after that. I took my other liner out a bit later, when I was getting pretty warm all over from the exercise, but the non-LE fingers then got cold, even as the LE fingers were plenty warm. So I'm thinking this is odd, and I'm wondering if anyone else who does snow sports has had difficulty with temperature control over an LE hand, and also, has anyone used the little hand warmers that you insert in your glove or mitten? I might try that, but probably not without first finding a glove or mitten that has a pocket for it, so it cannot touch my skin.
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(chili made with tips of filet mignon...don't ask me how I feel about using such an expensive cut of meat to put into chili of all things...but I love the guy so what the heck, for once a year!).
Wow, Carol! I really thought my DH was the only one who had that recipe! HE makes it here for the Super Bowl Every yr. I love it but am continuing my WW program though I have hit my goal. THAT Chil would be a trigger food for me, and I could see me snacking on the nachos all day too. I must pass.
As for your fingers, this has happened to me ! Now mind you, I do have poor circulation, but it has only happened on the LE hand on cold days . I believe it is when I am wearing a glove where the fingers are too tight. ( I have many OTC fingerless gloves ) . Even one of my Farrows has 1 finger trimmed just a tad more than the other Farrow and that one sometimes gets cold. I think the culprit was a " snug glove effect ". I too considered hand warmers like my mailman son has , but then recalled the warning about microwave warmed bags ( which I used for 10 yrs btw !) being bad for LE. I decided the premise was similiar and I would not chance it. My wrist and hand are the biggest issues and the most obvious. I swear I would not mind a sleeve with a gauntlet. Having to wear a glove is not only very conspicuous, but I know it will suck in the summer.
Carol, you know more than I do about LE, but please, dont chance your hand. I think perhaps the liner just made everything too snug. Go without it next time and do what you ended up doing. Dont put heat on your LE hand.
Also- be sure to check my reply post on the gloves and sleeves forum later.
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Purple, if I used a handwarmer, it would be only if I could place it inside a pocket that is well insulated from my hand--the idea being to make the mitten or glove just barely warm enough to be say, room temperature instead of either cold or hot. But anyway, today I tried a different mitten and had no issues--not cold fingers, not hot fingers, and no need for a warmer. DH and I (and pooch!) did a 3.5 mile walk through the snowy woods, walking with poles for balance and in my case, to support the LE arm. The snow is so light and fluffy we just walked through it. Still, it's a bit like walking on sand, so some resistance and thus a good cardio and leg workout. Now...on to that chili recipe, as game time approacheth!
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only if I could place it inside a pocket that is well insulated from my hand
Good!
Yes, game time and chili here now.
I am not into either ( tho' I'd love a bowl of it !)0 -
Purple - thanks for the words of wisdom about the blankety blank toe. It's healing slowly, of course I try to overdo and it starts hurting again. How is your toe?
We don't watch the Super Bowl
, I know you're probably all shocked, but.... Had a great day anyway, and some really good chili my DD made! I've noticed my LE finger tips get cold when I'm exercising sometimes, and usually when it's cold (though our cold is not cold compared to yours). I think that I've figured that in layering I might be adding compression to the arm, just slightly, but enough to effect the circulation. Not a ton, but just enough to make the fingers cold. My non-LE hand is usually fine. Does that make sense?
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Linda - I don't watch the Super Bowl either but I did follow along on twitter. I'm not a football fan...baseball...is another story.
Interesting about the cold fingers. I have noticed that my fingers have been freezing this winter...hadn't thought that the LE could be a factor ...interesting. I wore gloves a lot in the winter but haven't this year because I didn't want gloves over LE gloves...so that is one very easy explanation of why the cold...
...not sure if there is more going on...0 -
My non-LE hand is usually fine. Does that make sense?
It does to me ...mine are the same exact way!Linda
I dont watch it either. I just like the guyz being together and my lil granddaughter here and the smell of chili etc ...my toe is much much better, thanks. ( almost 100%)
I am certain you did yours more harm, unfortunately .
Hope it heals soon. I know how something actute can wreak havoc with chronic conditions- ESP,. when we are trying to exercise etc .. I have some strange pain in my thigh. Hoping it will go as quickly as it came !Have a good one !
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Dawne - I'm with you - the best part about the Super Bowl is when it's over - that means pitchers and catchers report next week! Now the Puppy Bowl is another matter - I could watch that all day!
Gained 3 pounds in a week last week - all in my trunk. I felt so bloaty!
It irritated me too, as I've been sticking to my training schedule for the half marathon religiously, so I've really been working out. But, I'd had a salty Mexican meal out, compete with salt-rimmed margaritas. Also, I'd fallen down on Lebeds and other care. Got back on track. I have worn my Tibute vest every night since Thursday, and have done MLD and Lebeds every day. Fortunately, those three pounds vanished in 2 days. Whew! But I hate always having to manage LE - I guess I still have trouble deep down in my gut accepting that it's a chronic condition and there's no "vacations" from LE. 0 -
NatsFan, well said! When my LE isn't bothering me, I tend to want to let the MLD go, in a grand game of let's pretend it's not really there. Then it bounces back and makes me crazy, and I know perfectly well that being more consistent with MLD would have helped at least minimize the rebound. I guess this proves that we're human.
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