Kicking LEs butt!! Exercise & Self Care Log
Comments
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Interestingly, my arm was very achy yesterday and I didn't know why. Wore my sleeve and gauntlet, nothing out of the ordinary happening, but the temperature dropped and today it's rainy. The discomfort lasted all day and is minimal today - cold and wind continue. Hmmmm.
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Ohio, I had the same experience the day before yesterday, with a similar weather change. My grandmother used to predict the weather based on how her bunion felt. I thought that was funny, but maybe not any more!
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I am having the same experiences with the weather changes; very achy arm and chest the last 2 days. Our weather has changed dramatically in NE CT so I am blaming it on that.
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I used to be able to predict weather changes where I had broken my foot years ago, but that's finally gone away. My LE is definitely affected by weather changes, and the side of my trunk will feel more achy than usual - I call myself a human barometer. I don't think it's anyone's imagination.
Alright, I am back in the game for Monday reporting. Wearing sleeve and glove, and earlier tonight I did 550 steps inside. Definitely slower pace than I had been doing, but that's fine. Recalling my mantra of the tortoise: slow and steady wins the race. Ball sitting/bouncing in between watching TV and folding laundry. Feels good. Going to see if I can get outside tomorrow and test pedometer.0 -
Yeah Tina! Good to start slow as you can always add more once you feel safe to proceed. I see ball bouncing is safe, folding laundry(good lord, how many loads did you have to do?) is moving around and 550 steps, that is good. What I don't see is you getting your wraps out and on. So I just got back in from another 30 min. walk and I know you and I have a date to wrap tonight. I am planning on wrapping in about a hour. Are you going to also?
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Hugz, I had the best intentions, but with all the laundry, I kept putting off wrapping because I would have been in the middle of process when it was time to rotate laundry or fold. I am pooped and going to put my vest on and get in bed since it is after midnight my time. I PROMISE to join you tomorrow! Do me proud and master that hand. I do think you have the right idea to practice a portion at a time. Less frustrating. My therapist had said I could try that way, but on the other hand, I really needed to have the whole arm wrapped for best results. Kind of forced the issue. Congrats on your additional walk - burn that pizza!!
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Hi All--Wind gusts up to 25 mph here today so I may skip the dam and do the elliptical. Also have to do weights.
Hugz-You are such a great cheerleader! Thanks for all of your encouragement. When I have a pizza attack I buy a Lean Cuisine spinach/mushroom one and load it up with olive oil, garlic, tomatoes, onions, and spices on top, microwave it and enjoy it to the utmost. Much less sodium than regular pizza. Plus only about 400 calories when finished. A fairly good size too. About like two big slices.
Carol--Glad you are getting back into the swing of things.
Tina--Hope you get all of that washing done today. I am so sure that counts as cardio.
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Ohio - yes, my arm definitely is affected by the barometric changes and humidity. We got a massive rain storm in NY and my arm and chest were painful for the entire time - a good 18 hours of aching and tingling. My curly hair has always been my "hair barometer" but now I can be just as exact with my LE. Maybe I can be a weather girl? Ginger, I'm in NY - not far from you so we were dealing with the same weather yesterday. Topday, sun is out, humidity has dropped and arm feels markedly better.
Tina, wow, all the laundry?! I can not imagine adding all that in - I've got twin boys playing three sports at the moment and the laundry never ends. I am sure all your laundry activities counted as cardio. How is the vest continuing to work at night? Such good news about the PAL and sounds like a great plan for June. I got in touch with them and looks like I am able to join the study too - trying to get my Rx and get an appt at Center for an evaluation first. I'll PM you.
Carol - how are the fipples? Your dedication - even when you have reason to slow down is so admirable and encouraging. Glad you got to "move" and exercise but happy to hear you are taking it conservatively. How's the hunt for paddle gear going? Sleeves and gloves?
Becky - do you have an eliptical at home or do you use a gym? I actually love the eliptical so much more than a treadmill - but it so far is not great on my arms.
Ok, Hugz - you remain our head cheerleader - and I thank you for that - AND now I want pizza!!!! Becky your alternative pizza sounds yummy and I may have to stash a few in the freezer for those urges.
OK ladies - enough typing and rambling.....getting off my arse and going to bounce and finish my stretches. I got in a 2 mile walk this morning - with some intermittent "jogging" - I haven't run in nearly a year, so I felt really good about the little bit I could do. Each day, I'll try to add in a bit more.
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Catherine, my fipples seem to be healing just fine. I see the PS on Thursday to get a professional opinion on that! Also a minor in-office revision at that visit; the shape of one of my diep breasts is not quite round in a certain spot, and it's become fibrotic from fluid pooling. Picture a corner--nowhere for that fluid to go. Inserting some of the bumpy foam stuff in the bra works to some extent, but it's always temporary, and the area firms up again soon if I stop. PS and my LE therapist agree this is not LE, but a highly local issue. So, he is going to do a little nip and tuck to round out the area, in other words, removing the spare tissue that doesn't play nice with drainage routes. I will fit in a bra much better after this, too, so I think it's a good idea and am looking forward to the revision, in a manner of speaking.
On paddle gear, I am ordering a second set of sleeve/gauntlet so I can use my existing ones in the water, but I also found an athletic compression sleeve that is circular-knit, so no seams. And a weight-lifter glove that exerts very nice pressure. So, when the water warms up, I'll be all set to try the (relatively inexpensive compared to LE stuff) athletic gear to see how that works, and be prepared to move to the LE gear if necessary. The water is still c-c-cold here, so it will be a while, but I'll be sure to report my experience when the time comes.
On the elliptical, I avoid using arms, because I worry about all that repetitive motion tracing the exact same path of movement. Just sounds like an LE problem in the making. So--I just do it without my arms! I keep arms at my side, doing a a little arm pumping from time to time, but I'm able to balance nicely without the arms. Elliptical machines vary, and we have one at home that I use mostly-and if I don't use its arm-thingys, they are not in my way at all. At the gym, some of the machines would be more difficult to avoid the arm thingys, so I don't use them. The benefit of no-arm elliptical is that not only does it not tempt fate on the LE question, it becomes a very good core and balance workout! I think that using arms gets the heart rate up a bit more, but I can get it high enough without the arms so I don't worry about that potential downside.
Becky, you know that I love to make bread, so when we eat pizza--usually Sunday nights--I'm making the crust. I make it super thin and I add a product called resistant starch to the dough, in place of 25% of the flour. RS is a soluble fiber, 100% natural --it's actually a type of cornstarch. So the crust has more fiber than if I'd made it 100% whole wheat, and the texture does not change at all. Toppings are heavy on veggies and light on meat (had to nudge DH along on that one!). Sunday night's topping featured roasted asparagus and mushrooms. I love pizza. Always have it with a huge salad, no dressing, just some balsamic vinegar. Simply have to find a way to put pizza sensibly into the weekly eating plan. DH, who lives in a hotel M-W nights, has a room with a microwave and fridge, so he brings the leftover pizza with him on Monday mornings. That way, my leftover pizza temptation leaves town.
Now, if only all the exercise and healthy eating actually translated to weight loss--stuck, absolutely stuck for about five weeks now! But I feel great, so that has to count for a lot.
Catherine, glad to hear you got some walking and jogging in today. You'll do more, bit by bit!
Carol
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All this talk of pizza is making me HUNGRY!!!!!
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I admire you gals using the elliptical machines. I have always hated them, as they feel very unnatural to me. I would rather walk up a steep hill in the pouring rain than do elliptical!! When I used to go to the gym, I would walk and run on treadmill, varying the speed and incline on different days. I liked interval training a lot. Have to admit part of me is not looking forward to going back to my gym (where I have membership). Even though it is a new one, it triggers some emotional stuff, as I used to associate the gym as being a place where I felt very strong. I am so not feeling strong right now, but my intention is to slowly get back there. When I had the PAL trainer over to the house, I felt good, so I know the group PAL sessions will be fine and a nice way to make the transition. Catherine, I'm so glad you can be part of the study! I am looking forward to hearing about your eval and when you are starting.
It is sunny and beautiful, and I need to step away from the computer and get outside for a walk. Will be back later.0 -
Tina, none of the machines is my favorite way to exercise. In truth, I hate them. Necessary evil. A speedy walk outside on a sunny day: nothing better! Wish I was there to join you now!
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I have an elliptical and a treadmill at home. I like the treadmill better but my therapist says you get more bang for the buck on the elliptical. She has me doing one minute with the arms, then one without alternating for 20 minutes. Then I do the rest without arms. She told me to gradually work up to 30 minutes alternating. So far it has not seemed to hurt my arm. I have the arm bars on the treadmill but I do not use them at all. Instead I pump my arms. I do pump my fist of my affected side every 10 minutes whatever I am doing.
Wind does not seem so bad so I am off to the dam. Weight lifting and Lebed finished.
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Okay, I am so far behind, I cannot catch up... But I need to vent! I have been going to PT per Dr. Massey's request and it is one horrific nightmare after another! Between doing half treatments (MLD but no wrapping, or wrapping only - which I can do at home!) and wrapping that is so tight that I end up pulling off because my fingers are turning dusky blue, then yelling at me for not wrapping while skiing (duh) to yesterday telling me that I shouldn't sweat... EVER. Are ou @&^*%# kidding me?! And what, obesity and depression are the better answer? Because that is exactly where I would be if I did not have exercise as my outlet AND if you took away the things that give me quality of life. I have SO had it. I am ticking down the days to the end of treatment. Oh, and did I happen to mention that the only reduction that I have had since I have been seeing these therapists off and on over the past three years, has been ON MY OWN. They have failed every single time in their treatment, yet I can do it on my own? Ha. I want to tell them to iiss my &@$ and walk away. Okay, thanks, I feel better now... Lolololololol!
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Yikes, Nordy, you had a lot to vent there! How super, super frustrating! Just curious--is the current therapist CLT-LANA, or some self-designated CLT? I did a Komen-sponsored survey of LE therapy resources in 8 counties around home, and I found only two CLT-LANAs, only three whose LE schools I recognized, and one who admitted they do MLD but have no training in it. Yet most of them have the initials CLT right next to their OT/PT. Are you getting therapy from someone who should be qualified, but just doesn't care about taking the time to understand your needs?
On the 'hats off to wrap' thread you'll learn about the giant bandage ball we want to make, holding bad PTs and docs-in-denial inside, and we're going to perch it on top of the Seattle space needle. Want to be included in the (virtual) unveiling ceremony?
Oh, and any 'CLT' who is campaigning for LE patients not to do exercise is living in the LE dark ages and not competent to provide any kind of therapy. Period.
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Carol, yes they are lymphedema cerified! One by Klose and the other went to Europe for her training. i am in an awkward position because, not only am I in the PT world, but I actually am lymphedema cerified by the Casley -Smiths. (But, again I will say, since I never specialized as a lymphedema therapist, I don't feel exceptionally qualified in that area... However, I do have the training!) anyway, the PT world is small and although I do speak up (could you imagine me NOT?) I have to tread carefully. But really gets me is how they think half treatments are okay... And how it is okay to tell someone they shouldn't sweat! I work up a sweat on the rebounder! So in that, they contradict themselves. Anyway, I have only a few more treatments left... I won't be going back after that. I guarantee it.
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Nordy, all I can say is 'mutter, mutter.' It really should not be this hard.
I don't know about you, but my deductible and co-pay are sky high, so it really makes me crazy when I don't get what I am paying for.
I hope you're out the door, working up a sweat as you work away this frustration!
Carol
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Nordy, No wonder we haven't heard from you.
I just listened to a podcast on Living Beyond Breast Cancer's website. I think it was February's transcript. I had to listen to this comment twice to believe what I heard. A PT presenting the podcast with lymphedema said that she prefers patients to do 1/2 hour of exercise over 1/2 hour of passive MLD. She said it was more benefical. So Nordy go for it! I will try and walk between the rain and my taxes sometime today. I did Lebed opening and breathing so far.
Seeing that you are an educated Pt trying to spread the good word on Lymphedema we will not wrap you inside the virtual giant bandage ball that ill educated medical community will be residing inside. No, your role will be to help Kira pull the tension just to the right desired amount. Not to loose, more tight for this occasion! I hope you will feel better after pulling at the wrap and the unveiling of the ball event.
Did you read that we are holding an oLYMPICs event also? I think we are twinning with the London Olympics date this summer. We have you carrying the wrap torch unravelling while on fire. You go girl! Exercise, and Sweat all you want while your at it!
Nordy, I just love your picture of you with your cheering self. It is so encouraging. Would you consider posting it large somewhere here on this thread so we can be encouraged by it? See Tina's example of the size I would like in her "drink water poster" above.
Becky. Good idea on the pizza. After a couple hours of the pizza binge, I took my glove off and noticed big seam indentations, more than usual. I think maybe the salty pizza made me swell around the indentations. How long of a time period have you girls noticed a difference when you eat salty food and swelling?
Carol, My mom is in her high eighty's and bakes bread and makes her own pizza dough. She loves baking bread and says it's therapy. Your pizza sounds great with the fiber added. I love pizza.
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No sweating?? Are they in the dark ages? I could not do cardio without sweating. Five minutes into it. Sweat away Nordy!
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Hugz, I am glad to carry the torch. I have no clue how to make a bigger picture! I don't know if I want to post any bigger on here anyway! I am pretty sure there are a couple of people that would LOVE to print that out and throw darts at it! I am not quiet when I see someone distorting facts or giving advice that is nuts... So sometimes I get into "discussions" on here... Lol!
Yes, going to go sweat bright and early tomorrow AM and probably cycle in the PM too!
And yes, my deductible is high. I was so angry last week when my treatment consisted solely of wrapping... That I had to remove 20 minutes after I left because my fingertips had turned blue... I was SO irritated....0 -
Nordy, did you consider marching back in to show them your blue fingertips?
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No, but I texted her and told her I was pulling everything off!
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Maybe you could do some photoshopping and send a picture of your hand with a big blue smurf thumb...
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Nordy, THAT IS OUTRAGEOUS!!!
Actually, it's also kind of hilarious: No Sweating!!! What is the deal with sitting still fanning yourself? That helps WHAT?! Who on earth dictates something like that? Do not blow your nose! Do not shed tears! Do not burp! It's like a (very expensive, not very funny) joke.
A little late for April Fools....
Go exercise
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And it is so pathetic that a PT of all professionals would in any way want to limit a person's physical activity. Isn't their job to get us BACK to physical function? This is not just frustrating, it's demoralizing. Women who don't know better might take that advice and head straight for the couch. Fortunately Nordy does know that this advice was nothing but a crock of you know what.
Uh Nordy...you're trained in LE therapy but didn't put your knowledge into formal practice...is it too late to do that? The world needs more LE therapists who know what they're doing!
Carol
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Reporting in...I did 45 minutes of elliptical tonight, am about to do MLD, and then some sleep!
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This is crazy, Nordy. I really wish you had a decent therapist who consistently performed MLD and was capable of wrapping. Can't believe they can get away with charging you for that kind of care. And instructions for no exercise that makes you sweat? Ridiculous. I could understand if they cautioned you from pushing your limits or doing exercise that overly stresses your arm, but doing practically zilch has got to be worse.
I tried out my pedometer today and walked 3 mi in the hilly neighborhood. I felt pretty good, and my arm and hand behaved afterward. Drank plenty of water, then proceeded to eat four squares of chocolate!!! Ha ha, yes, I did! Then I ate dinner. Made myself finish laundry, so I didn't walk until 4pm, which is when I started wearing pedometer. I removed when I climbed into bed, and it read 7226 steps, which isn't bad for wearing just under 7 hrs.
I have my new supplies set up and getting ready to wrap. Hmm, it's now 11:15. Wonder how long it will take me to do this? Definitely not close to Becky's 10-15 min! I am aiming for under 1 hr. I'll let you know how I do.0 -
Carol, You are amazing. How can you do all that exercise with such recent surgery?
Tina, You encourage me when you say the word "HILL"! I just want to tackle those dreaded hills if you are going to also.
Such a reward you are having lately with the chocolate. I broke down and had a handful of chocolate chips as we just can keep enough of the real stuff in the cupboards. It disappears!
Oh my I can't believe your still in laundry mode. You should put the pedometer on your arms, I bet you have folded more than your 7226 steps. I am going to wrap now.
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Hey Janis, we haven't heard from you. Are you OK? COME ON AND WALK THOSE DOGS ASAP. You will be glad you did. Miss you.
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Hugz, that surgery touched only a teeny tiny part of a body that needs to move each day, to prevent weight gain and to put work-related stress firmly in its place. Not to mention the benefit of no longer having any nerve endings in that part of my anatomy!
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