Kicking LEs butt!! Exercise & Self Care Log
Comments
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Yikes Linda Well I guess I'm too new to even try that. Maybe one day. That would be a wonderful freedom. My biggest cheat is sleeping in my day sleeve and glove. On occasion I will do it. Especially when it's important that I get a good night's sleep. I usually pay for it the next day with fore arm swelling.
(And yes, I know all the warnings about doing that)
Just got back from a 2.5 mile walk and will have done 20 mins on rebounder by the end of the day. Going out to dinner tonight. Probably will wear my violet sleeve and black glove and dress in purple and black. Oh and wear my cute little blond short wig. It's sassy, I'm told. hahaha
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YIKES!
Sounds like your arm missed the JoviPak , Linda
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Linda, position can matter too--if you were sleeping on your affected side, had your arm tucked under your body or your pillow, or your elbow and/or wrist bent for a long time it can make a difference. Keeping your arm a bit elevated may make it possible next time you want to give it a try. Here are some pictures of comfortable ways to elevate your arm (they're on the RIBP page, but work well for all of us with LE):
http://www.stepup-speakout.org/Radiation_Induced_Brachial_plexopathy.htm#sleeping positionsHugs,
Binney0 -
Oh Binney you always give your words of wisdom just when I need them. I was a good girl and did wear my tribute last night, but my arm really ached when I woke up this morning. I couldn't figure it out, but I think it's because I was sleeping on that side. I am not sure why, but don't think I had control over it.
Walked about a mile and did the circuit today. I feel like a slacker with what the rest of you are doing.0 -
Kay, I walked 3 times around the industrial park. I guess it was around a mile total. I'll have to measure that some day. Let's not feel like slackers. We are each in different places and are doing what we can when we can.
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Dunesleeper, exactly--we ARE all in different places, and no one who is putting one foot in front of the other to get moving is a slacker. A mile can be a great milestone! I think we all genuinely celebrate each other's progress, defined as whatever is meaningful to us individually. And of course, we all have different medical and daily-life challenges. I think that anyone who takes the time to drop into this thread and report has already made wonderful progress toward fitness just by deciding to keep it on the radar screen. Isn't that the first and hardest step--to decide it's something you want to do? Is the industrial park set up to be friendly to pedestrians? It gets on my last nerve when I walk somewhere that has no facility for safe foot travel, including from car to building across parking lots. I hope you've found a good spot to walk and take note of your laps!
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It's an OK place to walk. It just happens to be right across the street.
And yes, following this thread is progress because it reminds me that other people ARE taking charge of their health and so should I.
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I did sleep for about 12 hours last night, and probably slept at least half the night on my LE arm - It's a little better tonight, but am planning on wearing my Jovi tonight!!!!! and hopefully will get in my MLD before bed. Had a couple really nice walks in the sunshine today, and actually accomplished some things around the house. Now I feel like I need another 12 hour night
Thank you so much for your advice and support - purple, binney, victoria, et al
I lowered my Effexor dose again today, so only 2-3 more weeks of weaning off, I think that effects my pain and agitation level, also messes with my neuropathy and ability to control my heat -
I think it was Binney that gave me instructions on how to stop that nasty drug.0 -
Linda, your posts are very positive--full of action steps, so good for you!!
Today I got in just shy of 6 miles, no stroller pushing, just chose to do errands on foot, which was not a hard decision because it was a gorgeous, sunny day today where I am staying with my daughter for a few weeks. I was supposed to lift weights using my dumbbells that I brought with me, but the day got away and I did not find that hour. Tomorrow I must, so that I can stay on track with my current number of pounds and not have to back-track by lowering the weights to protect my LE arm. My daughter pointed out that I surely lifted more pounds than my dumbbells today (2 yr old and 5-month old), and my answer back was that if I don't stick with my LE-safe weight lifting program, I'll lose my ability to pick up those babies!
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Thank you Carol, you are a real inspiration, but I don't know that I will ever again be able to keep up your pace. What fun ages your grandchildren are, do they live close to you? 1/2 of mine live close and I love it, the other 1/2 live about 3-4 hours away.
I hope everyone is having a sun filled weekend!
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Linda, my grandkids live 5 hours away, which is so frustrating!
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Carol, It's hard for me to see mine that are 3-4 hours away, I'm blessed that some live close.
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Hope you had a good night's rest, Linda!
I have avoided sleeping on 'that arm' since I broke my shoulder many yrs ago. Every now and then, I give in because my right ("other") arm or hip gets sore. Then the LE arm reminds me to 'stay off' . Should have been the first thing I thought of !
I overdid it yesterday. Did my usual 'aerobics my style' exercises , fast walk etc ...and then tried some Pilates which I have not done in a few years. I avoided the arms, thank goodness .... My legs are killing me.~weekend warrior
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Slept fair - wore my Jovi most of the night but still woke up swollen, though not as much as yesterday. I have issues with my other hip, had fallen before diagnosis and fractured a bone in my spine, that caused some nerve compression (really painful sciatica type issue), so if I sleep on that side, I wake up not being able to walk somedays (takes a bit to get going) so I try to find the balance between which side to sleep on, I actually do better if I sleep in the recliner on my back, but then wake up with my bum asleep. Don't you just love it - NOT
Looks like another sunny day on the Oregon coast, hopefully I can talk my DH in to going for a walk with me today.
And it makes a big difference in my arm when I wear my compression sleeve. 0 -
Afternoon,
well today was my last session with my "cancer guy trainer" and now on my own! Would love to be able to afford more sessions but..he told me if I got in trouble or had questions to just e mail him. He suggested I get set up with one of the other trainers for a monthly review. I think that should keep me on the path. He is working to sell his program to the gym and the local hospital and it sounds like it will be great for others. Wish I had more money and he had more free time!
I had my LE therapist tell me to change my sleeping pattern, it is hard but with persistance, you can change the habit.
Tough week, my brother passed from Hodgkins so the service will be this week. He was planning on a stem cell transplant but really, was too weak and passed away while prepping for it.
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told me if I got in trouble or had questions to just e mail him.
That sounds good, proud ! Take him up on it if need be.
Pls take it easy on yourself this week.... best wishes to you!
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Couple of things to report.
I stumbled on an exercise called capoeira. It's an African influenced Brazilian martial art. It's gorgeous to watch!
http://www.youtube.com/watch?v=Z8xxgFpK-NMThen I bought a book on fixing back pain via posture. Good posture hurts at first, bu after about a week it feels good. Plus, you stand so tall and look way more attractive than all hunched over.
I bet lymph fluid just loves capoeria and good posture. Gotta be positive, yes?
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Uh, nibbana, you're joking about the capoeria and LE, right?
All that weight-on-your-arms? And even the musicians with their forceful repetitive motions? You're absolutely right that it's gorgeous to watch, though!But, with LE? Uh, nooooooo...
Maybe Carol could tell how we could build up to it, yes?Posture, on the other hand, straightens out all the kinks and there's no question it makes lymph flow happy!
Just wish it weren't so difficult to maintain. Especially with all the chest compression and the prostheses, slouching happens as sort of default posture. Did your book suggest and ways to stay aware of it long enough to make a difference?Be well,
Binney0 -
One doesn't have to do all the crazy flips and cartwheels for capoeria, it's mostly a form of dance now, rather than purely fighting. Just do some gingas and esquiva defensive moves, and the sexy Brazilian music helps too.
On the posture, I just stack my vertabrae, pull my shoulders back over my torso, pull my head back so my ears are in line with my shoulders. A plumb line should run through the crown of the head, through the shoulders, through the hips, through the knees, just a little bit over the ankles.
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nibbana
All I can say is Wow! I can't even imagine.
Binney
I have terrible posture and a bad c-spine as well as a herniated disc. When I first began the qigong classes, just a few weeks ago, I would not even sit on the floor. Still, the teacher makes you sit on the front of your chair without back support for 2 hrs ( ouch
) I have to say, I am already feeling that my muscles must be strengthening because it doesnt hurt nearly as much as it did the first time. I am hopeful that the poistion will feel ok in a few weeks ...will report back.0 -
Capoeria certainly is beautiful to watch...but you won't catch me trying it in this lifetime! (I'm too much of a klutz anyway, LE or not!).
I wouldn't say we could never do such a thing, but 'working up to it' may not adequately describe the time and effort investment to slowwwwwwly build that kind of strength. I do think of Deborah Cordner Carson, who has leg LE and came back from it to become an elite Cross-Fit athlete. So really--we should strive to do whatever activity is meaningful to us, although I think realistically there will be adaptations for most of us.
Nibbana, the capoeria really is fun to watch, and what I particularly love about it is that it shows the marriage of physical strength and grace. Thanks for posting it!
Carol
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As to my own fitness day (no graceful mid-air martial arts for moi!) -- got up at 6 a.m. to outwit the little ones and get my workout in while they slumbered. Two Leslie Sansone 'intervals' miles followed by an hour of weight training, abs, stretching and Lebed opening. During the day, did some outdoor walking with my daughter and the littlest one in his stroller. Fun day!
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Hi,
For those of you living in the Philadelphia area, Dr. Kathryn Schmitz (re PAL Program) will hold a breast cancer education lecture on January 29th. (information on lymphedema, exercises and weight lifting, etc..). If you have the opportunity to attend, it would be great to read comments. Here is the flyer:
http://www.cancersupport-phila.org/documents/BC- survivor edu.pdf
Also an interesting article on Dr K. Schmitz where she talks about the study (p. 16-22)
http://www.uphs.upenn.edu/news/publications/PENNMedicine/files/FALL_2012_full_issue_3.pdf
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RE: RESISTANCE BANDS
Hi LadiesI have read in numerous places where resistance bands may be contraindicated for those with LE> I believe it is because, unlike dumbells, we cannot accurately measure how much force/resitance we are against - I'm sure there is more to it than that.
In any case, I need a better explanation here , resident experts.
I have found an area group that I would love to get involved in, but they use resistance bands. Am I wrong ? Is it okay . I really dont think so.
Pls give me some add'l info on this to clarify further..
THX so much!
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I am under the impression that the bands are a no no. too much variation in them and no way to measure the tension is my understanding
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That what I thought too, proud.
The " no way to measure' was of concern. I called an OT in charge of the program and asked , but she said : " But you can always measure YOURSELF later for results ..." These are good ppl. who pretty much ' get it' too, but NOT when it comes to that ! I mean, I dont wantto attend something , feeling like a guinea pig and measure after and discover add'l swelling. I would rather be shown some solid research that tells me I'm( relatively?) safe with bands.
I dunno'.
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When I used the bands in the old days at my gym....they were all dif strengths and you never knew what you were picking up
best to try something else
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Purple, it is a question of unknown resistance. The goal with resistance/weight training is to start very conservatively with a small amount of weight, and then progress slowly by adding a small amount of weight about every two weeks. Guidelines are to add very small increments of weight each time you move up, to try to avoid muscle soreness (which the lymphatic system can interpret as injury/inflammation and respond with lymph, i.e. swelling). With dumbbells or gym weight machines, we know how much we're adding. With a resistance band, it's not possible to know. Plus, you might grip it in different spots from exercise to exercise or session to session, which will change the resistance even if you don't really intend to. Same is true with bodyweight exercises. I can put less resistance on my arms and trunk if I do a wall pushup compared to one on the floor, and I can add resistance gradually by lowering the angle of my pushups, using a bench for example. But I cannot know how much resistance I am adding with each angle change, and that's the problem.
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I agree with what Carol is saying, I tryed to up my weights on my own and did too much too fast, the result was lots of pain in the arm,horrible pain!
then I got smart and found a trainer who backed me back on the weights and now, pain is mostly gone. But under instructions to increase only afte 2 weeks when it feels very light...and then only at the lowest possible increase
you really can not tell what you are doing with the bands
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Thanks, Carol.
You put what I had in my thoughts into words!
It's a tad discouraging because this is the best support/ workshop group I have seen pretty close to me. I spoke to the OT as well as the girl ( who has primary LE) there who runs it, about my concern about the resistance bands. They both presumed I knew nothing about exercise and LE or the weight training trials etc ... but finally, I got my point across that is was the bands SPECIFICALLY that I took issue with.They pretty much said I was wrong and should ' try it and see'. ( no thanks)
Additionally, they are associated with a DR that is local to me that Binney once told me about which raised a red flag. Not so sure about him either. And, if he is SO great about LE tx I dont understand why he has NO le tx program whatsover at his own hospital !
sighFeel as though I am ' crying into the wilderness'. Oh well- just did some qigong and will do a nice long session of MLD since my appt is now postponed into FEB.
G'nite all. Thanks, Carol!
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