Kicking LEs butt!! Exercise & Self Care Log
Comments
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Purple,
30 minutes is awesome... I can't seem to get the back so I do what I can and it is about 30 minutes for me.. Just remember not to rush it and whatever you do, do it slowly.. Rushing doesn't work..
The pedometer gives me so idea of how much I really move and it works for me... except when I drop it in the toilet at work LOL - I need a new one now.
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GMA, oh dear, no I doubt the the potty is a good place to drop a pedometer! Too funny really!
never done that but since I just said that, expect something to happen!
Enjoying my new trainer, it is so nice to have a trainer that knows what lumphedmia is and how it needs to be treated! Confess that last night at the gym, I still feel silly using the 2# weights when everyone else is using heavier things and such. But sure that this is the way to go and that he will increase my weights slowly so not to mess up the arm. The arm is feeling better and it was nasty before.
Now I need to behave on the holiday weekend and not overdo things!
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I had the same thing happen when my truncal LE was finally dx and treatment started. Even though the focus changed to the trunk, the arm went down as well, and :::knocking on wood::: has been stable for a couple of years now, with no measurable difference anymore between the two arms except at the very top. It seemed that the truncal area was causing the logjam, and when that got cleared out, it helped the arm fluid move on its own.
35 minute treadmill run last night. This morning I did MLD, 30 minute elliptical and Lebeds. I've been bad with salty foods lately and can tell - I need to cut down.
I used a pedometer for a while and like Carol says, it encouraged me to do little things to gain a couple of extra steps, like parking far away, using the steps, and walking down the hall to see a colleague instead of picking up the phone. It stopped working a few years ago (nothing as dramatic as dropping it in the toilet, Gma
) and I never got around to replacing it, but it was a useful tool. 0 -
It seemed that the truncal area was causing the logjam, and when that got cleared out, it helped the arm fluid move on its own.."
Wow, Nats!
Can you be specific in how you clear the trunk ? Do you mind sharing?
THX0 -
I use a fitbit, which is a glorified pedometer. I sent an earlier pedometer through the wash. It however came with a little leash, which clips to a belt loop or waistband. So I salvaged the leash, and I use it with the fitbit as a bit of insurance to prevent flushing it. I am surprised how often the fitbit (and the old pedometer) manages to work its way off my clothing. The leash has saved the day many times, or likely the fitbit would be squished on the road somewhere by now.
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I have work at the fabric store - so I guess I will be doing 5 miles today LOL.. without my pedometer on.
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Purple - my LET did the initial work to clear out the trunk a couple of years ago. I'd been without an LET for over a year and finally found this one. She immediately dx my truncal and started working on that. I went 3x a week for about a month where she did complete MLD concentrating on the trunk and back, and taught me some techniques. After that month, my arm went down from being 6%+ larger than the other one to no difference in overall size and just a bit larger when measuring the top of the arm, even though she had done very little work on the arm itself. My arm has never really gotten bad again, but the fact that I also dropped most of my 20 chemo pounds that year may have helped. I've been pretty much able to keep it under control since then between using compression sleeve/gauntlet when exercising, etc. and wearing my Tribute sleeve or using the Flexitouch a few times a week.
It's hard to describe my truncal clearing, but I'll try. First, deep belly breathing. Then I clear the neck nodes and the nodes under the good arm, then I sweep from the shoulders and upper arm towards those nodes to clear arm fluid from that pesky upper arm area. I clear the nodes again after that. Then I move to the deep abdominal work, using the "scooping" method. Basically the motion is like scooping sand, cupping your hand and putting the pinky side of the hand against the skin. If your belly button is the center of a clock, you do deep scoops from 10, 2, 4, and 8 on the clock (basically above each hip bone and under each side of the ribs), pushing the fluid towards the belly button which is the site of that large abdominal lymph drain. It's a fairly firm pressure because you're trying to clear the lymph vessels deep in the abdomen - much firmer than you'd use in the rest of MLD. Once you've "scooped" the fluid, then you do deep breaths while pressing on the abdomen is a sort of "M" pattern to push all that fluid into the drain. Then I clear the inguinals and the nodes in the inner upper thigh. Then I'll clear the sides starting at the bottom, sweeping down and eventually sweeping down from the armpit. Then I'll try to sweep/pull fluid from the back towards the sides, but we all know how difficult that one is! I finish up with deep breaths.
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Dawne, I am so glad you resisted the snow shovel, Yes I to love to shovel snow but have put it on the no,no list. Well sometimes if it is a light fluffy snow then I go out and push the shovel with my hip and guide it with my hand but you have to be very careful not to get carried away and I only cut a path for the mailman. Wish I could do the whole driveway though. I have to be careful because most of our snow is heavy and wet.
Gma, Carol and others with pedometers mysteriously jumping into water: I wish all I did was drop the pedometer in the toilet, instead I decided to drop my only set of keys into the outhouse 1 hour from civilization whilst camping at 5 am. DH got a stick and fished them out for me but the agreement was that I would have to wash them off in the lake. I had no choice but to accept! My biggest fear is having my glove fly down the toilet, I make sure I tuck it deep into my pocket before I wee. Brings a whole new meaning to "down the drain".
You girls are doing all so good. I quit my nightly date with James and paid dearly for it. So I am back into lebeds and walking. The holidays kinda sucked my exercise regime right out of me. BUT no pity party here because I AM HERE TO STAY!!! Look out world. GMA and ME are doin you in with our walking! Yup....... gonna tramp and kick LE right hard in the butt where it counts!!!!!!!!!!!!!!!!
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Hugz, your husband clearly has a world class sense of humor! As do you, of course!
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OH dear Hugz, you and your hubs will always be young with your sense of humor!
too funny and since I have had the pits o of a week with docs, great to laugh!
no more docs till the New Year and only fun things allowed!
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Proudtospin and Carol: Glad I could humour you. Now, I have important work to do. I am having a date with my treadmill and James too! I can't be sidetracked. On with life!
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I have had a back fall - not sure what to do ... everything was swollen after work - wore everything I had to compress my body parts - I took them off when I got home and everything began to swell...I must have done more than 5 miles today... I really am having a pity party right now
... The last time I did lebed my fingers burned and swelled -what am I doing wrong?.. BTW the LE T, knowing we are close to bankruptcy, decided to let me try a month without him... He did reiterate that if I needed him, to call...I know what to do, I just have to try to keep up with it and tonight, I just feel like throwing in the towel...Why can't I just have one day with no pain and swelling!! Pity Party finished for now...0 -
(((Hugs))) Gma Walking is good, but 5 miles might be too much for you right now, my LE T said that walking too much can make the swelling worse, because you usually let your arm hang and swing, which makes the fluid go toward the hand - so if you can try not to swing your arm, or, I've found that if I put my hand in my pocket or hold it bent at the elbow and keep my hand up it helps when walking. And the first time I did Lebed I ended up hardly being able to use my arm. My LE T and the info that I got with Lebed says if you start to get tired, stop, if it hurts, stop, start slowly and gradually increase. I ended up having to take two weeks off to get the pain and swelling somewhat under control, now, because of the holidays and lots of company I've had a hard time getting back to it. Hope tomorrow is better!
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Linda - that 5 miles was my walking during work. If it wasn't part of work, I wouldn't do it
- And my LE T says the same thing.0 -
YIKES!!!! I sure hope you have some time to rest this weekend Gma!
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"The last time I did lebed my fingers burned and swelled..>"
Sure sounds like the Isotoner gloves are not cutting it anymore IMHO. Other than that, back off the walking/extra activity as much as possible.All of us ladies could be in the same boat as GMA if our insurance won't cover certain things. We need to speak up for ourselves and advocate for others. This is why for example I would like to see Farrow get 1000 emails saying we want a real return policy from them. On the NLN website, there is a document askinmg for adequate compression garements . I just did a cut copy paste and my DR just signed it for my INS CO.
Ok, sorry I went into my little rant. I will be at your pity party GMA. I am sorry you are going through this.
You're right...you know what to do. Now make sure you are doing it ! LOTS of water, arm UP, rest, ez on the salt. Back off the walking for the weekend.Take Care !
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Take care and rest up GMA! I don't like getting no exercise at my desk job, but maybe there are worse things for me. You are so right purple, without insurance, we'd all have the same issues. I hope some day that will not be an issue for anyone. Now why is "Imagine" stuck in my head?
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RE: Farrow gloves dassi said
" We should advocate for a change in policy. Can't say I would boycot them because they still make the best fabric around." I could not agree more. Perhaps we could try to get MANY of the girls here to email and ask if they would consider standard refund or exchange policies. I will post on a few threads, AND I will personally shoot an email off right now asking for it.
( OR 1 979 822 9120)
What do you say, gals ? Will you help us out ? There is power in numbers.
Perhaps some of you could write and say that you heard of the FARROW glove but also heard they do not have a standard refund or exchng policy so you dont want to chance them(?) Any takers ? I/we appreciate the support!
purple32
(SEE GLOVES and SLEEVES thread for more info)
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Let's hold off on the email campaign until we hear how Dassi makes out with Brightlife. We want to save our "firepower" for those companies and issues that really are resistant to our needs, yes? Farrow has been especially responsive to us in the past, and Brightlife has an exceptional return policy. The route to take for returns is through the place you bought it, not the manufacturer, though if a fitter was involved and won't help it may fall to you to take it further. One step at a time!
Be well,
Binney0 -
Binney
I certainly respect your stance. My email to Farrow simply said that I believe my FITTER should return any glove that has an issue and if they wont then Farrow should consider each case on an individual basis.
I dont see where anyone should squash an email request ( even from many people ) because Farrow has been responsive to (?) They are NOT responsive according to their own brochures and offer absolutely no refunds. This is not good policy IMO, and not everyone can afford to just ' eat' the cost of a glove.
Additionally, I am hoping my copper glove comes in sized the same as the black, but if not, I would like to know I have some recourse since several people now have stated that the different colors seem to be sized differently.
While I am optimisticly hoping for the best, and I am not putting Farrow on notice OR boycotting them by any means, I have expressed to them a desire to be able to work together to help each individual when warranted- ESP in cases where fitters will NOT help ( like mine !) I would encourage others to do the same.
I'm not on a warpath- just advocating for myself and ALL of us.
I wish all of these places were as easy to deal with as Lymphedivas! We wouldnt be having this 'exchange' !
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Purple, it's your fitter you need to go after. That is not service and you (or your insurance) should not be paying them for their policy. If they deal with a company, then it's their business to "eat" the orders that don't work out--certanly not you.
If you've been reading here carefully you'll note that many of us have had trouble with the darker colors fitting tighter, across ALL the companies we deal with. Not just sleeves and gloves, either--it's true of bras and camis too. That's not an issue of workmanship, though I'd love to see all of them take it into consideration in their sizing. I sure don't have any problem with you taking on whomever you see fit--but I still don't think a massing of our efforts is called for on this one.
JMHO
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Binney0 -
Purple, what did Farrow say in response to your email to them, about your individual experience? I met several of the Farrow folks at the NLN conference in September, and I found them to be very thoughtful people who listened attentively when I explained the LE community's need for better Ts and other truncal LE garments. It could be that since your fitter has not been responsive, the normal pathway for Farrow to resolve fitting issues has become the weak link in the chain for you. Can you explain to Farrow the difficulty you're having and ask if their customers have similar experiences with other fitters? Like Binney, I worry about flooding Farrow with email until we give them a chance to respond well to the needs of individuals like you and Dassi.
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Purple, what did Farrow say in response to your email to them, about your individual experience?
They have not replied as of yet Carol, but I doubt they will be flooded since my request for emails was essentially squashed. Hopefully, people will be able to advocate for themselves on an individual basis as needed.I wouldnt worry about it.
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I actually went snowshoeing yesterday. Because it was so much fun I completely didn't think of it as exercise until later. But the exercise did remind me, I am SO out of shape. Snowshoeing is a lot of work!
Gma, are you ok?
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Marple, I'm jealous! Used to love to snowshoe when we lived in Wyoming. A lot of work for sure, but it makes you feel like you're on top of the world (well, actually you are
).Gma, speak to us!
Hoping you're resting up and seeing real improvement. Big hugs!
Binney0 -
Marple - I've never done snowshoeing but I'd love to! We got six more inches of snow last night ... so I could definitely do it if I had the shoes. We never, ever get this much snow. The last time I saw this much (18 in +) I lived in Massachusetts. It's absolutely beautiful. I'm thankful for men with big tractors to dig me out.
Once again. I win the dumb award tonight. I went to the gym to do some cardio. My silverwave works best for me when I wear it for cardio only ... so I wen wearing that sleeve. WITHOUT THINKING I reached for the weights and had done 2 sets of bicep curls before I realized what I'd done!
I need more compression than the silverwave when I lift with weights ... what was I thinking? I didn't do any more hand weights but did extra cardio. My arm feels kind of achey. I will do Lebed and MLD before bed ... but boy was that dumb. Hope I'm not paying for this one for days. 0 -
purple - I tried the Farrow gloves about a year ago. And I ordered a color I can't remember now what it was ... but when I received them they were way big. I can't remember now who I ordered them from ... but I called them and they did let me return them. Upon the recommendation of the lady I talked to ... she said try the copper because they run smaller ... and I did try and they did work. So I'm not sure it is a Farrow problem. But I don't know your situation ... but they did let me return them.
They don't work for me in all situations because I need more compression than the Farrow gives me when I lift weights ... but they are great for the summer and they are the only glove that I've been able to find off the shelf that are long enough for my fingers.
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Purple, why not call Farrow and have a friendly conversation over the phone? The customer service rep will surely outline their return policy, and you might make a bigger impact by talking through your concerns, compared to an email where it's just a one-way conversation. I looked at their website and didn't find any mention of a return policy. So I wonder if your fitter has the right information, or just does not want to be bothered with any returns or adjustments.
Snowshoeing is a lot of work, but it's total fun, as Marple said. DH and I will be doing that together, with the dog, before too long.
Yesterday I walked 6.5 miles, and today 8.2 miles so far, and I think I'll be outside again for another few miles before calling it quits for the day. DH and I are in a beee-u-teeee-ful spot for the new year celebrations, having decided to use airline and hotel points we accumulate during the year. Business travel is 100% disagreeable, but it is nice to get some free flights and hotel nights out of it. We're in San Antonio, and to anyone who lives here or nearby: I'm totally jealous! What a beautiful city, especially the Riverwalk.
I do need to do some Lebeds tonight, and some MLD. I'll work those in before bedtime.
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5 minutes of lebed and 5 minutes of sansone and will do MLD at bed tonight. Doing ok.
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MLD this morning, wore my one piece sleeve all day, got in a nice walk in the sunshine w/the dog, and then over did on house work, but even with all that and having to double up on the pain meds, my arm and hand look good, only slightly swollen!
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