Kicking LEs butt!! Exercise & Self Care Log
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Ouch, Becky, that really is painful. I hope the young woman's family has circled the wagons in a big hug, and that someone is suggesting to her that she seek some professional help to process all of this. It truly is beyond understanding.
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Oh, my goodness, Becky!
Prayers for that dear young widow! And for all of you who knew him--very hard to process.Gentle hugs,
Binney0 -
Same as yesterday, just under 3.5 miles walking the hilly neighborhood. Hot and muggy, ugh! Too hot in the morning, so we waited until the sun went down. It started raining not long after we came inside. Drinking lots of water!! MLD shortly.
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Still on the sidelines... :P
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Well, I ordered $91.00 in bandages today. Time to face the fact I'm going to be wrapping.
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nibbana -
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In my quest to find sleeves without the irritating silicone band, I bought a pair of sigvaris sleeves and I don't like them. My skin (all up and down my arm) was so itchy and red after I wore them (it was hot) that I thought it might be cellulitis. I washed them before wearing...learned to do that the hard way over the years...I have very sensitive skin. I just received another new set this past week...jobst silicone band...what I started out with.
Experimenting over. It gets very expensive.
I'm training for my 6k on Sept. 16. Nothing interesting....just cardio, interval training. I've had to drop to 1lb weights for my arms with my trainer after my travel fiasco in June. Kind of depressing but I'm on the other side...pain is finally gone in arm.
I sure wish I had some corks...Binney's cardio training sounds a lot more fun than my regimine.;)0 -
Gma, we all get sidelined from time to time. It might not feel that way, but you will be back in action soon if you rest up. I find it hard to see others having fun when I can't (if exercise is fun), but it helps remind me there are ups and downs to living with LE and the down part isn't a permanent thing. Instead of thinking about exercise, I visited this thread and focused mainly on the self care part. I need support with consistently wearing my garments and doing MLD just as much as exercise! If you change your goals to reflect what is important to your health right now and check off accomplishments and compliance each day, you will know you are making progress. I think the key is to break things down into doable goals for where you are: post surgery, newly diagnosed LE, a flare, or things like cellulitis, broken bones, sprains, etc. And, yes, these things have happened to a number of us here!
Nibbana, I'm sorry about the wrapping and $$ for LE stuff. I noticed on your "Fine Line" thread that you were wondering about exercise. I think while you are having active swelling that weight training needs to wait for now. However, cardio is good for helping with swelling, but since it takes less to overtax a lymphatic system that is already struggling, it's best to start out easy. Try a short distance of walking and see if it causes swelling that doesn't go down after MLD and extra hydration. If it doesn't, then you can try adding a little more distance. The key is not getting too gungho when your body is still trying to stabilize. There is a gal here who even walks wrapped or wearing her night garment, so having a flare or swelling doesn't have to mean no activity. But you are right that it is hard to find that fine line between productive exercise and doing too much and causing swelling. I think it's harder to find the balance right after diagnosis because the body hasn't been retrained with consistent MLD to move fluid in new pathways. As time passes, it does get easier, and you will be able to "read" where your body is and what's too much and what is right. After things stabilize you can experiment more with pushing that boundary. That's where I am right now, and I am trying to be so careful and not overdo. I keep reminding myself to think long term, and that means small steps vs giant strides of improvement. I can't recall if you have a LE therapist? Here is a link to finding a LANA certified therapist, which is the gold standard for training. It's a good place to start. I have also inserted a link to the StepUp-SpeakOut, a website that has a lot of good info on LE. I found it very helpful when I was first diagnosed.
http://www.clt-lana.org/therapists/default.asp
http://www.stepup-speakout.org/
Dawne, I am so glad to hear you have made it out the other side. I would love to hear about your training for the 6k and how you left the Land of Flare while still exercising.
It's time for me to see if I can walk now or have to wait for the sun to start to set. It has been so humid, but I am resisting going to the gym. Nothing is as good as the hills by my house. They kick my a$$. With the weather this past week, I have dialed down the mileage, but my goal today is to do somewhere between 3.5 - 5 mi without overheating and swelling. Come on, Fall!0 -
Tina337 - I didn't leave the land of flare while still exercising. I was in better cardio shape in May than I am now. I've lost a lot while trying to get stablized. I didn't exercise with my LiveStrong trainer for six weeks. I spent a lot of time in the pool. It was too hot to get out ... so I didn't do much. I timed myself in May the full distance on a real road (not treadmill or track)... and I did it again a couple of weeks ago (finally cooler) ... and I'm 3 minutes behind where I was in May.
Damn LE ... but I'm on the road back. That's what I'm focusing on ... not how much I lost or I get angry and really depressed. I'm baaaack.
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Frustration seems to be the official language in the Land of Flare! Exercise is our friend and our foe. I really like Nibbana's 'thin line' characterization, which describes it perfectly. And I think the thin line is a wavy line, because it certainly moves around.
These past two weeks I've been noticing annoying ache all down my arm, which is new, and a few days ago I began to notice it's in my shoulder, too. So I went to see my CLT and her only suggestion is to wear the sleeve more often and do more MLD. Normally I wear the sleeve only in stress circumstances, because at this point I have no visible swelling--so in airplanes, while exercising, and when it's just plain hot out. I saw the CLT on Wednesday and wore the sleeve/gauntlet all day each day through the weekend. And...the ache turned into pain! It didn't help that I drove six hours yesterday--in the sleeve--but was in such a hurry to get to my destination I never stopped one single moment. (Drove to daughter's house...they're having baby #2 as I write this!!! --baby is taking his good old time from labor induced this afternoon!) So I compounded problems with stupidity, I guess.
I wondered if perhaps the ache/pain isn't LE, but then yesterday afternoon and evening I did three slow MLD sessions, and yup--it felt much better even before I fell asleep. Today I awoke wondering if the compression is pushing fluid to the wrong places. Maybe the answer was not to wear the sleeve all the time? Doesn't LE just make you crazy, because the pieces of the puzzle really do not fit very neatly together. What a crazy guessing game. Today I ditched the sleeve. And guess what? Much less pain! Arrgh--that makes me happy, of course, but don't we just want to know what works, so we can do that and be done with it? I'm weary of this constant guessing game, including the guess that the root of my problem is that I overdid it in the gym. I missed three sessions in a row of weight lifting because of work travel and the LE summit, and I had that conversation with my PAL-trained trainer, that we were supposed to back off the weight, but we--both of us--reasoned that I had progressed so far, I could probably ignore that rule. Wrong!
So, I'm frustrated too, especially knowing that some of my frustration is my own doing. And my LE is mild now, seemingly subclinical. I cannot imagine the frustration of you brave souls who put up with more LE crap than I have to. Learned my lesson--follow the PAL Protocol to minimize the risks instead of playing fast and loose with those guidelines.
Good thing there's a new grandbaby coming to make me forget all of this!
End of well, I guess you'd call this a rant. Against myself. If misery loves company, I consider myself lucky to have found that company here!
Oh, and today I pushed grandbaby #1 in her stroller for 5.5 miles, not setting any speed records, because it's hot here. Becky, if you're reading this, I repeated our trail and then some, only this time I walked past that ice cream place without stopping (not sure how!).
Carol
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carol57 - Six hours driving without stopping? You didn't drink enough water yesterday!
Takes one to know one.
My left arm has hurt a lot this summer...no noticeable swelling. For me, it is a sign that I've done too much, been out in the heat too much, etc. it's a sign to back off. The only thing that helps is MLD (no short cuts, the whole, boring thing) and lots and lots of water.
Take it easy. Also ... I hate to say it .... But pushing that grand baby that far... That would make me swell big time...the pushing.
Sorry to even mention it because it is so awesome to be able to do that...just be careful! ((hugs))0 -
Dawne-Hope, OK, so I am busted on not drinking enough water. Although I did drink quite a few ounces, just have some camel in my genetic stock, it seems. And made up for lost ounces once I arrived. On the stroller, I can say for sure that my daughter and her husband invested in an amazing baby mobile, because it's feather light and super easy to push. I didn't find that hard at all, and I wasn't going for any speed. Despite all of that, yes, it's easy to succumb to doing too much, when we have all the right reasons for doing what we want to do and what we think we should do.
Today I've been marveling at MLD and how it really does work. Joe Zuther's Lymphedema Blog had a nice article about the science of MLD a while back, and I think I'm going to find that article and re-read it. I saw a study once that concluded that MLD is one of the less substantiated elements of complete decongestive therapy, but I really do wonder about that.
Carol
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Carol - when you find that article would you post it here? I'd like to read it. Thanks!
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Dawne-Hope, here is the article: http://www.lymphedemablog.com/2012/04/18/the-science-behind-manual-lymph-drainage-in-the-treatment-of-lymphedema/0
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I had a unimx 5 weeks ago. I have a swelling on my side under my arm. I am afraid it is LE. I have had LE in my ankles since I was 18 and really don't want any more. I have TE in place now. I hope that the exchange surgery does not cause even more problems.
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Carol - Thanks for the url to the blog. Good article. I purchased Dr. Vodder's book. Haven't started reading yet. I like anatomy and physiology so am looking forward to learning more about this 'thing' that has become a major component in my daily decisions.
My arm is doing fairly well, minimal hand swelling. Been getting all my water in and doing more steps. Trying to do Lebed more frequently - love the stretches.
The weather is cooling which is very nice. Rained all day but didn't have achiness - nice. Don't understand it - but I'll take it.
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Ohio, I'm glad someone likes anatomy and physiology! When you understand LE, I hope you'll explain it to me! Everytime I think I 'get' it, it does something different to remind me that I don't really.
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Interesting. The article says MLD should be followed by compression. Hmm.. I always do MLD at night and never wrap at night. Wondering if I have been wasting my time?
In order to prevent reaccumulation of the fluid evacuated from the extremity, it is necessary that the MLD treatment is followed up with compression, which depending on the stage of treatment, is applied either with specialized padded bandages or compression garments.
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Hey, good question! I will meet Joe Zuther at the NLN conference next week, I'm pretty sure. I'll try to remember to ask, if I have an opportunity.
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carol -Thank you for posting. I follow him on Facebook.
Re compression after mld...it's probably like everything else LE, we have to figure out and do whatever works for us.0 -
Thanks Carol, I just printed out that article.
The main thing we keep coming back to is that I am not stabilized. I'm just trying things and hope they work. And yes I have an LET. I need to have a firm conversation with her this week, and tell her "This is not working, figure it out."
One thing I've noticed, and I've not seen it posted here...ready?...I did a 20 minute meditation session, and my hand swelling went down! So, meditation, a piece of the puzzle?
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nibbana - it may be the deep breathing involved in meditation. Also I do know when I'm stressed my swelling is worse so it makes sense when we're calm and our heart rate goes down, it will lessen. Hmmmm...need to do it more often.
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nibbana, what a great observation! And Dawne-Hope, I think you're onto something with the 'why.' I need to try that. I learned Transcendental Meditation in umm...1975. I still remember my assigned mantra. Time to revisit my youth!
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Hi, guys, I am checking in before bed - and MLD. Such an interesting conversation. I have definitely noticed stress triggers swelling. We tend to breathe more shallowly when stressed, more from the chest vs belly. I took a 8 wk mindful meditation class after my initial surgeries, and I saw a difference in how I felt. Since then I started using my drawing as a form of meditation. In the beginning I used for pain control, but I noticed it also helped with stress and working through emotional issues/frustrations (like my stupid insurance co appeal!)
Dawne, I will second you on the MLD, but I wish I were more consistent. My therapist says that just doing the trunk makes a big difference, but she hates to say that because it's ideal to do the whole routine. Her point is if I am thinking of skipping, doing the trunk is much better than nothing. If you don't mind, can we talk more about your exercise during the flare? Are you saying you limited your exercise to the pool? Totally skipped walking and/or running? If it had been cooler, would you have continued to walk/run at all? I am curious to know how others handle this. The pool is definitely excellent for LE, especially during a flare, and you were really smart to use that as a tool. I am glad to hear you are back on track. I have also found that focusing on loss makes one feel frustrated, so it sounds you have a good mindset about this. Not that you're never frustrated by it, but you try and put it in perspective.
Carol, I noticed you had posted somewhere that your arm was aching all day but no swelling. I had planned to ask you if that was your "normal" feeling, as I am still trying to know what my "normal" feeling is. I consider frequent or constant achiness a sign that I am not completely under control. Well, with the exception of when I walk. I will swell a little, but if I stay hydrated before and after and do MLD later, by bedtime the swelling is usually gone. In the morning I am fine. This is not to say I don't have any swelling. I do occasionally, but if it responds and goes away after MLD and doesn't have that flare feeling, I consider myself "stable".0 -
Well, now I forgot to post my exercise today. It is hot, hot and humid again, but I was able to get out and walk once the sun started to set. I clocked 4 miles, total steps around 8700. I backed off the pace a little, as I was trying to minimize getting overheated. Still, I was sweating bullets by the time I was done. Came home and stretched, drank lots of water.
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Tina337 - I get an "F" in MLD consistency.
I don't know why I hate doing it so much ... I honestly don't think there has been one consecutive week that I've done it EVERY day. I used to think it didn't help ... but then when I did it and it alleviated the pain ... even though I was still swollen ... I realized it was at least doing something. I totally need to work on my consistency.As far as what I did during the flare ... I went to the pool 2-3x a week and did nothing but walk around in the shallow end and do my stretches that my therapists showed me to do. Most of the time I was only in the pool 20 minutes - 30 minutes max. I did absolutely no weight lifting ... the past year working up to 5lbs weights ... totally lost it ... did nothing weight wise for about 8 weeks. I went to the gym 2-3x a week and at the least I did 20 minutes on the treadmill ... but most of the time I did 20-30 minutes on the elliptical and then maybe 20-30 minutes on the incumbent bike.
So ... I guess to sum it up ... I did cardio only and at that ... only about 25% of what I had been doing prior to the flare. And I did that for about 8 weeks.
My trouble is ... that my fingers always swelled when I walked prior to BC ... so I have had a terrible time gauging what is swelling from a flare and and what is 'normal' for my body. I'm still figuring out what/how to do things. What sleeves work better for weight training vs. cardio ... it makes me crazy at times. I can wear my silverwave sleeve to walk in and do the bike ... but I need my juzo sleeve for any weight training. Too much compression when I do cardio alone tends to make my swelling worse ...
Still trying to figure out that part ...hope this helps ... at least a little. [[hugs]]
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OK, Tina337 - In honor of you tonight, I did the whole shabang, the whole shindig ... the whole MLD routine.
Most days I do the neck and trunk ... but not often enough do I do the whole thing. Did nothing cardio wise today. Tomorrow is my LiveStrong Day ... so I'll work out with my trainer ... he's been kicking my butt to help me get prepared for the race ... so I don't feel bad about having a rest day.
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Hi All--Interesting discussions.
Yesterday I did not do anything except walk around a lot at work. Luckily when I want to print something I have to walk a distance to the copy machine to get it. I printed one thing at a time and walked a lot. I always do MLD before bed and before putting on my night sleeve. I used to do it also upon awakening but as I seem somewhat stable right now I am only doing it once. I do the MLD exercises mid day as they can be done with the sleeve on. I even do them at work. Today I am working at home and will do treadmill and weights. Plus a lot of cleaning. I love to daydream and it is easy to do during MLD. I listen to books on CD on treadmill and weights. Sometimes I put on music during MLD.
Carol- I could never make a six hour car trip without stopping. I drink a lot of water on the way. If I had not stopped when I came up to LE Summit the group would never have had bourbon truffles! Plus I would not have let you pass up the ice cream store when hot outside! I was wondering since you got pain from the sleeve if you are sure it fits correctly? Maybe a custom would be better. I think you are already CC1 compression right? Just a thought. Once I had a correctly fitting sleeve the ache went away. As I lost weight and the sleeve became loose the achiness came back. It would go away again when I would get a new custom sleeve to fit my shrinking arm.
Tina--Way to go. Can't wait until I get up there!
Dawne--Wonder if the full MLD made a difference? Does the water seem to help?
Ohio--Let us know what you learn when you wade through the anatomy and physiology and give us a lay translation.
Have a good movement day everyone!
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Ok, here's a rough draft of a plan for mind fullness based MLD/meditation.
Find a quiet spot for MLD, like in bed before sleep. Begin with some abdominal breathing. If your mind starts to wander, bring it back to the breath.
Begin MLD, focusing on each stretch and release of the skin.
At the end of the MLD strokes, spend another 5-10 minutes focusing on the breath. If your mind wanders, gently bring it back to the breath.
While doing this, I can actually feel the sensation of lymph fluid moving!0 -
nibbana - Good for you! I've never had that sensation but I hope to some day!
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This is random and I'm not sure where to post so I'll just do it here.
For breakfast I eat cereal with milk every morning. I eat Kashi cereal. When I was diagnosed with BC I read all the stuff on anti-diary and I really tried to cut out dairly completely but I just can't. I like milk and cheese too much. I did, however, switch to organic only milk. Well ... this past week I ran out of cereal and money is super tight and months I had bought Kashi waffles on sale and stuck them in my freezer ... this week I pulled them and that's been my breakfast. I have noticed a substantial reduction in my swelling when I stopped having milk everyday. Obviously, I am NOT lactose intolerant but it has me wondering ... if milk could be a variable in my swelling. Last night I had a glass of milk before I went to bed ... and this morning my fingers were really fat?
Anyone else have a similar reaction to milk or thoughts? If drinking milk is going to have that much of a difference in my swelling ... I will cut it out. Maybe a glass a week but not everyday. Nothing else has changed in my routine or eating habits ... just the milk. ???
Also ... I think the MLD does better for me if I do it in the morning instead of at night.
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