Kicking LEs butt!! Exercise & Self Care Log
Comments
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Interesting, nibbana . Thanks.
I had forgotten about the tai chi breather, hugz but I will try to think of it today ...promise :>)
Yesterday I did A.M. MLD, wore the sleeve, did groceries and just a little bit of Christmas shopping and wrapped 3 gifts. Did a 1 mile Sansone walk, but before bed, when I did the MLD, I believe I actiully skipped the entire part where you move the fluid in the arm !!! (YIKES!)
I dunno'. I am always exhausted, and I prefer to do it at night after I get ready for bed, when I can be half naked instead of fully clothed.
In a big rush this morning ( so why I am online ?!) so we will see how today goes.Have good one, all!
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Gonna do Lebed opening, good MLD, don the sleeve and head to the airport. Spending the week with family in Louisiana. My nephew is stationed there (Air Force) and has three kids. I think hugs are good LE exercise
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Sounds like everyone is rising to the challenge of committing to LE care and exercise during this crazy month! Having said that, yesterday I did none of the above. Like Nibbana, on weekends I often like to take a day off, and I had some fun activities with DH and friends yesterday, plus some holiday decorating. Hmm...that might well explain why my arm aches a good bit today! Today I'll be in the gym for certain and will be sure to do Lebed, some Tai Chi breathing, etc.
Ohio, I hope Little Martha enjoyed the flight(s) and was in good shape for all those hugs on arrival!
Carol
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Back is back in commission, almost 100%. Sleeping in the car in weird positions during road trips always does it to me. Out running errands today with my pedometer. Goal is 10,000 steps. If I can't get them walking, then I have to jog in house tonight. For the sake of my back, I believe I need to wait another day to do weights. The PAL coordinator called and I need to call back and do my three-month check-in for weight program. Ugh, I feel like I haven't been nearly as consistent as I planned. Trying not to berate myself because I know that sometimes life and swelling get in the way of weight training. It's part of living with LE, yes?? Please say yes!
Cindy, perhaps the increased amount of sitting at the hospital is cause of swelling? And STRESS, so if you were worried about your mother that could also be responsible. I try to remind myself to do extra deep breathing exercises during those times, as we tend to breathe more shallowly when stressed. Hope you are doing better today!
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Carol - as ambitious as you are about your exercise during the week, you deserve the weekends off
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Purple - on the issue of only wearing compression when exercising: When my Stage I arm LE was dx almost 4 years ago, my LET did the complete CDT. I saw her 5x the first week, then 3x a week for the next 3 weeks, then I had monthly appts for a while. She had me wrap 24/7 for the first week, then had me wear the sleeve/gauntlet daily and wrap at night, then I wore the sleeve/gauntlet daily for several weeks, wrapping every other night or as needed when I stressed the arm. She performed MLD on me every session, and measured and observed to see what was effective. She also designed an exercise program for me designed to help me build strength gradually, and taught me MLD. She also taught me what to watch for. Gradually under her guidance we found out what worked for me. Today most of the time my affected arm is no larger than my other arm except for occasional swelling at the very top. I wear my sleeve/gauntlet when working out and doing chores like raking, digging, snow shoveling, etc. but rarely have to wear it otherwise. But it was a slow, careful, incremental process in going from 24/7 compression to compression only when exercising. And I increase compression use at the first sign of any issue at all.
My truncal LE is another story (sigh) but at this point it appears that we've pretty much pushed back the arm to Stage 0 except for the very top, and even then the swelling there is minimal. I'm doing everything I can to keep it that way.
Still trying to be consistent with LE care. Ran 5 miles yesterday, doing the tai chi breathing as part of my warm up, but was too pooped to do Lebeds afterwards as I planned. Did MLD this morning plus 45 minutes of a Wii Fitness Coach exercise program, but no tai chi breathing or Lebeds yet.
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Tina - I'm sure the sitting around didn't do me any good, and the demon vending machines are full of salty snacks that are fatal for me. And I'm sure you're right about the stress.
Mom is doing better today, so hopefully we will be able to get back to something like normal.
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NatsFan,
You have a smart program. There's actually a lymphedema center near me that does a six hour workshop every quarter. Next class is Feb 9. I think I will register for the workshop, forget everything I know about this condition, then start all over. That and finding another LET.
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Purple - on the issue of only wearing compression when exercising: When my Stage I arm LE was dx almost 4 years ago, my LET did the complete CDT. I saw her 5x the first week, then 3x a week for the next 3 weeks, then I had monthly appts for a while. She had me wrap 24/7 for the first...."
How novel, natsfan!(tongue in cheek)You were very lucky - and I know it is committment and diligence that keep you stable. I do not discount that, believe me .
Well, I did A.M MLD , some tai chi breathers, wore sleeve and glove all day at work and took it off at 5 PM and did MLD.
I want to see how that works rather than keeping it on until I am feeling zonked and doing the MLD all wrong.
I have an appt with LE therpaist tomorrow. I have to say, I never imagined they would do all that for stage 1 natsfan , but at least do some MLD each session ( aaraaarghhh!) ooops, wrong thread! :>)
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It's part of living with LE, yes?? Please say yes!
YES, Tina!!!!
please------don't try to be perfect. You are a great model for all of us. Now don't go and ruin it by making it too hard for us!0 -
NatsFan, it sounds like you have had wonderful, comprehensive treatment from a truly qualified therapist, and of course, it's clear that you did your part to follow up and follow through on all the treatment regimens. You gave a great description of what quality care can look like, and I'm sure I'm not the only one who appreciates reading that!
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Today: 4.67 miles, including 30 minutes of 3-minute jogging intervals, with 2-minutes of 4.0 mph walking in between, on a treadmill. I also got in some good outdoor walking as I completed some errands and parked out on the fringes of various parking lots. Also 60 minutes of weightlifting with my trainer, and some ab and flexibility work thrown in to boot! Now: Lebed opening for the next fifteen minutes, before heading to bed. So a good LE/exercise day, but I didn't get much professional work done. It is so very hard to work it all in.
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Did more walking then I was able to do last week. We toured our building making lists of stuff that needs to be moved over Christmas break.
They are going to carpet and paint two floors of our library... that means we have a bunch of "stuff" to move. Must figure out how to get my share done without causing my le to blow up. I've never been able to stand by and watch others work, but ...
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Cindy, that is a very tough call. It helps no one if your LE blows up. I hope your colleagues are understanding, and that you can be creative about lending a genuine hand in ways that do not put you at risk.
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Thanks Carol. This time last year, I'd have had no hesitation in moving tables and chairs, book cases, carts full of books, computers and their componants... but this year? I know I'd be in trouble if I try to do too much. gah
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Cindy, Please,Please, please try and restrain yourself because it is not worth getting a flare. There are ones stronger and more healthy. Ask for help in a praising way ( you guy's are muscle men, look at those muscles bulge, I see your ready for the move!Girls you really know how to pack, you experts!)and they will be glad to accommodate. I can't lift stuff at work either, changing water bottle etc, and I always thank the gang more than enough for helping me. Maybe you can label the boxes or tape them shut but no extended repetition with that tape gun. I do other stuff they hate doing but am capable at it and it doesn't hurt my LE. Yes, like you I struggle being a Maverick, but am slowly learning to do less strenuous stuff.
Did all my tai chi breathers, walk and now Lebed opening, then bed. Where does the time go!0 -
Must figure out how to get my share done without causing my le to blow up. I've never been able to stand by and watch others work, but ...
Oh Cindy, I can so relate !
I am in charge of doing a Christmas party for 75 ppl. It is very very hectic and a lot of work. Once ayear I make it happen and then go home and collapse.I am literally the only person in charge. I just told my husband :" I dont even know how I'm going to carry the soda in, let alone pour 75 cups of it , not to mention a dozen other things and food , decos etc etc ..."
UGH.
However, refuse to let this get worse. I am going to have to find a way to get ppl to help. HATE the feeling that others might even *think* I am lazy.The MLD is getting to be a challenge to ' fit in" . Its either that OR exercise , and I want to do both. I cant get up any earlier or else I am just too tired at night and doze off in my sleeve . I dunno'. If I stayed offline I would have more time, but this is my support. Furthermore, I refuse to cut out every single thing that I enjoyed.
it's a challenge .
PS Carol, I am so jealous :>) - you go, girl !
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I'm down for the count - Just as I started feeling like maybe I can start getting this weight off my grandson gave me a flu bug... bronchitis and sinus infection from this virus... Ladies, flu shots sound good in retrospect... I can't even do my deep breathing, starting to swell - it hurts to wear sleeves... I'm kinda stuck between a rock and a hard place and have no clue what to do ... BTW I am now on antibiotics.
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carol and purple - designate, designate, designate - and you can explain why you can't "do it all". We're all under doctors restrictions to limit lifting to under 10 lbs, no repetitive stuff, etc.... I helped my son move a little over a year ago, and did too much lifting, even picking up grandkids with that arm is a bad idea - triggered swelling. It's not worth it, and if people think you're lazy, their problem, you know you aren't. Please take care of yourself!
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hmmm, a suggestion for when you need some nice strong arms to help you, this worked for me when I liven in B'lyn across the street from a Firehouse.....bribes, chocolate cookies worked every time
I believe they would help all sorts of ways if I payed them in cookies~~~
LE will stay good with cookies as pay!
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Linda, here's a commercial for weight training: IF your LE is stable before you start, and IF you follow PAL or similar safe-weight-lifting guidelines for LE, you can lift more than ten pounds with your arm (eventually, if you follow your program consistently and move the weight up gradually). Lots of IFs, and for some women, lifting always bothers their LE, so they cannot do it safely no matter how careful. But if you're able to train your arm and torso to take greater weight, you can get a good semblance of your pre-LE life back.
In in spite of saying all of that, for most people, moving the furniture, moving computers and monitors, hefting boxes of books--that's going to be more than we've been lifting in the gym, so of course ask for help and protect yourself.
But I sure want to be able to pick up my grandkids, and so far, I'm in the fortunate group for whom the PAL-safe weight lifting seems to be working well.
Carol
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Thanks Carol - where can I find more info on the PAL-safe weight lifting? I read about it a while ago, but ...... I have a hard time being consistent in my exercises, it's really easy for me to over-do, then I end up having to lay off for a bit. I'm working on at starting slowly and stopping when I have pain and/or tire. Hopefully, I can get this down before something else happens. All of you that do the exercises and Lebed seem to have an easier time controlling your LE. You are all in inspiration to me.
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Just now catching up on reading here. I have been caretaking for my Mom, finishing a semester (gave final last night), and have had no time for much else. Things are better now. I have kept up with the MLD, MLD exercises and weights and fairly good at cardio. Today I was able to go out to dam and log 7 miles.
Purple--It may be late from your post but I am weighing in. I was referred to a PT center that said they treated LE. I was wrapped but only from right above elbow to hand. No MLD, no skin care guidelines, and they did not "do garments". After 2 months and reading about what should be happening with CDT on this site I got a referral to a PT Center that had Certified Lymphedema Therapists-LANA. When I saw the new therapist on day one she told me I was still at Stage 2 and continued wrapping me 24/7 up to the armpit for a while longer. I saw her three days a week and she did an hour each day of MLD on me. Started me on an exercise program of mostly cardio at first. With her doing the MLD and me doing it on myself daily plus the exercises was incredible. We started in May last year and by October my measurements on my right arm were the same as my left. I have continued to be compliant though. She also recommended that I wear my sleeve and gauntlet (I started out with a glove) all day for at least a year plus I wear a jovipak at night. I see her now for fittings only--every 4 months. I am getting ready to wean myself off the day garments for a few hours at a time each day. I still have some difficulty with truncal (Natsfan's story sounded like mine) but MLD and a huge soft spot at night helps tremendously. Anyway a trained therapist makes all the difference in the world. I do have to travel some to get to her but totally worth it. I do wish all of us could have the proper care. Oh, she did start me on light weights a year ago--1 lb at first. Now I am doing the PAL program and am up to 10 lbs with no adverse side effects. I have lost 80 lbs and she thinks that had a lot to do with my LE getting better. Who knows what all works? It is individual....
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We started in May last year and by October my measurements on my right arm were the same as my left. I have continued to be compliant though.
That sure sounds great, Becky. Thanks for sharing. It really gives ppl. hope. I do think it is important to stress the compliance, and I totally undertsand that . We cannot put everything on our med. team. In the end, it is up to us. I agree completely, and am READY to be compliant . ( I'd just like some ' real tx' first!)
The PAL program sounds fabulous .
Between my job and everything, I really think I have to stick with a therapist that is very close by.0 -
hugz, great advice... sadly, we are a staff of 10 with 8 women, and 2 men most of whom are older and punier than I am, but yes, I'm going to voluntier for the fiddly little stuff, donut runs, and watching the service points and try to lay low when there's heavy stuff to move. I've always been the one who knew how to use power tools and the one that could figure out how to get that couch up the stairs... guess I'm going to be the one that points and suggests using a cart...
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Linda,
The formal PAL program is being offered under the guidance of the University of Pennsylvania, in the Philadelphia area. Several women in this forum are participating. The rest of us are pretty much on our own to find therapists and ideally, personal trainers, who are familiar with the PAL Protocol and can design a weight-lifting program that reflects its guidelines. The PAL research office has a handout that shows photos of the actual weight training moves they used while conducting their research over 18 months, but they give that document only to certified personal trainers and lymphedema therapists. Those individuals can request a copy here:
www.penncancer.org/physical-ac...
I think the UPenn folks are sometimes pretty slow to respond to those requests, because they're not really staffed to accomodate all the requests they get. Fortunately, a good personal trainer and most physical therapists should be able to customize a standard weight training program based on reading the original PAL research article, plus a follow-up article that lead researcher Dr. Kathryn Schmitz wrote for the NLN, clearing up misconceptions about the PAL Trial conclusions. Here are some links:
www.lymphnet.org/pdfDocs/PAL_N... .
www.lymphnet.org/pdfDocs/Weigh...
The second document I linked to is a very good read for patients, too, and I highly recommend it.
If you are considering starting a weightlifting program, please consider finding a personal trainer to get you started. Form is so important, and even without the worry about LE issues, if you have poor form, you can injure yourself, and who needs to add that on top of all our LE issues? Personal trainers can be expensive, but some cancer centers and some Y's give access that's free or at reduced cost for cancer survivors, so that may be a way to get some good help. Y's that participate in the LiveStrong program of exercise for cancer survivors get some PAL training for their instructors. I think they watch a 90 minute web seminar, so they should be familiar with the PAL guidelines.
Here are some highlights, to get a sense of what PAL is all about (and I am paraphrasing here, and adding my own comments, so PLEASE read the 'misconceptions' article at minimum):
--Make sure your LE is stable before you even think of starting a weight training program. Dr. Schmitz says that means no cellulitis that required antibiotics over the past three months, and no mroe than one LE flare that required CLT therapy in the past three months. No arm volume fluctuations of greater than 10% during the past three months.
--Start with very, very light weights and move up very, very slowly. I was lifting extensive weight prior to surgery, but when I returned to the gym afterward, I started with one pound dumbbells for my arms and other upper-body lifts. Talk about feeling silly...but LE is nothing to fool around with, so I gritted my teeth and decided who the heck cares what it looks like. Then I added weight slowly, meaning one pound per week, initially.
--Use dumbbells or other equipment with weights that are marked on them. Items such as soup cans are handy, but their weights are not standard, so they make it very difficult to know for sure you're adding to your lift load in small, measured increments. Also, for best form (and form matters, to avoid injuries, LE-related and otherwise), it's best to use dumbbells, for a better grip. One option is to purchase a set of power blocks that go as low as 1 lb. If you google it, you'll see what I'm talking about. That's what they're using in the PAL program in Philadelphia.
--Only progress to a higher weight after 2-4 sessions of doing the exercise with proper form and if there have been no changes in your LE symptoms.
--If you skip weight lifting for a week, back off the weight. If you skip for a month or longer, start over! Dr. Schmitz says in her article that the research team hypothesized that when LE got worse during the PAL trial, it was most likely because of irregular attendance at the exercise sessions. If you can't do this regularly, you risk injury (non-LE) and triggering a flare.
--Resistance bands are not a safe way to do strength training if you have or are at risk of LE, because you cannot know exactly how much resistance you add or subtract when you alter your hand placement or move to a more resistant band. One key tenet of the PAL Protocol is that they determined that women have the least chance of triggering LE (or making it worse if they already have it) when weight is added slowly and progressively, in small measured increments. Resistance bands are tempting because they're inexpensive and easy to store, and if you travel, they go right along with you. But--they invite more LE risk than relying on measured increments from dumbbells.
--And then there are those body-weight exercises, like planks for our abs and pushups for the pectoralis area. By now you can predict what I'm going to say--not such a good idea for us, because--you guessed it--impossible to say how much added resistance you get when you alter your position to make the move harder.
--This is not to say you NEVER use resistance bands or do push-ups, and even Dr. Schmitz has said it's possible...eventually. The idea is to build significant strength using the (broken record here, sorry) slow, progressive method with dumbbells. Then--and seriously only when you have a good long track record of adding your weights slowly--might you begin to add some bodyweight work--and that only if all through your program so far, you never triggered any LE symptoms (ache, heaviness, tingly, and of course, swelling).
--If you work with a trainer in a gym, you can certainly use weight machines, although it's harder to start with super-light weights. Make sure the trainer teaches you how to adjust the machines to your size, and make sure that you start with the lightest possible weight.
--Then there's the question of wearing compression while working out. Anyone who already has LE should be wearing a compression sleeve and hand compression (glove or gauntlet) while lifting weights, and probably while doing cardio work, too (because just raising your core body temp during cardio adds load to the lymphatic system, and then you add to the challenge by using arms for long, repetitive motion in some kinds of cardio work). The National Lymphedema Network says that whether to wear compression or not is a judgment call when you do not have LE--but are 'just' at risk. To make that decision, it's best to consult with a qualified LE therapist, generally a PT who is also a certified LE therapist, hopefully with the letters LANA after his/her name.
I'm killing you with info here, I know, but LE rots and we do what we can to avoid it, or to minimize flare-ups when we do have it. Resistance training can do a lot for us, LE and all, but as you can see from all these paragraphs, we have to take responsibility for doing it responsibly. I know it is working well for me--I'm up to 15-lb dumbbells for some lifts, and that's with a lot of backing off of weights when I have to miss for a week because of work travel. Considering I have to lift luggage regularly, being able to pick up 30 pounds with my arms is a necessity, so I for one am very grateful to the UPenn team for designing research that helps respond to the longtime advice not to lift more than 10 pounds.
Hope this helps!
Carol
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Carol,
I remember this was the first post you wrote me, the PAL guidelines. They are invaluable. I haven't followed them to a T, but for the most part I've stuck with the slow, gradual progression. For instance, I to four sessions with a certain weight, but then I might go from three to five pound dumbbells. Then I might go four sessions then go five to eight pounds. That much of a jump is a little chancy, but I can do it. What I wouldn't do is say "Ok, I've worked with five pound dumbbells, now it's time for push ups." That flare up time.
So this goes to show you, PAL works!
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Carol
Thanks for your detailed post. My therapist ( see grrrr thread!) told me today that I will probably never lift more than 1 lb due to other health conditions.
Whatever. I wouldnt try it now, but if this improves and stabilizes over time, I most certainly will. My brother has won the title Mr America over 50 and knows a bit about weightlifting. I have a feeling he could help me out. Never say never.
Tell me, did anyone else see this :http://www.thehaven.org.uk/sites/default/files/EJ%20Lymph%20at%20Risk1.pdf
Someone here posted a link today, and I followed it to this. It looks quite interesting. The only thing I question is that it is not saying ( or showing) that you should wear a sleeve during these exercises and they are presumably for LE pts.
Any comments/opinions ? They remind me a bit of Lebed in a way.
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Wow Carol, thanks for all the info, it will take me a while to get through it. It looks really interesting. My problem is sticking with it - seems my life is so hectic that me time has flown out the window even though I'm not working.
Purple those do look a lot like the Lebed exercises, my LE T gave me a paper like that w/o those exercises, explaining LE and what to watch for at my first visit. (Sorry, are you sure Oregon isn't an option?) And I just noticed the info on your brother - awesome!
Thanks again Carol!
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Carol, You are the exercise research guru and I thankyou for that!
UM.....................................................I've been bad................Ate tons of sweets for my main meals today...........Oh and for desert too..............Oh and for snack too! Then I rebelled and only did 3 tai chi breathers........Well... my excuse is that I was pooped as I was in appointments all day and the only thing that felt good was eating all those yummies...Lets see. ummmmmm, I confess to, 5 tarts and 3 soft chocolate chip cookies and a bowl of soup. Ok..... tomorrow exercise and today just didn't happen far as I am concerned!
THE REST OF YOU... GIVE ME 5 OF ANYTHING! except cookies.0
