Kicking LEs butt!! Exercise & Self Care Log
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I love how kinesio tape kept truncal down. Mind stays on for about four days and I shower with it on. I do try not to get it wet but it does dry fast.
Binneys right, YOU RELLY NEED TO KNOW how to apply this tape. I usually try to time my vacation car travel with an appointment and have le girl apply it so then I don't have to wear a compression tee to keep truncal down. She's sure knows how to lift the skin to be succcessful.
DO NOT PULL OFF THE TAPE or you will get a bad tape burn. Let itself work off and get someone to cut off dangly pieces. Mine was so stuck that I tried soaking off with olive oil and it didnt work for me. Then I tried soaking in the tub. Didn't budge it. Finally I gently and SLOWLY pulled it off but I was left with a burn not an allergy.Lesson learned. Maybe I had a really good brand that it stuck so good. Also I have dry skin and so it probably adhered better than oily. Oh yah that time that happened she used spray adhesive glue before tape.don't get that anymore but it's still tricky to get off.
My le girl learned how to tape a whole hand and arm and it looked so cool. Not sure if you need to wear compression garments over that area or not. I'd love to try for vacation. I'll talk to her.
I think we have a Ktape thread. Maybe I'll bump up.
Walked two hours. Not dropping weight much though this week. I'm on vaca and although I'm careful the nightly two glasses of champagne are too much caloriesfor me although it's a pretty low if it's dry.
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But remember Scottie's Mom,. ItFinally and Kansas - this tape needs to be applied by a trained professional. Please read what BInney & Hugz posted.
There are lots of things that can be tried, but I don't try then w/o discussing it with my LE/PT and then having her do it the first couple of times.
Hugz - I'd be interested in hearing the recommendation about vacation - and whether you still need compression on top of tape. The several times i was taped for breast & truncal, I did put my compression vest/bra back on over the tape.
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Thanks MinusTwo. . .I would go back to LE therapist first in any case.
Scottie
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thanks for the warning, and I absolutely would not dream of trying it on my own. Actually I'm probably not suited for it since I have skin issues that sometimes require daily topical medication. That's why I wondered if it was reuseable ... if it has to be removed and discarded, I doubt I could afford it. Just gathering info since I suppose I have truncal LE ... not entirely sure if that's accurate, but right now I swell below and especially above my scar, which goes all the way across.
75 minutes in pool. Went to try out the exercise machine and it's perfect - not a ton of resistance so mostly cardio, but hopefully it will be here tomorrow and I can add that. Basically planning to use it as a stationary bike at first. Massaging scar 3x/day. About to do MLD and re-wrap. Appt tomorrow.
The video is a bit different from what my CLT does, but I think I'll follow the video except that she said if I used a video NOT to route the lymph to "the good side" since I don't have one. And I can't remember if the video includes the deep breathing but she told me to do that, so I will. I don't think she intended me to do it alone yet (I'm going to follow the video, and I've watched it already too) but since I had to re-wrap because I had to wrap my hand after all, I'll just carefully follow the video
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Thank you for posting this video Binney! This is very clear and mirrors what my PT does.
I would love advice from anyone about how to make room in my life for all these extra things. I've gotten very good with sleeve/glove and wrapping my hand and arm every night. Recently got a night vest and that's going well also. (I look like I'm ready to jump out of plane, but...OK) It's just a lot of time to do the wrapping and rolling the bandages, and I know I need to get the MLD going too.
btw the kinesio tape worked for me (PT applied) but irritated my skin. PT said not to use it in this case.
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reflect, there are many brands of kenisiotape out there. If it worked for you, you might want to ask.your CLT to try another brand. For sports I like the tape by the Theraband company. See what CLT thinks.
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I wondered about time too. What's going to happen when I go back to work? I've added over an hour of exercise, want to add more. Half an hour or more to wrap, half an hour for MLD (how often? I hope once a day is sufficient), and just general other stuff taking up more time. It's like this is my life, and only so long I'm going to be willing for it to be such a focus.
Getting garments should speed up on wrapping. I'm hoping I'll soon be able to do MLD while watching TV or something. Right now I'm listening to podcasts etc while exercising so getting some extra benefit from it. Trying to streamline other responsibilities as much as possible but so far I'm not very successful. That's all I have figured out so far.
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Well, scar is loosened. Swelling above scar is WAY down. How that will eventually affect arm or if it will remains to be seen.
Bad news is that I need custom sleeve, and glove. Was hoping to order off the rack and avoid glove so this REALLY pushes up cost and I wasn't sure how to really swing the basic cost. I'm going to have to look for some way to help, since I barely worked all last school year and once school starts it will be some weeks before I can get paid, best case scenario. My CLT says they've looked for resources and have found none.
I may have to keep wrapping for a while. She's given me the option to start working on range of motion for now and I have a few days to decide. If we are not moving toward getting garments I suppose that's the likely course. Right now the swelling goes down with elevation or MLD so I'm in pretty good shape. I'd just like to keep it that way.
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it finallyhit, how about go fund me?
Where do you live? Is there a Gilda's club? What about a social worker at the hospital oncology unit?
Everytime I'm in my MO 's office this excessively cheerful social worker wants to talk. I do not need the resources, but I suspect some people do. They might be able to help.
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Itfinally, I'm sorry, I wasn't thinking about your being bilaterally affected. Here's the video for bilateral:
Definitely don't want to send fluid to the other side, so this matters.
The National Lymphedema Network has a garment fund, but your therapist must be an NLN affiliate. If she is, check it out:
https://www.lymphnet.org/patients/garment-fund
Hugs,
Binney
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I purchased the precut strips - then can cut to my needs. Not washable but some people wear for > a day.
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Kansas - sorry if I missed it, but why doesn't your LE/PT provide the Kinesio tape?
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thanks for the reply, Kansas, and the video, Binney. And the suggestions for affording, Binney and 2Fun.
I have a question. No swimming today. I need to get some things done around the house I've been working on for about a week. Moving things around. Small, light things, one or two pieces at a time, so it wasn't the weight. But I made many trips to garage (where it is sweltering) and back porch (sunshine Florida summer heat). I didn't mark the time, but after about an hour, my arm really started to hurt, and the swelling at the top of the wrap was terrible. I lay downand elevated my arm, tried to do MLD. Not enough improvement, just terrible pain from constriction of wrapping (wasn't too tight before) and I really hated to take it off since she just wrapped it, but I finally did. Arm is about 1/4" larger.
So ... this is useful info? Different people react differently, and I cannot have even that minor exertion in heat or perhaps time spent in heat? Do we watch and try to figure out our personal limitations? I should have paid closer attention. I'm fine doing stuff like that indoors.
Do I rewrap? I'm thinking I should do MLD and rewrap. It really hurts right now because I probably should have gotten it off sooner. I might just elevate.
Just wondering if my thinking is correct. These are probably pretty basic questions, but I'm just not sure of things yet. Thanks
BTW, I talked to my CLT later in the day to confirm costs. The custom glove is even worse than I thought. She's thinking to order a less-compressing sleeve so maybe I can get away with just custom sleeve and a gauntlet, which if I start with just one arm, I can put on a credit card, so even if I don't find anything else to help, I can try. But if it doesn't work, I won't be able to get the glove if I DO need it. Maybe in that case, I could just keep wrapping my fingers?
Edited to add ... amazing how good MLD feels!
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I can't answer what to do now & hope someone else will, but I can say -
you shouldn't be lifting more than ONE POUND until you get your LE under control. Then you start VERY SLOWLY and only build up gradually. Hugz can tell you better, but maybe don't graduate from one pound for an entire month. The average dining room chair is more than one lb. Most lamps are more than one lb. Yes, the heat didn't help, but probably 10 minutes would have been enough "moving" for one day. It's REALLY hard to learn to back off & shut it down when we've always done these things.
Why is it that you have to have a custom sleeve & glove? Length? Girth of the arm? I have a custom sleeve but OTC sleeves often work as well or better if the measurements were done by my LE/PT & not something I tried to measure myself. (or the clerk at Walgreens)
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thanks Minus,
I haven't rewrapped yet. I was actually down almost 3/4" from the swollen measurement after MLD and a little more rest and elevation. I feel MUCH better. I might just wait, swim in the morning, then wrap. She said I'm doing a good job of wrapping.
I wasn't lifting chairs and lamps though. A vase, a picture frame, a small pitcher or cup. One item in each hand. I doubt anything weighed more than a pound. VERY light work, more just walking into and out of the heat? Maybe carrying, placing items, etc.? But I normally do that kind of thing without swelling.
I need a custom sleeve because my upper arm has gotten pretty large, even before surgery and over the past year. My forearm is average, my wrist is quite small. She said if she ordered a sleeve to fit my upper arm, it would be two sizes too large for my lower arm and not provide any compression.
I guess I'm going to have to get used to what I can do. Ten minutes a day? I don't know. I guess I need a log and start getting into the details of this, because I'd HAVE to start building that up. I just can't imagine. I'm already so behind in getting things done
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Itfinally, 10 minutes at a time is more like it, not 10 minutes a day. Do an activity for 10 minutes, then switch it out and return to it later. I gave up crocheting because I HATED stopping after 10 minutes, but other activities work out okay. Like gardening, for instance--I can work at weeding for awhile, switch to watering or potting, then go back to weeding. Some projects, though, aren't as easy to switch, and crocheting is unfortunately one of those.
Heat is a trigger for me, for sure, so working like that outside would be problematic. I get up early in the summer so I can work outside comfortably (or at least relatively comfortably!) and plan indoor activities for later in the day.
I'd say dealing with LE is more a matter of strategizing than giving everything up. Not all bad, at that, since it means being better organized. But it sure is a huge life adjustment, and brava to you for the efforts you're making to take good care of YOU!!!
Gentle hugs,
Binney0 -
Yes, the key to everything is refined moderation and because I have lousy control in that end I have to keep reminding myself to rest, drink more water, pump fist, belly breath etc when labouring. Being independent not asking for help is my other downfall. But I'm learning slowly to take control on my workaholic personality and Im improving. I just think that getting a flare is no fun and that kinda stops me in my tracks most of the time.
No where did I read that we start off with one pound in our daily activities and move up once mastered. But that said, because I've done that at the gym(edited later: gradual weight starting with one pound as recommended by PAL program for le) I can lift better at home in my housework gardening etc. Key point is I'm building up to have better weight bearing abilities at home because of the gym.
It would make sense that the stronger you become at the gym, the stronger you are at home puttering around able to stave off a flare. For instance I have mastered the 8 pound jug of milk with no problem. BUT...I sure would not lift many out of the car at one time just because I can.dont forget there are other groceries that have to come out of the car to. It all adds up to tax our le system that's compromised.
I don't want to over load myself and never in REPEATIOUS mode when doing daily chores.It is all about balance to not cause a le flare.
Now that said. Wouldn't it be nice if one day I had a grandbabe that I could be able to hold in my arms and play even longer than I can now just because I am keeping up with my weight program. And wouldnt it be nice if I could pick them up as a toddler with no le problems. Right now I would have to be extra careful, maybe sitting with baby on my lap only.What a goal I have. Just need the babies and just need to keep working out!
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Hi all,
2FUN, good reminder to me about different types of tape to try. I feel like I should learn about all possible tx to add to my arsenal.
itfinallyhit..., you are doing an amazing job--and it is a job, isn't it? Re: cost of custom sleeves/trying off the shelf, etc. My experience so far makes me think there's a lot of trial and error in the fitting of these. I got a (really cool) lymphediva sleeve and gauntlet but PT thinks more compression is needed, however, I could wear the lymphediva one when not swollen so much. I just received a custom sleeve and glove and PT hasn't checked them yet, but the glove is not OK. 30 minutes in and thumb and index finger were numb so off it came. It gets sent back to be tweaked I think (hence the hefty price). Since glove is too tight, I'll wrap my hand when I wear sleeve. There's a lot of jiggling the handle is the bottom line. AND the insert w/these items said they need to be replaced in FOUR months. Wow. I am lucky, as I switched insurance during open enrollment at work, so I have coverage for these at 80% (after deductible). Do you have access to different insurance? Or do you have medicare? I've read (on BCO) some people have fought and gotten coverage from medicare. We need to get congress to pass the bill to get these covered!
My supplier (SunMed) does have different (lower) prices for private pay.
Custom sleeve: $265.22/156.01, Custom glove: $405.22/238.37, Custom Night Vest: $1834.15/1078.98. Compression bra (Not custom): $446.25/262.50.
Quite a challenge for a "side effect" of cancer treatment. Still a lot of money, which most of us do not have. A Go Fund Me page might be a good idea. Best to you!
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itfinally and reflect. I have custom glove and sleeve but I order my extra gloves from brightlifedirect.com. as I find having a extra glove handy for when one gets grimey or wet. Brightlife bends over backwards to help you measure and advice for off shelf products. They probably have a fourth July sale on. Most online stores do put garments on sale on major holidays. There prices are great compared to others. I think I paid 127 USA funds for my glove.
Once you get a custom garment you can ask for your measurements and call brightlie with them for other products.
I get the juzo with air vents on top of hand. Half the price of custom and it's compatible with my custom jobst sleeve Great for hot weather. When ordering the hand it must have same or more compression than arm not less to avoid fluid back up.
I also can get numb thumb no matter how hard we try to adjust this with my good fitter. Each time I get measured fitter gets a better fitting. I have almost the perfect fit so I keep the glove.
TO LESSEN NUMBNESS; put fat markers in fingers then air dry gloves. I find putting even on a low heat dryer they shrink more for me so I shy away from this. I handwash 99 percent of the time.
NO one should have to pay to have a illfitting glove. If mine is really bad it gets sent back at no cost as it's the fitters fault or manufacture. Timing is of essence though. Right away it needs to be sent back as they hsve a window where you can't sent back. It must be brand new looking and washed to go back. I recommend hand washing it so it doesn't snag or look overworn.
Back from vaca. I feel like I was at a fat farm exercising like crazy and eating right. But...only lost minimal. Last night scale said I only lost something like 4 oz. but this morn it was more like a pound. DH dieting to. He's mildly exercising eating like a horse and lost like 2-3 pound drinking beer and eating like a pig on vaca. NO STINKING FAIR. Dang it.
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Oh boy Hugz - that sure is NOT fair that DH can eat like that.
Thanks for posting about BrightLife. Yes, once you have valid measurements from your fitter, you can save a bunch of money.
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itfinallyhitme. . .we're all different, however, I was banned from any lifting initially after LE diagnosis and can still only lift up to about 5 lbs at a time since swelling up badly from my recent revision surgery.
Scottie
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it finally. There is a place that gives free compression garmentsbut it's not custom. Purple posted about 3-6 months ago. Search under her name and put in free sleeves.cant remember.
It may tye you over till you can get custom if they fit. They have extra wide at top and short length to!
I think they are lymphedivas brand.
Btw and for future use also,Josh is so helpful at lymphedivas
Scottie. Oh boy are you right. We are all different. Its kinda of a trial and error thing. But at least we can go on other people's experiences here instead of blundering through to see what and what doesn't work and then give it a whirl and test out the waters so to speak.
Minustwo DH in garden. Getting ready to eat huge meal tonight as he is so busy to stop for lunch. Well today I can say he did work off some calories however a six pack may be in order once he finishes. Off course he will weigh less tomorrow. Ugh. ME starving as I type. I've taken a exercise day off. Muscles need time off to
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Hugz - I know you started back with one pound. I was also told that a regular physical therapist after I broke my arm and then got a frozen shoulder from keeping the arm immobile for 6 weeks. That's also the same number that the Silver Sneakers classes for seniors recommend for people either recovering from an injury or just starting to exercise.
Yes, I agree. Muscles need a day off. My day will be tomorrow - if I don't go to Yoga.
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Hugs, thanks for the Brightlife link and also for the great suggestion about stretching the fingers with markers! I'll see PT next Friday and will get his input on fit of all these new things. I love the compression bras and my breast swelling is down a lot..almost gone. The new Jobst sleeve is great too I think and my arm measurements are at their lowest at 3 points on my arm.
DH has dug a "seat" in the creek for me to sit and have the water flow up my arms! Sounds nice, we'll see how effective it is.
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thank you, Binney!
I guess I didn't even think or plan clearly, but today worked out well and I see you are right. I ended up doing exactly that - maybe about ten minutes of activity, INDOORS, then resting. Repeat, repeat, repeat. About half the day not even wrapped (I kept putting off getting to the pool) and still I did just fine. I think yesterday's problem must have been heat. I'm going to have to stick to very early morning for outdoor stuff in summer, I guess. I hope, hope, hope I can get my flower borders in order and my plants repotted. I'm glad I did most of the potting before surgery.
1.5 hours in water today, concentrating on working my legs harder and arms less. I think I got a tiny bit of sun, which I tried to avoid, but midday pool is about half-shaded. Evening is safer. Massaging scar several times, it's slowly improving. Did MLD twice, once while in the pool, and once before wrapping. It seems it was a pretty good day.
I'm getting there, with everyone's help. Thank you all
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Good morning ladies- I'm still new here and trying to catch up. I have 4 compression sleeves (3 day and 1 night ) plus a glove. I was customers fit for the night sleeve. The day ones are pretty standard and come from Juzo. Insurance paid for all them. I did look online to get an extra one out of pocket. I found then for around $42 plus shipping. When I told my PT I was going to order another one she checked and my insurance allowed me 4 before July! So I ordered them!
I have 6 grandchildren so that is definitely a goal! My youngest grand daughter was born 4 weeks after my surgery. That's the only delivery my DD had that I was not there. Broke my heart! The 2 y/o grandson is 30 pounds so I always carry him on my "good side". I am a workaholic to so LE makes it hard!
Have a beautiful Sunday!
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reflect. What a sweet idea and DH for digging swim hole. Try to be over shoulders.
Itfinally. Now your in the groove. Feels good to figure out what works for you. I use a swim jacket made for pool to avoid burns. Landsend.com has a sun protection stretchy white and blue striped hoody with thumb hole to cover hands I also ordered that.it doesn't say it will tolerate Clorine but I'm sure it would work for a season or two. I tried my sis and it's perfect. Loves how it covers hands I rinsed out the clorine.
Minus I'm glad your silver sneakering it encourages me.
Varadoll. We would love it if you joined us. More the merrier.
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I found some men's Speedo T-shirts at Costco this year that block UPA and UVB rays for $12. Since the shirts are men's, it's wonderful to have sleeves that actually fall to the elbows or below instead of the silly little cap sleeves that women's shirts have. I wear them in water aerobics classes. They rinse out like a dream. I also found some Danskin tops that have a thumb hole & cover the hands. I have a friend that buys Underarmor shirts with sun protection embedded in the cloth.
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well I'm going to have to look for some of those sun protection tops if I want to get in the pool daytime. It's always been evening before so no problem. But the sun affected much worse than I realized at first - lesson definitely learned. Thank goodness it was cloudy, and I really tried to stay mostly in the shade. I'm sure 1.5 hours in the sun would cook me completely.
So no pool today. No appreciable exercise. I just went to Church, ran some errands. It was enough work that I'm in the choir - we sing much of the time for an hour and a half so lots of deep breathing. Hubby wanted a bag of charcoal and he got an 8# bag. He's really going to have to come with to buy charcoal, kitty litter, and animal food. I'm not willing to risk picking them up anymore. I should probably unwrap so I can do MLD but I've done trunk and shoulder anyway. I have appt tomorrow so I can discuss these things with CLT. I just hope I'm not appreciably swollen.
Still learning, but that's good too. I look back a couple of weeks ago and had no idea how to wrap or do MLD, and no real plan of action for dealing with this, so I'm pretty pleased to have made some progress.
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welcome, Vargadoll! I'm just getting started too. Great that your insurance covers several sets, and that you can buy them standard. You're starting out in a great position.
Good luck keeping up with the grands! I wondered about picking up littles, since they usually weigh a lot more than 8 pounds.
But my daughter is in college, so I'm between kids and grandkids (hopefully someday!) at this point. Thanks for all the info ON sunblocking clothing, everyone.
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