Kicking LEs butt!! Exercise & Self Care Log
Comments
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Thanks, Carol! Good idea about the water spritzing! Even in 90% humidity, it does help!Tomorrow I see my LE therapist at 930, so I won't get my walk in before my appt. Hopefully I can do in later in the evening when it is cooler.
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Phoo, I feel like I am losing all the ground I gained. Plantar fasciitis has reared it's hideous head again and I haven't been in the pool this week....I am waiting for my nipple tattoos to heal---not a sentence I ever thought I would type! I found when hiking/walking last week that I was much stronger from my pool workouts. I had been running and exercising in the Y pool and hope to do that again next week.
Keep it up, glennie19! I would definitely wear the compression during your hot walks, especially if you are adding arm movements with poles. I know it can be miserable.
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Did not walk today as I had 9:30 appt with my LE therapist. She's been away due to a death in the family. She thinks I look great. No swelling, skin looks good. The Swell Spots are really helping!! I got some shoulder strengthening exercises to do. (How do I find time to do all the self-care I need???)
Since it was after 11 when I got home from the appt, I rode my stationary bike in front of the TV in my airconditioned living room. Yeah, wimpy,, but better than the noon heat, I suppose.
Jeannie, I've had plantar fasciitis before and it sucks. I hope you find some relief soon.
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today I walked to the neighbor's and let out the cats. But I was pressed for time so I only went there and back. That's only about 0.5 mile. Then I had my appt, then went to Sears to return something. Since I was at the mall, I figured: hey I'll walk the mall in the nice air conditioning. Two full circuits is 1.5 miles so I did that. So I actually got in 2 miles today, just not all at the same time!
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glennie, you are doing great! You're doing what you can, when you can, and isn't it great to know that you're being proactive in taming the LE beast? I really do believe that exercise helps.
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My fitbit says 5.5 miles today, much of which was errand running, but some very pleasant garden-work steps were in the mix, too. Not anything I'd call real cardio, but it was movement nonetheless.
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Hi! I'm new here and really am just jumping in. I was recently told I have Stage 0 lymphedema. Most troublesome areas are below my armpit which I noticed right away after surgery so am not sure if that's really lymphedema, but recently had slight swelling on my wrist and forearm. Then I noticed a "chunk" on my sternum that seemed like it just appeared one day. An ultrasound showed it as just fatty tissue, although I was told US doesn't show lymph fluid. Everyone says "interesting" when they see it. I was fitted for a sleeve to wear only during certain times, but it left marks on my wrist and my shoulder seemed like it swelled up afterwards. Hot and humid weather seem to make it worse, so does heavy outside work, and exposure to sun. I've seen several therapists and have been doing all the recommended stretches, but at one point had to cut back due to a frozen shoulder. An OT I saw last time finally helped me with a few exercises and showed me how to do the stroking massages on my arm and side. This is really yucky. If it weren't for all these little problems I would be able to forget I even had cancer. Any help is greatly appreciated.
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bc101....oh, rats! It does sound like LE, which one of our members' LE therapists describes as 'whack a mole,' because just when you think you've settled it down in one area, it can pop up in another. Every person reading your post will empathize with what you're describing! The good news is that you have an early diagnosis, so with some trial and error to figure out what works for YOU (emphasis on 'you' because although the treatments are standard, our lymph systems are not, and individual differences mean that we respond differently to the standard treatments).
If your sleeve leaves marks on your wrist and your shoulder swells afterward, that's probably telling you that the sleeve doesn't fit quite right. Also, did you get a gauntlet to wear on your hand? The gauntlet applies enough compression to the hand to prevent the fluid from moving downward into the hand, and I wonder if you have wrist swelling because you're not wearing hand compression and fluid is going in the wrong direction. The first fitter I went to for my sleeve put me into one that I later learned was much too big. Can you ask to try another brand of sleeve or a different size? If you got it through a durable medical equipment provider (DME) that does not specialize in fitting LE sleeves (that was my problem), you might call around to find a place that has a trained LE fitter. If it was the LE therapist, I hope he/she will be sympathetic to the need to try a different sleeve brand or size.
Another thought is to try using a compression T shirt. Lots of us wear UnderArmour men's compression fit T shirts under our regular clothing, although they're a bit hard to hide under a lot of our wardrobe. We like men's better than women's in that brand, because the women's shirts have cap sleeves that tend to cut into the armpit; the men's version has longer (but short) sleeves. If you're sensitive to the seams, wear it inside out. Typically we buy in a size smaller than our normal size, to make it really snug. I have to wiggle into mine, that's for sure. I wear the compression T when I'm particularly active, because like you, I have an area that tends to swell when I'm active and wearing my arm sleeve--in my case, on my back near my shoulder blade of all crazy places, and also under my armpit on my torso. The compression shirt helps prevent that.
Sun exposure can be dicey, that's for sure. Sunburn is a huge invitation for LE to get a lot worse, and the radiant heat from the sun--especially with the hot sleeve--raises the body temperature, and that's an irritant to LE, too. One strategy is to mist your sleeve with water, so you get some evaporative cooling. Some people feel they have been sunburned through the sleeve, although I have not had that experience and I'm super reluctant to put sunscreen chemicals under my sleeve (not sure why, but the idea bugs me). I do a lot of outdoor work in summer and I'm an avid kayaker (where sleeve is not optional). I tend to wear a large sunproof/bugproof but lightweight shirt over my compression sleeve/compression T shirt combo.
Welcome to our forum, and don't be reluctant to rant, because it feels sooooo good sometimes just to dump the LE frustration where everyone gets what you mean. But don't think that what we're all ranting about is your LE destiny. Some women here have horrid cases of LE, but not every case of LE evolves into that. It's frustrating and makes you crazy no matter if you are Stage 0 or more advanced, but I think you can hope that if you work on figuring out how to control your current symptoms, it may not progress much.
I'm sure others will leave you some insights. Take heart! And ask questions, because we have some real LE experts who post here.
Hugs!!
Carol
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Hi All! I have not logged in for awhile and have a lot of catching up to do. I have been quit busy with my local support group and as board member to get the Lymphedema Treatment Act passed. BUT I have been keeping up with exercise also. I have also taken up some hiking in the Smoky Mountains which is quite challenging. I was urged by my LE therapist to do so and she has taken me on several hikes to get me going. I do use trekking poles and it seems to help my arm and torso a lot. I do wear compression when exercising (well actually all of the time). The poles I bought are REI brand but I am on a site called Hike the Smokies and most there recommend LEKI. They are expensive but more durable than less expensive. Plus have spring support which is easier on arms. I burn more calories when using poles and they really help out on less impact on the knees. I think I would have sustained some falls if I had not had the poles to help me with balance while climbing up or down rocks.
bc101--Welcome! You will learn a lot and find a lot of support here!
I promise to log in more from now on.
Missed everyone!!
Becky
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Oh Carol, thanks so much! I have been obsessing over this for some time. I don't know why it has to be such a big mystery and so hard to find help. I'm very aware of what's going on with my body but it seems like the PT's I've been to have the attitude of well it's not bad (yet) and it's like I'm playing the waiting game. I already feel like a hypochondriac with my cancer, my shoulder and all these little problems "popping up" as you say.
I found a local specialist but she only works part time, so went to my cancer clinic which is 3 hours one way. Driving isn't good for my arm so that's not very helpful. I need to find someone else in between. This last time, though, I felt like someone finally listened to me and took the time to help with education and self help tips, including getting the sleeve, a gauntlet, and a compression camisole. I'll have to return or exchange the the sleeve and gauntlet. I'll try the UnderArmor. I don't like the camisole as it tends to ride up on my tummy (they will probably all do that, though - I need to lose weight).
Do any of you go to an OT regularly or just as needed? I suppose it depends.
One other thing to worry about is my exchange surgery is coming up. I'm sure surgery isn't very good for my LE even at this early stage.
I feel so alone and isolated with this, so I'm glad I found this thread. I'm very active outdoors during the summer since it only last 3 months here in MN, lol! So I'm out there gardening and raking, and I enjoy kayaking, too, although I'm not what you call an avid exerciser. I need to step up in that area as I'm pretty out of shape, so this thread will be good for me. I like to walk, ride my bike and I love to swim. But worrying about swelling and getting worse has sometimes kept me indoors away from all the sun and mosquitoes - they've been really vicious this year! Can anyone recommend an organic bug repellent?
Thanks again Carol! I'll try the tips you gave me - I just wish I didn't have to think about it so much!
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bc101, LE SUCKS!!! And you really have to work on finding what works best for YOU. My LE therapist has been helpful for MLD and exercises, and she got me in the right size sleeve. But the gang on this forum has been MOST HELPFUL with so many other suggestions. Swell Spots!! Breast Binders! I found out about them here. Most of my LE is truncal which no one seems to know what to do with. Arm, leg,, yeah,, they've seen it, but not truncal. Wearing swell spots inside my bra makes all the difference for me. Last night I wore the "breast" swell spot inside the breast binder while I slept, and wow,, no puffiness in the morning!
So these are things that work for me,,, but not necessarily for you. Keep reading around on this forum and asking questions and you will find help. Best of luck.
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Exercise to report: gym workout on Tuesday, and I'll do another one this afternoon, with a trainer working with weights. I tried the gym's very high-end rebounder (mini tramp) that uses bungee cords instead of springs, and so far, so good for the knee. I'm amazed at how easy it is to get the heart pumping by just jumping on that thing! I was worried about trying the rebounder after some helpful comments here, but I think the bungee cords do a good job of absorbing impact. My Fitbit doesn't do an accurate count of jumps/steps, but that's the least of my worries, as I'm dying to find a variety of cardio exercises that won't aggravate my knee issues.
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RE: BP and LE on 'good side"
(not sure where to post this so....)
Do ppl allow this frequently, and IF SO, any kind of follow up you can do ( cold compress or ???) to reduce any risks?I NEVER let them take my BP. It has been app 90/60 my whole life, and I see no reason ...nope, not even on the 'good arm'!
Went to DR today , and she insisisted so I said okay.92/60. I just feel vulnerable.
Anything ???
THXCAROL
How is the poison ivy ? I just read your post.Laurie
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Laurie, the poison ivy is making me crazy, nothing less. The initial breakout is no longer itchy, just a little rash that I expect to fade away. But more spots are cropping up! So I'm assuming that during the day of exposure, when I unknowingly had the p.i. oil on my hand, I touched some things that I picked up again in the next few days, not realizing the problem (toothbrush, doorknobs, who knows what?). And then touched my arm, my neck, my face. And so I've been washing surfaces like crazy. Also wondering if the dog got into the stuff, so he's been bathed, too. I have it on my LE arm, but oddly, wearing the sleeve helps reduce the itch. Wonder why?
I guess the good news is that it's taking my mind off my LE. Well, a little, anyway!
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Did you wear your sleeve during the initial exposure?
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Marple, no I did not. I was weeding, not doing anything particularly repetitive or strenuous, but I THOUGHT I was being cautious by wearing a long-sleeved shirt and two layers of gardening gloves. I knew I grabbed a piece of poison ivy and immediately scrubbed my gloved hands with a cleaner and then rinsed. That was probably my big mistake. I'm guessing that I emulsified the darn urushiol and it soaked through the outer glove (only its fingers are rubber coated), and the inner cotton glove. Next time I'll burn the darn gardening gloves! Live and learn. I'm watching my LE arm like a hawk, because the blisters have started to weep, and I guess that means there's an open pathway to below the skin. Yeesh.
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Ugh .... I've had poison ivy before although not with LE. I did the same thing - touched other parts of my body and it cropped up just about everywhere. It was just awful. Throw those gloves away! They say don't burn poison ivy or try to weedwack it - it will spray the oil around into the air. I use an old fashioned "weed wacker" that looks kind of like a golf club where you swing and cut it manually. Works pretty good.
I have lots of poison ivy up north at our cabin and try to avoid it like the plague. My hubby wants to use Round Up, but I won't let him.
I wish I had a magic potion for you. Hang in there!
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Carol,Hope you are better today. My Mom swears by that her PI gets better when she goes into the pool. Luckily I have never gotten it.
It is so hot here that I have been doing either the treadmill or elliptical at home. Driving me crazy. I am off to Florida next week and will be at a beach house so hope to get out on beach early am and late pm to tread the sand. I cannot wait until summer is over!
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Well, after the insufferably snowy, frozen, icy, frigid winter, I'll take whatever summer brings, poison ivy included. The heat is making it hard to be outdoors for some hours each afternoon, but fortunately here in Michigan the mornings and evenings have been a little less hot.
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Carol, I hope you heal quickly with no complications! It gets so tiring, worrying about everything. I put a bandage on my underarm with paper tape to lessen the pain from razor burn. (Electric razor) When I tore off the paper tape, some skin came with it! Ugh.
Purple, I have BP taken on my leg. It gives a higher reading but I don't care. They usually do it above my knee and listen behind my knee if done manually.
I have been doing a lot of gardening while nursing my plantar fasciitis. Next week I'll be back at the Y.
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Laurie, the poison ivy is making me crazy, nothing less.
I can certainly understand why, Carol!
You've worked so hard to keep your LE in check. You just don;'t need this worry.At this point, I would say to wear that darn sleeve then and just , ahem, be patient! I truly believe this will resolve wihout issue.
I understand what you are saying about the darn glove and can relate.When I was in PT for my knees, I was doing okay with the latex tape ( OVER another cover tape) and then one day, I decided to shower with it so it would come off easier. DOH! THAT was when the lates irritation flared. Of course ! I had hot water on "both tapes" and so the latex ' glue' went right into my legs. After that, they were super sensitive and the therapist refused to use it again. Too bad too because the knees were really ' tracking well' when taped.
sigh.
The silly things we do without thinking ... but whose mind can be "ON" every second ?!
Take Care.Don't srcratch :>)
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Purple, I have BP taken on my leg. It gives a higher reading but I don't care. They usually do it above my knee and listen behind my knee if done manually.
Really, Jeannie ?
And do you have LE on both sides or just one ?
Mine is uniltareral.
What about the rest of you ? Do you allow BP on ' the good side ?"
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I had bilateral mx, with sentinel node biopsy on my left side, where I have developed LE. I do allow BP on my right arm, although with the loss of nodes in the breast, I do have some LE risk. I know that some women have developed LE on a non-surgical side, even, but I've decided that after several years and no sign of trouble on that side, I'm ok with bps and needles there.
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hi, have not posted here of late but since ending my aromasin, my BP is way down from my old normal hi! But it is likely a combo of the med ending, the sinus surgery (I breath much better now) and the relaxation of retirement!
saw doc and she dropped the second med and said to watch if I feel faint and we will re evaluate in July at our next visit
concentrating on upping my swim laps
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proudtospin, that's a great, great report!
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yeah, I would really love to see the cholesterol drop as well but no such luck yet and hoping my July visit will show something
Monday is my yearly mamo so trying not to think on it much~~
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Good news, proud topspin!
Purple, I have bilateral LE, lots of nodes taken on cancer side (3 cancerous) and SNB on non-cancerous side.
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Carol-- that sucks with the poison ivy. You were smart to wash the dog. I got it off my dog once years ago! I laid my arm across his shoulders and that part of my arm got it!Purple-- I do allow needle sticks and BP's on the "good" side. So far,, it's been ok, but I've only had LE since March!
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Elliptical and arm bike at the Y as well as lots of watering of my garden.
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Wow, an arm bike at the Y? I've only seen those at PT. Cool!I've been walking every day, despite the heat! Not very long distances, but I'm being consistent about getting out there, so I figure that's something! And I have a resistance band/ light hand weight routine put together to help build up my shoulder strength. 3 times a week, and I'm logging it so I know when I miss. And I log doing Lebed and my walking every day. I'll only do it if I have to be accountable to something,, even if it is a piece of paper. So far,, it's working. Week 3.
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