GRRRRRRRRR I HATE LE..........
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If I can figure out how to post a link, I'll dig out the page of easy exercises I got from my LTPT and post.
One I do regularly is to touch my fingers to my shoulder then shoot my arm up rotating 180 degrees and clench my fist at the top & then back down. I learned to do this when I was sitting in airplanes. Now I do it when I walk - 10 one side, 10 the other, repeat. I'm sure people look at me like I'm nuts, but so....
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Cowgal - I live on a farm as well and am trying to get back to the level of physical work I did before. I am still able to heft up straw bales most days but cannot carry bags of feed etc anymore. I have to pick and choose what I can get accomplished in a day. I am glad you were able to get the flexitouch pump that thing has made such a difference for me personally. After the first treatment it was like a clog was removed from a drain somewhere.
ThreeTree not sure where you are but if you are close and need a cancer sister to help you let me know. I recognize the impact of the pain, lack of movement adding to your burden of unpacking those boxes. Its all a bit much. Sending you big hugs.
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Rah - I think I posted some months ago on another thread about all my boxes and you were so sympathetic and said you'd help if you were nearby. Once again, that is so very nice of you, and as I think I said the last time, I think we'd have a good time together doing it! Unfortunately, I am far away in the Puget Sound area on the west coast. (I always thought that someday I'd like to take a road trip through Kentucky and Tennessee though, as I have always had a feeling there would be lots of "pretty" to see.) My plan was that once I got into this new apartment I would sit on the couch in the evenings or whenever and go through boxes while watching TV; something like one or two a night. Then the movers put all the boxes rows deep and high right where I would have put the new couch I was planning to get, so no new couch now until I am able to move some of those boxes around. A lot of it is paper that I just have to go through and decide what to keep and not. I used to do some teaching and have a lot of teaching materials in those boxes, that I will never use again. Also got into genealogy and have lots on paper that I don't need, but there are a few gems of various kinds buried in all the stuff I don't need, so I'll just have to sit and sort at some point. I learned when I had people helping me pack up to move (and I tried to declutter some at that point) that so much of this I'll have to do on my own, because no one else will know which of all those papers I want to keep or not. Also, I'm terribly sentimental about stuff and all I have to do is see some piece of paper and all the memories start to flow (good and bad) and I break down and cry and wonder, "where has it all gone?!" I'm also way behind with work (working from home these days) and feel real guilty if I start to work on personal stuff instead of the work stuff. I'm strongly considering retiring, and feel bad that it is the cancer treatments and the Letrozole especially that seem to be "forcing" me into it. I'm still fighting that "force", but am beginning to think it's a losing battle.
Wow, straw bales! I grew up in suburbia, but we had some chickens and ducks when I was a kid and my dad would go to a feed store and bring back feed and straw bales for the coop he had built for them, and I loved that stuff, but that was the extent of my taste of "rural". I'm really a city girl, but wish there was a way we could all change out every few months. There is so much about all these different life styles that's good and bad and it would be nice be able to experience more than most of us get to in life.
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Rah2464 - I haven't been able to carry hay bales or bags of feed since my cancer recurrence in late 2019. Side effects from what I believe to have been from Faslodex pretty much had me crippled in 2020 where I had extreme back pain and sciatic nerve pain and barely could get around. I have made some accommodations to try to mitigate some of this and although still dealing with a lot of the issues am trying to work on getting some body strength back. I feel like such a slacker as my husband has to do most of the farm and ranch work and I basically do the easy chores. I agree that the Flexi-Touch felt like a clog was removed. My husband has noticed areas on my back that have been reduced and even thinks that my face is thinner.
ThreeTree - I completely understand that there are just some things people can't help you go through.
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Three Tree I like your idea of a Cancer club airbnb. It would be nice if Covid would lessen its grip and we could all travel around a bit and sit down together (here amongst my straw bales and with you amongst your boxes) and have a glass or two of wine.
Cowgal you are not a slacker you are doing what your body allows you to do. Glad the flexi touch is working well for you. It has been a life changer for me. I also just ordered a new garment from Wear Ease that is like a medium sleeve compression Tee that zips up the front AND has axillary pads in it. I think will be another weapon in my arsenal. I have discovered if I wear a compression bra and sleeve that I don't get a huge flare after doing more physical things like shoveling, lifting straw bales etc.
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I am currently having a flare up of my lymphedema and my hand is huge. This has always been a problem area for me. I had not needed to see a therapist in a couple of years. I wear custom sleves/gloves and jovipak at night. I will be going in to get measured for new garmets in about a week. I am using my flexitouch pump two times a day. I have seen the therapist twice now for massage. I am so frustrated. I wish I could quit work but I am too young for medicare as by the time I get home from work I am in terrible pain. Has anyone been able to get disability for lymphedema? The job I do makes it hard to wear a glove on my hand due to the frequent handwashing I have to do.
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Runnergirl26- Are you going for periods of time with your sleeve on but no glove? If so, that could definitely be causing your hand swelling. I could not get by with just a sleeve when I first started dealing with LE and first tried a glove. That did not work for my lifestyle either and I moved to a gauntlet, which still controls the swelling in my hand but also gives me more ability with my hand.
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Sorry about the flare RunnerGirl. I too use a gauntlet instead of a glove.
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Runnergirl - question about your flexitouch pump do you have both the top and bottom units? My LE massage therapist was of the opinion that if you have the top only not nearly as effective because you needed the massage therapy in the groin area to completely flush the toxins away. If you don't have the bottom piece might be worth a discussion. Sorry you are going through this intense flare up so frustrating.
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I wear a glove and sleeve. I can go for a short while without the glove but not long.
Has anyone had intensive compression bandage wrapping, where you are wrapped in multiple layers from finger tip to underarm? Did it work? How long did you do it for? I tried it twice to very little effect, but my arm is swelling again despite compression all day + night guard. Wondering if it is time to do it again.
Also do you do manual lymph massage on yourself? If so, when? Do you think it helps?
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Ruth I was doing daily lymph massage up until I got the pump. It helped some but wasn't nearly as effective as that flexitouch. I also dry brush daily just before I get into the shower to move lymph. I use a long handled moderately stiff brush I think I purchased at a Meijer grocery store. But if you are really swollen I would speak to your LE therapist first just to make sure they say safe to do.
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Thanks Rah2464
The people I go to are physiotherapists (trained in lymph massage) but only do massage and compression wrapping. They don't give me any other instructions which I find frustrating. I asked my oncologist for a referral to a lymph nurse at the hospital and hopefully she will give me some direction.
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ThreeTree - I've used the pump propped up in my bed working on my laptop. No recliner or tv needed!
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RuthATO I have had PT wrap my arm like that and they taught me how to do it. It is time consuming and I ususally get clostrophobic after about 24-36 hours and take it off. It did help though
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HomeMom - Thanks for the tip about using the pump in bed with a laptop. That's certainly something to consider.
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What do you guys wear at night? I have been using a Juzo wrap with velcro but the velcro no longer stays closed so I'm not sure how much benefit it gives. I think I need something more substantive.
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Ruth, I have been wearing a Solaris Tribute night garment for years. Mine zips up to make it easier to get on and off. I find it extremely helpful.
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I use the Tribute Night sleeve. It's custom made and not adjustable, but it has worked well for me for going on three years, two years for the first one, now on my second one. And they come in several fashion colors! LOL https://www.lohmann-rauscher.com/us-en/products/solaris-collection-by-lr/tributenight/
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I use nothing at night. Yet. I wonder if y’all are telling my future. I have a date with pump salesman tomorrow….
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Fortunately I don't use anything at night either. Good luck to all of you.
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My PT gave me a night sleeve that looks like a Tribute night sleeve. I do wrap the outside with a bandage up to the elbow because it's a little big.
Living in Florida, i've always used my flextouch pump with either short sleeves or sleeveless. The cold weather has been hanging around and I'm wearing more long sleeves. Does anyone who uses the flextouch put it on with long sleeves?
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Ruth, all of the compression garments have a “lifespan" on compression, which after that point it is recommended you get a new garment. For the Solaris Tribute night sleeve, it is one year. I've used mine past that a little bit and then used the old garment for a backup when I got a new one. If you like your current Juzo night sleeve and it is past it's lifespan, maybe just get a new one.
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HomeMom - I wear leggings and a thin long sleeve shirt when I do my pump. I just got it in November and the therapist that came to train me at my house said what I was wearing was good for pumping. She just said not to wear anything thick or that was binding
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Thank you cowgal, in FL you don't think about wearing sweaters most of the year.
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FYI - WearEase has free shipping this weekend - 1/29 & 1/30. Enter this code if you order.
Code: JANFS
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my LE therapist wondered about the compression level of the wear ease. Do you have any slecs
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NotAsCalm - They might have some numbers on their web site, but they have great customer service if you call. They do make several garments with varying levels of compression. I know my LEPT at MD Anderson was really excited to see the Sydney Bra that I wear 24/7 for mild breast & truncal LE. She said it came up high enough in the back & under the arms to give me decent coverage.
I do wear my 'heavy duty' Belisse bra when I fly - along with Jobst sleeves & gauntlets.
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ya, they’re ordering the belisse for me… and some jobst pad
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Hello anyone who's still reading this thread!! I'm slogging through all 900+ pages. I had a mastectomy, ALND, and lymphovenous bypass 10 months ago and up to now have avoided LE. Unfortunately I believe my luck has run out; I'm having some swelling in my right ring finger and a bit of puffiness on the underside of my forearm.
The swelling resolves with elevation in my arm, but that ring finger is stubborn... I haven't been able to wear a ring on that finger for over a month. I'm not scheduled for a doctor followup until August, but I'm going to call for a PT referral so I can get a proper MLD massage and learn how to wrap. I know I'm going to be the "Non-Compliant Queen" of LE... I have sensory processing issues and I'm afraid I won't be able to wear a sleeve or anything constricting (SPD). Sooooo, I hope I can manage my symptoms with MLD, exercise and elevation... and hopefully it will remain mild. Does anyone here manage their LE without "garments?" I have tried 4 different off-the-shelf sleeves and none of them fit right (using my measurements from a previous PT session.) I have those "grannie arms" where the upper arm is larger and my lower arm is normal... what the hell. So if the sleeve fits my upper arm the lower part is too loose. I dread the process and expense of custom sleeves because my insurance doesn't cover them... plus I'm afraid I'll never be able to wear them.
Well, I guess that's enough whining for today. I'm sure I'll have plenty more in the days to come!! Hope you all are doing well.
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lw - so sorry to hear about your swelling. Glad you're going to see an LEPT. I was amazed 7 years down the road from my last surgery how much a course of PT treatments with MLD helped last fall. She was able to break cording in my arm pit that I'd been living with forever and gave me several arm additional exercises that really help If I do them regularly - along with elevation. Most of my LE is truncal & breast. I've been fortunate that (so far) I haven't have to depend on wrapping. I do have sleeves & gauntlets, but I only wear them when I'm flying. The one thing I do wear is a mild compression bra. I have a 'heavy duty' Belisse Bra for when I fly. Otherwise I just use a Wear Ease Sydney bra, but I do keep one on on 24/7. It has a deep "V" neck so it doesn't show under most clothes, but does come up high under the arms and on the back - which my LEPT thought was important. Here's a link if you're interested. https://www.wearease.com/products/sydney-bra?varia... The company is woman owned and very good about answering questions. (No I don't have a vested interested - but often wish I did)
The best LEPT I ever had was at MD Anderson - Katy. She is now in charge of several locations and no longer doing a active treatment - but Joan is amazing if you ever run across her. In any case - best of luck and please do check back to let us know your progress.
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