Apr 3, 2012 11:51AM Tina337 wrote:
Suzy! You are so darn funny!!! Thank you for that belly laugh - you just helped move more lymph fluid! That is much more like my personal idea of retail therapy!
Posted on: Mar 7, 2012 05:32PM
Tina337 wrote:Let's use this thread to post the exercise and methods of self care we are practicing each day to keep our bodies strong and our LE at bay. After experiencing a flare in my arm when I hadn't been as diligent in caring for my truncal LE, I am motivated to begin exercising regularly, performing MLD daily, and wearing prescribed compression garments. Rather than fall down on the job and become overwhelmed by this chronic condition, I want to challenge myself to kick LE's butt into a small, manageable corner! I started today. Here's what I did.
Posts 271 - 300 (7,044 total)
Apr 3, 2012 11:51AM Tina337 wrote:
Suzy! You are so darn funny!!! Thank you for that belly laugh - you just helped move more lymph fluid! That is much more like my personal idea of retail therapy!
Apr 3, 2012 12:52PM Tina337 wrote:
Carol, after you mentioned the Johnny Jump-Up, I remembered loving my Hoppity Hop as a kid. Thought I would check YouTube for a video, and, oh, my word! We are behind the curve! Perhaps it is possible to do the Hulk while bouncing. We just need to modify the green jumpsuits!
I wonder if bouncing like this is just as beneficial as using a regular exercise ball? I bet you can tilt the handles away from you if you want to do stationary bouncing with your arms straight above your head.
I don't know how to make this a direct link with my iPad, so could someone fix this for me, please!
Apr 3, 2012 12:52PM Estel wrote:
You all are doing great!
Today ... I am the bug ... but the day isn't over so maybe by tonight I'll have squashed the bug.
I know the reason ... Mondays are 4 hours in the car driving days ... so that never helps ... especially after a stressful weekend.
Yesterday I did my stretches and MLD before bed but I'm pretty swollen today. Plan of action is to do some ball bounces, Lebed opening, some cardio with compression ... there are storms coming too which always make me swell ... bug or windshield? I'll check back in tonight and let you all know. :)
Apr 3, 2012 01:14PM Tina337 wrote:
Dawne, the long car ride after a stressful weekend and a brewing storm is a lousy combination. Sounds like you have a good plan of action, though, and I hope you feel better later today.
Apr 3, 2012 05:09PM carol57 wrote:
Becky, how frightening that your house had high CO2. A monitor is a life saver and I'm so glad you caught this on returning to the house. Aside from that scare, it sounds like you are staying in motion and having fun doing it, so you must be windshielding this week.
I had a pretty good day, ending the workday with a one-hour walk that included a couple of miles on a riverwalk and a pretty steep hill, which certainly got my heart's attention when I had to climb it on the way back from the river. All told, I logged 5.6 miles today. I'll confess to feeling pooped now!
I'm crabby too, because at my LE therapist's suggestion, I was measured for a bra and worked with the lingerie shop owner to find one with particular support in a spot on one noob that pools with fluid. I wore it yesterday and thought it made the problem worse, but today I tried again, doing a good bit of bend/wiggle/shake when putting it on, to try to position that girl just right. Didn't help, and when I changed into walking clothing, I was not at all happy with the outcome. Good thing I brought a second bra I can switch to. I fear this means I'm headed for a custom bra, and that saddens me, because of both the process and expense to go through to get one, and the image I have that these things are basically torture devices. Please, someone tell me that a prescription compression bra doesn't have to strap you in like you're going to hang from a parachute!
On all other fronts, it has been a great day; the walk was beautiful in very pleasant weather, so good feelings outweight complaints for sure. And Tina, I cannot believe it has been a month since you started this! I am sure that had you not initiated this community, there are days I would have skipped exercise, MLD, etc., but reporting in to everyone here saved me from myself! Thank you for getting us going.
Apr 3, 2012 05:56PM Tina337 wrote:How did I miss that part of Becky's post? Glad everything is resolved, but that must have been frightening.
Apr 3, 2012 08:14PM justmejanis wrote:
Well, I went to the fitter today and she had all kinds of goodies for me. I got two sets of LE sleeves with gauntlets. She got approval for two bras for me, and a new "Foam Sleeve" for sleeping. She measured me for bras and I found out I have been buying the wrong size for years. I always thought I was a C cup, but I am a D, and the BC breast is DD! I got a silicone "implant" to put in the sleeve of the new bras, for now it goes on my good side. My BC and LE are on my right, dominant side. I got bras that were in stock, tried on a few and these were pretty with a little lace on top. They look like normal bras. Exciting stuff! I got a black and a white one. My least favorite thing is the Foam Sleeve. I am supposed to wear it to bed, and the thing looks like a shotgun case! OMG it is huge and clunky. It came with yet another sleeve over top more more compression. That is a leopard pattern. You really cannot hide the big ugly thing under it LOL. I hope i can wear it. I sleep so terribly hot and of course my new night sweats don't help one bit.
So it was a good day as far as qualifing for the garments I got today. I did also walk my dogs twice, not real far but about 20-25 minutes each walk. Baby steps. I was pretty good with my eating too. I am trying.
Thanks all for the welcomes and encouragement! :)
Apr 3, 2012 11:04PM hugz4u wrote:
Janis- wow that is nice you got 2 sets of gloves/sleeves. one in wash and one on you!
Just watch the bras are not too tight around. Watch for any tenderness while you wear them and check for any indentations when you take them off. If so they are tight and can trap lymph.
Love the shotgun case joke! it is so true. I don't have one yet but my jovipak day sleeve looks similar.I think Binney and some girls put the night foam sleeve in the fridge/freezer to keep it cool in the summer. Ask your night sleeve provider if you can do this.
For the night sweats I went to costco and got a mens huge running tee shirt made with coolmax in it. It was under 20 bucks. When you sweat in it it drys pretty fast and ready for the next sweat off. I had 2 but thank goodness I am over that phase.
Janis, you have motivated me with your dog walks. It is 10pm here and I am going straight to the lebed DVD and going to do my thing! Thanks for the encouragement. It was so rainy on the west coast today that I skipped my walk. Yikes!
Apr 3, 2012 11:51PM Tina337 wrote:Justmejanis, what a terrific day! Congrats on qualifying for all of your garments. It's wonderful you could bring everything home, too. And bras that are pretty? Love it. What a great start - dog walking definitely counts. I look forward to hearing more about your foam sleeve for sleeping.
Apr 4, 2012 08:33AM Binney4 wrote:
Janis, what a bonanza! (Though it is sorta pathetic what we get excited about these days, isn't it? Only another lympher could understand!)
Can't wait for a report on last night's first experience sleeping with the shotgun case. Leopard print oversleeve, huh? Very sexy--NOT! <sigh!> Keep us posted on how all the new goodies fit.
Hugz, brilliant idea on the coolmax men's shirt! Those coolmax nighties are priced like ball gowns. (On the other hand, they don't look like ultra-large men's t-shirts, but hey!)
Tina, DH was the right person to send for the job, obviously -- perfect! Huge load off your mind, yes? (Not entirely, of course, but for the moment anyway...)
Carol, short of a custom vest/bra, what else have you tried? What kind of custom bra is she suggesting?
I topped 10,000 steps yesterday -- yes! 10,377 to be exact (well, as exact as the pedometer is, anyway). Especially good because trying to add steps breaks up the time I sit at the computer, and that's a good thing--it's always hard for me to change activities and take a break, but counting steps made it motivating. Also did a lot of dog training (when I don't wear the pedometer because my pedometer pocket is stuffed with dog kibble), so I'm glowing with pride and hope I can repeat the feat today. It's hard to be consistent because...well, life distracts, y'know?
Hugs all around,
Apr 4, 2012 09:27AM justmejanis wrote:
Hugz......thank you for the bra advice. Hoping because she measured it and she is a certified fitter, she got the size right. I will keep any eye on myself for any trouble spots.
I slept in the Foam Sleeve last night and it was not too bad. When you first put it on it feels strange, like a huge oven mitt that goes to the shoulder. It does not cover the fingers or thumb which is good. I have to bend this arm to sleep and had no problem despite thinking it would not work. It is not hot here yet so I did fine. So glad I motivated you to exercise. Me? LOL. Well good girl! It takes a lot of motivation to do this. I am going to stick to walks for now.
Tina that is great you are exercising. I really need to find out more information on good exercies. I did not get a chance to read all the links Binney provided. I will eventually. I admire everyone who can stick to an exercise plan. Great job ladies!!
Apr 4, 2012 11:22AM hugz4u wrote:
Soooo..it's sunny and my new tenant got a dog and will let me walk him. No excuses any more. Now I have a permanent walking buddy. Too bad they don't allow dogs on the beach boardwalk where I usually do my favourite walk though.Grrrr. Still a walk,s a walk. Now where did I put that darn pedometer?
Oh, by the way. I can hear all the way from here that your dogs are calling you for a walk too!
Janis, Your homework today is to go and get the leash and you know the rest..Bow wow.
Apr 4, 2012 04:40PM carol57 wrote:
Binney, way to go on 10,000+ steps! And really more, because you worked with the dogs without the pedometer. Hugz, borrowing a dog is masterful, but it is sad when dogs are not allowed on a beach because some people have ruined that fun by not cleaning up after their pooches. We love to take our dog to places where he can run like the wind, but those are hard to find, because so many of our beautiful beaches and parks either prohibit dogs or require them to be on a six-foot leash.
Janis, good luck sleeping with a contraption attached to your arm. I would have a hard time with that. So far I have never needed night time compression, and I think I would have a difficult time adjusting.
Tina, you are clearly married to a saint! Lucky, lucky Tina!
Binney, on my bra issues, it's not that my therapist suggested a custom bra, I'm just wondering if that's an inevitable step. I need to find a way to put pressure on one breast, pressing in from the midline between the breasts, and up from under the breast. The bra I had professionally fitted seemed at first to take care of that, but apparently after some time wearing the bra, the separator panel between the cups forms a bridge between the breasts instead of holding them separate. So, no pressure from the midline. My LE therapist thought a well fitted bra, replacing the softer, more elastic ones I had been wearing, would provide the needed support to prevent fluid pooling near that centerline. It did not work, so back to the drawing board. Is there a 'J' shaped swell spot that can go into a bra, and if so, does it stay in place, or is a custom bra needed to hold it still?
LE sure does feel like one long and expensive trial-and-error treatment program.
Apr 4, 2012 05:03PM Binney4 wrote:
Carol, try two swell spots. They stay pretty well, or you can pin them. You might want to PM OneBadBoob/Jane, because that's her problem area too and she's got it under control with assorted swell spots.
Okay, what I was trying to say earlier without actually saying it is: before you order a custom chest compression garment, do check in here, because the general run of experiences with the custom chest stuff is, uh, not real positive. If you ask me, it would not be an insurmountable problem for some compression garment company to come up with great design ideas in a lovely fabric that can address the various problem areas we have with truncal LE. (But then, nobody's asking me, are they?!)
The issue you're talking about where the panel between the cups forms a bridge is, cleverly enough, actually called "bridging." It's difficult to address, but it shouldn't be impossible, and smooshing everything together into one unattractive "loaf" shouldn't be necessary either. Cleavage, you garment designer people!!!
Nevermind, they'll get around to it one of these days, if only because we all keep after them. Together we can make a difference! (Hmmm, is there an echo in here?)
Apr 4, 2012 05:09PM carol57 wrote:
Binney, thanks, and now a dumb question: Can I order swell spots from an online source, or do I need to pay my LE therapist for an appointment to do some kind of measurement and document the visit so she can write a prescription? I have to pay for the 'equipment' regardless as I am quite unlikely to meet insurance deductible this year, and for all I know, insurance doesn't cover these things anyway.
Apr 4, 2012 05:28PM Binney4 wrote:
Carol, I've never tried getting a Rx for these and billing them to insurance, but it would be worth a try, as at least they'd apply to your deductable, yes? Can you get your onc's office to send you a Rx? I don't make special appointments for them because the doctor and his troop of nurses don't have a clue what to suggest, they just prescribe what I ask for.
You could ask your therapist about other options as well, that you can cut to shape yourself from a sheet. I use "chocolate bars" sometimes, when I need something more aggressive than a Swell Spot. There's "spaghetti foam" too. The sheets of these products are expensive, but since you cut smallish pieces of them one sheet could last years.
You can buy everything online. Look over the Solaris site (and you could check the JoviPak site too, if you don't mind searching through their stupid "bubble" homepage) and decide what you want and then go comparison shopping at the various LE suppliers. Don't you wish we could shop at an LE store in person? We'd be able to spot exactly what we needed, y'know?
Apr 4, 2012 09:28PM carol57 wrote:
Thank you again, Binney. I'll work on this. My therapist is lovely, and she has helped me quite a bit, but she's not good at all about returning calls or responding to email. She is spread very thin, so I guess that's the part of her job that suffers.
For today's LE care, I can report that I began with some abbreviated MLD, and I will in a few moments end my day with a longer, slower MLD session.
As for exercise, I can happily report that I did...nothing! After work today I relocated to an airport hotel, in preparation for a super early flight home in the morning, and then -- the reason I can HAPPILY say that I skipped my usual evening walk--I had dinner and a 4-hour chat with...Tina337!!!!!! This week I have been working in a city not far from Tina's home, so we arranged to meet.
We had a wonderful chance to swap LE experiences and more important, to get to know a bit about each others' lives outside LE. Tina showed me her portfolio of drawings, including the one that she uses as her avatar. Simply gorgeous images that are full of vibrant color and movement!
So, we exercised our jawbones, and boy did we get a lot of miles in that way.
How wonderful it is when something as crappy as LE can become a stepping stone to friendships we would not otherwise have chanced upon.
Apr 4, 2012 11:13PM Tina337 wrote:Carol, you summarized the evening well, and I don't have much to add, except to say that my jawbone is exhausted! I had a wonderful time, and it was a pleasure to meet you. When I arrived home, I changed into my workout clothes and did 500 steps . . . Did I have you going for a minute?
Apr 5, 2012 06:04AM BeckySharp wrote:
Oh, I am jealous Tina and Carol got to meet in person! That is great.
For two days I have only done my two MLDs, Lebeds and NOTHING--except sightsee and walk around with my company. They leave today but later and I have a support group meeting to attend. I will be back in full force tomorrow! I can feel the lack of or decrease in cardio with lethargy.
Binney--Great on the 10,000 steps. What is the magic number to make it a habit? 3, 10, 13? Only one time to break it. Maybe we should just all try for a daily target of 10,000. Easier said than done.
Janis-I wear a jovipak at night that sounds a lot like your foam sleeve. Mine goes all the way to my fingertips and is one piece. I was so sure it would never bend but it does. My mother calls it my giant potholder. If and when my therapist says I can go one night without wearing it I think I will be lost.
Carol-I got a Solaris breast swell spot from Bandages Plus. My therapist asked the fitter she sends my measurements to about it and they said insurance would not pay for it. I would have liked the jovipak one but it was really expensive. It did have a flow down to the groin also as Solaris did not. As you say trial and error. I wear mine at night and it helps tremendously. My prosthesis seems to help the swelling in the daytime.
I may need to get a dog since all of you seem to have one or more.
Apr 5, 2012 10:17AM Tina337 wrote:Becky, I am looking forward to meeting you this summer in Knoxville. I really wish I could meet all of you in person. Wouldn't it be wonderful if we could have a big gathering in a central location?
Apr 5, 2012 02:43PM carol57 wrote:
Becky, I suspect you got more of a workout than you realize, walking with your visitors. I believe that the feel-good moments after exercising helps tremendously to get us back on track, so long as we don't skip exercise so much that we're sore instead of feeling good afterward!
Today I skipped morning MLD--up at 4:45 for an early flight, and somehow setting the alarm even earlier just was too much to bear. I'll play catch up tonight. I had a flight delay that gifted me with a 3-hour layover, so I used the time to walk. I did one hour of very speedy walking, fast enough to raise my heartrate, and then another 40 minutes or so at a more leisurely pace. I have about 6.5 miles on my pedometer so far today and will be strolling around beautiful Holland, Michigan this evening with DH!
I've been looking at all the 'devices' on the Bandages Plus website, and they don't give dimensions (how helpful is that?) for the swell spots and similar items. I'll need to invest more time as Binney suggests, looking at the manufacturers' websites to decide what looks like it might work, and then shopping for it online. Or--have any of you sewn any DIY swell spots? The photos suggest these are not complicated devices. What is in them?
I also am considering getting the Wear Ease Slimmer cami, and I have a question about that, too. Is it comfortable wearing over a bra (so I can get the cup support I need)? Or is the compression configured so that the chest area functions much as a bra would, and I could tuck the needed swell spot(s) in the cami and they would stay put? I know our fitness group includes of mix of those of us who did recon and those who did not, and some who wear protheses and some who do not (my, we are a diverse group!). So perhaps someone in the wears-a-bra group has an opinion about the Wear Ease Slimmer over a bra (or not to wear the bra).
I did just speak with my LE therapist, who must have ESP because she called me to follow up on this very topic from our last visit--calling just as I was typing this post. She suggests trying to insert some of the Komprex shapes into my bra to add some support from the midline inward. Anyone have an opinion on Komprex?
Thanks for any and all advice--
Apr 5, 2012 04:48PM - edited Apr 5, 2012 04:53PM by Binney4
I have a small piece of a Komprex II sheet my therapist gave me (the whole thing is around $60, so you might want to go together with another lympher to buy a sheet and split it). www.lymphedemaproducts.com/pro...
It's a good thing, just have to be careful to set it in the proper dirtection so the ridges act like directional stitching, and wear the soft side against your skin. Anything made of foam can cause skin irritation if it's directly on the skin, so I wrap my foam shape thingys in a bit of stockinette.
Swell Spots (and night garments) are stuffed with medical grade chipped foam pieces, which you can buy by the bag at places like Bandages Plus:
Lots of therapists stitch up their own swell-spot-like items for specific applications. (And appropriately enough, they call them "chip bags".) So can you. Faux doe-skin fabric is nice, or any fabric that feels soft and very pliable against your skin (and since we're talking about very small quantities needed, the price-per-yard isn't much of an issue). You might want to check your design with your therapist so you're certain the directional stitching goes in the right direction for the intended area.
Do let us know what you come up with!
Apr 5, 2012 05:12PM justmejanis wrote:
Hi ladies! I am behind as always. The last couple of days I have been pretty busy so have not had time to get back here.
Carol,all this talk of garments to me is just overwhelming! My LE therapist has never mentioned wearing vests or any such garments. She is fine with what I currently have. I wear the compression bras and they really seem to help the most. I did get two new bras on Tuesday as well as the giant BBQ mitt. LOL, that is what it reminds me of. Becky, your mom is spot on with the giant potholder comment! It is bulky but not as uncomfortable as I thought. So far I can sleep with it on. Binney, thought you would like to know that. It is designed to replace bandaging. I have a friend who still has to wrap every night and the giant potholder just slides right on. Easy button for sure.
I have to admit to feeling guilty at not sticking to any kind of exercise program. I do my self massage every morning but have not been as loyal about my stretching. I am the worst at getting focused lately and I wish I knew why. I have always been a very organized person and these past months have been terrible.
Today we bathed our dogs and that is a workout in itself. Lots of bending.....and the blow drying takes forever. We have two Golden Retrievers and they are a lot of maintenance. They hate being bathed so we always meet with resistance from them. They aren't awful, but it is not their favorite thing to do. It takes a good 25-35 minutes to blow dry them and so I got some kind of workout at least.
Carol and Tina....how awesome you were able to meet in person. That is wonderful! I would love to meet some of my BC sisters. It sounds like you had a great time.
Hugs to all of you!
Apr 5, 2012 05:28PM Binney4 wrote:
Janis, how funny! It must be National Golden Washday! We have two Golden doodles who got their baths today too. They don't mind the tub, but you can practically see them rolling their eyes about the drying--really cramps their style. The end result is heavenly, though--soft and gorgeous and they smell just wonderful. Anyway, I can testify that bathing two big dogs is definitely a workout, so shed the guilt!
Carol and Tina, how wonderful! Consider us all right there with you!
Hugs all around,
Apr 5, 2012 07:03PM hugz4u wrote:
Was just so excited that Carol and Tina met. Sounds like you really had jaws a flappin. Count that as a workout for sure. Well I did it. I walked a hour and a half with dog yesterday. But today, me no exercise at all!
On a better note. I am going to a beach cabin for a few days and will definately be walking so you might not hear from me but I will be sweating up a storm and be thinking of all you LE butt kickers.
Yes, I think a dog was is definately exercise. I bet some of you have sore quads from going up and down with the shampoo. Be careful to not tired your LE arms out though. Did someone say Goldendoodles, cause my ears perked up. I want a mini one soooooo bad. I dream Goldendoodles.
Apr 5, 2012 07:47PM Binney4 wrote:Hugz, that must be a very cute dream! They have all the appeal of a muppet, and their personality is as golden as the rest of them. Only problem is, when we're out in public people just can't leave them alone. Hope your dreams come true real soon!
Apr 5, 2012 08:11PM Estel wrote:
All this talk of dogs and Goldens ... I had a yellow lab for twelve years ... had to put her down in 2008 ... she was 12. She was my girl. Loved that dog. I'm scared to get a new one because of lease training ... I've only ever had labs and they are so strong ... my left side is my dominant side and my LE side ... don't know how I'd train one ... but you all are giving me hope. I'm not a small dog person ... I like big ones. Maybe some day in my future ...
Had an 'Aha' moment the last couple of days. In some ways it really is like, "Duh" but ...I HATE do the MLD. I totally despite it ... it feels like a waste of time ... I can't tell that much of a difference and I just feel like my time could be better spent so I rarely do it. But because of you all ... I thought if I'm going to come on here ... I'd better do it ... so I have. What I can tell a difference in ... is cumulative. I can't tell much of a difference after one time ... but if I do it the next day, the next morning, the next evening ... 2x a day every day ... I really can tell a difference.
I have been a bug for a couple of days this week ... but overall ... complete with MLD at least once a day, cardio and light weights ... I'm doing pretty good. I hate that I have to do the MLD but I'm encouraged to know that if I do it every day ... there is a difference.
Apr 5, 2012 10:48PM Binney4 wrote:
Dawne-Hope, what a neat report about the cumulative effect! Excellent reminder--I always want instant results, and it's so easy to give up when I don't get them. Brava for you, and thanks for the inspiration!
There's no law about dogs having to walk on your left side. Train your dog to walk on your right. I know a married couple who are both blind and they each have a guide dog. His leads him from the left, as usual, but hers was trained to lead from the right, so they can walk hand in hand, each with a dog beside them. Or, during the training period, either a Gentle Leader head harness or an EasyWalk harness can help reduce the pull on your arm. Once they get the idea, you can switch gradually back to the collar. There's also an arrangement called a European leash that has several rings and a clip on it for adjusting to different lengths and configurations. You can wear it around your waist or over the unaffected shoulder and just keep your hand on it for guidance--any pull is eased by your waist or opposite shoulder, not your affected arm. Lots of options--go for it!
P.S.--if you enjoy training, a large dog can be trained to do several jobs for you to ease your arm, from hauling laundry baskets to opening heavy doors. Fun stuff!
Apr 5, 2012 10:59PM Tina337 wrote:
Dawne, your insight into the cumulative effect of MLD is spot on, at least in my experience. When I feel good, I am tempted to skip, but it's best when I stay on track. I appreciate your comment, as it comes at a very good time since I've been getting a little lax and skipping my morning MLD. Good reminder - thanks!
Today I walked with a friend around the town where she lives. Enjoyable way to get some exercise, but definitely not as strenuous as the hilly neighborhood. Off to bed to do my MLD.