Kicking LEs butt!! Exercise & Self Care Log
Comments
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Quick kick-LE's-butt report: morning MLD, gym workout for 1.5 hours, mostly weight/flexibility and just a quick cardio. Will do bedtime MLD and commit to a longer cardio session tomorrow.
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Okay, I didn't try new sleeve again today, but I did try on Solaris vest. I think it fits really well. I had started to worry about therapist ordering longer length, that it might be too claustrophobic. However, it seems fine, better than some of the compression tanks around my tummy. It probably will be hotter though. I have to wash the vest before wearing, but will first have therapist check for fit on Thurs. I am crossing my fingers that when I try my sleeve tomorrow, that it fits right, too. Of course, if all these items fit just right, that must mean I will be jinxed on my second set!
I don't remember where I read or who said it, but a while back a couple people here were talking about how the different colored fabrics for the Solaris garments felt different, some were more stiff or scratchy. Anyone remember that discussion? Anyway, my brain filed away the comment that someone said the teal colored fabric ended up feeling softer than the black and some other color, so I ordered the teal. It is definitely nice and soft. I normally wouldn't order this color, but it actually is very pretty.
Accountability: MLD this morning, compression all day, clearing nodes several times, fist pumping, lots of water, 550 steps, 200 bounces with arms up, and I will finish my day with MLD when I log off. I will admit that with the compression tank on all day everyday, that I have become very claustrophobic and am not wearing at night. I am hoping that with the night vest that I will be able to switch back and forth between wearing day or night compression. Will have to discuss with my therapist.0 -
Hey Tina--Glad all you armor is here. Now to get used to it. You sound more upbeat.
Yesterday walked out at dam--only 5 miles as I did not have time for more. Did get 13,000 steps in. I still do two MLD, MLD exercises, and weights every other day but have not been reporting it. It is just now part of my daily routine. My new norm--albeit a time consuming one!
Let's all be windshields and splat a lot of bugs today. The aggressive (killer) bees have arrived in my area so I need to hit some of them. We had them when I lived in Panama and I had a friend die from multiple stings so not happy to hear they are here.......
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So, on Sunday, my mother fell and broke her hip. The whole extended family lives in California, and called me all night long.
Yesterday, I called the Kaiser Hospital where she's at, and spoke to the sweet nurse at 6 am their time and then my mother when they allowed calls to the room.
My sisters and father couldn't "find" my mother--so I had to email them the contact info.
She'll have the surgery tomorrow. Then rehab.
I see a trip to California in my future.
I am walking, riding the exercise bike, and MLD--try for once a day.
It doesn't rain but it pours, huh?
Kira
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Yikes, Kira, you have a lot more piling onto your daily platter! Exercise helps beat down stress, but you've got stress of a whole new level brewing here. You should commiserate with Tina, whose mother is also far away and dealing with similar issues. I saw a short piece on TV yesterday that said ours if the first generation that will care longer for our parents, than for our children. So much truth that that one! My own parents are in relatively good health, in their early 80s, and mercifully I can drive there in 5 hours. My heart goes out to you on the distance, and of course it's natural that extended family wants you included in care decisions. Good luck with all of this and with keeping your sanity and your LE in check throughout.
Carol
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Tina, this all sounds very hopeful, and I'll bet that therapist appointment simply cannot come soon enough!
Becky, your routine is daunting. I'm in awe that you keep this up, with relatively few time-outs for things like family visits.
It's snowing here! I guess it will be an indoor-exercise day for me! Now I really regret not taking an hour to do outdoor cardio walking yesterday. Lesson learned: carpe diem when it's a nice diem!
Carol
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Awww, Kira, so sorry about your mom. Sounds like you are the "go to" person in your family and that can be so stressful - especially when there is a whole nation separating you between coasts. It does really all seem to come at once, right? Here's hoping her surgery goes smoothly and she is able to rehab quickly and without complication. And, more importantly, hoping you can stay sane and strong as a windshield!
Tina, the garments sound perfect in fit - and as Becky said, now time to get used to them. I keep wondering is there are custom garments in my near future.
Carol, Becky and Tina - and anyone else that does weight training - did you all train before LE? Do you weight train only with a trainer or do you do it independently? Do you all follow PAL protocol? I am dying to add in some weight training but have yet to find a trainer that has any knowledge of PAL - and I seem to be more informed which is fine, but I don't want to make a mistake. I know the trainers can get PAL certified but they have been hesitant to spend the money to do so. Is there a way I can do this and follow PAL at home?
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Kira I am so sorry to hear about your mom. I hope her surgery is successful and she has an easy recovery.
I 'graduated' from LE therapy yesterday. I read this thread and still feel I don't know as much as I should! I have not heard of most of the garments and fabrics you talk about. I asked my therapist yesterday and she did not indicate that I needed a vest. I have two sleeves and matching gauntlets, two surgical vests, and the big clunky arm sleeve for night sleeping. I feel like I am over my head when I read your posts. I have all the garments apparently that I will be needing. I love this thread but need to do more homework!
I hope everyone has a wonderful day!
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Catherine, I lifted weights prior to my bmx/diep recon surgery, as a strategy to prepare for what I expected to be a full-body surgical assault. It worked--recovery was a relative breeze.
Fifteen years ago, I lifted regularly, doing so for several years until I injured my back, probably by moving a too-heavy weight plate that someone else inconsiderately left on a machine. I regretted losing my strength, but I was afraid to lift again for fear of re-injuring my back. Until last summer, when the greater fear of not being strong going into 12 hours of surgery motivated me back into a gym! But the injury fear prompted me to re-start with a trainer.
I am incredibly fortunate that the wonderful trainer I discovered doesn't charge much for his sessions, and this fellow turns out to have a huge heart. He gives me much more time than he charges for, and his coaching is simply wonderful. I cannot say enough in support of working with a trainer, but I do know that in most places, it's so expensive as to be out of reach. But even two or three sessions can get you safely started.
On the PAL question, I brought Cathy Bryan's PALS for Life workshop to our little town. We got seven people together to take the one-day workshop, and the trainers each paid her $299 for the day. (If they're charging $50/hour to train, this is not a big amount to pay for the PAL training!). Two hospitals and a local pharmaceutical manufacturer donated funds to cover Cathy's travel expenses, and to cater refreshments and lunch at the workshop. Cathy was on the PAL Trial research team--she supervised all the personal trainers working with the research participants--and her workshop was really, really good. Anyone who thinks they might like to round up some trainers and bring Cathy in to get some PAL education going, just PM me, because I will happily share all the documents I created to market the workshop, solicit sponsor funding, etc.
If organizing a workshop is too daunting, UPenn's website has a form that certified trainers can complete to request the PAL Protocol documents, which include a detailed how-to with demonstration photos. They will not give it to us LE patients, but the site says they will provide it to qualified trainers. Here's a link: http://www.penncancer.org/physical-activity-and-lymphedema/receive-pal-intervention-materials/
I work with my beloved trainer three times a week (sometimes one or two, depending on work travel) and I feel SO GREAT after starting my PAL-compliant program in January! I really do notice my strength. And so far, I have not had any bad LE repercussions. I wear my sleeve/gauntlet before, during and after each session, and we absolutely respect the PAL guidelines during each session. I do have a sense that now I can lift bigger/heavier daily-life items without worry that I'm setting my arm up for an LE flare.
UPenn is now developing an abbreviated in-gym program that is currently offered in Philadelphia as part of a new research project. I understand that it is a four-week program, one day per week in a gym group with a supervising trainer, with the women doing one other day of weight training at home. This is so smart--limit the in-gym time to four sessions, which is enough to teach form and educate on appropriate precautions.
I have been corresponding wtih the program managers at UPenn, because two women here have said they are or will participate, and it's covered by insurance. I want my local LE therapy contacts to be able to offer insurance coverage, too, and the UPenn folks have been wonderful in sharing--just this week--information about how they have set up the program so that most insurers will cover it as PT visits. The new program is designed to be offered by PTs. They tell me that not all insurers participate, but most do, although in some cases the patient's co-pay or deductible means that coverage is not all that helpful. Even so, it's a great start in the direction of having exercise that is configured to help LE be recognized as insurable therapy.
My granddaughter weighs well more than the 5-15 pounds that surgeons have been known to say is the weight limit for women with LE. I would be miserable if I had to respect that kind of weight limit! Not to mention that I have to lift at least 15 pounds into the overhead bin each time I fly for work. Weigh your lightest roll-aboard--all of mine weigh at least six pounds empty, and most are closer to nine pounds. Even if you check your bag, it has to move in and out of your car on the way to/from the airport. Etc. etc. etc. We need to muscle up--safely!
Carol
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Oh, Kira, I am sorry to hear about your mom. So difficult to deal with long distance, and it is reassuring when you reach a nurse that is helpful. I hope she isn't in too much pain while waiting and that everything goes well during surgery. Is she getting a total hip replacement? I will be thinking of you and your mom. Glad you are keeping up with your exercise routine during all of this, as I am sure it is a sanity saver!
Becky, it's great to hear you are on a roll again after company left. Thanks for checking in and reporting. You are an excellent example of how time off from exercise doesn't necessarily mean a total derailment. I think that is good for all of us to witness. There are times when visiting family, a vacation or a crisis of some sort limits our ability to stay completely on track, but with the intention to return to schedule, one can continue forward when the event is over. Killer bees in K-ville? Really? On top of the daytime mosquitos? My goodness!
Catherine, I was a gym rat in my pre-BC life. I pretty much exercised and worked out my entire life. I also loved bike riding, tennis, inline skating, swimming, bowling, hiking and trail running at different times. I am the perfect example of how four years of little exercise after age 50 can really change your body. I am thin, but my muscle tone is not there, and my cardio conditioning is shot, too. Chronic pain, failed implant recon and LE did a number on me. I remind myself that I have this history of being healthy and fit, and that I just need to wake up this body, remind my muscles what they can do!
I am fortunate to live in the Philadelphia area where the PAL study was conducted, and in late 2010 and early 2011, prior to my deconstruction surgery, my LE therapist hooked me up with a trainer who had participated in the PAL study (one of the trainers that worked with Cathy Bryan). She came to my home and gave me a copy of the PAL protocol and taught me how to do the exercises. I purchased a set of the free weights they used for the program, PowerBlocks, that allow you to adjust the weights in one pound increments. She had said she would go with me to my local gym once I needed greater weights for my lower body. I followed the routine, as much as possible with the chronic pain, trying to set myself up for a successful post-surgery recovery.
Either this Thurs or in two weeks, I will begin participating in the Penn research project that Carol mentioned. It's my understanding that there will be an initial LE and exercise education session led my my LE therapist, and then the following four weeks will be the weightlifting program. Even though I am familiar and have exercised using the PAL protocol, my therapist thinks this is a great chance for a refresher and to see how my body responds after deconstruction and with the new arm involvement. She said I would be more closely monitored since it's part of a research project, which I believe would include taking measurements.
I kind of think I will be starting two weeks from now, as I am just getting all my custom garments and need to give them a try, but we will see. Either way, I will keep you guys informed about the experience. Oh, and, yes, my Blue Cross insurance does cover ($40 copay per session, same as MLD sessions), but I also have the option to pay cash for each session if I prefer not to use my insurance. The amount for cash out of pocket is between $35-40 per session. This allows others with insurance that doesn't cover to participate. I will pay cash vs use insurance so I can save my sessions for MLD, especially because of my new arm issues.
Carol, I am so glad to hear that Penn is showing you how the program can be set up so PT covers! How wonderful. You're on the cutting edge, and I think your community/area is fortunate to have you as a resident! I hope there would be some arrangement like they are offering here, that cash could be paid vs using insurance. If someone doesn't have a co-pay, then using insurance might be preferable, but since my co-pay is probably a little more than cash for session ($38 is what I think I was told), there is no reason for me to use my insurance. Also, someone might want to save their benefits, for ex., cash for a MLD session for me is close to $130. Only reason I know that is because with my surgery last year, I used up my allotted PT sessions.0 -
Tina, I am ever hopeful that we can really ramp up LE support around here, but my oh my, it is like pulling teeth to keep the discussion going sometimes. Slow as molasses in a Michigan April! A few folks around here must have labeled me the LE stalker by now.
Wouldn't it be wonderful if we could have a two-week LE boot camp / spa (funny combo, I know) where we could go to get 6 PAL sessions (learn form and precautions) and then be able to continue at home? And have an LE therapist or two available to teach sessions on pushing through LE walls, or whatever...strategies to discuss with LE therapist at home, for example...nutrition sessions...lots of group outdoor exercise? Garment makers' samples to try on? Weight loss-oriented meals, because for some of us, that's an important LE control goal?
The UPenn program gets you 8 supervised sessions, right? In which case, I think a two-week LE jump-start camp could accomplish nearly the same thing. And while I'm dreaming...it should also be FREE! Yeah right...time to come back to earth.
Carol
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Carol, I love your dream and I'm on board to help you realize it one of these days (sooner than later). At a minimum, maybe we can all meet for a spa-type getaway filled with great low sodium, healthy food, long walks and lots of hugs and laughs. I hear you on being the LE stalker. I think the trainers at the local Livestrong program I participated were just "sick to death" of hearing me go on about LE.
I'm having a bug week - but crawling my way back. I think I have shingles - waiting to get into PCP to verify but pretty sure that's what it is - seems like its mild right now, but i'm swollen and wow, pain! So, I think I am "giving in" for now and just managing hydration and sleep and breathing.
Justme - welcome again and I know it's really overwhelming - all this LE stuff. I'm a relative newbie and it's still a learning curve for me - garments and therapists and tips from the wonderful ladies here. But, thank goodness this forum exists because what would we do without each other.
Tina, thanks for all the wonderful info you provided. I'm going to PM you for a few extra questions, if you don't mind.
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Kira--I am so sorry to hear about your Mom. And so far away. Mine is 90 and I am fortunate she is mobile and independent but I know that could change in an instant.
Carol--Snowing?? It is cooler here today--only 65 and cloudy. I did walk the three loops at the dam--16,000 steps. I would have loved to walk in snow.
Catherine--I did some weight lifting before bc but was not consistent. The exercise science professor where I work developed a program for me and two friends when we turned 60. We videotaped the exercises. But I did more cardio. I started weights again at the urging of my lymphedema therapist. She had attended a conference in which PAL was presented. I have been following her advice. She has me gradually building up. I only see her for measuring but she emails me and I see her at a monthly support group meeting.
Janis--I only have sleeves, glove, gauntlets, night sleeve and breast swell spot. Sometimes I am confused when there is a discussion over some type of garment I do not have.
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Tina, ironically my mother had looked into a hip replacement on the side she broke--she had one on the other side, but the break is so bad that they can't do a replacement.
Unfortunately, a lot of family issues are coming up around this crisis, and they don't seem to realize when they call me at 1 am, that I have to get up for work at 5:30 am....
She seems better today, and surgery tomorrow. Then rehab, and I'm exhausted.
And work was stressful BEFORE this: it comes in waves, doesn't it.
Kira
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Becky thank you for the reassurance! I will learn, but still have a long way to go. I don't know anything about this PAL training either. This is the first I have heard of it.
I do however LOVE Carol's suggestion of a two week LE training course/spa combination! That would sure be fun.
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Since I was just officially diagnosed last Friday & went to my first PT session today, I'm going to post my questions on the GRRRRR site. But I''ve been reading for awhile & am definitely up for a one or 2 week camp. Thanks for all your information.
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Well, we can sure dream of a two-week LE camp, but wow, the logistics and cost would sure require some problem-solving! But we can have fun imagining what would happen there. Here's a start on the virtual program: Lots of water aerobics, because water exercise is so good for our LE! And on our virtual spa menu: dark chocolate, at every meal of course!
I just did my day's cardio: Did 4.8 miles in one hour, and a first for me: I jogged 2.5 miles of that without stopping. Today I wore for the first time a new sports bra, best fit I ever found, and the only one that is both comfortable AND stops the bouncing. So I decided to go for it and see if I could jog without falling over, winded. Surprised myself!
I did morning MLD and will do some bouncing on the ball soon, then MLD before bed. And I need more water than I've been drinking, so I will be making a conscious effort to guzzle some of that.
Kira and Catherine--accept the break in activity as the most appropriate form of care for the whole you right now. Elder-care related stress; shingles--so different and yet both surely benefit from some TLC, which means lots of rest!!
Janis, ditto on not being able to visualize all these garments (garment fashion show--add that one to the virtual LE camp!). MinusTwo--sorry that LE means you have joined our ranks, but delighted to welcome you into our support group. Let us know how you're doing on daily care. Those of us posting here are doing so because reporting in helps us stay committed to keeping up the LE care and the exercise.
Carol
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Catherine, hope you're on valtrex and feeling better!
I actually rode the exercise bike, just to work off some of this.
But, I am tired, so I'll take it easy.
Binney and I remembered how Suzy talked about wanting to stick a pencil in someone's eye, and unfortunately, that's the level of civil discourse at my work right now, so fighting on several fronts.
Kira
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That's horrid, Kira. Best wishes for navigating the potholes and pitfalls at work. Life is simply too short to put yourself through unhappiness at work.
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Hi-
New to the ;lymphedema jargon. Can someone tell me what Lebed is, please? Also, a source for doing your own MLD would be helpful. Thank you!
Chris in NM
DX 4-2008, stage 1 IDC left; ER/PR+, , lumpectomy, SNB (0/1), 26 rads, tamoxifen
DX 12-2011, stage 1 IDC right; ER/PR+, bilateral mastectomy, complete hysterectomy (1-2012), arimidex, and now qith LE in both arms
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Chris, I've asked Binney--as she has bilateral LE and is our resident expert-- to respond to your post. Here's a site to check out, and there's so much to learn, but you can do it
http://www.stepup-speakout.org/treatments_for_lymphedema.htm
Although home care and self care are essential, we all need a qualified lymphedema therapist to start us on the path of treatment
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
There's a lot to learn, but we're here.
Kira
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Chris, Lebed is a DVD (http://www.gohealthysteps.com/store/?productID=3) that shows a gentle exercise and stretching routine that encourages lymph flow. If you search youtube, you can find some samples (I think the youtube versions were recorded separately, but you'll get the idea. For example: http://www.youtube.com/watch?v=h2luK4JRAbo&feature=relmfu . ) Some of us poke fun at the DVD because it's kind of hokey, but many women here really swear by the method. You can do this with zero fear of harming yourself!
Teach-yourself-MLD is dicey. A youtube search will find you some examples, and once I found an incredibly detailed printed explanation online. The problem is two fold: one, there is a lot out there in pop culture about stimulating the lymphatic system, and it's not necessarily accurate, nor is it necessarily designed to treat lymphedema. Second, there are many variations on performing true, LE-therapy MLD, but what's most important is that the way you do your MLD should be configured to address your LE!
LE is quite individual, and it can move around a lot, so the best strategy really is to have a qualified LE therapist work with you to understand where you have it, how it presents, and then he/she can show you the best way to nudge that lymph in the right direction. A one-size-fits-all approach isn't likely to work. For example, your scars from breast surgery might run in a different direction than my scars, and because scar tissue is a real roadblock for lymph flow, we may need different MLD strategies.
LE in both arms--yikes, you have a mountain to climb, but as Kira said, Binney not only also has bilateral LE and is our resident expert, she has a huge heart and seemingly endless patience to answer all of our questions. I think she found the secret to getting 30 hours out of each day. I'm sure she'll stop by here soon to offer you support and suggestions.
Let us know how you're doing, and while you're in our exercise/LE care thread, please feel welcome to post your daily care successes and challenges. We have a really supportive and caring group going here.
Carol
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Thanks, ladies.
I am working with a PT with lymphedema training of some kind, but need to do the research and figure out what we should be working towards. My patient husband has learned from the PT how to do MLD and how to do the compression wrapping. But I'm a bit insecure in what we are doing, and want to figure things out as well as I can. You are helping me get started, so thanks!
Chris in NM
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Chris, I'm glad to hear you're getting the help that's needed. There is a very credible online MLD demo, not a substitute for learning from your own LE therapist/PT, but good for more perspective when you already know what you're trying to do: http://www.nwlymphedemacenter.org/vid_mngmntA.php
Wow for a husband who learned MLD and wrapping to help you tackle this thing!
Carol
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just found this thread, came to read, and check it out.. not being active (medical issues ) is kicking MY butt, so im back, and moving around as best i can; with le and ms...3jays0
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Carol--I woke up and decided the retreat would be a good thing if dark chocolate is involved! I will always be a foodie.
Chris--I do the Healthy Steps DVD daily (Lebed). MLD is tricky. I hope your therapist knows how to do it right and teach you and your husband.
Have done my morning MLD. I am going to do an hour on the elliptical then Lebed. Then off to work. It is cold here (relatively speaking--not like Michigan) right at freezing. Same tomorrow. It has been a weird winter and spring.
Up and at em everyone! Thinking about you today Kira. I don't function well when I am tired so I know you will be struggling at work.
Catherine--Shingles ugh!. I had them in the path from the back of my head into my eye and down my nose about 18 yrs ago. It was horrible. I had to see an eyedoctor daily for two weeks and lost some vision in that eye. I think it would be worse on the torso. I did get the vaccine last fall. Hopefully I won't ever get again. I hope you have a light case if it is indeed shingles. Take it easy.
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Looking forward to watching and learning, Carol. Thanks!
Chris in NM
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I was the bug by the end of the day yesterday and not feeling great today. Last night my forearm decided to swell. I will openly admit that after spending literally five hours trying to wrap my hand and arm that I still don't know what the eff I am doing! So I was up all night trying to wrap when I could have just gone to sleep and probably felt much better today. I did brief MLD yesterday morning and full MLD at bed. Compression all day and overnight, but not the new garments. I irritated the heck out of my skin taking the new sleeve on and off the day before. No exercise. I don't know what exactly triggered, but it probably was a cumulative effect of salty dinner and poor sleep the night before last and doing chores around the house yesterday. I think deciding where to put board with hooks for my purses was the main stressor. And, yes, the purses were on it to make sure everything fit. It was fairly heavy, and I was holding with my LE arm up on wall and door to see how it looked. Bad idea. My husband wondered if it was too heavy to hang on door, so you get the idea of how stupid a move it was. By dinner when I finished chopping veggies for a big salad and snacks, it was all over. It is difficult to access the inner part of my forearm, hard to reach and do MLD with non-dominant hand, so I am not getting much relief. I had hoped the wrapping would do the trick.
Okay, griping is done. I need to pick myself up and salvage the rest of the day, use the LE tools that work for me. I'm sure this means I have to wait two weeks to start the exercise program, and now I am hoping my therapist won't cut me loose just yet. Be back later in a better frame of mind and to catch up and comment.0 -
Aw, shucks, Tina, what a huge pile of frustration! Haven't we all become so laser-focused on accomplishing some task, that we willfully ignore the little voice of LE reason, as in, don't lift that heavy object? Proves you're human!!! Forgive yourself, try to be patient while your body rebalances a bit, and start again on LE care.
Learning to wrap must be very trying. I'm not there and hope not to go there, but it's quite helpful to me that you're sharing that frustration. You're helping manage my expectations if the need ever arises. I'll remember this episode of yours and be able to remind myself that even a woman who is so patient she can make incredibly detailed (and beautiful) drawings, had a hard time mastering the intricacies of wrapping! But you'll get it, yes you will!
Carol
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Your comment just made me cry, Carol. You're so thoughtful. Thank you.
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