Kicking LEs butt!! Exercise & Self Care Log
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Did weights today, lower body squats with the ball and ab work. Haven't do much cardio. Need to drink a lot of water tonight and do Lebed before bed.
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I'm having a weird 'problem.' It is good in one way and I'm thankful but it isn't good either.
My sleeves are too big. I've bought new ones, same size and they're still too big. The new ones (same size, same manufucturer) are bigger than the last ones that I bought new. While I'm thankful they are big ... they're not doing the job that I need them to do.
I'm uneasy using them to lift weight because I don't want to cause any problems (which is why I wear them in the first place). *sigh* I'm afraid you all will tell me, "Go to a fitter and get custom garments." How do I do that if I don't have a therapist and I don't have insurance? As I drove home this evening I thought about using my loose garments over the silver wave for working out ... I've done that in the past ... and it's fine for weight lifting but it starts to hurt if I do that for more than a couple of hours.
I need better fitting sleeves. They're slipping down to my elbow and I know that isn't good. Why aren't the new ones the same size as the old ones? (my older ones are actually TIGHTER than the new ones). I'm already wearing a Juzo Small. Not sure what to do ...
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Dawne, If your old sleeves are black or I noticed if they are tie dyed Juzo dreamsleeve then they will fit tighter due to dying process. Also maybe your small has shrunk in the past washings. But to say the new ones are slipping down to the elbow I would say something is drasticaly wrong. No....this is not a fit you should be wearing as you could backslide into a flare or even find that you are wearing the big sleeves but they are not compressing,causing them to be ineffective. You need to do somthing about this.
I wear Juzo over the shoulder (3512 varin I think) and then I have Juzo dreamsleeve with silicon. and a Juzo tye dye. They are all Juzo and in the identical size but they all vary in fit. The dreamsleeve is almost too long. The tyedye is tighter and then the over the shoulder is just right so I have 3 of those I wear most but I hate the shoulder strap. UGGGGG Goldilocks please help me.
These are all off shelf as my insurance is very low. Keep ordering from brightlife and see if you can get a better fit. There refunding policy is great.
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hugz - thank you. I wear the lowest compression so my only option is beige. I'm really thinking about ordering from lymphedivas, though ... just to try them. I've thought maybe my arms have shrunk ... but the fact that my old ones are tighter than the new ... something is wrong. The LE OT I saw a couple of years ago measured me and said I needed the Juzo small.
edited to add:
The slippage is more subtle .... it's not slipping down to my elbow, it really is just slipping down an inch or two ... but that is still too much. It didn't start doing it until I'd worn them for a couple of weeks.
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Dawne
I highly recommend lymphedivas. Josh is EXTRAORDINARILY helpful. ( I was just on a very long email exchng w/him yesterday where he went waaaaaay out of his way to help me ) I have no doubt you could email him, and ask what the policy would be if the small didnt fit properly.
In the meantime, I have a size small allegro ( cheapo) that I only tried on - never wore at all. I bought it because I was ( still) waiting for my sleeve order from the fitter since the day after TGiving, and I am weary of washing the one so it was just as a spare. The wrist area has a light ' band' , and my wrist is my problem area so I will not wear it. I took it off immediately. IF you would like to try it, pls PM me, and I will be happy to mail it to you. I can also give you Josh's email address.
I would also ask how you are laundering and drying your garments . I imagine that could make a difference. Mine does say to use the dryer, and I do.
BTW, does anyone here know of any reason not to take VITAMIN E with LE? I am having some other health isuses I am trying to work on, and I know there are so many catch 22's with this condition. If anyone DOES take it or knows of any reason NOT to, pls post.
THX
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Ok ladies, Question.... I am just now starting the Lebed dvd slowly... I am seeing alot of you also doing Sansone dvd.... it is too early for me to start that too???? I know I have to pace myself - don't have the Sansone dvd but with our weather finding something to do indoors without a treadmill sounds like a nice idea... Any guidance on how much how soon... BTW 7 weeks post seroma surgery and no leaks!!! YAY!!!
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When my sleeves were getting too loose (due to weight loss) my le t suggested that I wash the sleeve in hot water and dry it in the drier to see if I could shrink them a bit to tide me over till I got the new better fitting ones. Mine were loose enough that they were unwearable, so nothing to lose if they shrunk too much.
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gmafoley, take a look at the Sansone workouts here: http://www.walkathome.com/ --you can play some short demo videos on the site, so you can see what the activity is like. If you are walking for exercise now, I suspect you would be fine with the Sansone videos, SO LONG AS you keep the movements small at first. There's a lot of knee lifting, high kicking and arm pumping--but you can either ignore those and just keep stepping in place, with no arms, or you can keep these movements very small. That way, you begin doing what is essentially just a walk, but to a certain pace to get your heartrate up, but you don't over do it. As you get stronger and feel more confident, and as you continue to heal, you can begin to take bigger and higher steps, do the knees and kicks, etc. Oh--and why not place a call to your surgeon's office to ask about green light for some cardio?
Ohio..I think you snuck in there that it is your birthday!!! Maybe yesterday? Not older, my friend, but better!! Glad to hear that all is well.
Dawne-Hope, Brightlife will take a garment back even if you've worn it, for up to a month or six weeks (I can't recall exactly). So, you might experiment with some other sleeve, and if it doesn't work, send it back. They handle Lymphedivas, too. Or, have you investigated, to see if there is a durable medical equipment (DME) provider in your area, that might measure you independent of any order from a therapist? That's what I did recently. I bought two sleeves/gauntlets and a night garment from them (with insurance help, thank goodness), so it was worth their while, but they were more than willing to work with me without a therapist in the picture. I do have a therapist, but she really does not have much to offer me to help with my stage 0 LE--no visible swelling, and I know the MLD routine by now, so it feels to me like our meetings are 'talk therapy' and I prefer to spend my deductible / co-pay elsewhere. Plus, she does not measure for garments. It was time recently to replace my sleeves, and I learned from BeckySharp of a DME a few hours from me that specialized in LE garments, and who works with therapists all over the country. It was worth driving to have them measure me, and they also deal with more sleeve brands than the first, local DME I went to. In the end, I have a better fitting sleeve than my old ones. So, all of this to say, can you explore garment dealers in your area, even if it means driving a bit, to find one willing to work with you directly? You might need your MD to fill out a form. You might have to pay more than using a mail order vendor, but if you find a sleeve that fits well, you can always get replacements, as you need them, from a mail order source.
And I'll second Purple's applause for Josh at LympheDivas! He has helped me with a couple of advocacy projects. And, when I ordered a sleeve, he took the time to review my measures, to make sure I got the proper size. And...they sell seconds on their website (design printing errors; the garments are fine), if budgets are tight.
Now, back to exercise--yesterday by the time I went to bed, I was amazed to see that I had logged almost 7 miles! I did early-morning exercise and went to the gym, but I guess I was also just a busy beaver walking about the house all afternoon and evening, to get so many steps in. It was a pleasant discovery when I put the fitbit to bed for the night!
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30 minute treadmill run last night. MLD, 30 minute cross training (elliptical) this morning, plus Lebeds. Dropped another half pound of LE fluid, and was able to get into my tight jeans today!
Dawne - my LE therapist had good things to say about BrightLife Direct and their customer service: http://www.brightlifedirect.com/
Edited to add: I was writing about BrightLife when Carol posted as well! After I posted I saw her post as well, so there's two recommendations for you.
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Carol, Thank you for that walking link - That would really work for me I think but will start out just doing walk part without all the arms.. I will ask my LE T about it. Surgeon let me go back to work at the fabric store ... and he told me to walk so....
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I think but will start out just doing walk part without all the arms.. I will ask my LE T about it
GMA
That's the ticket!Even after you get feeling is though you are conditioned you may want to modify or omit some of the repetetive arm movements.
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GMA, yes, I second purple. My Sansone DVD has rubber bands for arm exercises and I wouldn't use them because it is not a strictly controlled like weights are. Carol will second me on that.
I walked in a glorious forest for 45 minutes today. Forgot a couple tai chi breaths though.
Brightlifedirect is tops to me! The best return policy I know of! They want to get it right!0 -
Hey, butt kickers!! Popping in to report and say hello. I have been pretty much middling it with exercise and LE self care. I found I actually do better exercising when I travel - go figure that!! I clocked some major mileage while in TN. Anyway, I am now home, hanging in there and doing well. One of the things I have been working on is trying to find a balance between regular doses of emotional support from these forums and trying to resume/begin activities in a way that reconnects me to my life before BC. No, the LE symptoms haven't gone totally away, but I have found that with my goal to relax and find balance that I feel less stressed, which helps keep my LE in check. So, it's kind of weird, learning to know when to forget about the elephant in the room and realize I can manage later, or sensing that I need to stop and regroup. It is a delicate, high wire act, my friends. I know this is nothing new for many of you, especially those of you who work multiple jobs or have multiple roles, but it is for me. I had become so worn down by the events of the past few years that it was challenging to meet each day with enthusiasm, let alone accomplish many tasks. I was on survival mode, but I am slowly trying to move back into full-swing. Taking on greater responsibilities around the house, brushing up my resume and preparing to look for a job. It's a big deal, and I am proud of myself.
Self care and exercise are critial and will always come first, but with stability I feel the need to try and regain some self reliance. The art therapy group I attended for three years (which helped me cope with chronic pain, the failed implant recon and development of LE) ended back in spring and my schedule has prevented me from attending a local monthly BC support group. So I have been been working without a net lately! Instead, I am immersing myself in old hobbies and art. I have reconnected with photography and plan to purchase a new camera so I can resume challenging and losing myself in this activity again. I have also been contemplating sewing projects and gathering materials, researching the construction of items I plan to create. I haven't drawn much since my arm and hand swelled, but I am hoping to begin this again, too. Finally, I have made serious headway with clearing out my home, which has given me a greater sense of being in control. I have even more bags of clothing and household items to consign, and it feels good to let go of what no longer fits in the house or on my body.
While there are definite hands-on and immediate steps to self care, I am currently embracing the kind of self care that nurtures my soul. I miss being in touch with all of you every day, but you are always in my heart!! I think of you when I walk and lift those weights!!
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Tina, I am so happy with your report. Sounds like you are jumping over the LE hurdle and not looking back. I certainly could use a dose of you! Do drop in with a line or two as we miss you but don't feel to tied in as we all want what is best for you, And that is living life as you please!
How did you enjoy the dam steps with Becky?I heard you really moved!0 -
Gma, there are plenty of Sansone videos without those stretchy bands, and I agree with Hugz--avoid the bands. They add an unmeasurable amount of resistance to your arm and torso, and that's a no-no for us. If and when you want to try resistance training (aka weight training), it should be done with very light dumbbells, where you know the weight and can increase it in tiny increments. But that's for muuuuuuch later, gma. If you can get some moderate cardio into your days, by walking or by modifying the Sansone workouts as noted, you'll be doing yourself plenty of good--weights can wait 'til you're stronger!
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Wore the tribute vest last night, then MLD, 30 minutes Pilates, and Lebeds this am.
Tina - yes, now I recognize the vest in your picture now that I have my tribute vest - I got the same color! And totally get about trying to balance your new life while reclaiming as much of the old as you can - yes, it is a high wire act. I also drop off and on the boards occasionally - sometimes we're better served by taking a break.
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NatsFan - the tribute is unreachable for me - I can't afford $900 out of my pocket
.BTW I think I am getting another bug... I am hoping its just the Asthma and the CPAP that is giving me the scratchy throat.
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Gma - that's so not fair. I maxed out on my DME out of pocket for my insurance with my flexitouch earlier this year, so my LET and I worked to get everything we could ordered in this calendar year, including the tribute vest and snap-on sleeve. I already have a tribute sleeve that is a few years old that I love. Since the vest/sleeve combo can be coded as a single garment beacause they are configured with snaps to be attached, so I was able to get the vest and the associated sleeve within this calendar year. It's not right that we have to play these games, and that prohibitive out-of-pocket costs are keeping you from getting a tool that might prove valuable for you. In the long run it would be less expensive for insurance to get LE patients proper equipment like a tribute vest and proper treatment sessions with an LET as that would help us avoid cellulitis and other complications that are very expensive to treat. But sadly with our for-profit medical system, there's an emphasis on short term bottom lines and very little thinking about the long view.
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Ok ladies, Got the ok to "try" the Sansone and the Lebed dvd but my LE T says for me to only do 5 minutes to see if it flares my breast nerve pain or not... Pray it doesn't because I really want to "move" on and not be a chair potato anymore...
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I went to the gym last night and did an hour on the elyptical and just over 6 miles. I was working! I haven't done that much since before Thanksgiving. It felt good afterwards, and no sore muscles or anything today, so I am a happy camper.
Tina, good to hear from you. Purple, Carol, GMA, Becky, NatsFan, Binney, Dawn, Cindy and everyone a big Hello! and thanks for the encouragement.
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Gma, hooray for trying this out, and the 5-minute plan is a very good one! You can do that, just following the demos online, I think, before investing in a DVD.
NatsFan, no kidding the system is so unfair. I have a new Tribute..just got it, and notice that it's at the tail end of my deductible year. I would not have ordered it had I not met deductible, because oh my gosh, these things are expensive. You are so right about the games we have to play, and it's unspeakable that those without healthcare insurance have no access at all.
Kay, good work--six miles in an hour on an elliptical is a real heart-pumping experience!
Yesterday I did some walking, about 3.5 miles and not speedy. Today I'm not expecting to do much, and nothing that would make me breathe hard. Because...had a colonoscopy this morning, so between yesterday's prep and today's procedure, I think I need to drink lots of water and be a desk jockey! But all's well, and my mood is light and bright, learning that there's no sign of anything malicious. Everyone here gets that, I'm quite certain! Tomorrow, I'll work out with an extra spring in my step!
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oh dear, I am overdue on the nasty colonoscopy and trying to avoid the thought~~
got enough other stuff to deal with
got a mamo set for day after christmas, it is a 6 monther after the last one showed changes but they ended up B9 so who knows~~
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I forgot to mention that the hospital staff was 100% on board with LE precautions, and several of the nurses took time to tell me about standard procedures, which include being willing and able to do pokes and BPs on feet, legs, necks...whatever is needed to respect LE needs. And this is a tiny, tiny hospital!
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Serioiusly thinking about putting on my rain gear and going to the beach to stormwalk. The waves no doubt will be flying over the boardwalk. Could add a new dimension to walking. Yah "wave dashing" try to avoid getting washed out to sea. It is so cold and we had snow today only to have pelting rain and wind to melt it away. I am kinda forced to go as my chiro appointment is later and I can't exercise after that so I guess I have no choice.
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Hugz, you are such a trooper!! Let's add wave dashing to our Olymphics events.
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wave dashing? wow, done that I think but never heard it with a name!
then again, jersey shore is not into enjoying the waves for now, give us some time to rebuild the beach!
but boy do I miss trucking out to the coast with my bike.....good excercise and the salt air is good on the sinuses
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Did my new Olymphic event. Wave dashing.
That included sea spray. I tell yah it was really easy with the wind pushing me. It was another story heading back. It took me 15 minutes longer because I was fighting the wind. It almost pushed me several times over. At the end of the walk I did my tai chi breather facing the waves. Twas beautiful and a day to remember.Yes the salt is great for sinus and I am totally cleared out, but my face it so salty. I liked my lips and thought I just had potatoe chips!
COME ON GIRLS,
LETS KICK BUTT HERE!!!!!!!purple. I sent you a PM
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I knew I could count on you all!
Thank you so much for the tips and help.
I've ordered from brightlife before but I didn't know they would take it back after washing and wearing. They are going to be the only one I order from now on.
I didn't have a clue about the DME either. Surely there is a place near St. Louis that can help me. I'll check it out.
I've never dried my garments in a dryer but I did so this morning and it does make my loose garments wearable. Hadn't thought of doing that ... thank you all so much!
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I worked out with my trainer today ... will be the last time for a couple of weeks and he let me have it. In a good way!
We've gone easy on the arms this week because I'm still paying for my trip last week without my sleeves and this weather is driving me crazy! Truly. I developed 'sinus induced migraines' last 'winter' because of 30 degree temperature swings every week ... one day we'd have highs in the 60's, next 30's ... did that EVERY single week all winter long. It's been like that so far this fall ... I hope winter comes and stays for awhile. My head and my arm say "Enough" ... but that is my grrrrrr for the day and I'm done now. 
I have lots of desk work to get done tonight ... so I'm going to sit here, drink my bottle of water, brew a pot of rooibos tea and work and get my drinking done.
I'm hurting tonight because of big storms moving in ... so I'll probably do MLD before bed.0 -
Dawne thanks for reminging me. Gonna get out the rooibos. Glad you pulled butt and kicked it right in the head today! Good exercise!
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