GRRRRRRRRR I HATE LE..........
Comments
-
I haven't bought the LeBed video. I watched the 10 segments she did on youtube, and copied down the instructions of those exercises that interested me. Reason I never got the video is the same reason why you want to make a new one. She sounds like she's talking to a class of slow learners, and that really annoys me to no end. There are written extercises out there (Joachim Zutner) that could be done. While I am not in the US, I would love to get something different done by the real LE ladies. And yes, why can't we get another company to sponsor it? Doing it non-profit is a great idea as well, and maybe it could be ordered in this forum??? I am getting carried away, talking about sales before there is anything out there. Another good exercise that can be done is with 1 lb weights. We need to have someone professional review all the exercise ideas, and then perform (fun but normal!) Don't forget we're supposed to watch it every day or so, so it must hold up to repeats. We could also add a track with how-to-wrap short videos etc for the newcomers.
If you can get it off the grounds, I will be thrilled!
0 -
Melanie Ann, the "original" is the Lebed DVD called "Focus on Healing." It's here:
https://www.gohealthysteps.com/shop/product/focus-on-healing-through-therapeutic-exercise-and-movement-dvd-1014.cfmA lot of us use it, especially the opening section, which is 15 minutes long and gently opens the lymph system by concentrating on the node-clearing areas. Sherry Lebed developed it over several years, with medical direction, combining aspects of yoga, tai chi, and the techniques laid out by several lymphedema specialists (Chikley included--the move we're calling "tai chi breathing" was initially described by him years ago as an adjunct to MLD), as well as the current research available on exercise/movement with LE. Interestingly, her earlier videos were more strenuous, and she's tamed them down considerably to make them safe for LE and those at risk for LE, as I expect she would be liable for anyone exacerbating their LE by using her program.
The people in the video have a variety of medical conditions--not just LE--that benefit from this kind of gentle stretching and lymph stimulation, which is why not all of them wear garments or have visible swelling. She trains instructors in her method, who then purchase the right to set up their own businesses, a kind of franchise. You might have someone near you doing a class you could try out. I find the opening section very effective in helping me control my LE.
Check it out!
Binney0 -
I am in Philly. I am keeping the possibility open, although I have never done lebeds. I am thinking of ideas and if I get any good ones, I will pm you.
Linda, I am very happy that you like your one piece sleeve. My PT thought they were too hard to put on, and I wouldn't like it. You don't find that to be the case?0 -
OK, a question on another LE topic.
I'm having a bone scan tomorrow morning and it involves an injection of radioactive material into a vein. It's the first bone scan I'm having since my prophy mx. When I made the appt I told the secretary my arms couldn't be used and asked her to ask about using my port. She spoke to the doc and came back and said they prefer not to use it. I said, "Oh dear, that means they'll have to use my foot". This was weird enough for her to bring the doc. After I explained my situation she reluctantly said they would use my port as long as I went to the onc dept first to have it accessed (not a problem). My concern is if they decide injecting radioactive material through the port is a bad idea and have to use a vein. If for some reason they can't access my foot or neck and I need to use my at-risk arm, what precautions should I take? I'm planning to ask them to use alcohol to clean it after the injection and to bring Bactroban and a bandaid to put on it. Any other precautions? No nodes were taken in the surgery.
Thanks.
Leah
0 -
I have never done lebeds.
Feel free to PM me with asny ideas that YOU like Kay because this will NOT be lebeds.0 -
Hmmmm...sorry I dont have the answer Leah, and I hope someone who does posts very soon. It was concerning to me so I tried to look it up on the net, and came up with an old thread here on bc.org ( surprise) which showed the port was fine.
http://community.breastcancer.org/forum/105/topic/765069
Whatever happens, I wish you good results .
Take Care!~
0 -
Thanks Purple! I just read the thread. One woman said she had it without the tourniquet, so if it must be in my arm that's what I'll do.
I'm very concerned about the results this time. I've been having achiness in my lower back where the mets tumor is (sacrum) and my tumor markers are creeping up. I don't have a good feeling about this.
Leah
0 -
Leah - Prayers for you! Keep us posted. [[[[[hugs]]]]]
0 -
Leah
We will send some 'good feelings' your way.Hope, hope and more hope right at ya'!
Best Wishes to you.
PLS let us know how it goes - we do care .
0 -
(((((Leah))))))). Best wishes to you.
0 -
Leah,
I hope you can do it through the port. I just had a blood test done, and my onc said not to use the foot (clotting risk) so I requested special care with sterility and brought (as you mentioned) a bandaid along. Thank G-d. not only did the nurse manage to hit the vein on a first try (a rarity by me) but there were no problems whatsoever. On the other hand, I wouldn't want to have an IV put in. So hopefully the port is fine. I assume you asked your onc.
Good luck and may your results of your scan be what you wish for!
0 -
HI Ladies. I have a dear cancer friend who has battled lymphedema/cellulitis for years (not too many episodes with the cellulitis, but it has occureeed a few times lymphedema has been being treated for years). Here is what she said to me today (she is a 5 year? breast cancer survivor) Thanks to any who care to respondand have a blessed holyday, I will catch up soon, been super busy...hugs...Hi this is Nancy I have something going on with my lymphedema arm and wondered if you have experienced it. My little finger hurt the other day and I now have a hard little lump on the joint. My hand and arm are swollen and hurt from the pressure. There are no spots, redness or fever. My sleeve is too tight to wear and I am hesitant to wrap or pump.Any suggestions are greatly appreciated.
0 -
KayG - I've worn the one piece with glove for 3 days now, I haven't had any problem getting it off or on, I did have a one piece with gaunlet (no fingers) though that I got last year. My LE has been pushing me to get the one piece for 2 years now, but the fitter was a little reticent about it, because, like you heard, most people have a hard time getting them on. I didn't have trouble with the one without fingers, so thought I could try it - I only ordered one to start with and it did have a return policy so that way if there was no way I could do it I could return it. But it's great - I just need to get used to carrying a glove to wear over it for working, washing, etc... It's hard to wash my hands, and cooking is a challenge unless I wear a medical type glove over it, that keeps it clean and dry. I read on one of these boards of another lady that gets lightweight cotton gloves for general house work, that doesn't involve water. Because of my swelling issues, a two piece was only making it worse, then I developed more issues and even the one piece wasn't working (my fingers and knuckles were swelling a ton), so I had to try this. I called the fitters yesterday and order 3 more so that I have enough to last for a while. I think that the key is having a really good fitter that measures well - I also was real explicit about problem areas, like - needs to be a little looser on the wrist, and my thumb joint has pretty much disintegrated, so I wanted it a little looser there, the measuring took more than an hour.
That's probably enough info - let me know if you have any more questions. I asked for a fitter when I made my appointment that had been doing this for a while and had fit the one piece with glove before!!!
Linda
0 -
Linda, I'm glad to hear the one-piece is working so well for you.
I had the bone scan yesterday. They were able to do it through my port, though I had to wait in the onco day dept for a long time until a nurse was free who could access it - Sunday is crazy busy there. The rest of the scan was uneventful. Thurs is the CT. There's a nurse in that dept who does the ports so at least I won't have to wait.
Leah
0 -
Leah - glad they were able to acces your port for the bone scan and good luck on the CT. I had an IV in my ankle when I had bilateral carpal tunnel surgery - it was the easiest IV I've every had, the anesthesiologist had to place it though, the nurses were a little to nervous about trying
0 -
They were able to do it through my port,
YAY!
One less worry, Leah. CT will be behind you before you know it . Then, you have LOTS of ppl here with fingers crossed for good results.Please let us know.
Take Care and Happy Holidays !
0 -
Leah, so glad to hear that's behind you. Onward!
Hugs, prayers,
Binney0 -
Wishing everyone peace, happiness and health at this special time of year. Thanks to all for sharing your experience and wisdom. I'd be lost without you.
S.
0 -
Wishing you the same, marple!
And it's a great opportunity for me also to thank everyone for their support as well as their wisdom. It has been invaluable to me .0 -
Hi, I'm Sofia and I've been here before but this is the first time I post. I've been on the "November 2012 surgeries" and "December 2012 chemo group" threads (self explanatory). I'm starting chemo this Friday and it goes on till March, that's why I've been worried with other things besides lymphedema. But I have a strong feeling that this is the thread I'll come to vent for a loooooong time.
Long story short, I didn't want a full axillary dissection but my doctor put so much pressure I ended up so afraid of recurrence and signed the papers for it. I had a micro-met <0.5mm and he took them all. I'm 34 years old. Don´t know if this was the right decision, I have lots of doubts.
Surgery was 4 weeks ago and it's pain 24/7. Not as bad as the 3 first weeks, hope it doesn´t get worse during chemo because I don´t know how many times I'll be able to go to PT. Had to reduce/stop pain killers as my blood work showed it was too much. They weren't doing much for me after 3 weeks. I have some swelling (not a lot) but it hurts and I'm scared when I look at the huge list of things I can't do, ever again in my life. I'm single and live alone, love my family, but I need to be independent and need both my arms to work and provide for myself.
I just wanted to introduce myself and tell you that I will be needing your advice as you are all more experienced (unfortunately) in this lymphedema thing. I hope that in the future I can do the same for others too. A big hug to you all (with just my right arm for now, the left one is only decorative).
Oh, and yes: I HATE LYMPHEDEMA!!! GRRRRRRRRRR
0 -
I'm scared when I look at the huge list of things...
Hi Sofia and welcome !
The trick is NOT to look at the huge list all at once ( something I have LOTS of trouble with !) This is a situation where you need to face only one thing at a time, one day at a time, always hoping for the best and preparing for the unexpected. It can be quite a balancing act.Some ppl have times where it can be overwhelming, some deal with it better than others, and some simply have less challenges.We are all different.
The BEST possible thing you can do right now is to educate yourself on things to watch for with LE. The SUSO website is a fabulous resource for that . It's just a click away :http://www.stepup-speakout.org/
In the meantime, dont lift anything very heavy and be sure not to have needle pricks or BP readings on the left.
Btw, swelling a few weeks after surgery is NOT abnormal.
Good luck to you- you have come to the best possible place for support!0 -
Sophiafred
Boy am I ever glad you posted because we are your support team and we are waiting to help you. Please just hang on for a few days cause it's the holidays and we are all busy eating turkey and feeding our faces, this may be a time when we are trying to forget lymphedema but be sure that we are here to help you and will be on board to help you.
Ok, we got you covered for now. Do look up Purple's suggestions. You will be OK! Welcome to your extended family!0 -
Purple32 - Thank you so much for that link, I've been reading it and looks like a great source of information! I'm just about to post a sign on my back and my chest with a huge arrow pointing to my left arm and saying "DO NOT TOUCH HERE".
I know I'm in the right place
Thank you hugz4u! Enjoy the holidays.
0 -
Speaking of watching your arm, Yes as funny as it is you almost have to wear a sign on your back. Always watch out for your arm and hand. protect it. Even when I fell off my steps I threw my self opposite of my Le arms. Yup I got a wrecked back but saved many LE complications.
If you stick with us it is the best thing you can do because we live with this every day and have most of the tricks mastered. However LE can throw a curve ball even with the experienced ones but we come on the threads and usually figure it out. Kira took a LE course and really knows her stuff. Binney is a smart cookie too. Ok gotta run, hubby is home after7 days on the job.0 -
Sohiafred. yah you almost do need a sign to protect your arm. I even fell off the steps on the opposite side of LE to protect my arm. Got a wrecked back but not a wrecked arm, could of had both. Gotta run, hubby home after 7 days working.
0 -
sophiafred, It's GREAT that you are educating yourself about lymphedema risk, but as purple said, swelling four weeks after surgery is not unusual and can certainly be normal post-surgical swelling. Spend some time on the stepup-speakout site, especially looking at information that explains symptoms of LE, but please...concentrate on healing, and don't worry too much about LE. About 60% of us don't get it! And there's no way to predict if you will or will not get it...I had just 5 nodes out, and here I am with LE, but my mom had every stinkin' one of them removed from her axilla more than 40 years ago, and she's still with us, and she has never had LE! You can help tip the balance in your favor by following risk-reduction precautions you'll find on Su-So, and taking time several times a day to do some very deep belly breathing (which really does help move lymphatic fluid where we want it to go).
Welcome to our forum, and I hope you're always a visitor and not inducted into the sisterhood of swell! Please come back often and ask questions. All of us here wish that we had had the same kind of heads-up that you'll get here and from Su-So, because mostly we discovered these resources after we already had LE.
Best wishes for healing...take care of yourself!
Carol
0 -
Hugz4u - Ouch! That must have hurt...
Carol57 - I immediately assumed that I have LE but a few days ago my physical therapist was saying that it still might go away. I've been in so much pain that my head was not listening anymore. Thank you for the advice, the belly breathing is something new to me, I haven't tried it yet. Gonna do it now! I'm so sorry that you all have this condition, but I'm glad I found this forum, it has been an amazing source of confort and information.
Take care you all and a Happy New Year! (I might be gone for a few days since I'm starting chemo)
0 -
I immediately assumed that I have LE but a few days ago my physical therapist was saying that it still might go away.
Sophia
Its important to know that LE does not " go away" but can be managed with a good therapist ...esp one who is LANA certified or highly experienced in LE. They do a hands on tx called manual lymphatic drainage ( MLD) that you can do to IF you are dx. Post op swelling CAN and does go away.
As Carol said, keep looking at the SUSO site. You may have a great therapist ( I dont know ) but some of us - myself included , have had to be careful with <mis>information given to us by regular PTs.In the meantime, the deep breathing can only help!
Focus on your chemo and pop in whenever you need to ... we'll be here !
0 -
Hi Sophia and welcome.. Sometimes I believe that it doesn't matter how many nodes they take.. I know many ladies that have had the full dissection that have not had one bit of problems when they followed the carefully set guidelines. Then there are ones like me that only had a sentinal node taken but had radiation on all the nodes and after a year of pain in the breast, found out I had truncal lymphedema.. Just know that just because you had all the nodes taken, doesn't mean you will get the full blow LE... Be Careful and hopefully, you won't have to join the LE crowd.. But stick around for all the good info!!!
0 -
Just to clarify--post-surgical swelling does go away; lymphedema does not. And just to make us positively crazy, it can be very difficult to tell the difference between the two during the weeks and perhaps even a few months after surgery. And--MDs cannot tell the difference, although a trained LE therapist can, although in the weeks just out of surgery, he/she may find that difficult, too. Sophia, you can always ask your breast surgeon or your onc for a referral to a qualified LE therapist, for some measures and an evaluation, to put your mind at ease and to learn even more about a course of treatment if you should develop it. Sorry you have to face up to the chemo...my thoughts are with you on that particular marathon!
0
