GRRRRRRRRR I HATE LE..........
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so sorry kittydog! Sounds like a terribly stressful time.
Take Care and be kind to yourself.
(HUGS)
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duckyb
Dont you get a refund on anything that was returned ?
I'm sorry I dont know your story- sure sounds frustrating.0 -
Kittydog, that is so horrible... I understand what you are going through... my dad died 3 days after Christmas, 38 years ago... and it still messes with my emotions/stress during this time of year...
I have an MLD question....My 5 yr old grandson got sick this week and his glands in his neck are swollen .. I taught him the neck MLD.. Is that ok to do??? He seems to be doing better... The belly breathing makes him cough so I didn't push to do that... Is there anything else I should or shouldn't try?
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hugz - I think it is a good thing that this thread is alive. We need to GRRRRRR ... and that's part of the LE learning curve. Sometimes we need to lament to help us get to the other side. I'm so sorry that you think you may now have it in your breast!
GRRRRRRRRRR indeed! 
kittydog - I am so so sorry!
I too am paying for too much salt, not enough sleep and family stress. I'm pretty swollen and my arm hurts.
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Trying to wear the sleeve/ glove longer and longer. Did 11 hrs today.
Took the glove off a few times ( just to eat etc ..) and all looked fine.
Last time I took it off there was a welt between baby finger and the one next to it- no big deal, but then I noticed a ' puffy area" just BELOW that like in the ' lower knuckle'. Raising hand up on a pillow and open , closing etc .. and will do MLD later, but if this sucker doesnt resolve, I have to question the whole idea of sleeves and gloves for someone with mild LE.
What use are they ?
You start the day at a certain measurement. Your wear the sleeve and glove 11 hrs so you can end with the same measurement and the garments themsleves can cause swelling.<and I actually wonder if I didnt wear it at all if would matter>Only time i have noticed swelling since the inital crap of this was once in sleeve, once in the VICE Rx glove and now this.
Just cant wait until I get more compression going with my RX glove ! ( NOT! grrr....)0 -
I came across this whole googling relief for LE.
Looks like total BS- has anyone ever heard of it ?WTH wouldnt we all just get 1 if it worked? DOH!
http://www.lymphedema-reliever.com/Home.html0 -
purple - I've worn a sleeve for specific things, like exercise, flying, walking, driving, house work for about 2 years now, and I definitely see a difference when I do these things and I don't wear my sleeve I can see that wearing the sleeve does help. It's when my LE as been triggered by something weird, that I haven't done before, that I have trouble with the sleeve. It seems that each new trigger makes my arm swell differently, at first I was fine in a two piece sleeve & gauntlet. I overworked the arm w/o a sleeve on and then I got the swelling in my hand and had to go to the one piece sleeve/gauntlet, now I had a punch biopsy with triggered swelling, almost immediately - and this time I have to go to a one piece sleeve w/glove. Not sure what that all means, but it scares me a little for the next weird trigger
Checked out your link above - boy that's scary, I wouldn't use anything unless my therapist approved it. Did you watch the video? I think that would cause more damage than good - they are starting at the hand and moving up the arm, my therapist said NEVER go that direction. Lymph massage is like clearing a stream, if you take the bulldozer to the end of the stream and keep pushing down stream then you will end up with a HUGE pile of debris that you can't clear, that's what she has seen happen when people have started massaging from the hand up trying to push the lymph ahead. I bet if you ask them on the http://www.lymphedemablog.com/ or http://www.stepup-speakout.org/ they would freak! There are a lot of people and things out there that say they know how to deal with LE, but unless they are certified by LANA or NLN, or another valid certifying place I wouldn't believe a word they said (actually I've seen this myself, and people tell me they know about lymph and tell me exactly the wrong thing to do). If you are an OT or PT you can say you know about lymph therapy with out any certification, and even if they've been to "a class" a lot of the classes are only 8 hours long - living with this makes you realize that there is a ton to learn, and everytime you turn around something else comes up. So I want someone that really knows what they are talking about.
Editing to say that I watched the video more closely, again and it looks like it might be made of some sort of plastic that is slightly sticky so that it gently stretches your skin, but you can do that with your hand, and it's kind of expensive for something you can do with your hand w/o this thing. I notice they don't tell you much about it either
Whewwww - that was quite a rant!
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my Mom is really having swelling problems. This is my hand next to hers. Ouch. Makes me cry.
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Has she been seen for this? Is it lymph or venous? She should be seen for that.
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So sorry Cindyl
I am guessing she is being seen (?)
IF she is doing MLD, I might cut her nails if I were you . Would hate to have her scratch herself. I hope this doesnt seem like a trivial comment, but it really could be dangerous. Poor baby!0 -
I am so sorry KittyDog. I spent all Friday afternoon in the ER with my 90 yr old mother who came down with a really bad case of the shingles. Plus we were miles from home in a different state! Last weekend she was in hospital with what we thought was a heart attack but now may have been her coming down with shingles mimicking angina pains. At least with us dealing with her this weekend there was never any discussion of my LE in the family. We both had vaccine so I hope I don't get them as I am putting the silver cream on her. Came home yesterday. LE seemed to stay under control with high sodium Thanksgiving dinner and long drives.
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Purple and Cindy, I agree about cutting her nails. In the picture it looks like it's just her hand that's swollen?
Becky - woohoo about your LE! Sorry about your mom, I've heard that shingles is really painful! Hope she feels better soon.
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I am putting the silver cream on her.
Becky
I am going to presume you are using gloves because I am sure you kinow that shingles are highly contagious. Hope your mom is better soon- it can be a long run.0 -
She has been hospitalized for treatment of a pressure sore and had no swelling till last night. The staff and doctors don't seem concerned at all.:=( I'm going to try to get my Le pt up to evaluate her. She's here in this same hospital.
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Great idea, cindyl!
Good Luck to you !
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I did get reimbursed for the bad custom sleeves, but we also had bandages involved, and all the co-pays for the therapist, and there were many over the 18 month time table. Just to frustrating to deal with. The bandaging (and I was an expert wrapper), considering I had no help doing it, then the co-pays....gas cost to drive there 3days a week, plus paying to park. This was worse then the LE to be honest, so, I threw in the towel and said enough is enough. I was paying in cost, and anxiety to get nowhere. Call me a quitter, but I felt like a dog chasing its tail.....
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Wow!
NOBODY would call you a quitter ducky, that's for sure ! I was just hoping you got your $ back, but I see some things are more valuable than money...ike time and yes, the angst involved. Simnce you already know MLD and how to wrap and we are taught home self- care , you could contuinue with that and then JUST get (RE) fitted....there hAS to be a sleeve out there for you!
I just hope that somehow you could see another fitter and finally get a sleeve you can live with . You deserve to - ESP> after all that you've been through!
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Kitty, Oh sweety pie, you have had a rough time. I am so sorry about Auntie. Have you had a chance to improve your Le in the last day or are you too consumed with your Aunts affairs? Take care Girl. Try and take a few deep breaths to get your lymph system a kick start.
thinkin bout ya!0 -
Thanks all. I did extra MLD last night on my bad leg and it looks better. I also was in and out of the bathroom all night too so that also helped.
Ducky...I totally understand the giving up. I am that way about my legs. It's time for new garments and I do think I will be going with a new fitter. I like my old one but if they can't return your question in a months time nor your money that they owe you then they are crooks in my opinion. I know they have charged my old insurance twice for some garments but I haven't called the insurance because they declined it. This will be my fourth place to try. Some because of insurance changes.
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Seems like I'm not alone with the bullshit.....worst thing is I had the best. God knows what the real idiots are like. If these fools only knew what we go through, and then they magnify the situation by getting it all wrong.hugs
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Ok Ducky and Kitty, I know you are tired of all this LE garbage. I get it. But.......something really easy to do is the TAI CHI breather exercise and it doesn't take much time, just about 5 min thru out the day in total. How's that for fast? I just posted it in the kick butt thread. I think it may help you and it doesn't cost a red cent. How about it. Do it even if your fed up and not wearing all that stinking grrrr LE gear. COME ON GIVE IT A TRY!
Here is something I don't give out often "A big sloppy kiss from me
!" There now go give it a whirl.0 -
...and I just pasted hugz taichi in a word doc for me so here it is , easy for your reference:
On the bottom of the sheet is says PILLER, NB(2007) Lymphoedema Assemssment clinic- Flinders Medical Centre: Based on Clinical trial outcomes, Lymphology 2004 So the exercise given was studied in a trial. YEAH!Starting here I will type word for word from the sheet she gave me:(from hugz)
This exercise will help improve lymph flow from your arms and help reduce the size of your arms.
Perform this exercise 5 times on each of 5 occasions per day (when you wake up, at lunch time, at aafternooon tea, after dinner and just before you go to bed).
It works best if you leave your sleeve on if you wear one.
The most important ones are when you wake up and when you go to bed as this will help clear accumlated fluids from your tummy and chest area and allow the lymph fluid to better drain from your arms.
How to perform the exercise
(it's a little like how you would welcome a friend-but slower)
1) Point your fingers towards your chest (breast bone)
2)Slowly open your arms out ( as you would welcome a friend)
3)While still breathing in open your arms out as much as possible and put your hands back as far as you can-ensuring that you stretch and tighten your muscle in your hands and forearms and upper arms.
4)Hold your arms like this (while still holding your breath) for 3-4 seconds
5) Relax your muscles of your hands and arms and while slowly breathing OUT as much as you can, return your arms to the postion as in point 1 where your fingers are again pointing towards your chest
6) The whole exercise shoud be done SLOWLY and each one should take about 10 seconds. REPEAT 5 times.
That was the instruction sheet she gave me. I might add that when you breathe out you could bend over and make your back like a letter "C." This would compress the air out and pump the lymphatic system deeper. Just like when Sherry Lebed hugs a beach ball and bends over and breathes out.
This exercise should be easy enough for those with limited abilities. Let me know if you are going to try it. Lets call it the TAI CHI BREATHER seeing that it had no formal name on the exercise sheet. Out of curiousity, I would like to know if it bothers anyones LE or improves flow.
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Purple I will start that tomorrow and see how it works...
I, once in a while, usually at the LE therapists office when he says, "What do you think? Another month of once a week"..think... This whole thing is for life, and its not going away... is it???
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This whole thing is for life, and its not going away... is it???
Well, my therapist acted like mine would be gone in 3 mos ( the time the sleeve and glove was RX'd for ) but guess what ? I know better!
Sometimes I think just having the cancer and worrying about recurrence would have been easier ...an end in sight. At least now, I rarely think of cancer !~0 -
Well ladies,
It is great sadness that I have to report that i need to fire my LE therapist.
She knows the stuff, had the training, had the practice, but is still not that knowledgeble about garments, downplays concerns I have. She's a good PT, but I think I would be better served with another LE therapist. Dang, why did she have to blow it????
Another chapter in the LE saga. Time to move on now.
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How annoying, Nibbana. We are so dependent on them and when they let us down in any way, it's upsetting, especially that you now have to search for someone better. I also started with a very nice one, but definitelly not knowledgeable enough. I didn't really know, but I lucked out that she decided to stop working. By that time I had found out who was good, and was able to transfer. A lot of time was lost though, so I am still without the glove I have been waiting for very impatiently. I wish you lots of luck to find a good replacement real fast!
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Nibanna
I do feel for you~
My last ( first) therpaist didnt even acknowledge I had LE and dismissed me without proper training on MLD.
This one seems 100 times better , but I will say she had never laid a hand on me ( just showed me the MLD and had me do it the 2 times I went) She seems quite knowledgable though and answered lots of Q's. Works together with my fitter etc ...
HOWEVER, I am still concerned about some 'issues' in my good arm, and she is blowing them off and insisiting I can have BP taken from there. I believe there is a very strong chance I have LE in that arm, and I dont want that to be the trigger to reveal itself.
The other things is this- I am seeing her once more at my request, but after that she is not planning any more appts.
( I am mild stage 1 )
Does this seem right - total 3?0 -
Purple32
Don't let ANYONE blow you off about the BP and IV - I started out mild stage 1 truncal LE. I let them do the BP/IV in forearm/hand this last surgery and now it is full blow in my "Good arm" - At least when the BS saw my arm the week after surgery, did acknowledge maybe he shouldn't have blow off the little swelling in the upper good arm and sent me to my LE T. right away to get it under control.... but now I am bi-lateral and have to deal with swelling in my wrist and forearm... forever!!!!
If your LE is in control, you don't need many visits but I have been going for 3 months - 2 x a week for the first month, then 1x a week until the swelling is in control - what I mean by control is = edit: "When" I can keep the swelling down on my own..
Nibanna
I have had good luck with my first and only LE T in our town.. If I needed to change, I would have to drive 1.5 hours to another..The only thing I don't have is a fitter, unless I go to a medical supply store in town, and they think they are above anyone and treat me like dirt.. My LE T measures me and then figures out what off-the-shelf sleeve/glove would work best for me.. I can't afford a custom with no insurance.. So far if something doesn't work correctly, he makes modifications with stuff he has in his office... so far so good...I hope and pray we can keep this in control so I don't need a custom anything.. Even though this is dissappointing for you, remember all the good stuff she managed to do for you and learn from her weaknesses when choosing a new LE T.. Good luck and my prayers are with you...
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We all need some good news - I am getting my sleep apnea machine this afternoon!!! The donated/free machine finally arrived yesterday... maybe I will be sleeping better soon!
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GMA, I was just about to post when I read your post, Yes the past few days of posts I have noticed that us girls seem to be having more complications especially with family sickness, shingles moms in hospitals, trials and tribulations, so the sleep apnea machine is such good news. It is nice to know that someone is improving and especially you. With all your leaky boobs,LE issues, surgeries it is nice to know that you will be sleeping soon.
To all the girls that fire their LE therapists doc, etc. KUDOS! Sometimes we put faith in people that we really think can help us and then we find out they are not really helping.We are not sure if we should ditch them because...the next appointment MIGHT be successful. Well, you know what .....go with your gut reaction and move on. I have made so many mistakes trusting docs and finally I have figured out that I am the boss and I pay them and if I don't get satisfaction I let them go!
The rest of you hang in there, I know it's been rough. Come on girls we can do this.
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