GRRRRRRRRR I HATE LE..........
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duckyb1 Hope you find it - what a pain. Do you have any pets? My dog has taken an interest in mine, have to shoo her away when I take it off.
I'm continuing stretches and more upper body exercises, arm tingles afterwards every time. I'm not sure if I'm progressing or risking more LE. At this point it's minimal.
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Ducky, I have 'lost' my gauntlet in pants pockets for weeks. That is why I now purchase two so if I 'lose' one I have a back-up.
Sheila
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ducky, I have only lost my sleeve for a matter of hours (so far, but give me time), but I lost my sleep cap (which keeps my bald chemo head warm) for days. I looked everywhere and finally found it yesterday, it was in my coat pocket, the coat I don't wear as often. Check your pockets! Hope you find it.
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Ok, its Sunday.................looked again when I home from my daughters, and can't find the damn thing..................
Well here is why I know I could be looking right at it, and not seeing it.......(even turned all the lights on).......................yesterday at my daughters while making cookies, I took the top off the "cookie press" to refill it...............it was slippery, so I used a paper towel to keep my hand from sliding while trying to unscrew it..................................ok, I get it off, sit the thing down, and fill the tube with more dough...........................now I proceed to look for the top of the cookie press, (the plunger part), and I can't find it...........................for 10 minutes I looked, and so did my grandaughter...........................finally I said, what the hell could I have done with it...................it was right here.......................here sitting on the table was the "paper towel", I had used to take the top off...................I picked that up to throw it in the trash so I could look even better.......................and out of the paper towel fell the top of the press................my grandaughter gave me that "your kidding me, right, look", and I just proceeded to do what I had to do.
So, my sleeve could be right in front of my face, or under, on top of, next too, or wrapped in.................almost anything...............in the meantime, I'm not gonna worry about it.............I'm sure it will show up.......................just another "bullshit" cancer thing......................Ok, gonna go find the Vodka even though it is only 10am.........................I'll get an early start....................hahahahahahaha
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Thanks Binney! Well, we race in Cali and Hawaii but we practice by doing hot, miserable little donuts in Tempe Town Lake (kind of a glorified storm drain)
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Cooka, I couldn't help but notice that you felt downward dog and plank may have triggered your LE: Carol is working hard to address the oversight on the NLN exercise paper where they lump all resistance training in together, and yet Carol worked with a PALS trainer who said that it's very important to have controlled weight lifting, so weights--free or machine--are vastly preferred over theraband or push ups.
I saw a woman get LE after doing push ups....
My SIL is a huge Celtics fan, and his idol, Ray Allen, and many of the other players wear compression sleeves. So, I try and channel Ray Allen.....They are sold for triatheltes as well...
Ducky: I've also lost gloves in pants pockets and once dropped one in my office and had my staff searching, before the cleaining people came. I was frantic. It did turn up. Someone, I think Becky, told me to clip it to my sleeves like we used to clip mittens.
Kira
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Kira,................guess where I would have to put mine to keep from losing it.................yep, you got it.............I'm the worst..............
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I lost a brand new farrow glove 2 weeks after purchase...was soooo sad since it was black and so very slimming. Fast forward 6 months later, my daughter dropped her chapstick on the floor of the car and when she reached under the seat (a seat I had checked under a dozen times) she pulls out my glove. Yay!!!! Now I have a back-up glove again
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Whenever I take my gauntlet off to wash my hands when I'm not home I either put it in my pocket or my purse because otherwise I am GUARANTEED to lose it in a public bathroom.
I once lost my glasses AT HOME and had to wear an old pair until I found them (and of course I couldn't see to look for them). I eventually found them in my apron pocket. It was just before Sabbath began, I was getting last minute cooking etc done and put on my glasses in the pocket when I put on my makeup. Since that time the ONLY places I put my glasses down are ONE spot on the dresser in my bedroom and ONE spot on the bathroom vanity when I shower. If I take them off any other time I hook them iin my collar.
Sigh. Chemobrain.
Leah
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SO, I need a custom fit and the company is having machine problems. Do I switch horses in mid stream (try another brand) or persevere? I like the sleeves I've been getting WHEN THEY FIT. But apparently there are problems with programming the machines for custom fits. I'm in Canada and my sleeves were coming from Germany but now they are all being made in the States. I suspect the supplier is getting them from the States instead of Germany but what do I know? Other than I've been over two months waiting for a sleeve!!! HELP.
Oh and might I add.......GRRRRRRRRRRRR I HATE LE........
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For those who have lost a sleeve........MAN, that is frustrating.
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Sharon, I get custom Juzo gloves, and the best fitter just came back from maternity leave, so I'll ask her what's up. The Juzo rep left me his card the other day, so I can ask him too. We had major issues with the first one, and they were made in Germany, but then they basically straightened things out.
Can you talk to your local Juzo rep?
Kira
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Hello everybody, I am sorry to join you here. I have just been dx with LE (swelling and pain never went away after ALND surgery) ... I'd been very careful not to do anything to bring it on, but there were times when I'd notice something had pressed into that arm and left a red mark. (I haven't worn a ring or a watch since surgery).
Saw a physical therapist last week and she was supposed to send in order to the place that makes sleeves/gloves (or at least sells them) but she forgot and is now on vacation. So I got measured, but can't pick up the sleeve/glove for at least a week or more. :-(
What bugs me the most about LE (so far!!) is not even the pain, although it's almost constant, even though I do exercises. But it's the nature of the pain. It's such a creepy, weird feeling! Like I have little tourniquets inside my arm, or little blood pressure cuffs cutting off my circulation. It's gross!!
On the upside, the PT said it was good that I caught it early.
Oh, do any of you ever sleep on your LE side?! Fortunately, I've never been able to sleep for long on that side anyway, but to never be able to roll over ... sheesh, such a little thing. Now I just worry about ANY pressure on that shoulder/arm ....
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Etherize, I'm so sorry you joined the club--or as Binney calls it, the "swell sorority"
It's a steep learning curve, but once you get the tools to manage it, it gets much better--you're in control.
I just read an article in Journal of Lymphoedema, written by Anna Towers, about how she discounted her patients' pain, and was guilty of abandoning them. So true.
The pain should get better as things get under control.
Personally, I wrap every night, and it wakes me up if I start to sleep on that side.
The worries and the strong desire to avoid making things worse or causing a flare are exhausting. You may end up with a night garment, or wrapping, and that will keep you off that side.
I think we had something about this on stepupspeakout
Nothing about sleeping on the side, but how people tend to feel with the diagnosis--lousy.
Handling the Lymphedema Diagnosis and Surviving the Intensive Portion of Treatment
I developed lymphedema a month ago and have been so down. I have to say that reading about everything that must be done in order to control (not cure!) this thing has made me even more depressed. I'm usually not a whiner, but this thing has gotten me down even though the cancer never did. I got my sleeve and glove today - I hate them. I can't wrap my head around the fact that I will have to wear it every day from now on. ARRRGGHHH! -Munchy
I year and a half ago [when first diagnosed with lymphedema] I was in the same mind set as you. It sure is a bummer to have this life long challenge. I was so grateful to find I wasn't alone. No one in my tiny village who has had breast cancer had this "side effect", except one woman who really didn't want to talk about it. When I read that some Survivors have lymphedema in their leg I was sort of grateful it was only in my arm. I want to tell you it hasn't slowed me down. I'm off to Africa next month sleeve and all. Each day is a challenge but you know we're alive to tell our story and perhaps to be able to help someone else. - msmarymac
Trying to be positive is great, but it's okay to grieve, too. Lymphedema is a really tough diagnosis, and coming as it does after a battle with the breast cancer beast, it can really take our feet out from under us. Most of us have found ourselves floundering with this for a while -- grieving is hard work, and it takes time. Do be gentle with yourself! - Binney4
It REALLY DOES get easier. Once you have the self-care skills of MLD massage, wrapping, exercise, and skin care, you can start to take control of your life again. Steep learning curve, but there's pride and hope in knowing you can manage this and deal with it on your own terms. You'll get there, and it'll be good! -Binney4
Now that a little time has gone by, I have begun to make peace with this thing. Reading about and learning all I can about my problems is what I always do - it gives me some sense of control - so that is what I am doing. At first I was afraid that I would never be able to draw, paint or sew again - I do so much with my hands, and I am right handed (it's my right arm that is affected). But I have found that I don't have to wear the glove and sleeve every waking hour, and that's a big relief. A lot of my swelling is in my hand, so sometimes I just wear the glove. I have also been able to keep up my workouts - just keeping them more moderate than I'm used to (which is better than nothing, I guess). Now that the weather has cooled off, the swelling is a bit better. - Munchy
Here's a collection of papers on arm pain/disability with lymphedema, and it has the Anna Towers editorial--2008
http://qrc.usask.ca/rtm/armpapers.html
It does get better. And this is a great place for information and support.
Kira
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Momine read Binney's reply to me on the 14th, she had some advice about the "slimming sleeve shrug" I got mine and I'll try it out at school tomorrow. I'll try to get online and let you know what happened tomorrow night - I'm leaving town Wed. so I'll be out of communication for a while. The legluxe siteshe posted is where I got it. Thanks everyone and good luck to all!
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Thanks for the great reply, Kira! I'll be sure to look at those resources.
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Hello I have been reading this thread for a while because I have had some swelling, I have not been diagnosed with LE but all of a sudden (3 weeks ago) my hand and wrist have really swelled.
Is this weird that it is happening 2 years after surgery? do you think it could be LE? Who do I call? my onc? my surgeon? my gp? I am rather confused about who to turn to for some help
thanks for any help, Jean
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Jean, unfortunately, we're at lifetime risk. Most lymphedema shows up in the first three years, but it can show up decades later.
The best thing for you to do is to get a referral from any one of your doctors to a qualified lymphedema therapist:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
The referral should state: "Lymphedema after breast cancer treatment, ICD-9 code 457.1, evaluate and treat"--it falls under PT/OT referrals
And here is some information on what to do while waiting for the referral:
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting
What to do While Waiting for Your First Appointment with a Qualified Lymphedema Therapist
DO NOT try and treat this yourself!!! Proper professional treatment is essential to getting control of lymphedema and preventing its progression. Treatment can be expensive and inconvenient, but this condition is life long, potentially disfiguring, disabling and possibly life-threatening (if you get an infection known as cellulitis) so professional evaluation and treatment as soon as possible is essential.1) Get evaluated promptly by your doctor to rule out other causes for the swelling in your hand/arm, and get a referral to see a well-trained lymphedema therapist;
2) Drink plenty of fluids -- staying well hydrated helps dilute lymph fluid and keep it moving freely;3) Elevate the swollen arm or hand as much as possible during the day and on pillows at night; support the arm well so that it doesn't tire;
4) Several times a day pause and do some deep breathing -- this helps stimulate the largest lymph vessels in your body;5) Raise hands over head as high as is comfortable for you, three times a day, and pump fists 20 times;
6) Call for medical help immediately if you have severe pain, redness, fever or feel ill;7) You can try mild compression gloves by either Sammons Preston or Isotoner® Fingerless Therapeutic Gloves if your hands and/or fingers are swollen until your appointment with your lymphedema therapist. Be sure to bring them along to your appointment;
8) Do NOT use ACE wraps or any other wraps without the advice of your lymphedema therapist after your evaluation and your treatment plan is scheduled.Please let us know how you're doing. The earlier you get treatment, the better the outcome.
Any doctor who will be receptive, see you promptly and give you a referral will do.
Here is information for doctors:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
What a lousy time for this to happen--hang in there and let us know how we can help.
Kira
Jean, you're in MA--there are good LE therapists in Boston--at MGH and Lahey Clinic, and an excellent one in Fall River. I live in the area, so feel free to pm me.
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Ok ladies.........................sent my 2 sleeves back that were wrong, and picked up my new sleeve at the hospital today.....................I have it on, seems good........I just hope it does the job.............it is neither "custom", nor is it the heavyweight material.................guess its better then none at all, which is where my disgust with everyone, and eveyrthing took me...........................will let you know how this works after a few days.........hugs.
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Good morning everyone. I have to whine abit here. My LE therapist that I have been seeing since diagnosis 3 years ago is leaving the practice she is in. I wish her well in her new venture but am really sad for me. I have my last appointment tomorrow with her. My new sleeve and gauntlet came in just in time for her to check the fit. I might be able to see her in her new practice but I am not sure yet. My partner will be changing jobs soon but not sure when. It will depend on insurance.
We have access to many heath care practitioners and resources here in the greater Portland area but not too many LE therapists. I need to figure out what is the best care for me as well as what insurance will cover. I have some research to do.
Thanks for listening
Happy Holiday
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Nicole, Portland has loads of well-trained LE therapists. Check out the Vodder School and Klose training listings here:
http://www.mylymphedema.com/therapist.htmIt's so hard to lose a good therapist (or a good provider of any kind -- my incredible onc retires next week and I'm grieving!) I'm hoping you find someone wonderful to start over with. Keep us posted!
Binney0 -
I saw my new PT today. I am impressed with her already. Unfortunately I have Stage II LE in my calf. I will start Jan. 2. She was not impressed with the fit or the look of my arm. She said after my leg she is sending in request for my arm. She also asked that I wait on my foob because she thinks we can find a better fitter for that after she takes care of my arm. So I am not crazy about the sleeve being too tight and too long.
and the best for last. She knows all about Step up Speak out. I got more information from her than any of the the three times I went to the other clinic. She has been a LE PT for 11 years and 20+ years as a PT. I can't wait to see what she can do with my leg.
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Kitty, what great news! Whew! You landed in a good place.
Happy dancing for you,
Binney0 -
That is great news Kitty. I hope things improve rapidly for you. Becky
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Woohoo, Kitty! Such good news!
Binney and Nicole, I am with you on grieving the loss of good docs and therapist. I lost my LE doc in Sept and have app in January to meet someone she recommended since her position won't be filled for a while. I'm not sure recommended person is nearly as experienced, but I need a doc familiar with LE to write therapy and garment scripts. Thank goodness I still have my LE therapist, but losing my doc in the middle of my insurance appeal has been a pain. She may still be of some help, but her assistant hasn't been as enthusiastic as I would like. I don't want to deal with BS or onc for LE and garment scripts since they know so little about LE. My primary is incredibly caring and helpful, but even though she had BC, she is still rather unknowledgeable, too. I probably should take on getting her up to speed but I am more focused on finding someone experienced ASAP. I just don't feel like having to explain everything!!0 -
from your swell sister, 3jays 0 -
Thanks for the beautiful scene 3jays. Becky
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This thread moves so fast it's hard to update!
Back on page 104 we were talking about Jovi breast pads for truncal, and I wrote this:I recently bought a JoviPac Bilateral Post-Mastectomy Pad:
http://www.jovipak.com/breastpads.html
It's comfortable, has a low profile under clothes, covers me front and back, and it's light. But it doesn't stay put like the other two do. So I suggested to the Jovi people that they make some kind of short strap that would go over the shoulder and help keep it in place. They replied that they could make that addition for me for another $60. I declined. When I get around to it I'll probably add a short strap of something soft, and we'll see how that works.So I finally got around to adding the strap. I took an old WearEase compression bra that I don't use anymore and cut the adjustable straps off of it and stitched one to the breast pad. It was an adjustable strap, so that gives me some flexibility about the fit. First day trying it, and it seems to be working well. Glad I tried it.
Be well,
Binney0 -
3jays, thanks for the greeting -- looks mighty cozy! Happy holidays to all my swell sisters. Enjoy!
Binney
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Way to go, Binney! Love it when we can use our creative side to resolve problems. Plus, it also feels empowering! :-)
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