GRRRRRRRRR I HATE LE..........
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I say, "It's a medical thing," or " They keep my arms from swelling." Some people want to know where they can buy some as a fashion statement (I wear Lymphedivas), hahahaha. Or grrrrrrrrr......
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I guess it depends who is asking. My friends all know I had treatment for bc, but I also get the glazed look if I try to explain too much.
Sometimes it leads to more questions: does it hurt? Or, the one I like least, how long will you have to wear that? Answer: for ever, I guess!!
Sometimes I share the cancer bit with my patients, mostly when I get fed up with them whinging about their sprained wrist etc
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Yes Jeannie, I just wear plain color juzos and I get the same thing being I am bilateral they don't realize they are for medical reasons. I just tell them they are for swelling (SE from Breast cancer treatment) and are $69 a piece - so give or take about $200. Then they say (after dropping their jaw) - Oh I don't want to PAY that much for them..
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I'm surprised you keep their interest for that long. Usually their eyes glaze over quite quickly.
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I signed up for LiveStrong at the Y. One of the members told me the two trainers don't know much about LE. One is a nurse. Now I am worried I might overdo it, which I have a tendency to do, and cause swelling. This a big grrrrrrrr for me. I'm tired of worrying about LE and just want to get in shape again!
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Jeannie, please print out the information for trainers from the LE website - I can't remember it exactly right now, but it has been posted under the Exercise & Lymphedema site. Take it with you and talk to the trainers before you start the program. I will try to bump the Exercise site for you.
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Linda, thanks, I did!
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Jeanne, when you go to the class, try to remember, if something doesn't feel right........stop doing it. Don't feel compelled to do it just because everyone else is. Listen to your body and trust your own judgement.
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Hi Ladies,
I'm new to the thread and have been reading through many of the posts here. I apologize in advance if I ask questions previously asked before. I guess I just need a place to vent. I never had surgery but developed lymphedema none the less. It first hit my left arm and was taken care of in short order by a great PT. Fast forward two-three months and it hit my left leg. Same PT got the swelling down to nothing. Two weeks later I ventured working one day at work where I'm on my feet for 7-hours and the leg got pretty swollen. Haven't been able to get the swelling down since.
Saw the PT today and we're trying different wraps. Swelling is also moving to the other leg and I'm scared it's going to take me completely off my feet. I'm all by my lonesome so I'm limited in who I can call for help. I've been so discouraged and doing a lot of crying on and off. I'm attributing the crying to one of my pain meds but the tears just keep coming. I'm also scheduled to work again tomorrow
Need to know this is beatable and I'm not going to end up being totally debilitated. Any words of encouragement out there? I spent most of today with my legs elevated to try to get the swelling down but it's not done much.Sue
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Sue I also have it in both my legs. Grant it I don't work but it is manageable. You have to do your MLD just like on your arm. I should be wearing stocking on my legs but currently can't afford them. It's been almost 4 months of wearing nothing and I see some issues after working a cookie booth Sat. for six hours. Have you been put in any garments to wear daily? Since I have it all over other than my left arm, I do MLD on the right arm, the stomach area, and then alternate legs so not to overwhelm the heart.
I wish you luck.
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I must say emphatically that LE and cellulitis suck! had another round begin 2 weeks ago when in Minnesota for a training course for work. Thankfully I pack my emergency stash of antibiotics and when the pain in my arm woke me at 4 am I started them. Could not move the arm from the pain for 3 days and then the redness and pain subsided enough that I was able to wear my compression on the plane ride home. I love not having to wear it during the day but getting cellulitis is NOT my idea of a fair trade. GRRRRRRRRR!
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Thanks Kitty. As much as I hate having this, it's good to know that it's manageable. Hopefully it will be short lived!
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Kitty, I somehow made it through my part-time job today. I'm on my feet for 7-hours and don't move much from behind the register. I was given exercises for the arm a few months ago and it knocked it out fairly quickly. Unfortunately the arm/hand swelling returned last week.
My leg swelling was there but the PT had me wrap the leg for work. The other leg had some swelling and the foot as well. I was given exercises for the leg a few weeks ago. Worked for about a week and then has done nothing since. I was able to do some of the leg exercises at work today
). I'm assuming MLD is some sort of massage? I don't know what it is but will ask the PT about it next week. Am also feeling some inflammation in my sides. Getting very nervous about that one.Thanks all for your insights! Sue
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this site may help you understand some more.
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milehighgirl, you've got swelling in so many areas that I'm wondering if you are able to see a physician who can evaluate you for more than a limb-by-limb treatment. I don't know who the specialists are in Colorado, but one thought is to call or email the office of Dr. Joseph Feldman in Chicago and ask if they have names of colleagues in your area. He's a lymphedema specialist and chairman of the board of LANA, the certifying body for LE therapists. Here's a link to his page on LANA's website: http://www.clt-lana.org/therapist-267/joseph-l-fe...
Also, on the LANA site you'll see a find-a-therapist tool when you're looking at Dr. Feldman's page. There are many resources in Colorado. Are you certain that your current PT is qualified to treat LE? With the swelling you describe, not having manual lymphatic drainage as a tool being used, and not having been taught to do it yourself, raises a big red flag in my mind.
One of our members has a therapist who once described treating LE as being like whack-a-mole: you push it down in one area and it pops up somewhere else, or you fix one problem and another one shows up. So everyone has symptoms that evolve. But your whack-a-mole issue is huge! I hope you can find some better resources to get to the bottom of what's going on.
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Thanks Carol. I saw the onc. today and was supposed to have my chemo. Scans came back showing the tumor in my leg muscle had grown another cm. All of the breast cancer was maintaining or shrinking. Doc. decided to take me off the trial and sent me over to radiation/oncology. She'd already talked to the doctor there. When I met with rad/onc, she said it was the tumor pressing on the chain of lymph nodes. It was having the domino effect everywhere I was having lymphatic swelling. Soooooo......I go back this afternoon for a mapping session. Then next week I'll have a daily dose of radiation to the tumor which will hopefully shrink this little *&(^*&^(^. As it shrinks, the pain should go down/away and hopefully DIE and go away for good. With it the swelling and lymphedema everywhere else. I'm willing to take a shot at this. Not happy that I have to have rads but willing to go for it if it will keep me from losing the use of my leg (per my onc.) I'm going to continue to do the lymphedema exercises and such until I know this is going to work.
Sue
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So sorry to hear Sue.. Darn tumors anyway! I'm praying for shrinkage in more than one way!
I've been doing a bit of traveling with my DH, went in to the LET today and first time ever - hands are swollen :-( Just don't know what to do and what not to anymore. For the past 2 years its been torso and upper arms/elbows.. Guess I better get serious about management.
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So sorry you are having such a tough time of it Sue. Makes my problems seem minor! LE therapist today was pleased with the result from my night wraps, but she is changing my sleeve for something with " dynamic compression" so a bit more effective, and I have to wear a localization pad against my inner forearm, where I still have a pocket of swelling ...
Good news is I have been given permission to start training with the dragon boat team next week. The YMCA has donated 50 free membership to Sistership members xxx
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Sue, you are certainly having to deal with it, that's for sure. Some women in this forum have reported that when 'things' pressing on nerves and causing issues --like tissue expanders or sometimes an implant that moved where it ought not to be--have had relief from some of the LE problems after those problems were fixed. It's not the same as a tumor, but it makes sense to me that as your tumor shrinks, there might just be some relief from the lymphatic disruption. I'll send lots of positive thinking your way on that happening. Please keep us posted.
gmafoley, arrrghhh! In the hands is horrid for you, because you work all day on a computer and hands are mission-critical for that. I hope you get some resolution, stat.
Morwenna, good news on the dragon boat permission. If there are others on the team with LE, I hope they will share their strategies for keeping risks of LE flares at bay. I've never tried dragon boat, but I'm an avid kayaker and I find that I don't swell, but my arm gets dead dog tired after a few hours. Last summer I put a pedometer on my paddle on a typical day when we were camping out of our kayaks for 5 days on a river trip. 19,000 strokes during the day--I was stunned at the count and surprised that my arm, although tired, had not punished me with a bout of nasty swelling. I hope you have a great experience and can build arm strength without any LE nonsense. I also hope to hear more about your training, if you have time to post about it.
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Hi Carol,
well training starts next Monday. They have one session a week in a central gym. I understand that it's 45 mins (?) dryland training in the gym, for strength, endurance and flexibility, and then in a pool, or rather sitting on the side of the pool, I believe, learning the paddling technique, which is apparently quite different to any other type of craft!
Apart from this, we undertake to do at least a further two exercise sessions a week. Once the ice melts (sometime in May) we start twice a week training actually on the boats, and there are several weekend festivals, in Alberta and BC mostly, between May and September.
They require us to be at least 6 months completed treatment, with a medical approval, and they have a PT on the team who does individual assessments, together with a chief trainer (fitness), and a coach (paddling). One of the members is president of the Alberta LE Association, and she tells me many members need to wear sleeves etc to paddle.
Our association is called Sistership Calgary, but there are similar race teams of breast cancer survivors worldwide, and every 4 years they meet for an international dragonboat festival. This year's is in Florida, I think?
With 20 paddlers, a drummer and helmsman on each boat, they reckon to cover 500m in about three minutes, and it's apparently really exciting!
I just found it really inspiring to be with so many women who are truly thriving, although there were some sad moments at the meeting the other day, mentioning past members who had succumbed to this dreadful disease.
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milehighgirl. I'm in your pocket during your treatments. You can do it girl! Get a old white teeshirt and sharpie pen the same amount of squares on the front for each rad session you have. With each rad treatment X off a square with the sharpie. Soon you will have all the squares filled in and you will be done! You can see your progress. and look toward the last treatment. Wear it to each appointment! I did during chemo and it was great to see the squares get marked off and the next thing I knew I was on the last chemo! All 6 months worth. Junk the shirt after….. for closure.
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If any of you are on Facebook, I'm competing in a contest sponsored by Juzo, and the first step to winning is to get a lot of 'likes.' The prize is huge--$5,000--and I would use it as seed money for a lymphedema conference I'm organizing in west Michigan. The director of Lighthouse Lymphedema Network in Atlanta spends her summers near me, and she asked if we might work together to put on a one-day informational conference for patients and clinicians alike, similar to the very successful conferences LLN puts on in Atlanta each year. I agreed (because I'm a glutton for lots of work), but there's a fundraising need, and when I saw the Juzo contest I just could not resist. It's a long shot, because there are some very wonderful competing entries. If you'd like to help, go to the Juzo Facebook page, then 'like' my entry. You'll see my avatar is the same one I use here, and the photo I put on Juzo's site is of me on my snowshoes. (In very puffy winter clothing..I look like a hippo-grrrr!)
Oh, and all in due time, I'll be posting for help with the conference from anyone who's nearby. It's going to be in 2015, date yet to be determined, and I hope that anyone within driving distance will consider coming. Anyway, more on that in the months to come.
Carol
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OK, Carol, all done!
Leah
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Leah, thank you!
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Carol - you and I are lagging in "likes", but it is hard to compete with those two wonderful children from Puerto Rico. What they have had to go through since birth! They are a total encouragement. https://www.facebook.com/dennisse.rivera.7?hc_location=stream
Question - Something new for me... Is there such a thing as "Rebound" Swell? How do you stop it? I take off my garments and within 5 minutes everything is swollen..
Edited for spelling.
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Well ladies, I had my last of 5 radiation treatments today. I start the next round of chemo on Friday. The radiologist/onc. decided to come in when I was finished and did a complete 360 on what she told me two weeks ago about the swelling going away after rads. Today she said that when the tumor shrinks, it will open up room for more fluid to move around and I should expect to spend more time with the PT. I was PO'd to say the least because this isn't anything close to what she told me initially. I'm so sick of these people!!!!!!! Of course my leg swelling has gotten worse since beginning rads. Totally discouraged and I just need to vent.
Sue
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Milehigh, My tumor never shrank after rads that much and it was identical to a hockey puck. I also didn't get LE for about 5 years after and I was very vigilant about diagnosing myself. I can tell you what my early stages were and what set it off. Sunburn and a campfire hand burn. My early stages were tired limb, heavy feeling.
This thread is for venting so go right ahead because some of our docs sure don't want to hear us vent. We validate your feelings girl and go right ahead and scream your brains out here, we are listening.
I am going to join you in screaming..... I HATE LE more than a thousand sun fires burning my body to a crisp........yah girl it feels good to get it out!
This thread is too quite lately.....any more ventors?
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Yes, I'll join you. I hate working out with both my arms in sleeves. It's so dang HOT! I hate that they are so expensive, especially since I need both sets. I hate that sleeves only last 4-6 months and I hate that Medicare doesn't cover them! I'm not even on Medicare yet....I hate that there is no cure and I have to explain LE to everyone, even doctors and nurses. So there!
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Thanks hugz! I could vent all day, lol. Your sharing about your tumor is so very helpful. Mine started at 7 cm and went up to 8 before rads. So if your tumor really didn't shrink, it didn't effect your treatment otherwise? You're doing very well......and giving me some great hope and encouragement to boot. Thank you, thank you, thank you. Doc said she could tell the middle of the tumor was starting to break apart by looking at today's scan. When they only talk about reducing pain rather than reducing the tumor, they're trying not to tell you to go home and wait to die according to the research. Not the only reason she got me PO'd. She's not my oncologist but was telling me what the onc. should have told me two weeks ago. She also said my pleural effusion was back and should she go ahead and make the appointment to have my lung drained. That's my doctor's job. I guess she just had me ticked off from the beginning and it went from bad to worse. I would have loved to have vented right there and then, ha ha.
Jeannie, join us in a screamfest okay? I agree that it stinks none of these "required" sleeves and lymphedema equipment are not covered by medicare or many insurance policies. I sure can't afford the stuff.
Sue
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I am joining today. A very well-meaning friend was trying to be encouraging to me, telling me "well, at least spring is here" and I said I really prefer fall, but I just didn't go ahead and launch into the full fury about how summer just SUCKS if you have to wear panty hose on your arm, never get to feel the warm spring breezes or sun .... how I dread summer!!!! Last summer was abysmal, I try to not even think about it. I am pretty sure I am going to be noncompliant on several occasions over the next few months and I am pretty sure I will be paying the price for it, but it will be my choice and I know what I am getting myself into this time. Last year I had no idea that it is possible to "cheat" just a little, kind of like cheating on a diet.
I was working on taxes and adding up medical expenses - all the LE stuff was the most costly out-of-pocket expenses I had. Much of it wasted, as well, because half the stuff (non-returnable, of course!) either didn't work or made things worse. I have several gloves and sleeves that initially seemed almost OK, but proved themselves worthless with continued use. ARRGGHH!!! I hate it that these have been used only a few times and now should I just throw them out? Is there a place where I could donate them for women who cannot afford them and they MIGHT be proper size? I know all the arguments the various companies make, that once they have been "used" they cannot sell them to someone else because of "health reasons" but I for one would be happy to use a "used" sleeve or glove if it was the right size, it just takes running it through the laundry for goodness sakes ....
Vent felt good .... will promise self to come back again sooner if I need to .... not good to keep this stuff bottled up!
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