GRRRRRRRRR I HATE LE..........
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Teka, the Belisse was developed by Lesli Bell PT, from Vermont, and at my CLT course the instructor said it was "unethically expensive": here is a page on Lesli and I would think if you contact her, she might be helpful
http://www.timberlanept.com/About-Us/Lesli-R-Bell/a~2479--c~335561/article.html
Here's the Belisse home page:
I have ordered custom Juzo gloves from the same fitter for 4 years and the quality and fit vary with each order. Unfortunately, my fitter just quit her job, so the next set, who knows??? I emailed her, but no response.
Kira
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Teka - I'm one of those self-pay patients.. but My LE therapist has tried other alternatives first - I have a champion sports bra ($16) and two jovipak circle pads that I use and it has helped with my breast and rib swelling.. I dread the idea of ever having to buy a beliese bra.. I have a Expand-a-band compression bra on order for night time - it, of course, is back ordered - total with shipping is $56 - I am hoping these less expensive options help. If not, Belise here I come... "Big Honey-don't" is doing better after LE therapy yesterday - DH is seeing a difference..
Speaking of DH - Since my dx of truncal lymphedema - he has been moody and standoffish - more than normal.. I don't know if it is just a coincidence with bill day or work or what... I am getting depressed because he doesn't want to talk about it.. I know our off schedules doesn't help matters but when we have time together - he decides he has work or he goes and plays on his computer... Can't get him to talk to our pastor or anything.. not sure what to do.. If I force it, it just gets worse and if I start crying (which I am now, just thinking about it) it only makes things even worse...I think he might be mad that I have to work 46 hours and HE can't support the both of us, like he did for 34 years of our marriage.. The last 3, even through tx I have had to work.
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You all have been so very sweet and kind and thoughtful!! I'm finally doing better - seems that when the bee sting went from my hand thru my wrist it somehow twisted my nerves like when children twist another child's arm with both hands in opposite directions but mine lasted 36 hours! It really was pretty horrendous! But things have finally gone down and the meds have worked and things are back to "normal" whatever that really means. Anyway, I'm so thankful and appreciative to you all for your help and information. I now know how terribly painful swelling can be and this is just not right that doctors do not take this into consideration when they operate. Having the lat surgery I've learned it all sets me up for LE so I just want to say how much I apprecate all your help for each other.
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So sorry 3jaysmom. It seems like I have seen you post on the arimidex post??? I read an article recently that said it can cause us to be more allergic to stuff. Wish I had bookmarked it but I didn't. It sure would explain my itchies I can't figure out. I still have no idea what broke me out in hives the end of May...I am beginning to think I am allergic to my shampoo but I need more time to figure that one out. Unfortunately..it seems I am slightly allergic to my new puppy but she's not going anywhere and I know my body will get use to her soon. She is so cute but teething horribily. I am so scared she is going to tear my garments up so I am not wearing them as much right now.
I must have done something right the other night because I lived in the bathroom. I measured my leg last night and despite me thinking it looks horrible it is only up 2 inches in a few spots...when I started it was four inches.
I saw a gastro. Dr. yesterday. yeah me not only will I have to have the EGD, he said he wanted to go ahead and do the colonoscopy at the same time. I have to find the money first since this is not a place I can throw it on my hospital bill. Anyway when I first went in the nurse took my blood pressure and wanted to take it again in the other arm...to which I immediately said she couldn't because of the LE. Well between the time I saw the Dr. she must have investigated LE because I was told three days before procedure over hydrate to make up for the fluid loss that would occur during the prep work and hopefully we want have any problems with the LE.
The good news...we should have AC sometime this week. awwwwwwwwww relief from the heat soon.
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I had a lymph node transfer from my neck and was told that there was a zero perent chance of neck lymphedema. Now I understand that isn't the case. Does anyone know of preventitive measures to cause me from developing neck lymphedema, just like no blood pressure etc., for the arms?
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How many of you had an LD and suffer from increased LE or truncal LE as a result?
I saw my PS and he is recommending a LD on the affected side followed by TE and then implants. I had an MX and radiation, I'm Stage IIIc, had 15 nodes removed (14 positive), already fight low grade LE in affected arm. The plan right now is Left MX with TE followed by Right LD and TE then implants in the future. I like my PS but I'm wondering if patients ever return to him with LE so I'm wondering if he knows how many of patients really have increase LE after LD surgery.
Right now - my thought is to go for the Left MX and leave it at that. I can wear poofy boobs that are light weight. I am 58 which is not the end of life but I have more days behind me than I do ahead of me and I'm high risk for reoccurrence. I am thinking the risks of LE and potential complications due to radiation outweigh having a perky fake boob.
Add to that I just don't want the fuss of time off work, then work restrictions (an annoyance for me and my employer), then re-gaining strength, then, then, then. I think I need one more surgery (Left MX) and call it done. It feels like LE is controlling my life but I'm thinking it will only get worse if I don't just stop the madness.
Thoughts, anyone?
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Hi Ohio, I don't have an answer for what you should do, but will tell you what I have done. I suffer from truncal LE after a BMX as well as arm LE on the side where I had thirteen lymph nodes removed. I am 51 years old, was 49 at time of DX, and had both chemo and rads. I seriously considered having recon to both sides, but then decided against it as the truncal LE that I already suffer with is painful enough. Even after my hysterectomy, my truncal LE flared quite a bit. I've endured five different surgeries for various things in less than two years and will need another on my right foot in December of this year. For me, the decision to strap on fake boobs when I go out and wear none while at home was much easier than contemplating more surgery and healing time. I hope for success for you regardless of your decision.
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ohio, have you checked out Barbara/"Erica"'s website about living breast-free? It has lots of pictures, resources, product recommendations, patient stories. Really a helpful site. It's here:
http://www.breastfree.orgSo hard to make these decisions!
Keep us posted as you move forward.Gentle hugs,
Binney0 -
Stanzie - Nice to see you are better - We were all worried about you last week.... A little encouragement, a call to the doc and a little prayer got you through. That is what we are here for.
Ohio - I just had a lumpectomy and margin clearing (nipple had to be removed). So I am no help with your decision.. but you know your body and what it can endure... We are here for you whatever you decide.. I know at this moment, at 57 years old, if the cancer comes back, I will have a BMX with no reconstruction... Funny thing, when I talked to my surgeon last and telling him of the pain I endured over this year (before he finally gave me script to see LE therapist) he suggested a MX as another way to get rid of the pain!! - a little drastic but in as much pain as this breast LE has caused me, I actually thought about it..
.. Now that I know it is LE - not sure it would do any good to take it off.. the LE would still probably be there, wouldn't it? 0 -
Exactly, Gma. Removing the breast doesn't fix the source of the problem, so you would most likely just continue to have pain and swelling. What I love about LE treatment is that is doesn't involve either surgery or drugs. Unfortunately, that is also why it is under-funded and not well understood.
Hugs,
Binney0 -
Binney - the breast LE is forever too isn't it? I think I have just realized this is for life
My LE therapist is thinking of switching me to every other week, or once a week... I'm not sure I'm ready - but he knows I have no insurance to pay for this and he is trying to save me money.. I am still thinking at least once a week until I find out about financial aid. I have been looking at the videos for self-MLD - most of them are more for arm LE - any that focus more on truncal.. I am thinking your paint roller might be the only way I will get the back as my husband just doesn't understand -"soft touch".. Sorry, Kind of a down day for me...
I've been having alot of those lately.0 -
Gma, it gets easier. Eventually you discover the routine that works for you to keep it in good control, you find the garments that keep you the most comfortable, and you get your life back.
Yes, to trying the paint roller. Maybe even take it with you and ask your therapist to help you work out the best way to use it.Had to laugh about your DH's lack of a "soft touch." Mine's the same way, means well but has a lot of trouble believing "gentle" will do any good. They just want to fix that sucker! Gotta love 'em!
But then you also gotta figure out a way to do your own back...
Hang in there, Gma! We're all in this together!
Binney0 -
Binney, Got to go find a paint roller today before my appt I guess. I think I will only be going once a week here on out.. I know the LE therapist has great confidence in my ability - I sound very knowledgeable when I talk to him.. but I'm not that confident in what I am doing.
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Gma--I have done a lot of reading and have become knowledgeable about LE--even work with a support group. But when it is MY LE the knowledge seems to go out the window. My therapist gently tells me "you know what to do" when I panic and lose my confidence. The arm LE has not been a big problem for me but the truncal is driving me crazy! I know what you mean.
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Thank you for encouraging me. I just got back from my LE T appointment.. He measured me again today and my elbow and mid forearm was more swollen... the upper arm stayed the same.. My wrist and hand was fine... And Becky and Jo - you are right - my breast was swollen when I went in but pain level is down this evening...
The fans are on and my office is still 80 degrees as we speak... We have a little mini air conditioner we use for bedtime in our room..
Binney was it you that was talking the "candy bar" not the kind you eat - My LE T made me 2 to take home and try :-) he is so nice... Talked to him about which way to use the paint roller - he thought it was an awesome idea! Especially when DH is too rough..
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Well hell,
Thought my left arm swelled up two weeks ago. Since then, I have not been able to recreate the conditions to cause any swelling. I'm thinking, "Now my therapist won't believe me." This evening, I was putting together a barbell and my left hand is swollen between my pinkie and ring finger.
Welcome to the wonderful world of lymphedema.
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nibbana - when mine first started it came and went. I was embarrased when I first saw my therapist because my fingers were so skinny. But over a period of weeks, she saw and understood. I'm so so sorry you're here.
There is no better place for LE wisdom, knowledge and support than the ladies here.0 -
Ohio, I'm behind in my bco reading, so I'm skimming a bit. Regarding your question about an LD reconstruction and LE risk, did anyone suggest asking your LE therapist's opinion? One microsurgeon, Dr. Marga Massey, says she is not in favor of the LD flap because the muscle is being rotated around the trunk from back to front, and of necessity it plows through the lymphatic vessels along the way. Not her words; I'm paraphrasing. Dr. M specializes in free-flap recons and is not a fan of any of the pedicled flaps. It's probably worth thinking about, and were it me, I'd chat with an LE expert about that question of moving the flap through your lymphatics in and around the axilla.
Have you been able to spend any time in the recon forum to read the many, many perspectives on recon options?
Carol
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Nibbana, are you handling that barbell in a sleeve with glove or gauntlet? And barbell in July after a May bmx--that's a very fast return to some hefty weights. I'm guessing you were lifting routinely for your fitness program pre-surgery, so 'hefty' may sound exaggerated to you, but the weight lifting-and-LE research points pretty clearly to a strategy of post-surgery re-start using very light weights (silly 1-lb dumbbells) and then moving up slowly but steadily until you are where you were before the surgery. Ultimately, no upper limit, so long as you add slowly and monitor your LE responses throughout, backing off for a time if you do swell or tingle after lifting.
It's natural to want to get back to life as we knew it, but I'd hate to think you might be setting yourself up for LE pushback that you might avoid or minimize by slowing the pace of your return to lifting.
Anyway, best of luck--I hope your therapist accepts what you tell her, in addition to what she can see, because she should know that LE symptoms change constantly. Someone once said we'd all have earlier LE diagnoses if our surgeons would have consults at 7 pm, when we're swollen, instead of in the morning when they have office hours!
Carol
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Carol - I did surf through the recon forums and plan to spend some more time there. I got to Dr. Massey's website a few days ago. She confirmed my wariness about the LD. My gut just doesn't like the idea.
I just found an LE therapist in my area and meet with her on Monday. She is not CLT but attended the courses and learned Vodder. She is a sister to a friend of my sister. I talked to the therapist first time yesterday and she was very up front and honest about not being CLT. She is a massage therapist and learned about LE to care for her mother. I'm hoping she is good and plan to ask her opinion just not sure about the difference in knowledge between massage therapy and physical therapy and how that plays into LE training/knowledge. Time will tell. (It's sort of like the difference between an orthopedist and podiatrist
.I am leaning towards going with my gut feelings and not doing the LD and reconstruction. I have plenty of time to decide. Surgery won't be until end of August or early September. It will give me time to figure out if my decision is based on doing the right thing for the long term or if I'm just looking for a way to get all this behind me. It may be a bit of both but I have time to get comfortable with whatever I decide.
Thanks for information. The LE train is definitely a bumpy ride with little warning of what lies ahead.
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Ohio, So many cosiderations and decisions! Gut feelings count a lot, in my book. Mine sent me straight to recon. I'm not sure why. I had LCIS, in both breasts, and even though I'm BRCA negative, my family history --mom, grandmother, aunts--propelled me instantly to decide on bmx. The reason for that part of my instinct is crystal clear to me. I'm not so sure why it was also an instant decision to do recon, because at 57 they're hardly essential equipment and my wonderful DH would support me in whatever direction I chose. Yet I never wavered, although it took some research to decide on which recon option felt best for me. I had bilateral diep, and it was anticipating that long surgery that propelled me right into the gym (after about oh...ten years off for bad behavior!) to try to get stronger in the 11 weeks I had before surgery. That's probably a big reason my recovery was pretty darn easy, and I am so very glad I went that route. One very good thing is that we all have the choice of immediate vs. delayed recon, so if you're unsure, you can always give yourself more time to decide on the recon part of the process.
On your therapist 'find,' I think some of the women here are working with wonderful therapists who have the same background as yours. Maybe one of them will chime in on her experience.
Keep us posted on what you learn about recon/LE risks. There may have been a study on that and I'll try to poke through my enormous study pile to see if I have it somewhere.
Carol
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OH GOD HELP ME!!! I can't live like this - I hurt everywhere this morning - no fever just feel like crap - my "Precautionary" sleeve I wear for work hurts, my boob hurts, my ribs hurt... What the hell did I do over night to feel so bad this morning!!!!@#$@$@- Sorry, just had to scream somewhere - I can't do it outloud - DH is still sleeping..
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GMA..........oh girl I feel so bad for you, but "get it"............I always say "some days are diamonds, some days are stone"............if that is true, then why do I always end up in the "rock pile".......................I think to myself each and every morning upon waking, and each and every night going to sleep.........................Will I ever feel like myself again........................I truely doubt it.................
Whenever some "ass" says to me..........'you look wonderful..............you look great...........I say to myself...........really, really, well either you never saw me when I looked "really good", or you never saw me at all..".............................please don't tell me how great I look..................they have no idea what we are dealing with on the inside..............just the thought that we never know for sure what tomorrow will bring is bad enough, then they add on treatments, medicine that destroys the body..........loss of QOL.............so please don't tell me how "wonderful I look"...............walk in my shoes for a while.......you won't make it to your front door.............
Sorry, but I know how you feel, and my heart goes out to you.............I have threatened to go off my Femara, just to feel like myself "one more time"...............really, what kind of a life do we have living each day in "pain" of some kind................after a while......no one wants to hear you, so you shut your mouth and deal with it................and you feel so alone.........................but we're here for you, and we all "do understand" w;hen no one else does.......................I'll say an extra prayer for you tonight, so maybe tomorrow will be better......God I hope so..............hugs my friend
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GMA..........oh girl I feel so bad for you, but "get it"............I always say "some days are diamonds, some days are stone"............if that is true, then why do I always end up in the "rock pile".......................I think to myself each and every morning upon waking, and each and every night going to sleep.........................Will I ever feel like myself again........................I truely doubt it.................
Whenever some "ass" says to me..........'you look wonderful..............you look great...........I say to myself...........really, really, well either you never saw me when I looked "really good", or you never saw me at all..".............................please don't tell me how great I look..................they have no idea what we are dealing with on the inside..............just the thought that we never know for sure what tomorrow will bring is bad enough, then they add on treatments, medicine that destroys the body..........loss of QOL.............so please don't tell me how "wonderful I look"...............walk in my shoes for a while.......you won't make it to your front door.............
Sorry, but I know how you feel, and my heart goes out to you.............I have threatened to go off my Femara, just to feel like myself "one more time"...............really, what kind of a life do we have living each day in "pain" of some kind................after a while......no one wants to hear you, so you shut your mouth and deal with it................and you feel so alone.........................but we're here for you, and we all "do understand" w;hen no one else does.......................I'll say an extra prayer for you tonight, so maybe tomorrow will be better......God I hope so..............hugs my friend
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GMA...........my trigger finger (thanks Femara), sent the message a second time.............
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Ducky and Everyone else here!!! - I understand how you felt a few weeks ago when you were just going to give up... I have just started this LE "management" and yesterday, not just the truncal but the arm was swollen.. I realized it is a constant fight we have to do to "Manage" the LE.. Problem is I don't feel I can do this.. I wish we could all run and hide from this @$#@%!@%! I guess the realization that this is another "chronic" label and the LE T was talking "managing LE" - I am down down down.. Please keep talking to me girls... I don't feel very good about this I can't even GRRRRRRRRRR anymore..
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Jo-5 My LE T gave me 2 jovipak swell spots that have done wonders for my scar.. but you have to call them - they don't show the prices... http://www.jovipak.com/basic.html (Jo: guess that is one positive thought for the day) Keep talking girls...
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Gma, I can tell you two positive things:
1. This gets easier
, and,2. We're all here for you
!And we all get it. Be kind to yourself. There's grief involved, and good grieving takes time. You can do this!
Giant, gentle hugs,
Binney0 -
Is my arm supposed to ache in the sleeve? well second thought it seems to be aching all the time at the moment - with or without Is my arm and ribs/breast aching because it is swelling and I need to go do my self MLD? I am trying to work (home computer job) through this since 4am.. I am really having trouble keeping it today - mentally and physically... 0
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Yes, Gma, I hear you. This is really tough, no question about it.
Hang in there! Constant achiness is an indication of an unhappy LE arm (or chest). Doing self-MLD is a good start, but when you're cranked up from pain and frustration it can be VERY hard to do that well -- instead of being able to relax and to use that slow, gentle skin-stretching motion, we get too fast and too firm and can make things worse instead of better. So go lie down with some very slow, quiet music, take some slow, deep abdominal breaths, and try to do as much as you can of your self-MLD routine.
The most important parts to emphasize right now are the neck node clearing and then the chest clearing. So if more than that is too frustrating to think about, just do that much. You can do it every couple of hours, but each time you have to slow yourself down and relax so you can do it with gentle patience.
Are you staying well-hydrated? Hard to remember all the time, so put a supply of water close by, with a pad of paper and a pencil so you can note the time whenever you take a drink. That way you can see your own progress with staying hydrated, and it gives you something to congratulate yourself about. We NEED that!
I see from your signature that you're aware G-d loves you and is with you through all these "hoops," so remind yourself of that, and start talking to him about this. You don't have to use nice language--he gets it!
Forgive me for not remembering, but, do you know how to wrap your arm? If so, VERY slowly and gently, wrap it. Don't get too tough about it. Pretend it's somebody else's arm and you're being as gentle and sensitive as possible with it.
Go ahead and cry! Or bellow. If you have to stop work to take care of yourself, do it. This is NOT an easy road, but you're not walking it alone--we're all here with you. Do what you need to do to take care of YOU. You're that important!
Hugs, prayers,
Binney0
