GRRRRRRRRR I HATE LE..........
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Kay,
MLD is Manual Lymphatic Drainage, and it is the gentle massage you learn to do from the LE therapist.
I've been around for almost 5 years on this board, and I still have to figure out some of the shorthand!
Dawn
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I wish I could. They brought in this lady to help out with the overload they have had in the clinic. The hot summer and high humidity took it's toll on LE patients in our area. Plus the therapist who is the head one is having her own issues hoping to carry her baby to 38 weeks...she has 5 more weeks to go.
So I guess I am stuck with her for now. When I first went to the clinic and my second visit, I have little swelling in the trunk. That has changed and I really need to know how to take care of this so it doesn't happen again..
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My post has nothing to do with LE directly, but everything to do with me being ticked off and sick of breast cancer being used for profit. According to this article, Komen came out with a position that BPA has no connection to breast cancer, in spite of many research articles proving otherwise, and many people trying to rid their lives of this BPA substance. It seems so against "finding the cure" to me that I want to scream. I am suspicious of the Komen group to begin with, and this article sent me over the edge. For today, I may be hating Komen even more than my LE!! http://www.naturalnews.com/033837_Komen_for_the_Cure_BPA.html
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"I hate my glove!" So yesterday I went for my annual one-side mammogram. The technician commented on my sleeve, saying she had seen sleeves before but had never seen anyone wearing a glove. I explained the reason/need for it and couldn't believe it when she actually said (all chipper-like), "Do you like wearing it?" This was right after I told her what a pain it was and how I frequently have to take it off and on at work during the day as it can be very bothersome and interferes with using the computer.
My emphatic response: "NO, I DON'T LIKE WEARING IT!"
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Dumb question. People really can be so stupid!
[[hugs]]
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Remember, ladies, there's no cure for STUPID!!( unfortunately, non for bc, either... YET) but stupid is FOREVER..............3jays
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Thank you for the warm welcome and brownies
. I'm going to my 3rd LE therapy today. I REALLY like my therapist and I'm seeing improvement in my shoulder and reach already. My swelling is there, but it isn't too bad and it isn't in my hand and fingers. At this time, it seems to stop at my wrist.kira - Thank you for the link! I hadn't read it, but my LE therapist had talked to me about much of what was on there. It gives me more confidence that I'm seeing the right person. I definitely have cording, and we are working on it.
It seems like this LE is going to be a rollercoaster ride, at least until I'm done with chemo and reconstruction....maybe forever. Knowledge is power, so I love all the helpful links.
Well, it's almost the weekend....I love brownies, but how about jello shots for all!! I hope everyone has a fantastic weekend
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I have a Question. Is it normal to feel a bit nauseous after doing LE exercises? I've noticed a queesy feeling after doing my "Remedial Exercises fo the Arms". It could also be the chemo.
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Kelli, early on in therapy anything that moves a lot of lymph fluid can make you a bit queasy or cause your abdomen to feel achy. Doesn't happen to everyone, but it's fairly common. I've never heard an explanation for it. Usually goes away pretty quickly as therapy continues.
Then again, chemo will do that to you for sure!
This, too, shall pass!Gentle hugs,
Binney0 -
Thank you Binny.
It's happened a few times after doing my LE exercises. It's not a huge deal, definitely not big enough to stop me. I'm sort of past the nausea phase for this round of chemo, but you never know. I'm just glad to hear that it's not unheard of and that it should pass
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Oh, I'm really ranting today. Yesterday I got a call that the machine was down and they had to cancel my radiation. Well, on the good side I thought I could keep the arm wrapped which they wanted me to do rather than taking it off for rads every day and then putting it back on after. Last night I was itchy under the wrap but didn't think too much of it. Today when I took the wrap off just before radiation, it was very red and swollen. I got scared there was an infection. LUckily I was at the right place and went to the clinic. Everyone agreed it was not an infection, but a contact dermatitis. Saw the LE therapist after the clinic. He didn't think it was an allergy although he said 5% of people are allergic to the material. He gave me a different material (all cotton) which will touch the arm, but said not to wrap it until it isn't red any longer. He thinks it was caused by friction rather than an allergy though. Also have cortizon cream from the clinic to put on it. It already looks a lot better. But I am so disappointed to have another bump in the road. He did teach me some MLD though. Again, I can't do everything though because I have a port still in for Herceptin. Also once the skin gets red won't be able to do under the arm. Oh, well, I did like getting the massage. Never had a massage, but I think I will have to start getting them. Or are they not safe to get with lymphedema? So glad I have this thread to vent on. Grrrr!
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Kay, I'm so sorry you have another bump in the road! Sometimes these bc road bumps feel like boulders.
BTW, I have a port and have no problem doing MLD with it, nor does my LE PT have trouble with treatments.
Leah
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Thanks Leah. My port is right in my clavicle where PT said he would usually start the MLD. He said he wouldn't massage that because of the port being there. Otherwise it didn't interfere. Is your port a different location?
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Kay my port was in that spot also but my PT said to either direct it above the port or just below. So I split my fingers and did it both. lol half my finger above the port and the other half below. You also don't want to move fluid in any of the area that radiation is in. My rads went up to the clavicle so I do it all now above or right on top of my clavicle. I have been doing fine this way. My flare is from my salt food intake. You would think lesson learned but no I have had lunch meat for lunch this week.
I am having a flare with my taste. Does anybody still have this problem. I threw away more food the past two days because it either smelled bad or tasted awful. Why in the world a ham sandwich with Miracle Whip tastes like heaven I don't know. I hate sandwiches normally.
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Hi Ladies,
I have a question--I developed axillary web post-lumpectomy. I found a great PT and was going for 7 weeks and I almost had full range of motion. Haven't gone for a week--too many med appts--and my arm is losing motion and I have the same constant pain! Is this a relapse, or maybe I just was not done with the therapy? I was almost to the point where you couldn't see the cord in my armpit, and now it has popped out again! So frustrating! What do you all think?
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Victoria, cords are notoriously hard to eradicate. Three years later, a cord in my elbow crease will still show up at times.
Does the PT have you doing stretching exercises at home?
Kira
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Victoria,
I am having problems with cording on my trunk. It seemed almost resolved and resurfaced last week. I think I overdid it over the weekend. I see my therapist today. She did teach me stretching exercises and it does help if I go slowly. So hang in there.
Becky
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I have cording with the LE too. Had it even before surgery and went to a PT just once. She gave me stretches to do and it went away before surgery. It came back and is still there, but I think if I keep up the stretches it will keep improving and eventually go away again. I don't really know if it's something I'll have to keep up even after it's gone to keep it away or not. I'm sure there is someone else here more knowledgable than me who will comment. Good luck.
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Kay, quick answer to your question about massage after bc treatment, since it seems to have gotten lost in here. No deep massage to the quadrant(s) where you had surgery or rads. (For "quadrant" think chicken quarter -- wing, side, back, chest from the waist to the neck).
Gosh, I hate giving out bad news!
Binney0 -
it twas a good day, saw the NYC LE, I walked in and she said, "you look like you lost ten pounds", and all but one of my measurements were down at least 1 CM!
Boob has been having a tough week since my mammo, pores were very enlarged and kind of purple yesterday. Better today.
I got my Belisse bra, should probably post about it in the breast LE thread. And I went shopping for grown-up bras. They are willing to try lining one of them with silverwave fabric, I just wish it were not so $$$.
I have been wearing underwires more...they just seem like the lesser of two evils...the non underwires just cut off my flow too much.
Over and out!
(Isn't it ironic, when someone says I look thin, I feel like eating healthy, when a doctor tells me to lose weight, all I want to do is EAT!...I'm not saying they should lie, but just a thought!)
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cookiegal, I totally get the eating thing. It is rather ironic though.
Binnie, information is always good, whether it's what you want to hear or not. Now that I have been going to the LE therapist, I have a lot more info than I had when this first started a few weeks ago. He taught me the massage. There seems to be some differences like there are with everything else in BC between PT therapists as mine said it's not worth the reward to risk doing anything near the port. He did tell me no deep massage to the surgery/rads sites. Thanks for reminding me though because I completely forgot he said that. Okay, this is the opposite of a grrrr, but I really like the massage. I wish I could go get him to do that all the time. I've never had a massage before, but I think I have been missing out.
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Cooke!!!
Totally get the eating thing: I went to the natiional LE meeting, and flew in and flew out in two days, and sat next to a researcher, who I know, and she said "You've gained weight." But then said "But it looks good on you."
Well. Two days of flying and hotel food, and feeling fat and being told I look fat, YUCK!
I need to exercise, and there was a while that my DH was drowning his sorrows of his herniated disc in chocolate ice cream, and I was joining him out of sympathy.
Cookie, I'm sure you look gorgeous and amazing.
Kira
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Okay, here's my current issue: my parents are visiting, and last visit my mother's response to my gloves and wrap was to call my sister and tell her how much it upset her. And when I called her on not talking directly to me, she sobbed "I can't stand to see you in so much distress."
My mother does not have a strong track record of nuturing. I've over-reacted and hover over my daughters, until they quite literally tell me to back off....
Now, she just stares at my wrap, but makes no comment, but she's in her late 70's, quite frail and tries to grab everything out of my hands, so I don't carry anything.
GRRRRR
As my LE therapist told me about something that happened to her: "This is not all about you."
Kira
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kira - I don't know what to say except sending virtual [[[[[[hugs]]]]]] and pass the brownies, please! xo
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Kira
Strength and HUGs to see you thru your Fam Visit!
My family Radar has been perking up seeing me in chest serratus pads/ compression shirts/ and the whole sleeve n glove thang..... <spit!>
Question for you all, is it possible to lose or gain 5-7 pounds with Truncal LE/ flares and when it quiets down?
I just met these Jovi chest serratus pads.. they wrap around your chest/ pit into your back and almost looks like I have Wings. I am finally getting relief of chest/ pit/ back pressure and fullness that leaves me so wiped out...It has been 16 months since my BMX, and now this long to figure this out. So hoping I can build up my STAMINA, as LE is tiresome and no one seems to understand that.
Vanilla Choc chip brownie request ok?
hugs
brazos
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Kira--I hope you are surviving with your family! Just had a heated discussion with my mother who lives with me about NOT turning the heat up so high in the am with my hot flashes! Made me think of you. She refused to listen. Says at 90 yrs old she has a right to be comfortable. Oh well what is a little heat on top of a hot flash. I should have stayed in the tropics! Becky
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Becky, I give you so much credit for hanging in there: I've lived on the other coast from my parents for almost 30 years, and still there's so much baggage, and I do understand that we defer to our elders, but still....
I just took them to the airport, and in all the time they were here, the words breast cancer or lymphedema did not cross their lips. Clearly not topics for conversation.
I always feel guilty that I'm not a better person and can't seem to rise to the occasion, but I guess I have to accept that we do the best we can.
Can your mother just have a space heater in her room? I believe you have a right to be comfortable as well. IMO
Kira
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Kira, I am thinking of you and hope you are feeling strong while family is visiting. Sometimes "This is not all about you" is eye opening and lightens your load. A therapist I saw years ago - mostly in response to my non-nurturing and critical mother - once remarked, "This says more about her than it does about you." Thank goodness for that insight - I have thought of it countless times in situations when I questioned myself in my reaction to my mother or as a self check when I've been around an aggressive or hostile person.
Taking a brownie and passing them . .
Brazos, when I have a flare, I definitely feel wiped physically and emotionally. I don't have a scale, but wouldn't be surprised if there is weight gain associated with a flare. I can remember how much I had to urinate after MLD therapy sessions. When I do the Lebed exercises, it's the same thing. I also think walking a couple of miles does it, too, and it's not because of the additional water I drink. I do up the water intake, but I notice my torso feels trimmer after a walk, and I think there is drainage that occurs with all the deep breathing and movement from that activity. What kind of compression shirt do you wear with your inserts? Just asking because sometimes I have to wear round 'swell spots' inside my tank.0 -
Oops, Kira, you posted while I was composing. Well, now that they have left, you can take some deep breaths and reclaim your personal reality and space. Yes, I agree we do the best we can. Please, no guilt! Have a brownie . .
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Kira, My family is like that too. My mother has Alzheimers and it is advanced now, so there is no way to know how she would handle it. But my older sister never mentions it. She is the caretaker for my mother so I see her a lot. I do think I had a very loving family, but we just never talked. I don't think my mother ever once said she loved me or ever kissed me. I think she did kiss and tell my kids she loved them though. I know my grandfather was very loving and always kissed me and told me he loved me. Not sure why my mother was like that. I know she did love me. Gotta just let it go and try not to repeat it.
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