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GRRRRRRRRR I HATE LE..........

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Comments

  • PinkHeart
    PinkHeart Member Posts: 271
    edited September 2012

    Rocket,

    I'm curious why the surgeon removed 13 nodes when zero were positive?

  • Cindyl
    Cindyl Member Posts: 498
    edited September 2012

    Pink - Don't know about Rocket, but 4 of mine lit up when they did the SNB 3 others looked suspicious and were very close to the tumor so my surgeon wanted to do a full pathology on them.

  • gmafoley
    gmafoley Member Posts: 5,978
    edited September 2012

    Ok ladies, 

    I remember somewhere in here we were talking about lotions that won't hurt the garments.. I need something for my feet too and would like to get an all-around type.. My problem is my asthma flares with floral scents including lavender... You have any ideas??? 

  • nibbana
    nibbana Member Posts: 349
    edited September 2012

    Gma,

    If you have a Whole Foods nearby, Everyday Shea makes big bottles (32oz) for $10.  It's been fine for my garments, no bad stuff in Whole Foods products.

  • nibbana
    nibbana Member Posts: 349
    edited September 2012

    Gma,

    If you have a Whole Foods nearby, Everyday Shea makes big bottles (32oz) for $10.  It's been fine for my garments, no bad stuff in Whole Foods products.

  • nibbana
    nibbana Member Posts: 349
    edited September 2012

    Gma,

    If you have a Whole Foods nearby, Everyday Shea makes big bottles (32oz) for $10.  It's been fine for my garments, no bad stuff in Whole Foods products.

  • nibbana
    nibbana Member Posts: 349
    edited September 2012

    Gma,

    If you have a Whole Foods nearby, Everyday Shea makes big bottles (32oz) for $10.  It's been fine for my garments, no bad stuff in Whole Foods products.

  • gmafoley
    gmafoley Member Posts: 5,978
    edited September 2012

    OK Think I got it Nibbana - Whole Foods and Shea! LOL

    Binney, Kira and other knowledgeable ladies - Short Version:

    I had my appt with my PCP to discuss my Left Arm (good one) - He comes in the room and says, "how are you and what's up with your arm?"

    I told him about my shoulder surgery 8 years ago and swelling in upper arm - but did not know about LE at the time so I paid no attention to it.

    Then told him that after the year of swollen painful Breast went to the LE therapist - When the LE T. measured my arm for the first time the Left arm was quite a bit larger than the right (dominate) arm.. My LE T and I thought that unusual but worked with it...  Then the left arm got worse when we were doing MLD and pushing away from the compromised side over to the left and down.. Got it under control, then I had the Lumpectomy in August and it flared it up again..

    I also told him about a lump on the inside of my upper left arm and the surgeon, over the phone, told me that my whole arm would be swollen if it were a clot.. At that point the PCP looked at the lump and decided that it was probably nothing but lets get an ultrasound to make sure - It could be a superficial clot.. I said ok... 

    I then gave him a report from the LE T, my measurement over that last months and a pamphlet about what doctors should know about LE -  PCP says, "I'm pro Lymphedema. I understand the issues." and then I said, "Great. then you can share this with some of the personnel that aren't quite as "informed" as you."  He says, "Thanks, I will do that."  Things were going so well...Tongue out  He goes on to point at the LE T report and says, "I really don't think there is any concern about the lump, we are just making sure.. I think you are on the right track and it is probably LE from the looks of it."  I then asked the QUESTION..."If that is the case, and it is LE, then where do you do the BP and/or labwork?" - I also said that The lab tech says they won't take it from another part of the body and I was told that I needed a doctor's order to do that... He said, "just have them do it on your LOWER ARM where its not swollen.." He wouldn't write me a doctors order... I guess I will have to try another doc... GRRRRRRRRR

    BTW, venous ultrasound is on Monday... one step forward..two steps back... I don't know what to do...

  • nibbana
    nibbana Member Posts: 349
    edited September 2012

    Ok, I think I got my point across, lol. 

    Why didn't it stop me from posting so much?

    Ah well, all hail Whole Foods and shea! 

  • KittyDog
    KittyDog Member Posts: 656
    edited September 2012

    Vanacream is what Kira? suggested to me back when I had my allergic reaction to Eucerin.  Wallgreens sells it in the lotion area on the bottom shelf.  It's sticky so you can't put it on and then try to put your compression garments on.  

  • binney4
    binney4 Member Posts: 1,466
    edited September 2012
    Kitty, Vanicream also comes in a "lite" formulation that is not sticky. Odor-free, no nasty ingredients, easy to use with garments.
    Binney
  • hugz4u
    hugz4u Member Posts: 1,818
    edited September 2012

    So I am at a dinner table and 10 people are sitting around it. This guy I hadn't seen since my diagnosis is sitting about 5 seats away from me. He never misses a beat,especially since he worked for the CIA and you know those guys notice EVERYTHING!. Anyway he was feeling pretty happy after a few drinks and he says loudly across the table. "So what's wrong with your arm." Oh my..... I just knew someone was going to ask but I never thought it would be him. I actually thought it would be the new man I met who was a recovered burn victim sitting 2 seats away from me.  

    Suddenly the room seemed quiet as he said it. I was soooooo.... embarassed, I shrank and I just blurted out. "Complications."  Thank goodness he had the brains to stop asking after the first question. He caught on quick and later, found me alone and he apoligized twice and so and I explained further. I think he felt so bad that it made me feel sorry for him. Of course I felt like every other eye was on me though. Grrrrr. Why does stuff like this spoil our fun! 

  • gmafoley
    gmafoley Member Posts: 5,978
    edited September 2012

    Had a scare last night - when I was getting ready for bed, my breast scar started leaking... a hole where the old scar and the new scar were connected appeared... I leaked about an 1/8th cup of fluid before it stopped. Went to ER the doc says he doesn't want to close it so get a pad and let it leak.. I have to watch for any sign of infection... it is leaking orange this morning..watching for any redness etc...

    I had to go get nursing pads last night - who would have thought - I told doc in ER last night - "they took my nipple already - I don't need to leak!!!" LOL

    Again, being the left arm wasn't diagnosed "for sure" they took BP on the forearm... LE flare, I am waiting for you to appear Undecided  - It's hard to fight what they are doing by yourself and you are in pain and leaking all over the place.. Needless to say my BP was 181/111 and they wondered why! GRRRRRRRR I hate LE...

    OK now that I vented - good news is - the fluid leaked out and took the pressure off my breast... unfortunately it is still leaking this morning.. Someone, somewhere says, "Better out than in" - just not what I had planned - Should I be putting neosporin on the open spot???

  • gmafoley
    gmafoley Member Posts: 5,978
    edited September 2012

    Hugz - Man - I can't believe what some people say .... I hope you have recovered - it doesn't get me embarrassed anymore - it just gets me mad!

  • binney4
    binney4 Member Posts: 1,466
    edited September 2012

    Gma, sent you a private message. Ah, these little "surprises!" Grrrrrrrrr!

    Hugz, that's got to be about as bad as it gets. And there you were being brave and public and wearing the stupid garments. Good of him to apologize--bet it ruined HIS fun too to realize what a boor he'd been.Tongue out But I have to say I think your answer was brilliant. One, very loaded word: "Complications!" Just perfect! It's a very complicated complication, to say the least! So hey, high fives and something deliciously chocolate to celebrate your stunning performance!Laughing

    Okay, everybody

  • binney4
    binney4 Member Posts: 1,466
    edited September 2012

    Gma, sent you a private message. Ah, these little "surprises!" Grrrrrrrrr!Yell

    Hugz, that's got to be about as bad as it gets. And there you were being brave and public and wearing the stupid garments. Good of him to apologize--bet it ruined HIS fun too when he realized what a boor he'd been.Tongue out But I have to say I think your answer was brilliant. One, very loaded word: "Complications!" Just perfect! It's a very complicated complication, to say the least! So hey, high fives and something deliciously chocolate to celebrate your stunning performance!Laughing

    Frosted brownies all around!
    Binney

  • binney4
    binney4 Member Posts: 1,466
    edited September 2012

    Gma, sent you a private message. Ah, these little "surprises!" Grrrrrrrrr!Yell

    Hugz, that's got to be about as bad as it gets. And there you were being brave and public and wearing the stupid garments. Good of him to apologize--bet it ruined HIS fun too when he realized what a boor he'd been.Tongue out But I have to say I think your answer was brilliant. One, very loaded word: "Complications!" Just perfect! It's a very complicated complication, to say the least! So hey, high fives and something deliciously chocolate to celebrate your stunning performance!Laughing

    Frosted brownies all around!
    Binney

  • gmafoley
    gmafoley Member Posts: 5,978
    edited September 2012

    picking yourself up

    Help, I can't carry myself without you all! 

  • nibbana
    nibbana Member Posts: 349
    edited September 2012

    Ok for all of you who wear sleeves on both arms, how do you cope?

    I get so oppressively hot, I have no skin surface. I feel like a dog, maybe I should pant.

    Garments on both arms, plus Tamixifen hot flashes, it's really hard to cope.



    Makes me want to go, grrrrrrr I HATE LE!!!!!!!!!

  • mags20487
    mags20487 Member Posts: 1,092
    edited September 2012

    nibanna..I know it sux being bilat LE...I take the sleeves off for a few minutes a few times a day because I just know that I will pass out from the heat.  I live in Florida and it is still over 90 here...ugh..  all I can say is that everyday it gets just a little bit easier to deal with it.  Guess I am adjusting to this new "normal"  I wear shorts whenever I can and am fortunate enough to be able to wear them to work too. 

    Maggie

  • hugz4u
    hugz4u Member Posts: 1,818
    edited September 2012

    Nibbana, I feel like the 3 hebrew boys that were thrown into the firey furnace wearing one sleeve, glove with a shaper. I really don't know how you do it bilateral, You deserve metals, chocolate and whatever makes you feel half decent. Wink

    Remember to make sure when you take off your garments to touch your skin and feel different surfaces. When I take my glove off at night if feels like rubber until I resensitize it.

    Here is my question and a grrrr to.  I am now cooking healthier meals from scratch (lots of stir frys) which means alot of veggy washing and chopping. I put a plastic medical glove on top of my LE glove and within minutes of preparing meals it gets sweaty but I don't dare take it off because it will get wetter under the tap preparing the meal.  And then once you get the olive oil frying, it wants to come out and stain your garment so the plastic gloves stays on.   I prepared 3 different meals in 2 hours and my glove was practically wringing wet. Isn't that a good way of getting bacteria started?   OHHHHHHH What to do?Yell  Any ideas! grrrrrr.

  • sandcastle
    sandcastle Member Posts: 289
    edited September 2012

    When I am cooking and doing any prep in the Kitchen I remove the gauntlet.....Liz

  • gmafoley
    gmafoley Member Posts: 5,978
    edited September 2012

    I know this isn't resting and I'm still leaking but had to pick them for sauce... I did it the way you are supposed to...all the precautions.. and I sat down on a foot stool...

    tomatoes

  • binney4
    binney4 Member Posts: 1,466
    edited September 2012

    Nibanna, I don't know where you live, but if it isn't really humid you can get away with misting your garments from time to time with a spray bottle of water. I live in the desert, so it works well for me. Let it dry between wettings, and if it takes longer than 15-20 minutes to dry don't do it because you don't want to encourage bacteria, fungus or other nasties that love warm, moist places. In the house I use fans. I stay in during the hottest part of the day, and I spend at least an hour every evening at home with no garments on (can't do much with them off, but I need the time out of compression in order to stay sane.

    When I'm chopping and cooking is often when I most need hand protection. You should get new garments every six months, and when you do you can save the old ones for kitchen work.

    This is not easy, but as Maggie says it does get easier. Hang in there!Smile
    Gentle hugs,
    Binney

  • nibbana
    nibbana Member Posts: 349
    edited September 2012

    I live in the greater Seattle area. One thing that worked is putting a cold bandana around my neck. Getting cold on the carotid artery and major vascular system keeps the core cool. I'll try misting the garments lightly and see how fast they dry.

    Thanks for the tips! 

  • KS1
    KS1 Member Posts: 161
    edited September 2012

    Nibbana, 

    I only wear a sleeve and glove on one arm, but I do wear compression t-shirts and stockings (venous insufficiency). I think the type of fabric makes a huge difference heat-wise.  This summer, I switched form juzo's regular compression garments to their silver compression garments (juzo soft silver stockings, juzo silver expert glove/sleeve).  They are cooler and gentler on the skin, but they are also more expensive and seem to be a bit less sturdy than the non-silver versions.  

    I also switched from wearing a shapewear camisole (control it) to wearing a hot weather sports compression t-shirt that is designed to wick sweat.  Even though I wear the t-shirt over a jovipack axilla pad) that covers 1/3 of my trunk, it is still cooler than wearing shapewear.  KS1

  • gmafoley
    gmafoley Member Posts: 5,978
    edited September 2012

    sleep

    I so understand this... I'm having a vascular ultrasound on my arm today... I have 2 doctors that disagree with what the lumps are in my arm and one says I also have LE in my good arm and the other says its not... Undecided Wish my team could get it together... Guess we shall find out if its  superficial blood clots or lipomas. But it is a guessing game, even for them, isn't it.. 

  • Marple
    Marple Member Posts: 10,154
    edited September 2012

    Good luck today with the u/s Gma.  I hope you get some answers.

  • gmafoley
    gmafoley Member Posts: 5,978
    edited September 2012

    Thank you Marple... I just want answers so I can move on...

    Oh BTW ladies, I'm still leaking but not unless I get active... Does that mean it is now leaking LE fluid???

  • proudtospin
    proudtospin Member Posts: 4,671
    edited September 2012

    GMA, what does your doc say about the leaking? sounds like a call is in order to me

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