GRRRRRRRRR I HATE LE..........
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One thing the article points out is that medical people respond to research. If you say, "I have this piece that was done by the (insert academic research here)", you'll get farther than, "I read it somewhere on the Internet." So, Binney, if I have to lug around papers from the NLN and SUSO, I will.
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Purple-I hear your frustrations. My first LE therapist did MLD on me twice I think. Thankfully she taught me how to wrap...once. I kept going back and she'd say...well let's see how you're wrapping is going. And I did it once for her, but then she would never do MLD on me again. And my arm kept getting worse. She was so vague and dismissed me all the time. Thankfully from this thread, I knew it wasn't right. So I found a new one. She does MLD on me every single time...even if I'm not swollen. But there is a downside to her too. She doesn't teach people to wrap and I'm not quite sure she really knows how to herself. She always wraps me way too tight. So I've taken to letting her do the MLD then I wrap myself. Thankfully one of the ladies here sent me a DVD on how to do MLD the correct way on myself. It made all the difference! I say find another one!
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It would be nice to go to the medical professionals and have them know what they're doing, but it seems unless you have a standard, common issue, and respond in the standard, common way, they're over their heads. I've been lucky to find medical professionals that are willing to listen - my last PT was awesome, I went in because of pain, weakness, ....... in me LE/BC arm and shoulder. She had a severe shoulder injury as a teenage, and was really versed in all issues in that area, and wanted to learn more about helping BC patients get back to normal - amazing. I'm hoping to go back to her again soon - I ran out of visits per my insurance
My LET does the CDT/MLD, kinesio tapes and wraps me at every visit, unless I ask her not to. She's also invited my husband or daughters or whoever I would like to help them learn to help me do the massage - she's a gem!
When I talked to my RO and said I'd heard that after all the treatment we shouldn't have deep tissue massage in that area, she cut in and started explaining that it wouldn't spread any cancer that was left, it was perfectly safe, wouldn't lead to recurrence...... when she finally let me get a word in edgewise I said, Oh I wasn't worried about that I meant that it could trigger LE - you'd of thought I hit her with a stick or something, she was totally speechless for a few seconds and said - Oh, I never thought of that (rather sheepishly). 8-)
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Melanie - The LE OT that I saw briefly sounds like your second therapist. She was amazing with the MLD ... about an hour each visit but she wouldn't teach me to wrap. I only saw her about 5x before I was dropped by my insurance. She gave me handouts on how to the MLD but I am very uncertain when I did it myself.
I saw another PT this summer that showed me how to wrap but she never once tried MLD. I don't feel confident in the wrapping but I'm thankful that at least I have some idea of how to do it.
What was the video on MLD that was sent to you? I'd like to see it and order it for myself. Thank you.
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My first LE therapist did MLD on me twice I think.
Well, you're 2 up on me, Melanie :>)
Thanks ...yes, I am still searching for someone else . Won't be EZ!0 -
Hi Melanie Ann! I wondered what happened to you. Good to see you here. Becky
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Has anyone tried that Belisse compression Bra??? I can't return it if I buy it and without insurance I don't think I want to spend $200 if I can't return it... Bummer...
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I have an Amoena compression bra, they have them in stock in Eugene at Cynthia's, I like mine, but I think that I would have liked the Belisse better, just looking at the way they're made. But the Amoena is cheaper and if you get a chance to go to you Eugene, you could at least try one to see what you think. They can also order the Belisse I believe.
When my truncal LE is acting up, it really feels good to wear the compression bra, and it helps get it under control faster too. I also have a JoviPak Unilateral Post-Mastectomy Pad that I wear at night under a sports bra, also works wonderfully. I saw on their website that they have these for lumpectomies too - they have one for just about everything, as well as making custom products for your personal needs -http://www.jovipak.com/breast.html
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Linda I have a few jovipak rounds that my LE T gave me I like them too - Where did you get your Jovipak items?? I know they are kinda spendy with no insurance but thinking I need to do something - we just seem to keep the truncal barely under control and by morning I'm a mess - just hard when you don't have the money... :-/ How much was your pad??? they keep all that secret online..
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Dear GMA, I wear the Belisse compression bra. I hated it because it rode up all of the time to right under where my breasts used to be. It drove me crazy UNTIL I found the the ItStays skin adhesive. Now, it is like my second skin and doesn't bother me at all. I wear one 24/7! Good luck,
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Belisse compression bra is famous for rolling. My PT doesn't even recommend it anymore for that reason. She thinks that need to be a wee bit longer.
GMA..aren't you the one who is allergic to a lot of stuff? If so be careful if you try the glue. I used it for a while and tried it on my legs and had a reaction to it on the legs. Why just on the legs I don't know. Used it on my chest trying to keep a shirt above the foob and had no reaction to it then.
Me..still swollen and big mistake taking a warm bath and then putting on compression garments. Ended up having to take them off at our party the other night because my fingers kept turning purple. Arm was bigger than normal but I so need a warm bath to to relax..was worth every ounce of swelling that night.
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Yes Kittydog, no adhesive for me. Going to talk to LE T soon. In waiting room LOL. I need to figure out something as I am getting more active. Got to go!
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KittyDog, I so agree with you about the hot baths! I think I've been able to stay away from things like Ativan because I use those instead.
What I've found works for me is to make the bath warm, not too hot, and then add more hot water as it cools off. I tend to stay in the bath for at least an hour - me and my murder mystery.
Leah
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With baths ... I make myself a smoothie with frozen fruit and I drink that cold smoothie while I sit in the warm bath and it keeps my swelling down.
Strange, I know but it does help. So ... whatever works, I guess. 
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Sigh, oh how I miss hot soaking baths!!! I haven't had a bath since the morning of my surgery nearly six years ago. Showering is simply a means to an end. Baths were so relaxing. GRRRRR, I hate LE.
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gma - I got mine at Just Like a Woman in Portland (http://www.justlikeawoman.com/), my LE-OT didn't know anyone closer that's certified to fit them - mine was a stock item, I do have insurance, so not sure what they cost - I think the sleeve was several hundred dollars, but not the mx pad. You might call JoviPak and see if there is some sort of assistance available for low income? My LE-OT thinks we should be able to figure out how to make one ourselves, but I don't want to try - I'd send mine over for you to try or try to make a pattern, but it's for MX and wouldn't work for Lumpectomy. I have to go back to Just Like a Woman in the next week or so, maybe, if they have what you are interested in trying in stock, you could ride up with me to check them out. They're supposed to call me when my sleeve is in.
I see a lot of people complained about the Belisse bra rolling, by Amoena one does a little do, but not much. I think that it's pretty comfortable, it doesn't come up as high under the arms, which was a little problem for me as my swelling went a little higher in the axilla.
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I want a hot bath too. Unfair. grrrrrrr. It was my anti anxiety drug of choice!
GMA, How are the CPAP and you doing? Are you having date night with it yet?
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I sooooooo miss my hot baths, but havent had one in 14 yrs! Went thru meno at age 41 and started to get lots of UTIs . My gyn dr. made me stop the hot baths and switch to hot showers...and now it's lukewarm showers :>(
Oh well, at least we're clean !!!!
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Purple, I once had to stop baths for a while because of UTIs, but someone (don't remember who, it was a long time ago) suggested just cutting out the bubble bath. It worked.
Leah
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Hugz I am starting back on the CPAP tonight. I've been so congested with the bug that I couldn't use it. I hope it goes well tonight.
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I wish that were the case, Leah. I never used bubbles. Those baths really felt good!
Since then, I have slept with a microwaveable ' bed buddy' for years- before they were well known. LE took that away too.
Where will I get my heat from ?!
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So all you wannabe bathers I have a question?
Ok, so we are suppose to avoid heat such as hot bath, sauna and hot tubs. What about putting a hot water bottle on your back if you have truncal? Cause.... I succumb to this for a measly 10 min once a week or so when my disc in lowerback is bugging me. I have a feeling this is a no, no because it is drawing heat to the area. I was putting a hot water bottle on it very low on the back(medius muscle area) hoping that this doesn't affect my involved LE quadrant. Please don't say I can't do it. What else is left in life...twiddling thumbs. NO...That might cause a flare!
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Dawn- I think Becky sent it to me!! Maybe she would remember the name. I sent it back!
Hi Becky...I come often but haven't written in a while. My life has been crazy busy. I need some advice if anyone is willing to give it. So...Since my diagnosis I had been working desk jobs ...well even before then. But I'm a nurse by trade. Well I recently got laid off and had to go back to nursing. I'm on my feet all day and walking around. I'm in an office which isn't as bad as the hospital..but having LE just sucks in this situation. I don't like to wear my sleeve b/c I have to wash my hands so many times a day. But I feel like my arm just keeps swelling and I've only worked 4 days now...I try to explain my frustrations to my family, but I'm just not sure anyone understands. I want to feel useful again but having a flare drives me completley insane (which I just had one and don't have time to go to therapy due to my new job.) So..since my LE makes me so uncomfortable at work..I just want to quit. I'm not going to...I would wait til I found something else. But I didn't even tell my employer in the first place about my history so I feel like I'm betraying people. I know it's just a job but sometimes I care too much about what other people think. Anyone else have a similar situation? Thanks! 0 -
P.S...I still take a hot bath occasionaly. I just have to. But I'm also having thyroid issues so there are many times I am so cold that I can't get relieve except for a hot bath. My truncal has been increasing so it's probably not a good idea.
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Welcome Melanie, glad you stopped in. So I do a desk job and I can tell you that if I lean back constantly against my chairback then I get a pinchy feeling where truncal rears its ugly head, just behind my armpit. So I tend to lean forward and switch it up a bit. I can even stand if I want. Standing while nursing might be good for your truncal, sitting tends to build up my fluid. This is just my experience and this dang LE is different for everyone.
You are going to have to wear the sleeve and glove/gauntlet if you want relief unless you can trying wrapping as soon as you get home and sleep in it. See were that takes you. Experiment a bit. I think Kira had the same problem as you with having to remove gloves all the time. Not sure what she did but I know other girls are in your similar situation with having the gloves always in the way. Hope they will post soon for you with a remedy. Dang gloves anyway,grrrrr
Don't make any rash descisions on the job yet. Regarding boss, you could admit later that you thought you had a medical conditiion under control but it surprizingly caught up to you again. (kinda like when we get over teenage acne, then it disapears and then it surfaces in menopause
) You have to stop thinking what people are thinking because that will drive you nuts in the LE game. Your boss will get it if he is decent and if he isn't then you may want to consider moving on.Also if you have truncal consider a shaper to hold the truncal in and when you get home pop a swellspot in, that includes the axilla. I have one that covers breast and reaches around the back. I sleep in it and wear it around the house if I am not going out. It works pretty good although pretty ugly!
Family's sometimes just don't get it. My DH who really is dear still thinks I am superwoman( probably because I can output major energy when required, but then collapse later) I just remind him that I can't lift something and could you please do it. He doesn't really want to talk about LE but complies to my wishes and that is about it. So I try not to bog him down and these threads are marvelous for letting it out! The girls understand.
Ok so, it is good that you are not lurking so much and interacting with us because many heads are better than one and we might be able to throw a good plan of attack your way to control your LE. Stick with us.
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my diagnosis I had been working desk jobs...
MelanieI can relate SOOOO well to you !
PLEASE wear your sleeve.
NOBODY at my job knows/ knew I had cancer...nobody! I went in for LX last May, had no rads etc .. and never skipped a beat. I didnt want them to know for various reasons. (thats another whole show :>) I thought I was scott free.
LE seemed like a dirty joke somebody was playing on me ! WTH , now I will have to wear my heart on my sleeve ?! LITERALLY ? It can't be . Yet it is .The sleeve would be okay , but I have hand swelling and MUST wear the glove. (Dang!)
Soooo, what to do ?
Well, I ordered a lymphediva sleeve because for me it is more fashionable, and I like it by gosh ! The glove has been more challenging. My first RX one was too hard/stiff and I have since ordered an IMAKK ( amazon.com) for now . Some ppl actually think its cool ( until you're wearing just one and you are indoors)Certain ppl. PRESUMED I had a carpal tunnel issue so I went with it. Why not ?
I still felt anxious though, about hiding the truth, and I figured I had enough to feel anxious about.I finally told my boss everything just last week. The joke was on me. She thought I had carpal tunnel too ! whatever. It felt very good to get it off my chest. You DO have a right to your privcacy so if you decide to let ppl think what they choose it is up to YOU ( Think Hippa!)
Someone point blank asked me last week because the sleeve is pretty and I simply said : " Oh , it's medically prescribed - nothing you'd want, trust me" I said it nicely and with a smile. I'm thinking that will become my pat answer.
Your case is different because you are a nurse. Still, say what you will, but think about your OWN health !
DONT LEAVE YOUR JOB. I did that once due to health issues. ( copd) It was 13 yrs ago. There was no need. I stayed home in a depression waiting to be put on oxygen. After about a yr I went into pulmonary rehab. They said I was the youngest pt they ever had ( 42 then) It felt good to be exercising and doing something for my health. I felt like COPD had knocked me out of the game ( of life ) but in reality, it was I who had. I switched careers and the rest is history.
I am at a desk job now but have the autonomy to get up and walk some. I must do it more often. Its all trial and error.As for your DH, you may have to cut him some slack.
My husband has gone thru cancer and 'should be' more understanding so I get angry sometimes. He is 110% willing to help me, lift things , do laundry etc etc .. but when it comes to talking about LE I have given up. I finally have come to understand that he is in denial. He wants to be there, (in denial) just as I wanted to keep my cancer and LE a secret. Why shouldnt he have choices ?
I get my support here, and so can you.You will never find a more understanding and helpful group of woman.
The only thing thay cant do for you is put that sleeve on your arm! Please do your part and get some MLD and put the sleeve and glove on this weekend , maybe for 6 or 7 hrs. See how it goes. By Monday you just may be ready to don it for work.
I hope so.((((HUGS))))
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just started back at PT last week and now my left arm and hand are super swollen..errrr or shall I say GRRRRRRRR. I wear my sleeve/glove all day do mld 2x a day and do the exercised she prescribed so not sure what is causing this flare.
About the bath thing. I decided to offer myself the luxury of a bath when I feel I need one. They have always been my escape after a hard day along with a glass of wine..a sanctuary of sorts. For me it is a sense of normalcy that is non negoitable. Even BC will not take it away. I am taking my chances. Screw you LE!! i know it's irresponsible but I hate how BC has taken so much from me already. My baths are a bit on the cooler side but still warm enough to calm my soul
Maggie
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purple, it's interesting what people think in regard to the sleeve. I'm fortunate in that I only need to wear it when I am exercising or working that arm, however when I wear it for archery (I shoot once a week), people think it's an arm protector to keep the string from snapping my forearm. I've even been asked where someone can get one or an instructor once pointed out to another student that they should get what I have. Funny that they have no idea what it really is and since no one has asked directly, I just smile :-).
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Sounds like we need some positive news - my measurement were down
.. Still a little swelling in the upper "good" arm, but at least there is a little light at the end of the tunnel... LE T did tell me to keep wearing the sleeves and MLD... I also have permission to start exercising (walking) and Lebed but told me "snails pace" until we see what it does to the nerve pain in my breast.0 -
Girls, please check my thread on UNDERAMOUR advertisements, I am trying to get BCO to suggest a truncal tee for us. So if you want one please voice your opinion there.
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