GRRRRRRRRR I HATE LE..........
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Sadly, that love affair is pretty much over
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Why, Kay?
Are you "alright "?
Many thanks to you ladies for your understanding btw- it is appreciated !0 -
I can certainly understand wanting to keep your DX private. I wanted that in the beginning too. But I had to tell my boss (who just happens to be my closest friend for 30+ years) She told her boss (i was so po'ed at the time. I knew he needed to know, bur i would have liked to at least have my biopsy results back first) who told his boss who was doing cancer tx at the time. They told me to do whatever I needed to do... Cliché as it sounds we are a family in a way. Meanwhile, I had to make arrangements for a caregiver for mom. And as I was in my omg I'm gonna die phase, I felt I had to let her sisters know that she was their responsibility if I didn't wake up :-) and once you tell those ladies something... well let's just say there might be a shepherd in a remote village in the Andes who doesn't know.
I guess I'm amazed that anyone can keep the kitty in the bag for long. I may have had 48 hrs.0 -
Purple, I don't know what I would do without my LE Therapist in these new learning times of LE for me... I am on hold right now because of the post surgery stuff and I can't seem to reach to my "good" arm for self MLD and I sit here and watch the wrist swell.. sleeves, gloves, deep belly breathing, and water are my only source of help right now... DH won't do the MLD for me only because his touch is too hard and it just isn't his thing... I understand... today I feel like I am strangled between sleeves, gloves and breast binder... I tried a shelf bra cami the other day and I had too much jiggle LOL - it hurt too much - went back to the standard breast binder.. I know it helps with the pain but I do feel strangled this morning... We have so many ups and downs - it's what I call the YO-YO syndrome... Love ya - just know the ups and downs are normal and it WILL get Better!!!!
Edit: Couldn't stand it any longer - just stripped all the LE stuff off except for the breast binder...
epic fail for the day..... Sorry, Purple, can't be encouragement today....0 -
Sorry, Purple, can't be encouragement today....
GMA
I find you to be inspirational.And it would seem to me when something is just makimng thibgs worse, its a good thing to know when to say uncle ! One thing I know for sure is that your yo-yo will pop up for you again. Hang on tight!
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I guess I'm amazed that anyone can keep the kitty in the bag for long.
It hasnt been easy - and not always good for me either. No support .There were many circumstances that played into my decision. It was like a perfect storm. The week I was DX a colleague was dying of BC. That was all anybody talked about. I sat there at the funeral thinking, " I dont want to be the subject of their pity, horror - or anything else " But there were several other reasons as well- among them layoffs ( nope they couldnt say why , but I could easily have been on that chopping block)
Also- I have other illnesses.
App 15 yrs ago , when DX with COPD, I cannot tell you how much I " became " that disease.Well meaning ( and/or nosy ) people contstantly asked questions. Some asked me when I might go on oxygen ( not yet ) .COPD is not ' well received " because the smoker ' did it to themselves'. In time, I actually had to leave that job to get any peace.
I went 'out there' and started anew. I looked the picture of health and decided to act that way.
Everyone accepted it as truth and in a very real sense, it became my truth. I was SO much healthier for it . I took good care of myself and got a great job.
Soooo, that was reason 2 ( or 3 ) I've lost count.
There were 6.
I'm not telling unless I have to and HIPPA was made for a reason!
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We all need to find our own comfort zone. I think I'd go nuts trying to keep things on the qt, but I certainly understand why a person would want to. As for HIPPA, yes, that's been a blessing for people who don't want the whole world in their business. I don't think it's changed things as much in my neck of the woods as it has in a bigger city. When the neighbor lady is sitting across from you in the waiting room and her sister-in-law works at the reception desk...
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Purple, I am touched by your concern. Thank you. I am fine. You know it's just the give them an inch and they'll take a mile kind of thing. I was happy with the glove/sleeve when I was comparing it to being wrapped. But now I am just tired of it. I am amazed that you were able to keep BC to yourself. And impressed too. Since I went through chemo and lost all my hair, there was no way for me to hide it. I got a lot of support from people I work with though, so I am glad it came out even though I would have kept it to myself if I could have.
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I, did my Cancer Journey different then MOST.....I read a about called "The Lessons I didn't learn from cancer and the BIG one I did" that book was made for me....the lesson learned is do it your way.......Keep you circle small......before my Mastectomy I asked about 5 people to walk with me....they all were friends in the medical field....the last person I asked was our Priest and she said yes she would.....came to our house the night before and talked to us......she showed up at 5 am in the morn to be with us and later came back at night.....Most of my journey has been good at a time when we needed privacy we did have it did not need 20 calls wanted a update.....I did not need to hear what I was going through.....had visiting nurses and we live in a Adult Community.....eventually there was a Leak....at that point I was almost 15 months out of surgery......at a meeting that my husband had to be at he put the cards on the table with my consent...as we wanted the right information to circulate.....Jaws dropped ... people could not believe this happened....to us.......I would do it that way again....but now there are people who do pry......we put them in their place....Liz
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"And impressed too."
Don't be !
In some ways, I feel rather cowardly about it . I am so impressed by bald woman walking around functioning as if nothing has happened- just not missing a beat.I did miss out on support as well.
We all have our different reasons for doing things the way we did , I guess. Hey, who knows how many women we have encountred that have/had BC? Something to think about.I see where you are coming from RE: sleeve and glove. I was hoping it was nothing worse actually ... but I guess there are times when just knowing that is the new normal is the " worse". It is I who am impressed by YOU , and all of you ladies who face each day with your sleeves and all that goes with them.
Still, no matter how you slice it, LE SUCKS, Kay!
(((HUGS)))0 -
Purple - I have trouble with two piece compression sleeves/gauntlets, they make my hand swell much worse, so I've had to go with a one piece, custom, sleeve w/ the gauntlet attached. Now I'm having problems with my fingers swelling, so moving on to one piece with a glove. Be sure to let your LE therapist know that you are having trouble with it being too tight on the wrist too. It could be your fitter miss-measured also. It's so important to find a good fitter!
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THX Linda
I havent seen a one pc with glove (?) PLS Direct me.
This gal is supposed to be ' the best ' fitter. I also sent measurements to Josh (Lymphedivas) and he agreed on the sizing and my therapist seemed fine with it too. But after an hr., it was very uncomfortable in the wrist area.Its just the darn wrist , but that is where the most of the swelling is. I wonder if it is more swollen now than on the day she measured ( looks it ) I dunno'.
I wish there was a long glove just to the elbow ( remember those 1950 eveing gowns and gloves ) and that was all that was needed.
Now this is where my husband always stops me snd says I never wish BIG enough.
Ok, wish I didnt have LE ... but then, that there was this long glove ....
So far the glove and sleeve work very nicely, even after an hour . But that wrist really does make a mark.
We'll see.
How do you ladies with gloves do housework and dishes etc ?!
I am concerned that when I take them off, my hand will swell from still having the sleeve on (?)Many thanks !
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Purple, I have the same problem with the wrist. Also, my hand. I think it's pretty common. My PT gave me two very small little pads to put between the sleeve and my skin. He also had me stretch the sleeve by putting it on a water bottle to stretch while it was wet. And he made me a little insert for the glove for my hand. After a while, the glove and sleeve were fine without all his little tricks. I think it took about a month or maybe a little more. I haven't tried the all in one glove/sleeve because he says they are very difficult to put on and off. Also if you just need to take the glove off to wash your hand, you can't. Because my hand swells, I can't do the gauntlet, I need the glove. I am curious if anyone uses an all in one glove/sleeve how they like it. I've only had a few new sleeves, but every one of them had the same problem with the wrist and hand. If you find any good tips, please share them.
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Good to know, Kay!
Sounds very logical. I was telling my husband we should try to ' stretch' the wrist , but he said no way. ( sleeve, not my arm!
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I have used nitril gloves over my gauntlet to wash dishes, garden etc.
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I use disposable plastic gloves over my gauntlet when I do wet/dirty jobs (Gma, is that nitril?).
Does anyone know if Zinnat (cefuroximine) is a good first-line antib for cellulitis? It's what I'm usually given for infections since I'm allergic to penicillin - since I have some in the house I wondered if it was a good "back-up" in case of an emergency. Like Keflex, it's a cephalosporin drug.
Leah
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Leah S, The non latex surgical gloves yes, nitrile (looked up the spelling) gloves they don't puncture easy.
When I got cellulitis the doc gave me Keflex - unfortunately, I'm allergic to that too.. So I have an extra z-pac if I get another bout.
Apology - Change of subject: I should take a pain med BEFORE getting my drain out??? Is that correct?
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Gma, yes, take the pain med before the drain removal! When I had my first mx 4 years ago I didn't know the drain was going to be taken out or that it could hurt. It was AGONY. So when I had my second mx with TEs in Sept, I let everyone know that I needed something before the drain removal (standard here is 1 week in hospital for that so drain removal was the day I left). I must have made a big impression with that, since I'd figured on a mild painkiller but they brought me percocet. You'd best believe I took it! Didn't feel a thing.
Leah
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GMA, I'm allergic to penicillins and cephalosporins too. My doctor says I am a challenge to find antibiotics for. I've used Zpacs, clindamycin, and levoflaxacin. I am not sure what is the best with cellulitis though.
I did not find getting drains out painful at all. But I did take an ativan before because I was extremely nervous about it. As much as I wouldn't want the actual taking out part, I am sure you're glad to have them gone. Good luck.
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gma...with my mastectomy drains --4 of em--a yr ago I had no pain just anxiety along with a weird sensation when they were removed. I just had the diep and the 2 breast drains were removed before my first exit from the hospital 5 days later and again no pain. i think it is an individual thing. Take the pill just in case but just wanted you to know that it may be a non event for you.
?? I am gettin hyperbaric treatment everyday for 30 days...errr....boring as HE** but gotta do this. My bad LE arm is not liking this at all. Wore my sleeve and glove but any other suggestions?? Maybe some extra MLD??? And it was doing so much better after the surgery ....sadness abounds
Maggie
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Mags, are you saying the hyperbaric treatment is making your arm swell? I think that's an unusual reaction, so maybe think whether there's some other cause? Maybe you're getting exercise? Salty meals? Weather changes?
Can you elevate your arm during treatments? Stay well hydrated, do some slow fist pumps with arm propped up, lots of pauses for a few deep abdominal breaths. Extra MLD is fine as long as you're not using too much pressure or speed, but when we're frustrated and anxious we tend to do MLD too hard and too fast.
For the sadness, increase the chocolate!
Gentle hugs,
Binney0 -
I can't remember who it was but THERE ARE gloves available in some colors. Not many, but some:
http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Gloves-and-Gauntlets/c133_135/p2337/Juzo-1101ACFS-Glove-w/Fingers-20-30mmHg/product_info.html
The Mediven 95 gloves work best for me and they come in two colors.
http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Gloves-and-Gauntlets/c133_135/p1960/Medi-95-Glove-20-30mmHg-w/Compressive-Fingers/product_info.html0 -
Dawne
Many thanks. It was me looking for blk. gloves.
My beige cost $380 . I did bookmark the page , but I just dont know about spending more for OTC gloves. As it is , my thumb went numb and glove got tight during exercise with these pricey custom fit (UGH)
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I'm back from my BS appt. They took out the drain - YAY - then said to call if my breast starts swelling.. oh my, forgot about the possibility of that happening. Then I showed him my wrist and arm and he now acknowledges that I DO have swelling from using BP and IV... but still says - "your nodes are ok on that side we didn't touch over there." I went on to say, it doesn't matter where the nodes were touched, if the system is compromised it can go anywhere... I pulled up my sleeve and sees my upper arm is swollen and red too... but not warm and I don't have a fever... BS told me to watch it and my breast and call him if anything changes... He was ready to give me more antibiotics.. On the way out, I asked him when I could see my LE therapist.. He told me that anytime I want to see him, just ask because obviously I know my body better than he does
... He thought it would probably be a good idea after seeing my arm/wrist. Yay BS won't doubt me anymore .0 -
YAY!
gma ... I feel like you are on the way back from a long and arduous journey!
Now, keep a watchful eye, my friend.0 -
I have Juzo one piece - sleeve with gauntlet, it's a custom product, this time I'm going to get the one piece sleeve w/glove. I have to go about 200 miles each way to be fitted for these at Just Like a Woman in Portland Oregon. I couldn't find pictures of them on line, I guess because they are custom. It's pretty comfortable.
When I've taken my glove off (back when I wore a two piece) to do house work, it does make my hand swell. I've folded my gauntlet back a few times when cooking, but only for a few minutes, like when I cut meat or something messy and done ok. I think the best thing though is to get those plastic medical gloves and wear them over your gauntlet sleeve. One I washed out the tub with out any compression garment or rubber glove and the chemicals caused my hand to swell, found out after that with LE chemicals can cause problems, so we should wear some sort of protective glove on our hand when we do anything anyway (which I HATE, but need to start doing more!)
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Kay, I'll let you know how the sleeve w/glove is after I get it. I've managed well with the sleeve gauntlet, but my fingers are now swelling, and the two piece, (I tried several brands and custom) all have caused me more hand swelling. The fitter said she doesn't fit one piece often, but if they fit well the clients have been really happy. Which is why I'm driving 400 miles total, twice, to get mine at the same place I got the one piece with gauntlet! She's did a great job fitting that.
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Off to see my LE Therapist today to try to get my BP/IV fiasco taken care of..
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Good Luck, gma !!!!
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Hi All~
My first post here and not sure if I am in the right section
I am starting rads soon and wondered if I should purchase a sleeve for use during treatments (is this even an option?!) as a preventative measure. Would this be useful? I had 1SN removed and reading through I see others who had 2 or less develope LE . Crap shoot I know, but any suggestions would be very welcomed. Thanks!
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whaevah - sorry you are joining us here. If I were you I'd tell my RO or BS that I'm worried about LE and ask for a referrals to a therapist for some baseline measurements and to get advice on preventing and dealing with LE. Your therapist can help you decide if you need garments and which garments would be right for you.
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