GRRRRRRRRR I HATE LE..........
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Laura, I have a Solaris Tribute sleeve coming - I'll let you know how I like it. I wrap every night, so I'm eager to see how this works out.
Norma, I am so sorry to hear about your cellulitis. I had a bout of it over the summer and it was NO fun. Be well and eat more cookies!!!
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Suzy, the Solaris Tribute..........do you still have to wrap over top of it? I'm a bit confused about night sleeves.
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Suzy... I look forward to hearing about this. I wanna know what Sharon asked also... wrap over the sleeve??? Oh how I hope not...
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The Classic ReidSleeve has velcro straps that make it adjustable to size changes, but it's considerably bulkier than some of their other styles. They have one with a musical name (Symphony or Orchestra or Opera or something) that's a lot like the Solaris-Tribute or the Jovi-Pak or the Telesto-Medtech.
I have both Solaris and Jovi, both of which are easily washable and dryable, so that's an advantage. They come with a stretchy over-sleeve that you can pull over the thing (either sleeve or vest, depending on what you're ordering) for added compression. I never use the oversleeves except for bad flares because I don't need them, but plenty of women use them consistently. You don't have to bandage over them, but if you're planning to bandage your arm some people find it easier to bandage over their night sleeve (not the ReidSleeve one, obviously) than to start their bandaging with stockinette and foam or cotton-rolls. I sometimes bandage over mine for car trips, but I don't ordinarily do that.
Night sleeve, especially the non-velcro type, give you options, and that's a great feeling. My night sleeves are more comfortable than day sleeves, but the glove parts are harder to do anything in than a wrapped hand -- I can't type very well in a night sleeve, for instance, but don't have a problem with it when I'm wrapped.
Here's the garment company page, for quick reference:
http://www.stepup-speakout.org/Lymphedema_garments.htmHope that helps!
Binney0 -
Thank you Binney. Seems my MT mentioned a Tribute night sleeve but you still had to wrap over it. I'll get that clarified this week when I go for MLD.
Sorry to get off topic a bit. GRRRRRRRRRRR I HATE LE.
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I had my three week follow up today with the LE PT. I am not happy and want go back if my oncologist thinks I need to. They released me today despite the fact that my arm is now measuring bigger in all the spots they measured than the first time they measured me. I am also ticked that my PT only gave me a 8 things to do. I saw the other PT today and asked was there anything else I could do. I was shocked that she thought I was doing all of them. So she showed me a new list of 24 things...like my darn chemo brain is going to remember that after a one time showing. Why wasn't I shown these steps when I was suppose to be learning them. I am so angry. I feel like I wasted my time and my insurance's money.
I did get my compression bra today. Not sure yet how I like it but I am wearing it. I also took my Tribute night sleeve with me. I argued my point and he agreed to take it back with him and call the company. I am happy to say that Solaris is going to alter it to a gaunlet and a glove for me for free! So there's my positive for today! Now nobody else better mess with me today. No hormones makes me witchy today.
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Binney, I did buy the oversleeve with the Solaris Tribute - I should get it this week and will let you know how I like it.
Kittydog, girl, you cannot catch a break. And my LE therapist is awesome, but she's really bad about 'telling' me something and expecting me to remember it. I am bossy enough to make her write that stuff down. I am a huge advocate of bossiness...somebody has to be driving this train. It may as well be me.
And regarding wrapping over the Solaris Tribute, I am not planning on it - I don't think I'll need to, but I'll let you fine ladies know what I think about it. I'm so excited!!!! Can't wait to get it.
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Abby, how about a "second opinion"? It can take more than one try to find a therapist you can work with (understatement!), but the search is well worth it:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Wonderful news from Tribute. A bit of common decency goes a long way, doesn't it?!
Courage!
Binney0 -
Haha... the Reid Sleeve is large. It reminds me of something you would use to train attack dogs. However, this is my second one and it works okay for me. It's easy to slip on and off and I just sleep on my back with my arm elevated on pillows. I'm so used to it, I don't give it a second thought. It is really hot in the summer, but I find all sleeves to be hot!
I'm really excited about the Circaid for daytime use. They just started making arm garments in September, so it's very new. It straps all the way up like a Reid sleeve, but is much lighter. I have so much trouble trying to get my sleeves on and this looks like it solves that problem.
Circaid Juxtafit
Classic Reid Sleeve
Miss S
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Miss, thank you for the pics.
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Wow, Jo, that's exciting. I'll be anxious to hear what type of bra it will be!
Miss S
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Benny, I finally did a State search and there is a place on the list not far from me. I don't think the search recognizes our zip code. lol Said there were none with in 100 miles of me. I have an appointment with my Oncologist on Dec. 3. I am armed and ready to battle if it is still this swollen. I am also going to talk with my insurance nurse about it when she calls this week.
Wore the compression bra all day....I am wondering if it is to big. Yet under my arm does feel better tonight. Maybe it is compressing more than I think it is but I am use to wearing my bras tight because I was told to with the FC breast disease. I am still planning on going to the LE Support meeting tomorrow and see if my normal girl has anything to say.....but I am Still ANGRY!
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MissS - I am very curious about the Juxtafit - I saw one off and unwrapped very briefly - please keep us posted.
JO - sounds like you may have found a good fitter - let us know your bra discoveries.
Suzy and Abby - no question my Tribute saved me from falling apart. I think you will be v happy w yours. As Binney says, more comfy than a day sleeve but harder to function in (because your hand is covered in the mitt.) But it only takes a minute to remove and replace it when you just have to wash that coffee cup, or floss, or whatever . . .
Binney - they make an over jacket for the vests? Solaris?
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Thank you so much! I am looking at the night sleeves.
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Hmmm, now that you mention it I don't think I have a Solaris over-jacket for the vest -- just the sleeve/gloves. Jovi-Pak makes a vest over-jacket. We should ask Solaris about that. The two companies use very different fabrics for their over-jackets. Jovi-Pak's is lighter-weight, and mine are all black. Solaris's are a shiny fabric that comes in a couple of colors -- one is royal blue and another is a gaudy print. Wore the Solaris sleeve/gloves (black) with the wild print over-jackets once when we were heading north for a day-trip, and we stopped at a McD's for coffee. Sure gave everybody there something to wonder about!
Geesh!
Binney0 -
great info girls!!!
So... if I wrap.. do I have to use the under material and foam... and then the two bandages... or can I just use the bandages.??? The bandages are no big deal... the foam and material stink. Heck... if all I had to do is use the two bandages.. I would not complain.
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Estepp, there's a Solaris undersleeve called Caresia that you can use under the bandages instead of the foam and stuff. Check it out!
Binney
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~~~~BUT ~~~~
do we NEED to use them Binney?
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My therapist taught me to wrap short stretch bandages over stockinette - no other foam or underliner, but that's kind of a rarity from what I've read on this site. I've done quite well I think since my LE started in January, but really only my hand was affected. After several months, I started wrapping just to my elbow and that also works well, but have added a dorsal swell spot. I have a small contrary spot of swelling between 2 knuckles and so have ordered a Caresia glove that has the digit spacers and will try and work with short stretch over that just to see if it makes any difference. Don't think I could ever adapt to the layers of foam etc under my bandages............afraid I wouldn't be able to "feel" the correct amount of tension.
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well, i don't know now, ive been taught, and have been having geat luck with, just using the short stretch bandages on my hands, where mine is the worst.. my tips of my fingers still swell a little, no matter what i do. i have jangling from nueropathy, but also le..
question.. is truncal considered where the "dog ears" used to be? since surgery, they seem to swell a little. i don't think i noticed it before, cause the dog ears where there... will my sleeves aggravate that?
i know, i can hear you already, gals.. im making the appt. 2morrow for my great LE therapist..
but, in the meantime...question, im tossing and turning all night, and not sleeping. sleep in hosp bed, hed up..do i still go w/out the compression gloves, or can i wear them to bed? thanks 3jays
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I have mild truncal LE where the flaps are that can extend to my back, under my arms, along my bmx scar. So yes, 3jays - that can be truncal LE. Mine can also go down my sides and to my abdomen, if it is bad. It can feel like I've got a wad of material or a boob under my arms - my back behind my underarms hurts, my scar hurts, my pits get so tender I hurt myself putting on deodorant. I do MLD, deep breathing, lift my arms and pump, jump on a rebounder when I haven't hurt my back, and wear full compression shirts when things get bad. Any and all of these things seem to help. Oh, I also take 400 mcg of selenium every day. I hate wearing the compression shirts and should do it more often. Sigh.
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I just saw my LE arm in a photo-my first instinct was to say "gee, I need to go a diet!" lol....not a good look!
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Lmc, I just choose to ignore the 'fat side' of my body. When I see it in the mirror, I immediately turn so that my 'thin side' is showing, and I feel much better.
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somedays its' just too much, and i hide in the house, others, its' ok and i just go with the flow. i figure i got it, so, i just have to deal with it a day at a time; and some days are better than others... thanks for the help bookart. i got a new camisole from HSN that has a place to put my foobs in, and it helps on the sides, also. what to wear for all my sore points ..now, thats' the challenge.. sigh....3jays0
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At least you have a skinny side. lol I am big all over...my next goal to loose this weight.
Although I think the compression bra helped yesterday. I have a sore underarm today on my good side. I am going to try washing it and seeing if that helps. If not I may alter that side since it is not my LE side. It appears that the real boob side is coming up higher under my arm.
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Hey, at least you have a real boob side!!!! I only have two no boob sides!
I do kind of get an 'almost boob' when my LE is acting up really badly on the right side, but I don't get that counts, huh?
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LOL Suzy. I don't think LE boobs really count.
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Ladies, I have to get this out ... it isn't going to be pretty and I apologize in advance. I am soooooo angry! As my grandma used to say, "I'm so angry I could spit nails."
I hate cancer. I hate what it takes away. I hate it that it took my mother a year ago. I hate it that at the time she was put in hospice I was diagnosed. I hate it that the anniversary of her death falls on Thanksgiving. I hate it that I was dropped by public aid. I'm incredibly grateful that they've paid what they have ... but now that I have implants I don't qualify anymore. I've had more swelling in my fingers the last two weeks than I've had since the summer. I don't know why. I'm doing everything 'right.' I'm drinking lots of water, doing my exercises, doing my massage. What is wrong? What am I doing wrong? I was fit before cancer. I walked 4 miles 5 days a week. I lifted weights 3x a week. I did Pilates 2x a week. When I decided upon a BMX, my PS assured me I could get back to doing what I was doing before. I believed him. No one told LE was a possibility. I only had my sentinel nodes removed. I don't make a lot of money. I live alone. I've gone without so I could pay for gloves. I've gone without so I could pay for sleeves. I can't afford to get any more garments. WTH? I need to see the therapist again but I don't have insurance. I'm not used to doing something and it not working out. I could walk a few miles and lose weight. I could lift weights and have tone in my body. Now, I do the massage and it doesn't work. I do the exercises and it does nothing. Why?????
I had friends at the gym. I knew the instructors and we had a good time. Now that I haven't been since February they've moved on. They don't talk to me anymore. I feel like now that I've become soft and out of shape I'm not pretty anymore. I'm not fit anymore. I feel fat. And I feel ugly. And I feel rejected. This is stupid I know it is ... but the yoga teacher, the one whose asked me how I've been doing, that has modified some yoga for me ... she has now traded classes and isn't going to teach the class anymore. She's only teaching in the mornings and I can't go in the mornings. It is some young guy that's teaching the class. I feel rejected. Isn't that stupid? She's the only one that's kept in contact with me and now she's moving on too. I don't want some guy teaching a yoga class and have to tell him why I can't do some things. It's awkward. I feel alone. I feel rejected. I feel angry. I feel fat. I feel flabby. I want my lean, fit, tone body back. I'm tired of trying so hard and it not working. I've always been thin, always been fit and this is soooooo depressing. I don't know what to do. I want my life back. But I can't have it. If this is what life is going to be ... please tell me it gets better. I have to be able to walk again. I want a lean, toned tummy again. I want definition in my shoulders again. If I'd known that LE was a possiblity I wouldn't have gotten a BMX. I had a choice. I didn't have to do it. I feel angry at myself, angry at my doctors. This is life after BC? It sucks. I hate it.
I WANT MY LIFE BACK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Also .. I read about the night garments and the bras and the vests ... really, a night sleeve that costs over $1000?????
I can't afford this! My therapist didn't think I needed to bandage, I don't know how to do that ... are there reasonably priced alternatives? I about choked to pay $150 for a glove. Seriously, I am going to have to eat tuna and crackers for a week because of it ... are there reasonable alternatives? I can't do this.
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Dawne-Hope,
I can't fix a bit of it. I lost my mother a year ago, and I've had a bilat mast, and I have mild LE, and my troubles are similar to yours but not nearly so severe. I just want you to know I'm thinking of you and I do believe it will be better for you and for me. Hold on.
Another Dawn
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