compression vest makes me cry!

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aprilintexas
aprilintexas Member Posts: 41
edited June 2014 in Lymphedema

So I got my custom made compression vest today and it certainly is a sturdy, well-made garment. I have been wearing "support" camisoles (my favorite is the Flexees), which have been helping a lot, but I could tell from just a few hours in the vest that it offers better compression and will really keep the swelling under control. 

 The problem is that it's hideous! I got the lowest cut neckline available, but it is still high-necked (probably a bit lower than a crew neck t-shirt, which I don't wear) with a very heavy duty zipper right up the front. It looks like something that would have been made of wool and worn by professional football players 100 years ago. I think I look like the inmate of a sanitarium with it on, and I don't own ANY clothes that it will not be visible under. Since my bilateral mastectomy with no reconstruction, I have spent a lot of time trying to get comfortable with my new body and finding clothes that I can wear flat-chested and not feel totally defeminized. This vest challenges that at a whole new level and I'm just not sure how to cope.

I spent some time this evening crying about it but know that I want to feel my best and not have the swelling, pain, and worry of the truncal LE. I just wonder how others cope... is anyone else wearing a contraption like this everyday? 

Also, I am stumped by how to care for this thing and what to do about the heat this summer. I wash my sleeve/gauntlet/bandages/camisoles by hand in the bathroom sink and hang them to try in the shower. I don't think the bathroom sink is going to be big enough to wash the vest, so that complicates things. Obviously I need at least two of these things, since the heavy fabric feels like it will take more than overnight to dry. Do I need a third one to wear to the gym? The fitter at the shop thought insurance would cover two, but I can't imagine they would cover three. Is it possible to wear a silk undershirt or something underneath the vest so I could wash the vest less often? I live in Texas and have a young child so I spend a good deal of time outside in hot weather. What am I going to do?

Anybody else in this situation? I would love to know how you cope with it. Right now I feel like hiding at home but it's not a realistic option. I am mortified by the thought of wearing this thing out in public but obviously my health is more important than my pride. 

Does anyone know if I can decorate it in any way? What would I use that would be safe for the fabric? Fabric paint? Sharpie markers? I'm guessing I can't do any embroidery or sew on any trims or anything.... 

Thanks for any advice, sympathy, or whatever. 

April in Texas

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2009

    Aw, April -- man, my gut hurts reading this. Been there, done that, and you're sounding so brave it breaks my heart. Big hugs, sharing your tears.

    But hey, I gotta tell you that I gave up on the things. Couldn't get over the grief of wearing them, couldn't NOT think about lymphedema for a single minute with the thing on. (Also, frankly, couldn't breathe too well with it on either. Fine when I was sitting quietly, but try to exert myself and I couldn't draw a full breath without a lot of stupid effort.) Wore them for about a year. My daughter-in-law does tatting, and I asked her for (gorgeous! hand-made!) lacy edgings that I stitched very lightly to the neckline, which made it almost bearable. But in the end I did mad searches for other options. And fortunately, there are some. At the moment I'm using a WearEase compression mastectomy bra. Lovely fabric, machine washable (hang it to dry, though), nice prosthesis pockets (or skip the prostheses), relatively minimal front zipper, doesn't show under my clothes. I use Silique light prostheses, which are made of beanie-baby beads with a thin silicone outer shell to give it a good shape and keep the weight way down. Since there's little silicone, it's not too bad in the heat (I live in the AZ desert), and the bean-bag back makes it easy for me to adjust it to fit without pressing on sensitive areas.

    But there are other options as well. If your fitter isn't familiar with them, ask her to look into ordering samples for you to try. My fitter had never heard of either the bra or the prosthesis, but now she's absolutely sold on them and very happy with both companies. Anyhow, here's a page about truncal lymphedema. At the bottom are pictures with links to a whole bunch of other chest compression options worth trying.

    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    April, big hugs from me to you. Go do something chocolate.
    Binney

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  • aprilintexas
    aprilintexas Member Posts: 41
    edited March 2009

    Thanks, Binney. I wonder if the flexi-touch plus the support camis would turn out to be enough? This stupid vest costs more than my wedding dress and has the complete opposite transformational effect.

    The fitter did offer the Bellisse but said that it was essential to wear prosthesis with it in order to get the correct compression. I may decide to wear prostheses someday but didn't want to be required to. Is the Wear Ease different in this way, or was the fitter wrong, or what do you think?  I will definitely be searching for other options; thanks for the link. Just don't know whether I should try to take this thing back and say, "Are you kidding me? give me something better!" or whether I should stick with the program and wear this while I figure out what else will work. 

    My mom ordered me a book about lymphedema and from what I can tell looking through it, it doesn't even mention truncal LE. I am finding this whole thing to be completely demoralizing and infuriating. 

    thanks so much for the response. Chocolate is definitely called for. 

    April 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2009

    April, we're all different, but the Flexi and the support camis may well be all you need for most days. Keep the vest for tough days when your LE flares or just feels like it needs more compression.

    What are you doing for night compression? A Jovi-Pak or Solaris night vest is comfortable for sleep and is especially good at reducing swelling rather than just containing it like a day vest does. In the summer I put mine in a plastic shopping bag in the frig, so it's cool at bedtime, and the foam inside holds the cool for a long time. I also use it during the day when I'm sick, when my swelling gets out of hand, and when I travel. It does not look "normal" for traveling and I always end up getting wanded at airports (it does have an uncanny resemblance to a suicide bomber vestUndecided), but it's possible to wear a biggish blouse over it and not be entirely conspicuous.

    I wear my WearEase in the evenings with no prostheses, and the compression is fine. I don't know if the Bellisse requires prostheses to work, but I sort of doubt it. Why not ask them? Their contact information is near the bottom of this page:

    http://www.bellisse.com

    Some of the binders may be workable for you too, day or night. Some are light and easy to wear -- and fairly cheap -- like these:

    http://www.breastbinders.com/Store/catalog/Traditional_Breast_Binders-1-1.html

    It's definitely hard to find information about truncal lymphedema, which is a lonely and frustrating feeling. But there are a lot of us here who have it, so lots of experience with assorted arrangements for dealing with it. Others will no doubt be along soon. Those of us like you and me who have had no recon are fewer, but even we can work out ways to live in reasonable comfort from the options available.

    Hugs, prayers,
    Binney

    Edited to add: the Bellisse site has a page of links to information about truncal LE, studies and articles. Just remember they're trying to sell you a compression bra! But otherwise it's useful information.

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