It’s June, lymphies! Can you believe it? This year is already halfway over; it’s amazing how quickly the months pass.
I wish I could be as excited about the summer as everyone else seems to be, but I’m already a little panicky. We’re right at the cusp of one of the most uncomfortable seasons for sufferers of lymphedema: the dreaded summertime, a season of increased swelling, awkward compression garments, and feeling self-conscious. Whoa, mama! That’s quite the trifecta.
I don’t mean to sound so negative; summer is a great season. I’m still learning, though, how to enjoy summertime without sacrificing my lymphedema care (something I do more often than I’d like to admit). I want my leg to be healthy.. but I also want to wear shorts and sundresses.. so where’s the balance?
I’m making a promise to myself and to all of you that I’ll be more consistent about taking care of my leg (and I hope you’ll do the same). This summer, I’m determined to wear my compression garment daily, fearlessly, without worrying about what other people may think or say about it. As for the short shorts and sundresses.. well, I’m making peace with the fact that it is what it is and instead of moping around, I’ve been slowly forming a new wardrobe of lymphie-friendly clothing that’s cool enough for the warm weather but will also help camouflage my compression garment. Maxi dresses, linen pants, wrap skirts.. they’re my new staples. I’ve even found some shoes that hide the stocking on top of my foot (peep-toe shoes are great for this!).
I’m trying to work with my lymphedema, instead of ignoring or obsessing over it – a happy, healthy medium! I’ll try to get some pictures of my clothes on here soon, but in the meantime, check out this post for tips on how to manage your lymphedema without compromising your summertime fun.
What are some things you do to beat the heat? How do you manage your lymphedema in the summer? Share your story in the comments section!
Hmmmm…I’ve been wearing knee-high compression garments for about two years (on both legs). I saw the picture you posted of toe-less compression garments and now I want some too. Do they stay put or do they roll up on your feet?
Since my swelling is mostly localized to my ankles and the tops of my feet, I tried something new yesterday to keep cooler. I put on my compression garments up to my knees as usual, then folded them down half-way and then half-way again. It worked to keep me cooler, except I had a whole lot of compression on my ankles which was uncomfortable. Sigh…back to the drawing board. Maybe the toe-less garments will be better
I’ve had both toeless and full stockings and I like both of them, although toeless is more comfortable for the summertime (especially if you’re wearing open-toed shoes or sandals). They DO roll up, and it can be uncomfortable. Sometimes it rolls to about halfway up my foot – we need some sort of toe garter hahaha. You should look into a pair, though, because it might help the heat!
However, if your swelling is mostly in your foot and ankle, perhaps the added compression of a full stocking would be more supportive? I would talk to a lymphedema therapist or whomever you ordered your stockings from to get their opinion. Good luck!
It was so refreshing to read this post. I live in Ireland so our summers are never that warm and I now count myself as being lucky in this regard ;) but it has been in the 20’s recently and I’ve found myself really starting to dislike the summer sun. No more sundresses and short shorts as you say. I also have those toeless garments that you are wearing and find them much easier to bear in the heat. I do have the ones that come down to my knee also as the reader above posted but havent tried them yet.
Your positivity is refreshing and has really helped me realise I’m not on my own. Thank you, can’t wait to see the new wardrobe :) xx
I love colder climates! It’s just makes things that much easier when managing lymphedema. I find the toeless ones to be a lot more comfortable in the heat, too, except they tend to ride up a bit on my foot. Whomp whomp whommp.
And yes – you definitely aren’t alone! Lymphedema is such an alienating condition because, despite it being a common enough one, it’s difficult to meet others who have it. I’m so happy you found my blog and I hope you’ll be active in any discussions! :)
Alexa, so nice to hear from you again. Sorry I’ve been so silent. Busy guy, traveling around on business. As for summer, well, you know I don’t let summer heat get in my way. It is much less humid here in the West; I know from having lived in New England how it can get. And I visit my dad in South Carolina on the coast and just stay away in the muggiest months if I can (but sometimes I just need my “daddy time” – as my older daughter used to say to me).
I find that my circular knit garment that I’ve been wearing on my formerly “good” right leg since November, 2011 is actually hotter than the thicker flat knit garment I wear on the left leg that’s had lymphedema for – oh my, 46 years now? And yes, now that I’m wearing garments on both legs I find I am a little more self-conscious in shorts. I always had one great leg and one big fat lymphedema leg (much smaller now that I’ve learned MLD and wrapping and wear my Juzo all the time) and that seemed okay. Now that I’m wearing circular over the counter on the right leg and flat knit on the left, yeah, I have to remind myself all the things I’ve told others for years: it’s no big deal; people just tend to ignore it; many don’t seem to notice it at all. So be yourself, take care of yourself, and wear that danged garment with shorts and sun dresses (not my style) and ignore the few looks you might get.
My “words of wisdom” for the day.
Jim
Oh, I keep my thigh high garment in place with a little of that “body glue” that you can get at Walgreens or with lingerie (I think?). It rolls on like a roller deodorant. Keeps the garment from rolling up at the toes and down from the thigh. Yeah, I prefer open toed garments too but don’t wear flip-flops. Blech. But do wear sandals.
The body glue sounds like an excellent idea – I’ll have to check that out!! Thanks for the tip, Jim.
Like you maxi dresses are my best friend in the summer :-)
I used to wear the open toe stockings but found that the skin around my toes started hardening due to the extra compression and also the stockings rolled up.
I manage my diet a lot better in the summer, the body swells up naturally in the heat so I avoid salty foods like the plague and up my water intake. I wrap my foot as soon as I get home as opposed to waiting for just before bed time. Kitten heels are a guilty pleasures if I have a wedding or function ( for those of you that live in the Uk, Evans do great wide fitting shoes that don’t constrict your feet and make you feel sexy :-).
It sounds like you’ve got some great management techniques in place, Dee. I think if you consider your lymphedema management as a form of daily medicine, it makes keeping up with it easier.
You and your blog rock young lady! Keep up the good word and work and enjoy your summer gorgeous!
Thank you, Jules :) Same to you!
For the summer, I’m thinking about trying the “Juzo DreamSoft 2000” type of compression garments in open toe and knee-high. They come in different colors, even one is “tye-dyed.” Summer would be the best time to wear some colorful type of garments because it would be fun. I currently have two pairs of thigh high Juzo sheer garments for both of my legs and the great thing about them is that they don’t look like medical stockings.Likewise, sheer garments might be a good option for the summer due to the lighter weight and feel.
Ooh! Those sound really cute – I’ll have to remember to ask about them at my appointment next week. I only have stockings in nude and black; some colorful ones might be a little more cheerful and fun.
Hi, I am so glad to hear of others with the same condition as me, I have primary lymphedema which only became apparent 2 years ago. I hate summer!!
Does anybody know where I could get some funky/colourful stockings from? I wear closed toe thigh length ones.
lymphedemaproducts.com
I’d love to see some funky stockings – why do the lymphediva folks have all the fun? But, maybe I’m looking at the wrong page at lymphedema products – I see some sheer stuff, which I WANT, but nothing colorful. Is there a different page I’m just missing? Cheers.
http://www.lymphedemaproducts.com/products/juzo-dreamsoft2000-ad.html
http://www.lymphedemaproducts.com/products/medi-elegance-ad.html
http://www.lymphedemaproducts.com/products/juzo-dreamsoft2000-ag.html
http://www.lymphedemaproducts.com/products/medi-elegance-ag.html
As a sidebar, I’ve tried Medi, but, it feels too tight, especially behind my knees. I find Juzo and Sigvaris to be more comfortable. I was wearing the Juzo Silver thigh highs for a while and now I’m wearing their sheer line. I’ve never tried the Juzo dreamsoft2000, but I’m thinking about buying 1 pair to see if I like it.
Hi, Donna! Glad you found the site.
Juzo makes a colorful line called DreamSoft; they come in a wide variety of colors, including tie-dye! Check them out: http://www.lymphedemaproducts.com/products/juzo-dreamsoft2000-ag.html
I am so happy to hear from others who have lower leg lymphedema- Sometimes I feel like I am the only person in the world who has this particular malady. I have primary and secondary lymphedema and lipedema. I do everythng and anything I can to cover my ” tree stump:” legs. I have the added problem of morbid obesity – and despite even having bariatric surgery my weight keeps fluctuating. I do MLD, I wrap or wear stockings every day, and do some lighter weight compression at night ( altho I also have Trubute night stockings which have been custom made for me. Because I have swelling up thru my calves, I have had to get creative. I have worn my regular Juzos and then worn Capri length leggings with them Its not a real tight compression, but will usually do the trick. When I need more compression for my stomach and thighs I have found a long length lightweight panty girdle.The advantage is that it doesn’t roll on my like thigh high stockings. I wear long dresses, or shorter dresses and leggings. I am so afraid of getting a bug bite that I always want my legs covered. And summer or not I am not showing these toes to anyone! Oh how I miss lazy afternoons spent in a swimming pool. But such is life. As I say, “every day is an adventure with lymphedema”! Well its about for me to get into my pumps now so I’d better sign off for now! It would be interesting to see what everyone’s daily routine is like for self care of lymphedema.
Be well everybody.
Unfortunately, I wish my toes were prettier. I have recurring ingrown toenails, which can lead to getting cellulitis for me and they take forever to heal. Also, only on my left foot/toes, (perhaps, because I had Lymphedema in that leg for almost all of my life, there are little bumps called pamplomas. The skin usually breaks in the summer on my left foot/toe area, because the lymphatic fluid is not draining properly.
I’ve purchased toecaps, made by Farrow, from the Lymphedemaproducts website. I’ll wear them under open toe or closed toe compression garments.
I accidentally spelled a city in Spain, but, what I meant to write was: I have Papilloma’s on my foot. I also have a fibroma on my right toe that is going to be surgically removed soon. Another reason why I may have these two things is because I’ve had repeated bouts of cellulitis and each time that happens the limb becomes more fibrotic.
Hi, Marsha – thanks for sharing your story! I’m sorry you have to go through so much maintenance – it can be draining, especially when you can still remember those lazy afternoons by the pool, but you have the right idea in that every day is an adventure with lymphedema. We’re just lucky little adventurers :p
In all seriousness, though, living with lymphedema is living with a completely different mindset. Instead of plaguing ourselves with the “What ifs” and “If onlys” of a life without it or the burdened grumblings of living for it, we learn to live with it, in tandem. Wearing long dresses or short dresses with leggings are a good example. So is keeping up with MLD and wearing the stockings. There’s no reason it should inhibit any part of our lives, although it’s important we know how to take care of ourselves.
It sounds like you have an excellent attitude, Marsha! Thanks so much for sharing.
I live in Japan, where summer temperatures in the 90s (mid-upper 30s) are pretty much the norm – but my time outside in the heat is about an hour a day due to work and life under a/c. However I like to travel to tropical places…this has been the hardest change for me to accept, and I’m still trying to figure out how I can manage to do that. Go during cooler seasons there, I guess! I’ve been wearing long dresses for years because that meant I could get by without stockings so that’s not so much of a change, and for some reason I’m not at all self-conscious about wearing shorts or anything with the stocking – probably because people stare at me in Japan anyway since I’m foreign, so what’s a little more? I try to enjoy having the other leg out in the summer air twice as much because it’s the only leg that can….!
Hopefully this doesn’t come off as too preachy: I think we shouldn’t be afraid to wear/make our compression garments visible, because we need to have some sense of normalcy and not care what other people think/say. Perhaps, this is harder for women to accept, since there are so many products out there to make us look beautiful on the outside. We as people with Lymphedema need to love ourselves, just the way we are, which is easier said than done. However, if we continue to hide in shame, then how can we ever feel beautiful on the inside?
Of course, I’ve been hiding my legs since I was a teen and sometimes as an adult, too. But, I want to be free of that. I saw a man recently walking down the street with a knee high stocking on, and I gave him a smile and nod. I want to be so brave and bold that I don’t ever care what someone thinks about the way I look. Now don’t get me wrong, I like to wear a maxi skirt or dress, just like everybody else, but, sometimes I want to be like people without LE in their legs — and just wear whatever I want to wear – be it a pair of shorts or a shorter skirt.
Nice thought! I agree…
I’ve also thought, if we see somebody wearing a knee brace or something that may be from a sports injury, or something like that, do we stare or think anything besides the fact that they’re wearing it? Maybe that’s closer to the way we should think of our stockings.
Preach, mama!
(And I mean “preach” in the good way, in the “shout from every rooftop, I’m not gonna hide my leg” way.)
As for a hint, this is something one of the therapists at my clinic suggested: when coming in from outside on a hot day, sluicing the leg down with cool (not cold) water can be nice. I started doing it last week and it really seemed to help, both in terms of comfort and making the leg seem smaller after that (but perhaps that was just wishful thinking). Oh, and I have primary lymphedema, diagnosed for sure last spring but appeared in fall 2010…after a previous one-year appearance from 2007-2008, after which compression stockings sent it away (nearly completely) until late 2010.
These are really pretty and unique:
http://www.supportsockshop.com/Jobst-soSoft-Women-Brocade-Knee-Highs-30-40mmHg
In NYC for a while now, wearing shorts with stockings are trendy.
Great, thanks! Do they have thigh-high stuff too? Couldn’t find any.
Yes, I posted a link above to both knee and thigh high garments on the Lymphedema Products website and supportsockshop.com also has thigh high garments.
Oops, I thought I had posted a link to both knee high and thigh high stockings, but, I was wrong. I could only find knee high Jobst brocade at various sites, and they’re socks that come in various compression sizes, not stockings.
Here’s two links to colorful thigh high stockigs:
http://www.lymphedemaproducts.com/products/juzo-dreamsoft2000-ag.html
http://www.lymphedemaproducts.com/products/medi-elegance-ag.html
coach 神戸
Hey! Would you mind if I share your blog with my twitter group?
There’s a lot of folks that I think would really enjoy your content.
Please let me know. Cheers
I have Lymphedema in both legs & still require whole leg Velcro wraps!! I’ve tried so many types of clothing. I end up layering & it gets hot. Also, skirts are great but unless u add a sleeve to cover wraps everything sticks & fabrics are ruined. Good luck to everyone!! I truly mean that. Does anyone have any tips/suggestions for me for summer wear over wraps. Sometimes, I do actually need to leave the house & I’m frustrated. Thanks.