Lymphedema Lifestyle Changes (especially in the Summer!)

aunt paula, it's not ideal but a lot of people walk in malls before opening.

I don't have LE but am doing active prevention and I'm certainly concerned about how I'll get my aerobics classes, which are held in the already-hot community center.

I live in the land of LONG summers. It can be miserable. Having to wear a swell spot over my MX area and a breast binder to hold it into place really makes me hot. AC is my friend, and I now have to keep it colder than I used to. I develop pimples under the swell spot from sweating,, and do worry about them getting infected and turning into cellulitis, so when it's hot, I wash the area with antibacterial soap that my LE therapist recommended and that seems to keep it under control.

I do love gardening too. And I've had to SLOW DOWN out there. You know how you just want to "get it done". Can't do that anymore. Have to really pace myself. I've taken "slow down" lessons from my 70 year old neighbor, and she reminds me that it will still be there tomorrow. It makes me sad to have to slow down in the garden,,, as that is something that I really enjoy.

I did some walking outdoors in 80-degree San Antonio heat last week w/o compression, and I was fine. A bit nervous about my upcoming trip to NC in May: from southern KY onward, I will be at higher altitudes in the Great Smokies & Blue Ridge Mts. The folk music conference will be at Montreat, east of Asheville, in the heart of the Blue Ridge; and the last couple of times I attended it was quite hot out. I imagine I will be spending more than a few days in compression sleeves (not to mention during the times I’ll be playing guitar too). As long as I get a little help schlepping my instruments I should be fine, though. I’m driving rather than flying--both because it’s slightly cheaper despite overnight stops and there will be no restrictions about how many instruments I can bring (can use my normal, rather than folding Voyage-Air, guitar and bring two dulcimers instead of one). And the changes in altitude will be gradual. I had been told before developing LE that compression was unnecessary for flights shorter than 4 hrs., but I did notice a bit of swelling on a 2-hr flight from London-Geneva. So I wore compression both ways on my 2-hr flights between Chicago & San Antonio.

I’m sticking with LympheDivas gauntlets for hand protection. Jobst gauntlets don’t come high enough up on my hand, and both their and Mediven’s gloves are stiff and uncomfortable--impossible to play guitar with them on. Also, much easier to avoid getting a gauntlet wet when washing hands in the restroom.

I live in the desert, where summer temps are extreme and mean we have to forego a lot of outdoor activities. Our family is in the midst of planning our summer schedule now. Up earlier in the morning to take advantage of the morning cool (then to bed earlier in the evening).

We do some pre-summer shopping for craft items to have on hand for creative projects. Other summer activities: sorting through the file drawers to unload and shred papers we no longer need (usually a year's worth of everything); cleaning out closets and cupboards; making full use of the library for books, CDs and DVDs to keep everyone happy; volunteer work for a teachers' warehouse (sorting donations, making up classroom craft kits, etc.) and a homeless group (food and personal-care kits for now, KniftyKnitter hats for next winter); indoor gardening (starting plants for the fall growing season--this is the desert, so we plant outside in early October); learning new songs for family sing-alongs; writing letters (remember those? you put stamps on them and send them to people, who are surprised and amazed to find these antiquated forms of communication right in their own mailboxes).

For exercise we do use our local mall in the summer, where we know a lot of the other "mall walkers" and always get to know new ones each summer; swimming is great for LE; I walk fast around inside the house every day, usually for half an hour; we have a collection of indoor frisbees and foam balls--and when the weather's really hot, squirt guns--that we haul out at intervals just for the fun of it; we try to plan in a day trip (or a weekend) to cooler high country every couple of weeks--from our desert valley those cooler temps are only a couple of hours away.

Where the LE's concerned, compression garments are not nice summer wear (but then, they're not nice winter wear either), but going without them in summer can cause more problems than it solves. Sunburn and mosquitoes are a bigger problem in summer, and important to keep in mind (most compression sleeves are NOT sun proof or bug proof, strange as that may seem, so burns and bites are possible without other protection).

Summer travel can create challenges too, what with luggage toting, diet changes, new activities (or conversely, inactivity on long car trips), and altitude changes. Lots to be aware of, but nothing insurmountable!

Here are some other summer coping thoughts:

http://www.stepup-speakout.org/How_You_Can_Cope_wi...

Frankly, it takes courage to face summer with LE, but we're a tough bunch! Go for it!

And for our Aussie friends, please enjoy the coming cool-off season--we'll be thinking of you!

Happy summer!
Binney

Gardening can involve repetitive motion like digging and raking; it can also lead to scratches from thorns and infections from soil.

I wear an all-natural insect repellent (with citronella) and an SPF 50 sunscreen on my LE arm--whether or not in a sleeve--if I’m outdoors without a jacket for any length of time.

writing letters (remember those? you put stamps on them and send them to people, who are surprised and amazed to find these antiquated forms of communication right in their own mailboxes).

LMAO!! Loved that bit, Binney!!

ladsgma, I continue to garden, but I just have to be more mindful. (That's not all bad!) Contemplating lifestyle changes sure can be scary, and I'm really sorry you're faced with having to worry about it. Lymphedema is a steep learning curve, but please know that you can master it, learn what you need to do to get it into control and keep it that way, and take back control of your life. And you're not alone--please let us know how we can help.

Hugs,
Binney

I dislike the heat and all the compression, I get itchy under the compression. But I do mostly everything I want to, I just work way slower and remember to drink more. I can say I see I plant more flowers in pots these days, big ones, because it is easier than digging into hard soil. But I still enjoy it.

Ok, so work slower and I take time to get my arms up and fist pump.

Bugs are another issue, the natural stuff usually works, but when I am in an infested area, I grab for the chemicals :-(

I guess when I first found out I had lymphedema I really didn't know what to expect. I loved to be active (yoga, running, walking, gardening,swimming). I stopped everything in the beginning and just added things in as time has gone along. Now I don't have a problem doing anything, but I alway where my sleeve and hand, and if I feel like I need it I will wear my compression shirt and swell spot. I am mad that this has happened to me, but I am also mad that I got cancer (why me), then I come back to reality and tell myself it is what it is and you need to deal with what you have been given. Every day is a blessing and Im happy to still be here. So I go for my lymph drainage every 6 weeks, wear my armour so to speak and everything else that I loved to do is now in moderation. Life hasn't changed much except I pay more attention to the details.

Denise, did you protect your LE side from carrying heavy luggage or purses? I've been adamant about not carrying weight on my LE side or hooking purses over my shoulder on that side. I'm paranoid of exacerbating my truncal LE. Recent rads has made it flare up and I'm worried. I don't have a torso compression and am wondering....but I'm too hot in the middle of winter so I have no idea how to handle this.

tessu, we've had women here who were severely sun-burned while wearing their garments, because they assumed they would provide sun protection. For sun exposure, those light-weight shirts that are sun-proof are a good bet.

Denise, bummer! The LE may have been affected by a change of diet as well (more salt?) Also, in desert conditions you need LOTS more water, and if you didn't adjust your fluid intake, that alone might be a big factor in a flare here in a dry climate. (Also important in the desert to keep your skin extra well moisturized.) Do you normally do a lot of walking? And while walking in Vegas, did you raise your arm frequently and do some fist pumps?

At least you know the drill (sigh!): hydrate, elevate, gentle exercises while wrapped, deep breathing, self-MLD--get better soon!

Gentle hugs,
Binney

I have stopped gardening and hiking for the same reasons, insects and poison ivy. I don't use chemicals in my garden and pulling the poison Ivy is out of the question now. I have no idea what an insect repellant would do to LE but I never used it before and really don't want to try now. I do use the OFF gadget that has the repellant on a piece of cardboard that goes into a plastic thing with a little fan, and has a clip for clothing. I don't like using it but I assume it's better than putting chemicals on my skin and much better than an insect bite.

I take walks on cleared paths that are shaded by hills and trees. I'm letting most of my gardens go. Last year I only put my top down on my car in the morning and after the sun goes down. I'm still afraid to start making stained glass windows. I found some gloves that are long but handling the glass and using the saw makes me nervous. However, I'm drawing and painting again which I hadn't done in years. I was able to finish a sofa I was reupholstering but with a lot of help. I don't think there is one thing I enjoyed doing that hasn't been affected in some way by LE and cording.

I do wear a sleeve like this, I work on a torch so my sleeve is also fire resistant. It is often scary for me, I am a glass artist and cancer has taken so much from me, I have been fighting to keep my torch work. I have never met anyone who works with fire who has LE...probably I should take a lesson from that fact, but this is my job and my life!

I am glad we are here to support each other.

Found at Home Depot by the registers: SuperBand Premium it is a yellow spiral elastic bracelet, like the kind you would wear with one key while walking the dog, or going to the pool, if you can picture it. Claims to repel mosquitoes. Contains lemograss oil and citronella oil. I'm wearing it over my affected arm, with the hopes that maybe it will keep the bugs from biting that arm at least,, if not the whole body! So far, so good,,,