It never gets better or goes away!

lamuso

Just have to vent a little bit.  Every night I wrap.  Six days out of seven I wear my sleeve.  My lymphedema arm is noticely bigger.  Not huge but bigger.  When I wear my sleeve under my clothes my arm looks huge partly because the sleeve catches on my clothing and wrinkles the clothing and it obvious I have a bigger arm on my right side.  Soon summer will be here and my issues will multiply.  How do you ladies deal with this ongoing issue?  Don't get me wrong..... I feel grateful to be alive and dealing with this issue.  But still, I could use some encouraging words!

Kicks

I'm ALIVE and able to do anything I want to - that's how I deal with 'it'!

I wear my day garments every day, all day.  I wear my night sleeve every night and use my Flexi-Touch daily.

I can't wait til it gets warm so I can get out and be more active as summer is less issues than frigid winter.  I do a lot of lawn mowing (mine and volunteer for ones who need yawns mowed - I love mowing ith my push mower) ), I have horses, do a lot of fishing (new fishing passion is flyfishing,  fly tying and rod building - Thanks to Project Healing Waters).

My LE does not stop me from doing anything I WANT to.

Binney4

Leslie, I hear you! The approach of summer has me growling too, and I've been slogging about in the LE world for several years. What I'm doing about it at the moment is enjoying this transitional time before it get roasting hot. Mornings and evening are really pleasant right now (I live in the desert), so I'm planning my schedule to allow for plenty of outdoor time (both walks just for fun and outside yard projects). I'm also looking ahead to summer (notice I didn't say looking forward to summer) and organizing some great indoor projects that can keep me happier during the scorching season. Swimming takes the place of hikes and walks, and we use the mall in the early morning before the stores are open.

There are still times when the thought of constant compression reduces me to tears (or crabbiness!) I think that's to be expected. I've stopped beating myself up for having a pity party at those times, and I'm willing to treat myself to something (preferably something chocolate) when that happens. For the hot months we plan overnight get-aways every few weeks too--nothing elaborate, just up to the mountains to cool off.

Clothes are still a problem for me too. I see something I like in the store and then when I picture it with the stupid sleeve/glove sticking out it takes all the fun out of it. So when I shop I always take my daughter along, because she's understanding but unfailingly cheery. When I'm in a good frame of mind I actually find it an interesting challenge to find clothes that look GOOD with my garments. I have the usual beigy ones and black (I don't like to wear the black ones much in summer, though), so that means keeping those tones in mind while I shop, and looking for fabrics and styles that flow nicely over them and look feminine. It HAS gotten a whole lot better over time, as when I'm out in public I rarely think about my garments anymore. And people almost never ask about them anymore either, as they did when I felt so self-conscious. I think a lot of what people notice is what we ourselves project.

Unlike Kicks, I've had to give up things I love. Crochet comes to mind. No matter what I do it makes my hands swell. And working hard outside in the summer, reveling in the heat. And really hot, soaky baths. And, mostly, the freedom not to ever think about my lymph system. There's grieving involved, and good grieving takes time. It's hard work, but worth making room for it in your life. It does get better over time--honest!

Sorry I can't give you an instant lift for the feelings you're dealing with, but please know you're not alone. We'll all be looking forward to the ideas YOU come up with for coping in this chronic situation, too!

Meanwhile, gentle hugs, and a pan of double-chocolate brownies,
Binney

Hwally

Leslie,

I totally feel you. It is so frustrating. Yesterday I made homemade gnocchi. Can't knead bread with giant purple washing gloves on. I was bad and took off the glove to make it. Of course, here I am next day with a lump on my arm

It is frustrating but it gets easier as you get used to it. I don't know if it will ever be perfect. I just shoulder through it and try not to let it get me down.

carol57

Hwally, I can help with the bread kneading problem.  I bake lots and lots of bread, and I love hand kneading, and I want to use really wet doughs that put lots of holes and air in the finished product.

My garment solution is to wear a cotton glove (pure cotton, like what you use with overnight lotion) over my gauntlet, and a cut-off thick cotton sock over the top of the gauntlet and up toward the elbow. Flour the heck out of the cotton glove and the lower few inches of the sock.  In my experience, the flour does not work through to the compresion garments, and absolutely nothing sticks to my hand, re-flouring as needed (or kneaded...)  My hand does not get at all sweaty like what happens when I wear rubber or latex gloves over the gauntlet.

I recently went to a 4-day artisan bread school, and the method worked all day, every day. In fact, it works so well, that with some products that were really wet, I had better success with my LE hand than the other naked hand, and several of the instructors tried my cobbled-together-garment protection and were amazed at how it helps.  Kinda like putting a stockinette on a rolling pin.  I have a big bag of cotton gloves and cut-off socks--use and wash, easy peasy.

Carol

carol57

Leslie, it's so understandable to get depressed over LE.  I think that over time, we find clever ways to work around a lot of the challenges, and in some cases, we throw caution to the wind (temporarily) to do something we really want to do, just knowing we'll have to work a bit to reduce some flare symptoms afterward.  I love paddling in my kayak, which really is about the worst thing I could do with an LE arm, pushing a paddle against a strong current and doing it repetitively for hours on end.  In the sun.  On a hot day!  But heck...I do it anyway, doubling up on MLD and Lebeds. I do spend a lot of time in the gym lifting weights so my arm is as strong as it can be (following the slow, steady, frustratingly pokey PAL precautions), but still I know perfectly well that kayaking is tempting LE fate.  At some point, you just need to live your life, as Kicks does.

I do hope you can get your LE under control to the point of not needing to wrap, or at least not so often, and that you find some ways to make your LE answerable to you, instead of vice-versa. LE really obligates us to get in touch with the patience gene.

Carol

Hwally

Carol -

Very interesting! I will have to try to hunt some down. The other problem being that I have two cats and if I'm not careful their hair  particularly loves to stick to my glove and sleeve. I think the cotton glove solution sounds great.

I've got to work on my lymph creativity

purple32

And, mostly, the freedom not to ever think about my lymph system

Binney

You said a mouthful there !

Aferr my LX , over the next several weeks, I wondered if there would ever come day when cancer wasnt the VERY first thing I thought of before I got out of bed.  Sadly , there has!  The day I realized I had LE.  Now it is the first thing I think of when I wake and my last thought before i drift off.

Some days, most of the thoughts in between have very little to do with LE and other days, well- the mind wanders.

What I hate most is the loss of that  FREEDOM you so aptly mentioned.

I admire so many here who seem to have catapulted over that  hurdle and went on to live their lives UNchanged. I don't know if I will ever get there , but that is my hope!

Marple

I too had been able to go through a day or days without thinking of cancer and then LE kicked me in the butt.  Unlike some, almost everything I do physically makes me think, "oh, my arm".  And then I make allowances.  I have to.  A lot of us have to.  A lot of us don't have the luxury of being able to get over it.