GRRRRRRRRR I HATE LE..........
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wearing the sleeve never bothered me as far as looks....I just could not function with it on....cooking, cleaning, washing dishes...then they wanted to give me a glove.........get the hell out of here...it was bandages all over my fingers.....got wet, slipped off...said bag this crap...gave up...now I am going back because I really have no choice.
Like cancer and Femara SE's weren't enough..."...then you get LE.....0 -
melp, don't be afraid to name names of garments you're interested in or concerned about. The therapist's comment about a company not testing their garments caught my eye, and if it's a garment maker that also distributes in other countries, there's a good chance that more than a few women here have tried their product and can share their experiences. We share the good, bad and the ugly here all the time! I say if you want a colored sleeve...there's got to be a colored sleeve that will work for you!0 -
Melp, welcome to our group. I'm sorry you've had to join us and I remember being in a similar place you are now namely dealing with lymphedema just when you felt you were getting on with life again. One thing you mentioned about wearing your sleeve was that you don't wear it at night. Day sleeves are not meant to be worn at night as they can slip and twist. Being asleep you'd be unaware and running a risk of making things worse. There are of course sleeves designed for night time use.0 -
Hi everyone: I lurk here more than you'd probably care to know lol still dealing with out of control LE but not too much swelling.. weird, I know. the littlest swelling causes such pain for my ms that it's ridiculous. still wearing sleeves, ful gloves, etc.. wrapping when neccesary. All the things you ladies taught me in the beginning.
I wanted to wish you all a Happy Thanksgiving, for anyone in the states...
Also, Mel i'm in so fla. so hot hot hot.. I get fabric lightweight, and make "sleeves" to cover my sleeve.. Nojayst form fitting, kinda the slinky stuff, most of the time, and I have gotten gloves close to the same color in lighweight, again, a size larger, and wear THEM over my gloves.
Really doesn't make them much hotter, but they look much better, and blend better.. Have fun, experiment. It helps to make me feel i can "control" the effects, if not the le..
3jays HAPPT TURKEY DAY (and make sure there's brownies on the menu hahaha)0 -
I HATE it that I was not able to fully participate in family activities over the holiday - cooking, gardening, home improvement project - all done with lots of laughter and fun and camaraderie, and I am left out. I am reminded CONSTANTLY that I have cancer, and if it wasn't for this stupid LE I think I could have a few minutes once in a while that I could forget about this miserable disease. My meds are doing a number on my fingernails so that not only do I have bandages and gloves and sleeves to hinder me, now I have bandaids on 5 of my fingers to protect nails that have split into the nailbed and nails that have been lifted off the nailbed when I caught them on something, like my LE glove or sleeve. I am so clumsy I drop things, have had to re-type my posts multiple times to correct them when the bandaids catch 2 or 3 keys at the same time. I hate LE and I hate the meds I am taking.
I am grateful for my loving family. I hosted the holiday dinner, had a lot of help shopping & preparing, then on Friday they all helped to convert my dining room into a small office/library, and moved my dining room furniture into the room that is actually open to the kitchen and has a nice fireplace, so now I have an open kitchen/dining room AND a library/office. They also trimmed all my shrubs and roses, planted my mums, and generally had a fun day. They are wonderful loving giving people, and I am glad they are my family.0 -
Just wanting to give huge gentle hugs to all those having trouble with their garment fitting, etc. It can be so frustrating. We all need to own shares in the LE industry so we can waltz into the LE factory and have precise garments fabricated to fit us perfectly before we leave the factory site.
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Linda, you are so gracious in the way you express gratitude for the help your family gives, when what you want most is the power to do it all yourself--like we used to be able to do. I too experience a real tension between feeling left out and being thankful for the enjoyment others are having, and the things they can contribute when I can't. You inspire--thank you!
Binney0 -
question for you gals….
I have some mild to moderate LE in my left hand and wrist. Nothing I do makes it subside. Quite irritating! However, today I started to get a little concerned. Im starting to get pins and needles in my index and middle fingers which sometimes radiates up to my elbow. Am I the only one? Should I be concerned?0 -
Mardibra. Hum don't know about the pins and needles. That sounds like a nerve is being pressed. I suppose if you had swelling it could cause the nerve to be pressed upon. I hope others weigh in.
You really need to address your hand issues with a qualified Lymphedema therapist to keep LE at bay. You don't say if you are in a glove/gauntlet/sleeve to stop the progression of your moderate LE but it sounds like you may need to be.
If you have not yet…then go to step up-speakout.org where you can find a therapist in your area to get evaluated. It is an awesome site that some girls here developed. It will answer most of your LE questions and then of course you can ask us anything. Knowledge is power and we are here to gladly help.0 -
Mardibra - I have mild/moderate LE in my hand and wrist as well. I had a bit of numbness in my fingers earlier this year, which turned out to be nothing. But anything weird in your affected hand should be followed up, for sure. Although it's likely nothing to worry about, your nerves are sending you a little message and you can't take any chances with Lymphedema.
I read a great quote on the DIEP thread. One of the ladies was venting about having had enough of BC sucking up all her time and energy and she didn't want to play anymore. Another wrote back and said ' If you don't play, you can't win.'
Janet0 -
So.....frying donuts yesterday when, yup, I got splashed with the hot oil. Of course on my LE side, what else. Fortunately we've got an aloe vera plant in our yard so I ran out and got some and used it. That stuff is WONDERFUL. The burn stopped hurting and went from red-might-blister look to NORMAL. No sign of it now. But boy am I tired of the stress from this.
Sigh. Happy Hanukkah.
Leah
P.S. The donuts were delicious.0 -
Leah, so sorry about the burn, but great that you thought of the aloe vera. I used it throughout rads and was so glad for the healing protection. (It's a weed here--too much of a good thing. It multiplies like coal hangers in a dark closet.) Yum! Homemade doughnuts! Good for you!
Happy Hanukkah!
Binney0 -
Sigh....another trip to the physical therapist. I totally understand what that gal was feeling. I'm so tired of being a patient!0 -
I've been kind down lately and haven't been paying attention to my LE management - Took off my long sleeve shirt yesterday and both elbows were full of fluid... Why can't we just forget it for a few days without consequences?? Crud..... Now back to full time sleeves and MLD...0 -
about the nerve pain in your hand.. I'm diabetic, and have neuropathy IN the le hand.... the good news is: compression gloves (full hand for me) helps a bit. I also have nuerontin for the nerve pain.
You need to check it out! NOT everything is le.. good luck!3jays0 -
3jays. Where do you take your readings for sugar levels? Do they have a system out there were you can take it from other than your LE hand.0 -
hi Ladies! Hope you all had a Happy Thanksgiving! I went to Ohio and spent time with family there. It was great to see them, but sibling drama makes me glad to be living in Wisconsin, ha!
Question for you all. We are driving to my brother's place in Colorado for Christmas. The elevation at his house is about 8700 ft. (We're at about 1000). How much will this affect the lymphedema in my breast? I have my one year diagnostic mammograms on Tuesday and an appt. with my BS after that. I was on antibiotics for three months after round 2 of cellulitis. I went off them in October. Now the pain in my breast has slowly crept back in. (Won't that make my mammograms fun!) I have antibiotics on hand, but now I'm worried about the change in elevation. Any thoughts? Your replies are greatly appreciated!0 -
I notice a difference after a couple thousand feet climb and I am in a sleeve/glove and underamour compression tee. My arm gets that tight squeezed feeling. As soon as I come off the mountain drive I get better in about a half hour. The best thing I do is get out of the car at the high elevation and walk and pump arms for 5-10 walk. I move my arm around in the car too. Sitting still doesn't work for me. It seems to relieve the pain a bit for a while. I can't wait to get out of the mountains. I live 300ft above sea level and notice a difference at about 2000-4000 feet.
Yellowstone at 10,000 feet was really irritating and I felt trapped because we were touring and I just wanted to get off the mountains.
I would try and compress the trunk area and breast with a tight spandex will travelling. Deep breaths and tons of water is good.0 -
Interesting Hugz. ROund about what altitude do you get popping ears? We frequently go for a jaunt up country a bit to visit friends and what not. It climbs pretty quickly and EVERY time, my ears pop. DOnt know what it is above seal level but your post has got me interested and it makes sense to do the fist pumps etc. NZ has very varied landscape in relation to the distance travelled.0 -
musical, Good question because I am the first person to complain about my ears getting pinchy and sore. I am known to hand out the bubble gum. I am not sure but its quite a low altitude when they get sore. Maybe 2000,3000 ft?0 -
I think it really makes sense about LE being affected by altitude and I must admit it's never really dawned on me til what you just said. I need to go look at a topographical map and see if I can get the some altitude readings.0
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hi ladies
I'm slowly getting used to my sleeve. my house has a portable air conditioner so as long as i have it on i can survive through to tea time with my sleeve. my friends havent been asking questions about it and no one in the street has looked at me weird (not that i saw anyway.) so far so good i guess!0 -
Here's a video I found helpful to understand the effects of air pressure (and the lack thereof!) on our bodies. Here's the link, from StepUp-SpeakOut's "flying and LE" page:
There was a program on PBS's NOVA show about the design of space suits. The first four minutes of that program is the best explanation of the effects of air pressure that we have seen. Check it out:
http://www.pbs.org/wgbh/nova/space/space-suits.html
Next to the picture of that cute aerospace scientist wearing her classy new-fangled spacesuit, click on "Launch Video" and watch at least the first four minutes. If you keep in mind they're talking about people with normally-functioning lymph systems, you begin to see how air pressure can be a special disaster for those of us with compromised lymph systems.0 -
Hugz4u: sent you a pm about blood sugar testing. for the rest of you, anyone interested, ck out the freestyle meter..
Hope all had a good Thanksgiving. me, it was good, and i made peanut butter brownies!Yeah! 3jays0 -
thanks Binney! I'll check it out!0 -
Thanks Binney!
I have come to the conclusion that I need to sleep on my back. DH tells me that he finds me with my LE arm not only UNDER me as I lie face down, but reaching for the back of my opposite shoulder! I also find that my GOOD hand is swollen every morning and I cannot get my wedding band on, so am assuming both arms are getting tucked under and stopping circulation of blood and lymph. So HOW CAN I CHANGE THE WAY I SLEEP????? I have always been either belly or side sleeper, toss and turn much of the night, and invariably find myself on my belly by morning. Any suggestions???? (and please, no comments about how ridiculous this sounds - it sounds that way to me, too!!!)
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Linda, I too was a side-sleeper and have now had to convert to back sleeping. I use pillows at the bottom of the bed to raise my legs at the knees and support them comfortably, lie flat on my back, and use the pillow under my head only, not my shoulders. If my stupid LE is acting up in my arms I also have a pillow by my side to elevate the arm/hand. This arrangement helps keep me in position because it's like an obstacle course trying to turn over.
Unfortunately, it's not real friendly for snuggling with DH. None of this is easy!
Keep us posted. Sweet dreams!
Binney0 -
I know that feeling Binney - bi-lat stinks - both arms raised and a CPAP mask on.. Kinda ruins any snuggle time.0 -
How about this position instead LOL:
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Oh, GmaF, I am cracking up!!!! Thanks so much!
Personally, just the miserable bandaging gets in the way of REALLY snuggling, so pillows and CPAP seem to put you in a bit of a fortress! Guess there are times to be non-compliant and just do what a girl's gotta do to get that snuggle time! Lasting all of a few minutes before the equipment comes back out for the rest of the night....
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