GRRRRRRRRR I HATE LE..........
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thanks Glennnie, I've been wearing a gauntlet....And a genie bra.
nomatterwhat, my cords are worse than the LE too.
seeing my breast surgeon tomorrow. ..I'm happy about that, I need a fix! LOL.
did I mention my itchy/rashy feet? Arimidex?
I'm glad it's a new week....
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YES!!!! Arimidex made my feet so itchy I couldn't stand it. I had some medicine left over from rads that helped tremendously. Arimidex made my bones hurt so bad, I could hardly get out of bed in the morning and couldn't bend my fingers first thing in the morning. The only thing that helped was a hot shower. I was only on Arimidex for about a week before I complained and my MO took me off that and put my on CoQ10 and Femara. The only problem now is that I am almost sure that one of those two makes me hyper.
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OMG....nomatterwhat, you just made my day!!!! I am so happy to hear that there is a solution to my itchy feet! I might get some sleep tonight. Yay!!
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I...am so tired of it all....wearing a Sleeve.....the ONLY one in New Jersey walking around with a gauntlet and sleeve....never see anyone else.....always being asked is my are OK??!! Then the compression at night....I try and make it through....I know time will make it a bit easier.....JUST VENTING....Liz
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Liz, I'm in NJ and I'm walking around with a gauntlet and a sleeve.
. I get the questions too - - people often assume carpal tunnel. Yes, it sucks.
J
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I hate dealing with the truncal LE!! The Swell Spot and the breast binder,,, sometimes I want to scream!! And I'll really be sweating under it come summer,,,, and summer is LONG in FL,,,, **sigh**0 -
Had my 2nd LE massage today. How can I complain about 45 minutes, just relaxing...? Supposed to get my sleeve and glove on Wed. Now she's talking about a compression bra. I have quite a bit of swelling in my chest.
Anyway. coping. Sometimes coping is all I can hope for!
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vicki, Goggle LEBED method. Sherry lebed Davis invented this exercise and it moves your lymph effectively too. Great to have in your tool box. You can youtube it also.
Your therapist may not make you feel like she is doing much but she is imitating the lymph system that moves very slowly and she is pushing fluid out of congested areas. Make sure your compression bra is not tight around the band cutting off your Lymph flow. A stretchy cami one size smaller makes a great compression for your trunk/chest area.
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Thank you HUGZ.
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Started wearing my Lymphedema sleeves again. It's like starting all over. Doesn't feel comfortable in the left arm.. Think I do have a bit of swell on that side after the surgery 2.5 months ago. Sigh....... Edit to add - I do have swell in the torso - knew that would happen after the Breast reduction/reconstruction. I really thought the swell would be more on my compromised side(right), but my left upper arm is what is showing it.
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So I come home with my new sleeve and glove, feeling awkward and uncomfortable and my 10-year old grandson looks at me and says, "Wow, Gramma! That's cool!"
OK... so now I'm cool
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You're the cool Gramma! Excellent!0 -
has the grand son seen their tattoe style sleeve? you will be over the top cool...then again, maybe that is the style you have?
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I have tie dyed. Old hippie.0 -
I have lace, and butterflies, and blue swirlies. I've been lucky:very few problems with mine. It felt quite tight today though, and I was glad to strip it off.
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Sandcastle, exactly what I feel ..am I the only person in Perth wearing one of these things and the must have item of clothing in your wardrobe is a cardigan. Had to give up with the cardi as the weather just got too hot. Way over 100 some days, anyway most people are not very observant and you may get the odd look but I don't care if anyone thinks I'm an eccentric old bat, it's just that I HATE wearing it and knowing why. But ladies, I have decided that I am going to have the LVA surgery and will be travelling to Oxford in the UK in June and hopefully will have some good results because I cannot imagine having to live like this for the rest of my life.
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Hi AussieElaine: Wishing you the best on the LVA surgery. I bet you can't wait for June to get here.0 -
Hey everyone. It was sunny and warm so I had no excuse. Laced up and went for a walk.
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I think the grandson would like one that looks like I'm Borg --- with robtic arm. I just have a plain one because that's what insurance paid for... But I've been talking to my DIL (she sews, I don't) about making me some fun designer slip-ons for over the sleeve. I saw one company sells plain colored, but wouldn't it be fun to have a variety of patterns and colors? I'll let you know what we come up with. When I was bald from chemo, she designed the cutest hats and scarves for me (I didn't want a wig).
Oh... and just to prove I'm not disabled or too old, I joined the kids and took one sled ride down the hill yesterday! Hopefully our last snow of the season.
Thankfully, my DH was napping at the time or I'm sure he would have talked me out of it.
I am a little achy today, but I tell you it was worth it! Great cure for the blues.
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vickilynn, I just LOVE your cure for the blues! Good for you!!!! And the sleeve covers are a great idea, so when your DIL works some up, I hope you'll post photos.
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Good for you for taking sled ride! Like Carol, I want to see the sleeve covers too. How nice to be so crafty!
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thanks Glennie, I am excited but nervous too, I'm trying not to build my hopes up too much in case I'm one of the 25% that it doesn't work for. BUT I have been very compliant with all the exercises and massage to have it in the best possible condition. Of course I am worried about the long haul flight from Oz to the UK. DH has coughed up for business class so that should make it a whole lot easier.
Ladies, I got some really funky tattoo sleeves from aliexpress.com and they were as cheap as chips and I feel pretty cool wearing them over my compression sleeve and I must say I look like I mean business with it and my chalked PC short gray hair pink and purple and some days I chalk it blue and am waiting on some more colours coming from aliexpress.
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Businessclass,,, excellent plan! If I ever get to OZ, I plan on forking up the extra money for that too!I will have to look for these sleeve covers! You are rockin' it, Elaine!
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Does anybody have a lymphedema pump? My OT suggested we check into one this morning. I am a Stage 0 and since I have to have one more surgery, she thinks this will benefit me now and after the surgery and beyond. I wear my compression sleeve and bra, most of the time, but she thinks this would be a big help.
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I never thought a stage o would require a pump. Hum,any more insight on this anyone? I think u can even reverse stage o. Learning self MLD would be helpful
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I am not thrilled at the price of one of those pumps either. Yes, please, more insight. Hugz, you really think this is reversible? What is self MLD?
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Nomatterwhat. Sorry can't elaborate as my iPad is acting up but usually stage 0 is very early LE and can be managed quite well. Some say reversable under right conditions. i haven't heard of stage 0 needing a a pump. Sounds like overkill. Anyone here using pump for stage O?
You are always at risk to getting worse so youmust be vigilant in learning signs and symptoms and care. Go to stepup-speakout.org for LE questions and answers and hopefully people with more knowledge will come on here to. MLD is self massage to move stale lymph fluid out of limb. Your Le therapist should be able to teach you.
I wish my iPads would cooperate so I type better and inform u. UGH.mthis post took 40 minutes to type. I wish BCO would fix their programming as our iPads are typing really slow for the last couple months
Binney help explain stage 0 please
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No hugz - MLD and sleeve is all I use for stage 0 - I did go up to stage 1 at a point after surgery, but just the MLD was enough to get it down.
What I understand about stage 0 is that you are the only one to really notice. It isn't very visual. Measurements might show a slight swell but it is just the starting stage. My LE therapist, after time could tell the difference after treating me for a month. With being diligent with sleeves and doing MLD, I am able to keep it in control.
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MLD and compression for me for stage zero. There has been no mention of using a pump. When I had my hystectomy, I saw my LE therapist right before and a week later for massage and she said I was doing OK. I made sure that they didn't put IV's or do BP's in the affected arm.0 -
hi ladies, I'm hoping for some help from you?? I'm sorry if I'm repeating, I've read some posts but there is so many!! I had B mastectomy 3 years ago and implants 2 years ago. My left sde had 17 nodes removed so my sensation has always been gone under arm and tricep area. Always had pinching shooting pains and numbness.
For one week now I have had numbness down back side of arm into my last 3 fingers, feels like no circulation. Achy heavy almost burning feeling under armpit, aggravated more with carrying/pushing. Is this lymphadema or do I need to worry?? Had CT scan of area less then a year ago.
Thanks so much
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