GRRRRRRRRR I HATE LE..........
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Jo - I agree and thank you for furthering my education. All of us have had to learn WAY more then we ever wanted to know in order to advocate for ourselves. I always cringe when I read a post that says "I'm having exchange surgery next week, do you think I should find out about anything about implants?" or "my doc told me not to worry my pretty little head." Knowledge is power. Thanks for sharing. Looking forward to hearing good news about your new LE therapist.
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since bc Ive made dr google my friend on educating myself with my treatments. I make sure I stay away from miracle type websites and surf the university, medical based or John Hopkins type sites. Doctors usually hate it when you say. “I researched it on somewhere on the net” Instead I state matter of fact my opinion and which medical journal or university study I read and make sure I know what I’m talking about. I sometimes bring a print out but keep that in my purse if needed. I don’t want to intimidate them
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Jo- I love the catoon! I do hope you are doing OK.
Hello to everyone- I have been walking and now up to 2 and 1/4 mi. daily . Thanks for the info on the Lebed exercise. I will look into it.
Hope everyone has a good weekend
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jo. To funny cartoon. Awesome funny! Yup all those sites you mentioned I use when needing to know something of value! Any sites selling anything I run from!
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Joanne, thank you for the report. This sounds really promising, and I'll be anxious to see how it develops. I'll also be interested in her assessment of the Lebed, especially the15-minute opening session. Glad you introduced her to it!
Also glad she seems to have a group to share ideas with. I think that's a great way for therapists to grow and to widen their experience, since LE can take such strange turns.
Holding out hope for this one! Gentle hugs,
Binney0 -
Jo, sounds like your making turning a corner and making headway with this le girl. Hoping it all turns out.
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Sigh! In order to have LE you have to be independently wealthy. Funny they don't tell you that when you first sign up for breast cancer, y'know?
But hey! For those of us in the USA, the Lymphedema Treatment Act, which will provide insurance coverage for our LE garments, is making some surprising headway in our contentious legislature. PLEASE go to here to learn what's happening with that and see how easy it is for YOU to pitch in:
https://lymphedematreatmentact.org
Together we can make a difference!
Binney0 -
Onthis subject I just posted on another thread SOME not all of my out of pocket expenses. Jo I hope you get what you deserve. Good care and coverage.
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After my longgggggg plane trips to Rwanda and back (32 hours of travel out and 39 hours on the way home) - I am a firm believer in using compression sleeves and socks. I used mine and had no problem. Another team member said they were too cumbersome for her legs. She swelled up like a balloon for 3 days and had to use compression socks almost the whole time we were there. Just thought I would share that experience.
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Lymphedemaproducts.com
Brand: CircAid
Reduction Arm Kit
$139
This is what I bought. Therapist really likes it. Works as well as wrapping. I cannot do massage or wrap myself, so this is my go to
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it comes with one extra set of Velcro. I don’t use it often, so I don’t know how often it’ll wear out. Sorry.
It’s much less cumbersome than being wrapped. My favorite part is that I can take it off to do whatever and then put it back on.
It’s indicated as a night garment, but my therapist recommended getting this type as it doubles as a replacement for wrapping. I’ve only used it as wrapping. Haven’t used it at night.
Hope his helps. And hope you find one that works for you
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Jo try brightlife direct. I have I think circaid but my therapist is not fancy on it because it doesn’t overlap by half like short stretch wrapping does. I can wrap but I need to practice every couple months or so to not forget
Stella does it really work as good as wrapping?
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Wrapping has never been mentioned to me. I also have never been told what grade/stage LE I have. I see my PT on the 15th I am going to ask her. I'm also havin more cording. In my abdomen again. I popped 3 this morning. I use the cup I use for cupping my scar and the suction pulled the cords up and they popped real easy. I have one big one I can't get. Hope DH can later. Hope he doesn't question the huge hickey under my LE boob! (LOL)
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Jo call brightlife. They are very helpful. Here is the inside of mine and one pic with specs.
I haven't used it yet but my fitter trimmed it down to size for me. Apparently it's instead of wrapping. My MLD girl doesn't like that it does not overlap by half as real wrapping does. Maybe there is something
to the product in how it works that she doesn't know. 
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varg. Lol on Hickey!
Hum I wonder if you could make popping cords a Friday night activity with DH? NOT!
I hope you get rid of the pesky things quick!
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Jo this is the packaging
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For the amount of swelling that I get (which to me feels like a ton!), it worked as well as wrapping did. The beauty of it is that you can make it as tight or loose as you need as long as you keep the wrist tightest, then a bit looser each strap up (if that makes sense).
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I live in Denver and I don't have to wear a sleeve all the time. It's the change in pressure for all you flat-landers that they are worried about LOL! I do still wear mine when I go up in the mountains - because of the change in pressure at higher altitudes. I've forgotten it a few times and not had any issues, but I try not to take chances with it.
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Not sure where to post this, so here goes. I had increased fluid in my arm last visit to LET. Plan is to do massage, exercises, and wear sleeve every day for 4 weeks. I did this last time and fluid levels decreased. Yesterday at work, I started having pain in my armpit, inner upper arm, and breast. Tried to do my exercises but too painful to lift my arm very far. I also noticed an area of my breast was slightly red and painful to touch. It reminds of when I had mastitis when nursing. I am wearing sleeve and sleeping in compression tank. I have not been dx with LE, but this is 2nd time I had increased fluid. Would be so grateful for your thoughts. And my mind goes to the dark places always. This is 2 years exactly of when I found my lump. Of course these things always happen over a long holiday weekend. Plus one sweet DD down with a stomach virus. Ugh.
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ML, you need to get some eyes on that pronto. Sounds like it could be cellulitis, which is an infection that is common with LE. It is an emergency because it can take off and spread rapidly. Here's more information about it:
http://www.stepup-speakout.org/Emergencies_and_Med...
Emergency room or urgent care, since it's a weekend. Be sure to say the words "lymphedema" and "cellulitis" because sometimes they can be slow to pick up on us lymphers. Please do keep us posted.
Gentle hugs,
Binney0 -
Thank you Binney4! I talked with my NP for my oncologist. She has called me in an antibiotic. I am a nurse and felt that is what it was .... but we are the worst patients! Try and treat ourselves. Plus it is always scary .... always thinking the worst. Hopefully these will work quickly. Thank you so much for being there for me!
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ML, thanks for posting back, and glad you're getting started on the antibiotics. Whew! As a nurse you undoubtedly know this, but it's a good idea to outline the area of redness with a marking pen so you can see if it's progressing and cheer when it recedes. Hope you can rest up for awhile. Stay well hydrated and ditch the compression/massage/exercises until the antibiotic starts to kick in. Might want to schedule with your LET as soon as it clears, for help getting the swelling back in control.
As for not having a LE diagnosis, cellulitis can be both a factor in increasing LE risk, and an indication that sub-clinical (or Stage O) LE already exists. So, good for you for having a LET already that you can call on! Catching LE early-on makes managing it so much easier.
Rest up, and please let us know how you're doing. Very gentle hugs!
Binney0 -
Binney4 - ha! I was very happy when she told me to stop wearing my compression garments etc.! I already have an appt on Thursday - I was already scheduled to recheck my fluid levels. Very thankful for an amazing breast surgeon oncologist who has an LET in his office. I see them both every 3 months. More often if issues of course. I am thankful for cellulitis and not something worse😜 and antibiotics that work quickly! It is a busy weekend as my 9 year old is being baptized so we have family here. A little much for right now, but it is what it is. Hope you have a wonderful weekend!
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Binney4 - ha! I was very happy when she told me to stop wearing my compression garments etc.! I already have an appt on Thursday - I was already scheduled to recheck my fluid levels. Very thankful for an amazing breast surgeon oncologist who has an LET in his office. I see them both every 3 months. More often if issues of course. I am thankful for cellulitis and not something worse😜 and antibiotics that work quickly! It is a busy weekend as my 9 year old is being baptized so we have family here. A little much for right now, but it is what it is. Hope you have a wonderful weekend! My surgeon and LET gave me their cell phone numbers in the beginning and said to text anytime I need them. They have been amazing.
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ML. My first thought was cellulitis. So glad you have an amazing team and are watchful. Once you get all under control do join our exercise thread which is so helpful with moving sluggish lymph fluid and healthy anyway you look at it. No competition at all we are a friendly bunch.
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ML- when I read your post I thought cellulitis to! I still feel like a newbie here to! How quickly we learn to identify issues with LE! Sounds like you have a great care team to!
Enjoy your family and celebrating the baptism of your 9 y/o! My little ones are grandkids 12,11,8,6,3 &1.
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ML, thinking of you on this very special day. Hope the memories will all be of the joy of your son's baptism and your family's gathering, now that the medical issues are on their way to "all better"!
Gentle hugs, and one for your son too,
Binney0 -
Joanne, if you can't continue with her we'll ALL be devastated! But I'm holding out for the co-pay taking care of it. Onward!
Whew! Do great therapists have any idea how grateful we are for them?!! Besides just telling them that, we can write or email theIr state licensing board (PT or OT, whichever applies) and let them know what a great job the therapist is doing. These notes go into their files, so they hit the mark and not only encourage but may even help their career along in a small way.
Looking forward to your reports on the velcro gizmo of your choice.
And ML, how in the world are you? Hoping the weekend was wonderful and memorable, and that you're on top of the cellulitis by now.
Hugs!
Binney0 -
Hi Ladies..some of you know me.
I was diagnosed with LE the first time since the beast showed it's ugly face twice.
I need to hear from you what should I be expecting from this.?
My left arm was 25% bigger when LE THERAPIST measured it.
I'm also suffering from a pinch nerve issue on the same side which left my left arm half in numbness.
Is this gonna be a permanent PT issue ? I mean the LE
Can you please share your experiences when you were first diagnosed?
You can PM me if you prefer.
Thank You so much.
Sheila💛
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Thanks Jo.....my questions are not really medical ones..I have kinda stupid questions like after the the wrapping how am I gonna take a shower or do regular stuff? Is the sun have any effects on LE or do I need a salt free diet ? Is there a limitation about carrying weight like my grandchildren ?
I rather here those answers from someone who went through with it.....
I start therapy Tuesday twice a week.
Sheila
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