GRRRRRRRRR I HATE LE..........
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Thanks for taking the time to reply, Marple- you are a true gem! I know I should just be hoping for good results ... believe me, that is on the forefront!
Laurie0 -
Oh Puuuuuurple, where are you?0 -
Upper left arm swelling started this week. That's the non-affected side. Yup. I should have known. Been lax for too long. Need new sleeves i suppose. Old ones are worn out. I needed to be diligent when in acupuncture treatment.
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Oh rot, Gma! Kinda turns around and bites you, doesn't it? So good that you know what to do about it anyway. Don't forget the chocolate…
Binney0 -
GRRRRR again. Between the hot weather and wrapping both arms, I would say I'm fit to be tied, but I AM tied! Ha!
The pain in my left arm and shoulder is just unrelenting. I am really hopeful that the sleeves/gloves are going to help, not just because they'll be less bulky, but hopefully they will stay in place. I can do ok with the double-wrapping, but when it begins to slide I just lose my patience altogether. The left arm feels much better wrapped, but the right one really kind of drives me nuts. I'm right-handed, so it interferes more with things I'm doing.
I'm trying to come up with short-term goals, so I can see some progress. Things like wearing my wrapping longer than the previous day (I can keep the left one on with no problem, but with both I feel a little claustrophobic after a while), getting my measurements down, doing MLD with my exfoliating gloves, etc. are easy to measure and I get to feel like I'm checking something off my list, which helps. I keep thinking how nice it will be to be done with this, and then I remember again that I'm not going to be, and my frustration level goes up all over again.
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arms, I would say I'm fit to be tied, but I AM tied! Ha!
You havent lost your sense of humor, paula!!!!! :>)
Your short term goals sound wise- baby steps.
You WILL be done with all the wrapping though. I sure hope those sleeves help.
As for the pain - UGH, all I can say is a repeat of our dear Binney ...chocolate !
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GOOD NEWS
SighJust got mammo results. Nothing out of the ordinary.....phew. I can;t believe how nervous I was ! They did mention something on the 'other' (right) breast they have been watching since 2011 - an assymetry that hasnt changed, but I am going to focus on the ' hasn't changed ' part !
The 3 D mammo was almost 50% 'lighter" than the regular and is *supposed to be* more accurate- ESP for density. It did not appear to hurt my LE or flare 'the beast"!
I would suggest it for your gals that have truncal that are bothered by the regular ones.(Do your research.)
A round of chocolate for all...on me ! :>)
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Yay for good mammo results! Chocolate for sure!!!
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ready the chocolate for me as well!
gee, my mamo is set for end of June so maybe I will just check the center on if 3D machine there
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Good info about the 3D.
I know how you feel APaula. Wrapping anytime isn't easy but especially in summer.
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Yay, Purple!
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brownies for everyone!!!!
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yes and yeah purple.
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Getting kind of worried. My left arm aches when I don't wear a sleeve, but when i wear a sleeve it hurts. Anyone have an idea what would cause that?
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Gma, perhaps your arm measurement has changed and the sleeve no longer fits properly.
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Old sleeve. Probably too stretched out.
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I always get remeasured before purchasing new sets of sleeves.0 -
This was on the IL ladies thread and I thought it would be good to share here. It literally took me about 30 seconds to email my Congressman via the link at the bottom:
I have a friend that is a physical therapist and lately she has been specializing in treating women who have been diagnosed with breast cancer. She brought the following information to my attention and I wanted to pass it along to you:
Currently, Medicare, and consequently many other policies, do not cover one of the critical components of lymphedema treatment, the medically necessary compression supplies used daily in lymphedema treatment. As a result, many patients suffer from recurrent infections, progressive degradation in their condition and eventual disability because they cannot afford the compression supplies required to maintain their condition.
There is a Federal bill being proposed to change this.
The Lymphedema Treatment Act will improve coverage for the treatment of lymphedema by amending Medicare statute to allow for coverage of compression supplies used in the treatment of lymphedema.
Specific goals of the Act are as follows:
- to provide comprehensive lymphedema treatment coverage, according to current
medical treatment standards; - to enable patient self-treatment plan adherence by providing necessary medical supplies
for use at home, as prescribed for each patient (including gradient compression
garments, bandages, and other compression devices); - to reduce the total healthcare costs associated with this disease by decreasing the incidence of
complications, co-morbidities and disabilities resulting from this medical condition.
Go to Lyphedema Treatment Act to help support this bill.
0 - to provide comprehensive lymphedema treatment coverage, according to current
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This is not a grrrr, but a modified grrrreat! Well, in the better-late-than-never category. My doctor retired from primary-care work a few months ago, and now she's working only a few days a week in a specialty practice. She's a lovely lady, but she sure didn't know much about LE and was candid about that. Sometimes it was a pain, like when I had to argue pretty strongly for a prescription for keflex to carry around with me, as I travel all over the country for work and wanted to have that available in case I ever see the dread red sign of cellulitis. She really didn't 'get' that need.
So I gave her a copy of a course I wrote for nurses, for continuing education about LE. It's long--about 60 pages--so not a ten-minute read. And...she never read it, always explaining that time was simply too short. She wasn't blowing me off, just being open about time constraints. I also gave her the wonderful (and much shorter!) 'essential information for any healthcare provider' document written by the doctor on Stepup-speakout.org, but even that never made it to the top of her must-read pile.
Well, last week, we were at a mutual friend's house for a party, and my former doctor bee-lined toward me to tell me she owed me an apology for not finding time to read the book when I was her patient. She finally read it! And, she loved the material and we had a great, great conversation about LE, including her 'a-ha' on the question of carrying around antibiotics. Ironically, it turns out that she was a teacher before turning to medical studies, so she was particularly interested in the adult-learning underpinnings of the course book. So as I said, better late than never, but I do feel validated now. Oh, and my replacement primary care doc is newly minted, but she's pretty well informed about LE. Now, that's hopeful!
(I'm happy about the outcome here, but really....it's criminal, the lengths we often have to go to so our care providers are properly equipped to care for us. OK, grrrrrr.)
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Carol, that's wonderful that she FINALLY took the time to read, sorry it wasn't a little sooner. But I suspect you were one of only a couple patients she had with LE, and of course her priority would be the majority of those she cared for, but the potential severity of complications SHOULD have given LE a little priority over other stuff.
My niece is in OT school, and they do not typically cover LE in great depth there, just a few basics, then if the OT is interested, they can do the certification course. Well, she started her very first clinical field placement with an OT who is LET-certified and the poor niece has been inundated with wrapping and concepts she had very little of in classroom. I know how she feels as we all went through a very steep learning curve on this LE thing, so I am sending her the stepup-speakout site to help get her started so she can make a few brownie points with her supervisor. Wish I was nearer to her to help her with the bandaging thing - as it is, she has to practice on my sister who is a nurse, and who got the crash course with me last year when she was helping me during a family vacation and I had just started wrapping then.
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whoooo hoo Carol, your hard efforts finally paid off. Now Ifwe can get the other dang docs to cooperate.....mine never did apologize for chuckling and saying that I never would get LE. Yet he is writing me up for sleeves etc. We should all have chocolate to celebrate Carols achievements. Ok..logging off so I can go find some
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Carol, that is GRRRRReat news! She still has contact with her colleagues, and it's to be hoped she's sharing this new revelation with them. The more the merrier!
Linda, hope your niece decides to go on for further training. So good that she's getting an early initiation into this very specialized area.
Yes!
Binney0 -
Old sleeve. Probably too stretched out.
Makes sense GMA :>(
CAROL
You go, girl! Like knocking down pins , one at a time :>)
My DR very kindly told me that he wanted me to ' stop expecting him to be a specilaist". I was glad for that ( though I never did expect that !!!!) I told him I only expected him to REFER me to specialists....oh, and to BELIEVE what I say ( e.g. " Why would anyone have ice cold feet in the summer - not really buying that one "....his quotes - when the better question would be :" Why on Gods greean earth would anyone make that up ?! Grrr)Many thanks for the kudos on the mammo. Now , to keep the fingers crossed for my husband pls. His MRI ( 12 mos after the fact!) showed multiple small lesions on his bony pelivis. Hit us like a ton of bricks ( not looking for cancer at all/ and still may not be that, but ....) He had stage 4 colon cancer @ 5 yrs out. Appt., for him FRI at MGH. I must say, they are fast. No 12 mos begging and waiting for mri!
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purple, you have been through tons so hoping for a clearance for your Hubs...best wishes and will keep only positive thoughts for you
stay busy doing stuff you like to do!
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Aww, purple, you guys just can't seem to get a break. Thoughts are with you and your DH. Keep us posted on what you learn.
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Jeesh, Purple! I hope you guys catch a break and your hubs is okay.
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Carol, good work on the modified grrrr. Purple, I've got my fingers crossed for your DH.
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I went to the acupuncturist yesterday and I managed to lose 4 lbs over night! I told her I was a bit swollen and uncomfortable from my trip. She tried some "lymph" points and "circulation" points. I feel great this morning and first day in a long time - the breast nerve pain isn't shooting. Haven't had any pain meds this morning. Took a month, but my body is starting to respond and no extra swell from it, rather less swell. (PS - she isn't treating the LE, she is trying to work around it).
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GMA. gee that is interesting but so glad you found this person,
feel better. love the overnight weight loss!0 -
Many thanks for all the good wishes - you ladies are the best!
GMA
So glad for you ..... Hope it ' keeps"!0
