GRRRRRRRRR I HATE LE..........
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Laura.....going down in your weight will help....Liz
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Thanks for the motivation Laura! I've been having more swelling than ever and know I need to drop at least 20 pounds. I recently gained it due to thyroid issues that resolved on their own thankfully! That's my next goal! I would love forever without wrapping!!!
Thanks for the encouragment! 0 -
Oh and in regards to the MRI's, I've had 3 so far. I can't imagine being in there for hours like some of you! Mine have lasted 20-30 minutes and I thought I couldn't stand it much longer. I have to talk myself out of breathing too deeply-then not panicking b/c I like to take deep breaths...lol. But it is difficult to lay on your sternum like that.
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Estepp. That is fantastic news and definately doesn't earn a GRRRR here! I was wondering how you are doing. So now looking at your thread your started 2 years ago I would say you have had a major turn around. Athough I still know you hate LE with a passion like the rest of us. I too am making dietary changes including low salt and a plant based diet. I am hoping to shave a few pounds off myself and am waiting to see if it improves my truncal. Anyone wanting my extra pounds, Speak up!
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Laura
That is SUCH great news !
I have lost 20 lbs since OCT., and do all the same things you have done- I am hoping for good results ...for all of us !0 -
Laura, I am SO HAPPY TO HEAR THIS
!!!Sooooooooooooooooooooooooooooooooooooo glad you're doing so well!
Chocolate!
Binney0 -
Hello to all: having fun in Vegas. Wore both sleeves and gloves on the plane, have some extra swelling in the trunk, but not horrible. Wore my sumo wrestler jovi blue night sleeve and chest compression jovi.I just couldn't convince myself to bring they Flexitouch. Just the idea of an extra suitcase was giving me an anxiety attack. Beatmon
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Beatmon. Glad you are having fun and what a smart girl wearing thoses sleeves, etc. Can you buy a underamour tee to wear daily and back on the plane?
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Thanks Binney! XO!!!
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Hugz: I've got the Belize bra that i wear the other 16 hours. I wore a black spanx under a filmy shirt. Then back to the condo and into my gear! We r having a great time. Wish I was younger. Beatmon
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Off to fabric store for work. Will try not to do 9 miles on pedometer like I did last week.
Having a hard time breathing this week and apnea is bad. Could it be swollen breast/trunk that is causing that?0 -
Finally getting close to finding another LET. It's been a long haul. Haven't been taking stellar care of myself. My garments are six months old. Made the appointment to get them replaced. Getting back on the MLD bandwagon, now that I've shown the US government that I have LE.
I'm going to hold out for someone LANA certified this time too!
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Nibbana, since many well-trained and fully-qualified LE therapists don't bother with LANA certification (because it's expensive and gets them no benefits), you might want to do a phone campaign of all the therapists you can find on the Therapist Locator, and ask them these questions:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm#A_List_of_Questions_for_your_Therapist_Here's the Locator, to make it easier:
http://www.mylymphedema.com/therapist.htmThe good ones are out there, and they're worth the hunt! Keep us posted,
Binney0 -
EX. DVD UPDATE:
Hi Ladies
I should begin by stating that I am planning to post this on several LE threads. I would greatly appreciate replies by P.M.In order to add some more credibility to the EX. DVD project, I have been in contact with LOTS of people, incl. but not limited to those in the med (research ) field. I am a tad discouraged ( NOT about the DVD, but for us LE pts )
Prestigious people are suddenly also ' thinking ' about making a DVD! I have been directed to links of DVDs for BC patients that have MISinformation! (made by DRS)
This is upsetting to say the least.At first, I thought- FINALLY! More options for us . Then, after following a link I see things like radiation causing LE ( but I didnt have rads) obesity ( Skinny all my life and now just ' mid weight) People who are inactive . ( I was active to my ability level) People who had lots of nodes removed ( SNB/ 2 here ) etc etc ... yadyadyadyda.... You've heard it all before. I've also seen the use of resistance bands touted, which I believe are contraindicated.
SO, I feel the need is greater than ever and perhaps a bit more 'urgent' for lack of a better word.
PLEASE PM me with your thoughts and whether or not you can be involved ( filming in MA) because if I cannot get enough Lymphedema Ladies from bc.org, I may have to consider my more local support groups. I MUCH prefer you ladies, who I have come to know and care about , but I wonder if the geography will stall the project. One thing I know for sure is that I would like everyone in the DVD to REALLY have LE. I appreciate your support .PLEASE PM me either way.
THX!0 -
Here is what happened with my mail yesterday - two letters: form letter and report - First my mammo results after the radiologist said, "see you next year". I hate form letters - the one I got from the radiology center said, "...your recent mammography examination shows 'no sign of breast cancer.' The area of concern in your breast that prompted this mammogram should be further evaluated by your physician..." I asked for them to send me the actual report when I had it done.. I also received that yesterday - the shortest report I ever saw!
"Bilateral Mammogram....Findings: Skin thickening and scar are features for the right breast.. The left breast is normal. No evidence of malignancy."
No other details like they usually do - measuring the thickening, etc. It was sent to all my docs last week and not one of them has called me.. to say - no worries... I guess that is too much to expect. I canceled the appt with my RO because we can't afford it but he wouldn't go over the mammo unless I came in for an exam.. That is so like him... Why, if I want answers, do I have to pay them $200 for them to look at the mammo and see what they think.. oh well - I think all the thickening I saw myself on the mammo was the LE.. it was a wide ring on the surface of the breast - away from the scar tissue (separate area).
end rant - going to go get breakfast.
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oh well - I think all the ...
How awful!
You shouldnt have to THINK and try to second guess/ interpret those results!Money money money money $!
There is NO difference in reading those and calling you for 5 mins or getting you in ( except pymnt) IF there is a problem, then DR should call and say " "There is an issue- pls make an appt ...yadyadyad" THAT'S a different story . IF there is not, they should be able to speak to you without the office visit. I shudder to think what will soon be happening when the National Health Care Reform becomes instituted.
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Going to go to my surgeon thursday to discuss my mammo results and the swelling/LE in my breast... He called me to let me know I can have a FREE visit with him because it hasn't been 3 months after surgery yet... Nice Nice Man...
Forgot how bad sugar/carb withdrawls are...don't cross me today... you will get a surprise.. this nice nice Grammie might not be so nice...
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FREE visit with him because it hasn't been 3 months after surgery yet... Nice Nice Man...
Thats great, gma!
Aaaah, carb withdrawal. How about some sugar free gum? Helps me !0 -
Good news GMA! I hope he will be informative and alleviate all your concerns.
I see my LE PT on the 21st, first time in over six months. I am going to get measured for new garments. I have Ben doing this LE stuff though and still have not figured out what to do about the swelling in my hand. I guess I will just continue to use a pad inside the glove. Otherwise, it swells. Last time he was going to try grade 2 glove and grade 1 sleeve to keep my hand from swelling, but my arm got worse and I went up to a grade 2 sleeve as well. Kira is right, hands are hard. I imagine fingers would be even harder.0 -
Mine is in my fingers, Kay - that is where I notice it the most.
Not sure what more I can do for them- yet another Q for the LE'ist I guess!
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Kay G, I had to go to a one piece sleeve with glove - I was able to use a one piece with gauntlet last year because, even if they measured loosely at the wrist it would cause my hand to swell, this year my fingers started swelling, so finally took my LE-T's advice and got the one piece with glove. I have an awesome fitter (she is 200 miles from me) but got my first one, it fits perfectly, as definitely helped with the swelling in my hands in fingers, almost like a miracle - I have several more on the way, so I can wear it every day. I also where a JoviPak sleeve with glove at night (sometimes), it helps for night wear. I still have swelling around the thumb joint though, but I found last year that I my thumb joint has completely disintegrated, last year I had an injection which helped with the swelling and pain around the thumb joint, looks like I need to go back in for that again this year. So hope you can make heads or tails out of this diatribe - but basically -
two piece sleeves/gloves/gauntlets cause my hand to swell (I did try 5 different types, and they all caused swelling)
Part of the swelling in my hand was do to having a severly disintegrated thumb joint
between the cortisone injection and the one piece garment (with gauntlet) I've been able to keep the swelling in my hand under control.
I had a punch biopsy of my MX scar near the sternum which caused a LE incident that caused swelling in my fingers (hadn't had that until then)
So this year I ordered the one piece with glove (my LE has wanted me to get it from the beginning because of the way I swell) and, even though I need to have another injection in my thumb joint, it's doing a good job of controling the swelling in my hand, as well as my arm.
It's really comfortable, but I need to find a way to keep the hand clean - I wear long nitrile gloves when cooking or cleaning. I've read that soft cotton gloves over them for just general daily stuff helps keep the wear down.
Hope the last part of this makes more sense.
I should have listened to my LE-T from the beginning, instead of waiting 2 years, and gotten the one piece with glove to start with!!
Good luck - and I love your Mary Poppins quote!
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Thanks for the advice! I am going to talk to him about the one piece. He wasn't a fan of them because he says they are very difficult to put on. I think it would be the solution for my hand swelling though.
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My fitter only fits a couple a year, and a lot of women won't be compliant because it is a pain, but having done both, it's no more difficult except for the fact that you have the glove on all the time, but let me tell you it's working, and nothing else has. I got one first to see if it really would fit, and to see if I could handle wearing it, etc... I thought I should give it a week or two, but after wearing it for just two days, I called and ordered the balance that I was allowed by my insurance!!! I can get mine on faster than I did the two piece.
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difficult except for the fact that you have the glove on all the time,
Hi Linda
For those of us who do wear gloves, I just presumed we all had them on all the time anyway ( except for ppl who were told they need compresison just for exercise) I nteresting! I do think it would be a difficult transition for me to go to a one pc. Thanks so much for the info.
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I think the benefit of the glove and separate sleeve is that you can take the glove off if you're in the bathroom and want to wash your hands. Not that hard to do, but if it's attached to the sleeve, I'd probably have to take my shirt off before I could take that off. I am so glad it's worked for you Linda. I am going to bring it up with my PT on the 21st. I would love to try it, but I think I only get one sleeve paid by insurance every six months, so I am thinking carefully about it. Going to ask about a new sleeve for night time as well. I haven't had that for over a year, and the old one is too large at the top.
I have the Solaris Tribute. I think someone was suggesting a different brand if your hand is involved. I am supposed to wrap my hand inside the Tribute. What a pain. If there is something similar that wouldn't require hand wrapping, I'd be very interested.0 -
Gma, I think it's standard (maybe an insurance rule) that surgeons must include follow-up visits within 90 days of a covered procedure. So he's being nice, but also following the rules. It's good to keep that in mind, since we often do have issues and questions that come up within a few months of surgery.
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Carol - he already followed the rule and saw me 2 weeks after surgery - this is extra from that
Questions being asked today: Could all the thickening I have be the LE acting up or just post -( 2.5 month) surgery? After almost 2 years, I am still having constant nerve pain and it gets worse when exercising, what can I do about that? - am I going to have to be on neurontin (gabapentin) for life? Pain management doc is starting to look at alternatives.. - If BS was to do a MX, would the pain leave or would it still stay around like the LE? I only bring that up because many months ago, the BS did mention that ... Just putting these thoughts out there - what do you think???
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Kay - exactly, if you want to wash you hand you have to undress and have the glove you use to get your sleeve on, etc... kind of a pain - and not everyone is up with us doing that in public 
Also, my JoviPak nighttime sleeve goes from my shoulder and has fitted fingers, it works great - the hand is like this -
You can check them out and find a retailer on their website - http://www.jovipak.com/order_arm_sleeve.html
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gma, really I think they have do follow up with us as much as needed during those 90 days, without charge. Has anyone else heard of this? I think it applies to Medicare, Medicaid, and thus private insurers tend to follow suit.
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I thought so too Carol.
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