GRRRRRRRRR I HATE LE..........
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i finally gave in, and ordered the kimbe swell spots. now, im getting the balls under the armpits, and truncal; i guess... its where the "dog ears" where.. my le therapist says its a common spot for it to drain to... anyone know what swell spot you use for there?? does it ever end ???gggggggrrrrrrrrrrrr...........3jays0
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3jays, that rots!
Jovi makes a couple of pads for the axilla, but I've never tried them. I don't know how they stay in place, either, but you could ask. They're called the Axilla Pad, the Mini Axilla Pad, and the Serratus Anterior with Axilla Pad. They're pricey, so shop around:
http://www.jovipak.com/breastpads.htmlI have a question too: has anyone gotten their swell spots paid for by their insurance? I've never tried it, but some of them are expensive enough that it'd be nice to get some help paying for it. After all, it's not like they're accessories any of us exactly want to own.
Thanks!
Binney0 -
Dh and I were planning our 25th Wedding Anniversary.......... Cruise around Hawaii... then a few days in Bora Bora... ( we have been saving for this trip for three yrs)
Well. thanks to LE................... NOT GOING TO HAPPEN..
My biggest trigger is flying. If I am on a plane.... more than 8 hours in a months time............ I am back in PT. Well.... from where I live........ this trip would have put me on a plane 20 hrs in two weeks. So............ if DH and I want to EVER go to Hawaii and do this trip........ we will have to take a ship from Cali. to do so.............. meaning................. we will need three weeks for this trip. WELL..... we are only 45............. so we are still working full time and cannot do a trip like that until we retire.
anyway........... I am just venting my grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr..................... and I am still in such shock............. that something " THEY" told me I would NOT GET........ because I am so thin....................................... has CHANGED my life plan. WOW~
Sisters............. I am so so so sorry you also have this hideous " condition"
XOXO
PS........ we are still taking a great trip........... to St. Lucia and St. Barts.... St. Thomas...etc..... so we are not doing without a grand celebration.......... but the fact of the matter is.......... CANCER freakin' chose for us................ 3 1/2 yrs later............ GRRRRRRRRRRRR
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Laura, that sucks, but I am glad you have found an alternative. LE can't keep us down! I have experienced a similar disappointment with vacations, as long road trips are bad for me, especially if we go somewhere warm. Even with the AC going full blast, the sun beating on me through the window makes me swell terribly. We have even had to rethink where we will retire. No longer plan to have a vacation home in FL and eventually move there full time. Change of plans, but I am sure we will find a place that is more comfortable throughout the year. Lousy LE! I feel bad for my husband, as LE has derailed his dreams as well as mine.
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3Jays... I use a JoviPack Seratuss pack....it covers my pecs/ under my armpit ( not against it ) and goes around to my back. Supposed to redirect the Evil Lymph Fluid down to my inguinal area. I wear one pack on each side under a compression bra/ over a compression under armour/ sleeve glove for my right arm. I have dog ears in my pits both sides. Have been advised to leave em alone. GRRRR
Binney... I am waiting to see if my Jovi Packs will be approved under insurance. I have 2 loaners at the moment.
KittyDog... that ssoooo sux about yer leg swelling.
Estepp and Tina... I have yet to venture into vacations that i can not take b/c of Le....it does bummmmmm me out as I would love to get back to Jamaica. Next summer I can not even fathom with 6 peice of gear I wear now. Will have to re-invent where I go for get aways... cool, mountains? Canada? NewEngland. It will be hard in the heat...and I like to go to concerts.
Happy Saturday and hope you are all hanging in
xo
brazos
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Laura, my parents have a time share in Hawaii for every January, and it would be across the country and then the 6 hour flight--so about 12 hours in the air--one way, and I just don't think I can handle it. And my parents aren't getting any younger. (Both of my sisters, who live in California, have gotten sick on the flight to Hawaii as it's peak flu season, but that's no excuse.)
I've always wanted to go to Australia and New Zealand....
And DH wants to go to Alaska. Again, cross country, then up to Alaska--and all I can think about is Binney flying into Sitka, with her hand swelling up like a balloon.
I have ventured on 5 hour flights, and tolerated them okay, but in early October, flew to Chicago for a meeting (about 2 hours in the air) and then back the next day-- and it was tough. So I do think how frequently we fly plays a role.
LE sucks.
I didn't fly at all for the first almost 2 years and it is liberating to get on a plane.
The Caribean sounds great, but it's not your dream trip.
When I was still stuck at home in self-imposed no fly zone, my husband and his good friend went to Anguilla to snorkel. In February. So I'm home in the freezing cold, and they're eating fish on the beach....
Kira
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that stinks, ladies, about te trips. before le ; i had learned the hard way i can't fly extended flights, with my ms.. can't walk when you get there, ended up in the hosp in honolulu, just to get a pain drip once a long while afgo, pre bc..
i have made shorter trips by air, since bc.. but i always try to break them up.. like a 4 hour flight, a hotel, and on to the next stop.. its about all i can do, aand NOTHING right now, with the hyoi thyroid.. too tired for even fun.. its ok, too broke right now, anyway!!!lol
we LIVE in s. ?Fla; and i manage it with the le; i don't wear all the gear you do, not all the time..
but, sleeves, and gloves, for sure.. but, everything IS air conditoned, and NO ONE le or not, stays out in the summer, unless they're laying in a pool.. getting wet..!
Yes, Binney, i haven't ACTually gotten the kimbes yet, so won't know till they come, but Cigna said they're part of the le coverage. i need to have an rx from my le therapist, and sent it to them, so we'll see..
i have been using a back wrap, that walgreens sells, and it fits my chest area fine.. so, it goes like this when i leave, full out..
i put the wrap on. (i cover the dog ear place, so it won't pool. then, poufs there, t be replaced by kimbres, then strpless bra, making sure that spots covered. foobs inserted, good to go...
my le therapist actually approves of the get up.. i can't stand wearing bra straps with my port scar, which has keloids.. that's the best we've come up with.. when im really swollen, then, of course, a wrap is u it alone at night) kimbe's ) then, put the bra strapless for me, and stick the foobs in that.. being careful not to let bra band catch" by the dog ear area.. and if its bad, then wrapping of course, is replaced
it seems to work.. just a little hot wearing it all.. for most days, just skip the "foobs" altogether.. amen!!!......thanks for all the great answers.. we have to kiss a few froges, till we get pur prince.. and the right garments are mine; these yrs hahaha...3jays0 -
I am in the same position, my DH loves to go new places for vacation. I am new to LE, but I am afraid I have a pretty bad case. I never liked to fly any way because of ear pain, but now really don't want to fly. We have a Marriott time share in Orlando which we like to trade for other places, but I really want to get rid of it now.
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Kay--my ENT has me use a squirt of afrin a half hour before the departure, and it works for 12 hours (you can buy the generic version). I used to have terrible ear pain, and this works well for me. I tried "ear planes", and didn't find them all that helpful.
Kay, wait a while. I refused to fly for nearly two years, and then flew two short flights, each about 2 hours for our first vacation, wearing my solaris, and it was fine.
After my fracture, I flew wrapped, for a 5 hour flight, and it was fine.
I agree with Laura, the frequency of the flights is an issue: that back and forth to Chicago in two days did a number on me. For normal vacations, we fly once and then back in a week.
Give it time. LE needs to be put in it's proper place.
Kira
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ok, ladies need your expertise! I don't have le, SNB a year ago, went to P/T trained in LE she took basic measurements for me, and recommended an over the counter sleeve. I was fitted for a jovi sleeve, 20-30, beautiful purple color! she had me get it incase I joined the gym again, and for flying/long car rides. I did some raking today and for the first time wore the sleeve. I feel ok, but never asked how long do I keep it on? do I take if off after exercising/after the car ride/plane ride or leave it on? will using it on/off like that hurt me in the long run?
Thanks in advance! You ladies are the experts, that's for sure!
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Msjag, leave the garments on for an hour or so after you end the activity (or the trip). That gives your lymph system time to adjust. As one therapist put it, the lymph system is "slow and stupid." (Well, hey! So are earthworms, but where would we be without THEM?!) You should be using some hand protection with the sleeve -- a glove or gauntlet (fingerless glove) to keep any fluid from settling in your hand. Here's a brief article explaining why:
http://lymphedivas.com/lymphedema/gauntletandsleeve/Jo, I was so happy to see your name on the forum -- we haven't seen you in awhile! -- but then I read your post and just wanted to cry. That's so upsetting! Good LE therapy is not cost effective from the point of view of insurance or hospitals. Therapists spend so much one-on-one time with us, when they could be supervising half a dozen typical PT patients at a time. My therapist, who also works at a hospital clinic, tells me the hospital has to write off the losses from LE care, and they do it more or less as a community service, not as a business. Which is why we see some therapists taking short-cuts with treatment, and others losing their jobs.
We need to squawk! The more voices raised, the better! Onward!
Binney0 -
Binney.........good to see your post...........would you believe they still don't have my sleeve straightened out..........I am so fed up........another one was ordered, after the 2 they just sent, and both of those are too tight..........now I'm waiting for the newest one..............I have to pick itup at the hospital this week.................really a bunch of crap.........
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Ducky, let us know how this week's version works.
Sure hope they have it right this time. What part of "medically necessary" don't they understand?!
Be well!
Binney0 -
i know, if i hadn't come here, and heard Binneys story, i wouold never had known.. the problem in the beginning, was im compression sensitive ( no one even said that coukd be a problem) i had to fight my ins to ok a sleeve / glove at 15/20 they said i could buy them OTC no such thing exists in a full finger glove. got a rx to my onco from my le therapist; we appealled. they're now paying for all.. caus ethe gloves the imp thing, so the sleeve has to go by that...
Now, im fighting to get nightime garents, and swell spots covered. im very optimistic.. with the therapist behind me, the onco ordering them , we won...
I thank God for the help i got here, and the le therapists' care, as well as my onco..My point is, I never woukd've known what to ask for, but your stories lead me in the right direction, always... we need to stick together, and speak up.. im soooo grateful!have a great thanksgiving, wear your garments while in the hot kitchen, and enjiy!3jays
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3Jays...what you said..."Word!" I feel the same way....would never have found my way w/o this GRRRRRRRRRRR thread. Am very thankful for all the guidance and support. You ladies ROCK!
hugs
brazos
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Hey sista's in swell............
incase I do not get back here before............
HAPPY THANKSGIVING !
I am thankful for Kira and Binney..... if not for them.... years ago.... I would never have had the LE knowledge and ammo...... I have today.
Blessings to you ALL and to your families!
Laura
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Laura, I am thankful that you started a thread that has touched all of us.
The women on these boards quite literally saved me when I was clueless--a special shout out to Binney who put up with daily or more often pm's of terror and disgust during that time (and since).
I am grateful for this place where everyone "gets it" and everyone cares and helps.
Women who get brownies under the bed and pens in the eye and quite literally offer a helping hand to other women around the globe.
As 3jaysmom said so well--I never woukd've known what to ask for, but your stories lead me in the right direction, always... we need to stick together, and speak up.. im soooo grateful!have a great thanksgiving, wear your garments while in the hot kitchen, and enjiy!3jays
Kira
Who when called a "lymphadema activist" by a national chair of an LE organization privately told Binney that I'd attend the meeting, wearing a tee shirt of a slightly swollen clenched fist, superimposed on a blue butterfly...Proud to be an LE activist.
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Hey Ladies.............just a little fed up with it all.........I still have not gone to the hospital to pick up the sleeve.....................I just don't give a crap anymore...............If the "best" can't get it right............what real hope is there................This has been ongoing since July 6th ...........Even my LE therapist is disheartened....................and she has been there for me every step of the way ................bottomline is..........when I get there, I get there..................to angry to care............
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I've been gone two weeks and just checked in and tried to catch up.
Laura - I'm so sorry about your anniversary trip!
I just got back from a two week vacation to Florida. I decided to drive instead of fly because I'm scared to death of flying. Didn't think about the pressure changes driving through the mountains ... I'm still pretty swollen from the trip ... hope it goes down soon. I am scared to death to fly. JO-5 - I am so, so sorry about your hospital closing down the LE dept. So frustrating and makes me want to cry. When are we going to be heard? Makes me want to cry and shout in anger at the same time!
I too want to thank Laura, Kira, Binney and all of you for all your help over the last year. I am so, so thankful for you all of you ... your caring, your wisdom, your listening ear ... I don't know what I would have done or where I would be without all of you. Thank you!
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And I want to thank all the women on these boards for being here, listening, helping, and understanding.
I started to run through a list in my mind: and realized I'd never be able to thank anyone
Three weeks after surgery my hand swelled, and no one would help me: despite being under the (lousy) care of 2 LE therapists at the time, and this wonderful woman Binney helped me find my way.
And all the women who've helped since--and Binney and I didn't corner the market on advice or information about LE--we just post a whole lot--
A special thanks to our wonderful webmaster: Jane/Onebadboob, who put together the stepupspeakout site and keeps it running. Being able to help with the site allowed me to learn, and create something that helped others.
For all the wonderful women who have joined this club, that no one wants to belong to, and generously help and support each other---thank you.
Kira
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I would also like to thank everyone for their help, especially Kira and Binney. I am still unsure about all of this, but you really helped me find my way. Thanks so much!
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Ladies, again asking for your help/opinion. I just noticed, by feeling it, under my arm, a vein that wasn't there before, I say a vein, because that's what it feels like. I can't see anything, I can jsut feel it. Do you think that's cording? What should I look for/do about it? Thanks!
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Msjag, check out the axillary web page--if it is cording, old cords can hang around and if they're not painful, you would just keep doing overhead stretching--and if they are painful, overhead stretching and consider seeing a PT to do some soft tissue work
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
Kira
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Thanks Kira! It is not painful, and does not interfere with rom. Just seemed to pop up, never noticed it before, still can not see it, just feel it.
I will call P/T on Monday.
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anyone ever have "burning" around the site for "dog ears"? i did rugs 2 days ago, but was very careful.. wore the 2sidedheaded sleeves, plus gloves, and "pilled" with the non dominant arm.. i really think this is from lying on my back so much, with this infection...
Im awollen in the middle of my back, and it wraps around like truncal.. ive gotten all wrapped uop, like a mummy, and have the sleeves/gloves on.. this is the very first time it hurt this sharply.. thats' a big surprise to me!!!arrrrggghhhit also was the 1st thanksgiving i didn't eat salt, nor did i over eat.. im so worried to make a flare worse.. it also can be the cold front coming in, right??? what a PIA this is!!!!3jays
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3jaysmom - Let's hope it is the cold front. I know the weather affects me big time. [[[[hugs]]]]]
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I agree weather change makes me hurt more. (((((HUGS))))
Off the subject...
I had a brain scan last week and while I was there I mention to my nurse that I had to come back for my chest, pelvis and abdominal scan on Monday. My nurse gave me a look like why didn't they schedule them all together and I said I wish i knew. So she said if she could manage it I would have those too. So Tuesday I drank my 36 ounces of fast acting barium...ask for it next time. It has no flavor other than the chlorine from the water. Anyway. I go tomorrow for my bone scan. I want know anything until Thursday. Send me calm nerves please. The brain scan was added last Monday because of my headache..which I think are normal for me and the ringing in my ear. The others well it's just that time of year. It was two year on Thanksgiving day that I was DX. I am holding well considering all. Thanks
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Kittydog, you're amazing!
Waiting rots (but then so do all those scans).Hugs, prayers, brownies!
Binney0 -
I will be thinking of you, Kittydog, and sending positive thoughts. What a nice nurse to fit the tests in together. Yes, why can't they schedule things logically like that? Glad you are hanging in there. Hugs to you.
Tina
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Kitty dog, you are in my thoughts. Waiting is the worst. I agree with Binney- you are amazing! Hang in there- brownies!
3Jays, I'm with you on the PIA, so tired of being so damn uncomfortable. I'm having some back swelling too and think it is worse with the weather getting cold.
My LE therapist and Dr. Are ordering the flexi-touch system. Have any of you used it? I am so hoping it will make a difference. My non LE side is experiencing symptoms of LE and tires so badly when I try to do mld, I just can't do it! Grrrrrrr! Would love to hear if any of you have worked with that before.
Hope your Thanksgiving was spent with great people and delicious food!
Thank you all for being there.0
