GRRRRRRRRR I HATE LE..........
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Can't let this thread drift down.
Kira
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I got wrapped on Friday. Did rads Friday night after and had to take the wrap off. DH did a great job of reapplying. Can't wait to take this off tonight and get a LONG shower. I am itchy under the wrap and right now it is driving me crazy. Trying to think of something else, but might have to take it off now and get an early shower instead of waiting for tonight. Anxious to see how much the swelling went down. When the PT put it on, it was only on for a few minutes and he took it off so my DH could try it and the swelling went down a lot (at least in my hand) that quickly. PT warned that it would come right back if I didn't keep up with the wrapping though. He talked about alternatives to wrapping at night once I get this under control. Special night compression garments. He said we would talk about it at a future appointment. Any one have any recommendations?
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Kay, if you search for Solaris/Tribute, Jovipak, you'll find a lot of threads. Most women are tending to use the Solaris, as they'll remake it until it works, while jovipak charges for alterations. But, many fitters have a preference. There are also garments by Reid sleeve (the classic is huge and hard) and they make lighter garments. Lately, jovi is marketing an undergarment to use with juxtafit or farrow wrap. So see what your PT likes.
I have both a jovipak and Solaris, and find the jovipak is sewn nicer, but the Solaris works better.
There's a thread, Solaris in the freezer that's active where women are weighing in about night garments.
Bandaging is HARD--if you're really itchy, you may want to take it off and make sure your skin is holding up well and then shower and re-apply.
Your PT sounds great.
Here's a link from stepupspeakout on night garments--getting a little old
http://www.stepup-speakout.org/nightgarments_for_lymphedema.htm
And, on our treatment page, there's a handout with bandage instructions--realize that everyone tends to do it differently, this person was into artiflex over foam, but FYI
http://www.stepup-speakout.org/treatments_for_lymphedema.htm
Kira
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Thanks Kira! I wil check out the solaris in the freezer thread. I like the PT a lot, even though I've only seen him once. Originally, I had a young woman, and I don't think she had much experience. I guess everyone has to start some where, but since I was going through radiation that really threw her. She had no idea what to do and basically did nothing but measure me and tell me she'd e-mail the doctor and see what he thought. But then she called me back and set up an appointment with the PT I saw on Friday. He looked very young too, but said he has been doing this for 10 years and just had a lot more confidence in deciding what to do and how to proceed. I think he was exactly what I needed!
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Kay, it sounds like you landed in a good place! And good for the young woman who was able to refer you to someone better able to deal with your situation. YES! Keep us posted!
Binney
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Oh great the swelling started back last night. It appears I can no longer tolerate lots of salt. I had a smoked pork chop. I knew it tasted very salty but thought nothing of it because I was starving. I didn't get to eat before heading out to my DD's Girl Scout event and we didn't get back till after 1pm. Nor did I think anything about having a pig n blanket for supper. Just thought oh yeah lots of points and quick to fix. After supper I could feel it swelling in my arm. So out went the Mt. Dew, bacon so now goes the smoked chops and hot dogs.
Drinking lots of water so I hope that helps. I will confess I actually like my solaris when it is nice and cool in the house. I still would prefer nothing on my arm at night but I know I need the compression at night. So what I have started doing on nights it bothers me is take it off for about two hours before getting up if it is bothering me thanks to the heat.
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Aw, Kitty, bummer!
Darn good thing brownies aren't salty.
Sending you hugs and salt-free cyber-brownies,
Binney0 -
KittyDog - I'm the same way with salt. I've been doing really well but splurged a lot this last week ... I ate a pizza from my favorite pizza joint one night, had it the next day for lunch & had a couple of burgers this week which I never do and my entire arm is hurting worse than it has ever hurt.
I don't see noticeable swelling in my arm but it HURTS and my fingers and hand are swollen. It brings me back to the banging my head against the wall with the cost of this crap. My PCP doc is the only one who took me seriously, well now he is no longer in private practice and has gone to the VA. I have no primary care doctor. My therapist only takes insurance or $400 a visit ... I don't have either. What am I supposed to do? You all have heard the rant before ... and I'm sorry to do it again but I feel so helpless and so out of control ... It's just tears and frustration right now. I'm doing everything I know to do but it isn't helping much. It's also PMS and that always makes me swell up, but it's never been this bad. #sigh# I've never splurging like this again and it's NO salt for me from now on. I'm done.
I HATE LE!
I HATE IT THAT THE DOCTOR'S DON'T LISTEN TO US
I HATE IT THAT I CAN''T AFFORD TO SEE THE ONE PERSON IN MY AREA WHO CAN HELP ME!
I HATE IT THAT SO MUCH OF THIS CONDITION IS NOT UNDERSTOOD
WHEN WILL OUR VOICES BE HEARD???!!!!
Love and appreciate you all. Sorry for the rant this afternoon. I'm just so frustrated .....
Pass the salt-free brownies! And where's duckb1's vodka?
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Hi, I am really sorry to hear that you have to go through this. Would you mind telling me where you live?. I am a certified lymphedema therapist and if you are close to where I live may be I can help you. The best and important thing that you have to do is drink plenty of water and do deep breathing exs. I am not sure what treatment you have taken and what you do for your home exercise program.
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MBoss - Where are you? I'm in Illinois. If you're anywhere near there, PM me. I do the stretching exercises my LE therapist gave me and do the MLD. I know I'm not doing it correctly because it doesn't help the swelling much but it does help the pain, so at least it is doing something. I've had a very stressful week and maybe that has something to do with it? I also the Lebed exercises but haven't done it at all this week because I've been too busy. That usually helps me more than anything but I haven't had time. Need to make time, I guess.
I'm drinking and breathin'!
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I live in Canton, MI. I don't practice anymore as I am afraid that the repetitive movement with MLD on other patients may cause harm to me, which is a shame. Just because your swelling doesn't go down as much does not mean you are not doing it correctly. Even if you cannot do the whole regimen everyday doing breathing exs and some stretching will be good enough, which looks like you are doing. I try to keep my arm elevated when sleeping.
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MBoss - Thank you! I usually start out with my arms elevated but inevitably end up my side, my left side which is my LE side. Not good! I'm pretty good at drinking but I forget the deep abdominal breathing. I really need to get the bubbles talked about in lebed. It remind me to *breathe*
I appreciate your advice. Thank you!
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Salt free Brownies for you too Dawn. Hope yours settles down quickly. I am keeping my fingers crossed that my appointment is a go for Wed. still. My LE PT is pregnant and expecting in Nov. The other one is out on vacation...hence the back up and such a long wait.
I feel like we are darned. The fitter wouldn't fit me until I was seen. Yet my compression sleeve is so worn out it want stay up anymore. It needed replacing a month ago. Then she tells me ny gauntlet looks to small when I tried to buy a new one with out insurance paying for and said nope I can't sell you another one until you are seen. It really makes you want to scream and just go order it on line. All I wanted was a clean looking gauntlet to wear to Church. Six months of use and it looks gross and it is all pilled up thanks to the bricks I lean on coming into the house.
Well I at least had a Weight Watcher's Brownie....probably full of sodium if I got my glasses out and read the box. Trial and Error with my diet. Finding it so hard to eat all this food...now if my tummy didn't have problems sure I could eat it all easily. The reason I went for something high in points...no more dogs.
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KittyDog, whatever you do, don't get out your glasses and read the ingredients on the Weight Watchers Brownies!!!!!!!!!!! Seriously, you need them with all the garbage going on trying to get treatment.
I just got approval from my HMO for 8 more tx between now and the end of Dec. Then I'll have to get approval for the first half of next year (this incl garments). The wonderful bureaucrats who do the approval love to wield their power I think - I was approved for 8 more though I am actually entitled to 10 more. Since I'm doing well I know the 8 tx will be enough so I'm not going to do anything about it. The logic of this whole thing escapes me. What part of "chronic" do the bureaucrats not get? It's not like the request for approval is going to someone who's never heard of LE - this same person who said I'll need another letter from my onc in Jan for further approval is the same one who said in that letter that the approval for garments comes automatically with the approval for tx! So every 6 months I'll need a new approval. It's an inconvenience more than anything else really. At least my LE PT is really good.
I'll need new garments also and I decided that I'm going to order 2 gauntlets instead of only 1. The sleeve didn't get stretched out at all until recently but the gauntlet is a poor pathetic looking thing by now and has been for quite a while.
OK, everyone's invited over to my place for brownies.
Leah
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I'm glad my therapist orders my garment (gauntlet) and only charges what she pays + shipping, they cost me about $12 each. She doesn't bill insurance so I don't have to go through the trouble of getting script from my doctor for insurance to pay for it. When I need new gauntlets, I just call her office and request her to order them. Although I need to go back in for another eval, so I need to get my doctor to refer me to see her. I am however under new insurance and don't know how many tx I will need.
Sheila
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It's really too bad that the Lymphedema Treatment act has no chance of passing with this congress: this sort of nonsense needs to be addressed.
Agree with Leah: what part of chronic don't they get
I met the head of medi USA at the NLN and told him that sometimes I just buy the gloves off the internet and avoid insurance--he was shocked, but the hassle is HUGE.
Since when does the fitter get to set the rules?
It's hard enought to have LE, and then to have to fight to care and garments--grrrrrrrrr
Kira
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Hi Everyone Here!
Just read all of your posts since I was on last....
Still in round #2 of LE/PT since my surgery. I still don't know how I went to At Risk to Stage 1-2 in a year since surgery. This is week #3.
These MLD treatments from my LE/PT are devine. May you each have one everyday by her for all time! I don't know what I will do after this round of PT is over. I am learning the way of MLD.... but its just not the same as having someone excellent at it do it. DH is doing the sides and my evil back...
I came home today with a serratus jovi pack that i am to try... fits over my flat chest ( pecs) under my Pit and around my back. It feels really good. Spares me from walking around holding my boobless chest and rubbbbbbing. The challenge is how to make it fit into a bra or sports bra that wont flare my Truncal LE.... wearing my microbead foobs....and a compression heat gear underarmour shirt and sleeve and glove.
I am waiting for my MEDI 550 compression shirt/ custom fit to arrive. Did the one w/o Foobs as I can not deal with wearing them only RARELY. Otherwise I am a Amazon.... I wear a Pink Band on my sleeve/ and glove to SHUT THEM UP.
I am still having the baseballs in my pits/ and rock hard pecs and swelling behind my shoulder. My ribs have been much better. Esp when I even try and do anything above putzing around the house.
If any of you have worn this MEDI 550 let me know whatcha think. I am in such unchartered waters, except when I am here.
I am hoping that with this compression I may just be able to kick ass with my vacuum, wash a floor, my car or just ride my mower tractor and not be in so much pain and useless the day after.
Love, Light, Relief of all your Suffering and Sanity to all of you.
Thank you so much for being here.
xo
brazos
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Brazos, check out the Jovi Serratus with Axilla pad, left-hand side of this page about halfway down:
http://www.jovipak.com/breastpads.html
It might be just what you need to deal with the baseball in the pit.Haven't tried the Medi vest, but I've seen it and thought it was more compression than I can handle (I'm small and compression-sensitive). I'll be anxious to hear your report.
Love the idea of the pink band on your sleeve -- the spectre of bc shuts everybody up. Much as I hate to contribute to the pink pandemonium, a band like that could work as self-protection from a lot of unwanted questions from people who don't even really want the answers.
Let us know what you discover, and be well!
Binney0 -
Please add another member to this club. The dreaded LE appeared last Tuesday after a botched TE fill. Note to self, NEVER EVER let the newbie nurse fill on the BC side!!!
I am thankful that the swelling isn't too bad an I have seen a LANA certified LE therapist that I like so far. I have a good bit of cording, and my left shoulder is very stiff, but not quite frozen. We are hoping that releasing the cording, loosening my shoulder, and getting rid of my TE's will all help relieve the LE. I guess only time will tell.
At this point, she doesen't recommend wrapping, because of my lack of mobility in my arm/shoulder.
I've been lurking on this site for a few weeks, but now it's been added to my favorite topics. You are all awesome. Thank you for all the love and support you share.
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Aw, Kelli, I'm so sorry you've had to add the LE forum to your "Favorites" list -- how sad is that!
But welcome anyhow, and hooray for finding a good LE therapist right off the bat!Hugs, brownies!
Binney0 -
welcome, Kelli: soo sorry you had to go thru this, too.. no newbie nurses for you, young lady.. i never, and i mean never let anyone practice on me.. i did the 1st yr...but i learned the hard way; also.. glad to have you here.. pass the brownies, will you, Binney?...3jays
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Kelliregi - My LE started during my TE fill process too. It was the next to the last fill and going home I noticed numbness & tingling & swelling in my fingers. It took me months to figure it out. It's great that you already have a LE therapist. I'm sorry you're dealing with this and I'm sorry you're here ... but these women have been a true life-saver for me. [[hugs]]
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Welcome Kelli!
Binney.... yep that is the jovi pack a la Serratus....I have one on my bad side right now. My LE/PT tells me I WONT LIKE HER when I get the Medi SHIRT. I will keep you posted.
I first re tapped my evil scar corner/ ridges with kineso tape.... broke a sweat... takes some talent! First time I did that ALONE.
Found a Jockey xl sports bra that would accommodate the jovi thang ,,,as i am flat that left me totally uneven .... THEN went and dug out my post op fluffs....to put over the jovi. Pulled out ALOT OF FLUFF...then put a fluff on the other side. I am thinking why not just wear a jovi on each side? as I have the same chest rocks and pit BALLS....
then onto armor shirt/ sleeves and gloves....
I thought if I Even had to tell anyone what I just did they would say WTH?..... so much for being an RN for 32 years. I do not know ANYTHING!
When I first wore my sleeve and glove I had so many rude GAWKS and questions....the pink band really helped....even as I hate the pink thang. Use it as Zina Warrior Deflection. You want to stare? Well this could be you Sista!
Have a nice night. Call me for brownies..
Mostly, Keep you Chins UP
xo
brazos
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Welcome Kelly! I am new to this too. Just got back from PT. He was very pleased with the progress. My hand is almost normal, he said he'd like to see the knuckles and tendons a little more. There is some hardness in my lower arm, but he said it felt softer than when he saw me on Friday and measured me, and my arm was 1 cm smaller every where. Yay! The plan is to try to get a little better before getting a sleeve. I really lucked out, the pt is just great. I am sure that makes a world of difference. But grrrrrrrrr...... I still hate lymphedema!
Walking with the wrap today, a young lady stopped and asked me if that was a compression garment that I had on. Said her mother had to do that and she was a 10 year survivor. I like those kinds of stops. Have a great night everyone.
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Grrrrr. Today I managed to fall over and land on my LE side. Hand is swollen and bruised. Lower arm is swollen in two places, one bit is going to bruise and my'handbag under my arm is really sore. Will watch it tonight and see how it is in the morning. Have bruises in other places as well but they are not for viewing. I know I shouldn't tried to balance and put my jeans on, luckily I was in the family changing room at the local pool so it wasn't a public spectacle.
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Just a Grrrrrrrrrrr, in my regular way.......grrrrrrrrrrrrrrrrr......I am so tired of flying on a trip....having a blast....flying home.........and dealing with LE for .....what seem like forever......just pisses this chic off!!!
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Kelli, did you ever check out the cording info on stepupspeakout?
I was the queen of cording...
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
Estepp: we are SO grateful for you creating this thread, and I heard what a great time you had in Las Vegas.
Last weekend I flew two days in a row, and paid for it. And felt like a freak on the airplane in my Solaris--ironically, my ankles got really puffy (my LE therapist has always felt like I might have a bit of underlying primary LE--so it's one more thing to worry about.)
You shouldn't have to "pay" for having a great time. LE stinks.
Thank you, thank you, thank you for starting this thread.
Hope the LE is responding quickly.
Kira
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I went to the clinic today. I am not happy with getting the new girl. grrr. Some places in my arm are normal, some smaller and some bigger. Gee what's up with that? It could be normal at one and the next one less and the next one bigger. Anyway it wasn't up much but she is still putting me back through wrapping and coming in for MLD for two weeks at three times a week. I had 87.10 mill's in fluid and a difference of 1.767% difference between both arms. I want get to start till Oct. 24. I could have it down by then.
I think she is also going to see if I can get an new tribute. It really is not quite long enough
I lost 4 pounds my first week of weight watchers. I think my headaches have been from the no caffenie so I feed it last night as a treat and I don't have one today.
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KittyDog, congrats on losing 4 lbs! That is great. Can't you request the therapist you want at your clinic, or did you just want "first available"? I can understand the frustration, that's how I felt until they switched my therapist. I've heard this several times now and I kept hoping I'd figure it out for myself, what is MLD? I thought it was the wrapping, but I guess not.
Today, my radiation got cancelled because the machine wasn't working. Grrrrrrr...... but one good things is now I don't have to take off the wrap the therapist did. I think that will help get some of this resolved. I'm a little nervous of the hard area on my arm near my wrist. The therapist thought it would get softer with the wrapping. How on earth did it get so bad on me so quickly? Is it just the way it is if you don't treat it immediately? I remember thinking the swelling was down and I felt silly going to a therapist and then it got worse. I guess because of getting radiation. Grrrrrrrr......... I really hate this.
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OK ladies I don't want to seem like I'm in denial here, but I have been able to directly correlate the arm pain and swelling with wearing a bra. No bra = LE symptoms. Is it possible that I don't really have LE? (That's where the denial creeps in) Here's the kicker . . . I just had my nips done and now it's kind of necessary to pad things for a while until they shrink down to a normal size. LOL. Anyone know of a comfy, low-cut padded cami?
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