GRRRRRRRRR I HATE LE..........
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Thanks, Carol but your link wouldnt work. It re-directed me, possibly because of the period at the end (?) Try this - http://www.zulily.com/e/spanx-022113.html?pos=4
I warn you all, these suckers are going like hotcakes
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oops, thank you for fixing the link, Purple.
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No prob, carol. I managed to snake one of those half price garments so thank YOU!
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Thanks Binney, a couple more questions, how often do you wear the night garments and how often do you replace them?
Sheila
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Sheila, I can't get away with not wearing them, so it's every night
. In summer I refrigerate them during the day and they're refreshing to put on--at least long enough to fall asleep! They last about two years. The old ones I keep for nasty events like going to the ER, to keep stupid medical people from attacking my arms. It slows them down and makes them ask questions. Seems to inspire awe. I also wear them sometimes for long car trips (I live out West, where car travel invariably involves changes of altitude). If we stop for a break at, say, a McDonalds, they also inspire awe and wonder there. Since we have service dogs the assumption seems to be that they're in training as attack dogs and I'm wearing bite gear. I do not have to worry about being mugged.
Hugs,
Binney0 -
Sheila - I love my JoviPak! They make a daytime one now too that is a little lighter and more flexible, I want to see one for those times that I should wrap, and don't
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Binney - thanks for the great product review, I've wondered about the other brands.
My JoviPak has the fingers sewn which works great for my hand swelling. And last year they sent out have it adjusted for free coupons. I also like the fact that you can get a "jacket" for it that gives a little extra compression, or makes it just a tad smaller if your swelling goes down quite a bit. My LE T and fitter said before ordering I needed to be stable, so you don't want to be actively trying to reduce swelling, you need to be at that maintance stage.
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Thanks to both Binney and Linda for the reviews on the jovipak. I am definitely going to ask my therapist about them on Tuesday.
I have to admit, last night about 2 am I woke up with my arm itching terribly. I couldn't stand the wraps any more and pulled them off. It is a good thing my husband was on the road because everything ended up on his side of the bed. I had worn the wraps since Tuesday almost constantly, only taking off for about 2 hours on Thursday morning when I took a shower and had to wash some dishes (no automatic dishwasher
) and I couldn't stand seeing the dirty dishes in the sink any longer.Binney, I live in the foothills of NC, so I know what you mean about changes in altitude when driving anywhere. The company I work for has a location in Boone (on Blue Ridge Parkway) about 30 minute drive North and frequently I have to travel there for the day. Also our main office is in Sylva, 2 hours away traveling West (but also on the Blue Ridge Parkway), and I have to travel there occasionally, it might be a good idea to get the jovi to wear when I am traveling to these locations since the gauntlet is not working alone for me.
Sheila
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Oh, something happened yesterday that made me laugh and I just had to share it here. One man in my office didn't see me until yesterday morning with my hand wrapped. He stuck his head in my office to say good morning, saw my wrapped hand and asked 'dog bite?' without missing a beat and with a straight face I came back with 'shark bite'. He got a shocked look on his face, then I started laughing and he laughed realizing I was joking with him. Later in the day, another woman who only works a couple days a week in the office saw my arm and asked what happened. I said shark bite and she said 'oh no, was it in a tank?' That got me busting out laughing. At Quilt Guild meeting, I got the same, what happened to your arm multiple times, I said shark bite, they said what really happened, then I said 'stripper pole accident'. Then when others came in late and asked me, others who heard the full explanation earlier would say stripper pole accident.
Sheila
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Sheila, you do live in a drop-dead gorgeous part of the country. I know it well, as my parents lived in Greensboro for years and the parkway was a frequent feature of our many excursions. And it's clear that living in such beauty has given you the grace to accept questioning with a wonderful sense of humor! I hope you get the night garment that works best for you. If your friends and colleagues see you in an oven-mitt-on-steroids night garment, you will need an even more bodacious explanation. I cannot wait to hear what you come up with!
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Sheila, good answers!
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love the answers. I also love that part of NC. Maggie Valley is my favorite place to go. My I wish I could been too long...8 years.
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Sorry Ladies, I hate to disturb you - had a bursa injection in the hip yesterday and Pain Doc told me to please rest and don't do anything crazy for 10 days... Oh man! If I remember right 2 days of "OWWWW" and then it gets better.. Here is the situation - Always thought my thighs were in pretty good shape, but I had a bursa injection yesterday and I noticed all these ripples in my legs.. Cellulite?? or LE??? First thing I thought was I'm just getting fat and need to loose weight. Tell me its nothing....
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Gma, if it's both legs it's not likely LE, as that tends to be different in the legs--one worse than the other or (like me) only one affected. Also, with LE may not be the whole leg, but just one part of it--thigh or calf or foot. I'd look for an explanation elsewhere on this one, but good for you for raising the question!
Hugs,
Binney0 -
My legs are fat but with LE they do not look like cellulite..just big full and tight. Mine starts just above the ankle and slowly gets bigger till the knee. Right leg is about 5 inches bigger than the left.
I discovered about a month ago that this has been going on long before BC. I found a picture my hubby took of our Daughter at an egg hunt. Like most hubbys can't take a picture worth a darn. Got the back of my legs in it. Yes the right leg was big 8 years ago. grrrr.
I can't figure out how to do a picture anymore but this is a picture of my legs 8 years ago. It is a direct link to Photobucket if I did that right.
http://img.photobucket.com/albums/v358/MomToOlivia/Project1_zps5a5ef039.jpg
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Thank you for your input.
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Sheila
What a way to start the day! Your post really had me LOL! thanks.
kitty
Do you know what caused the LE 8 yrs ago? Your post had me curious. Had anyone considered LIPEDEMA?
GMA
I've lost 25 lbs over the last few mos. Unfortunately one of the ' side effects' is cellulite in the thighs. I doubt it this would have happened if I were younger or maybe had done some resitance training. Being 55, and not doing very much at the beginning of this , I really think it was fate .0 -
No idea what cause my LE in my legs. I do remember complaining about my swollen legs but it didn't present as edema and was ignored. My allergist took a look once and sent me for a chest scan which was normal. I guess back then LE was not considered.
My LE PT said it is not Lipedema. I have wracked my brain trying to remember how long ago it all started but I can't remember any specific time. I will say I am a clutz. I was in a bad wreck in college where we flipped a van three times? I fell several times and twisted that ankle bad enough once to go to the ER? I fell down all six of my front steps? I did something to my knee on vacation the same year this was taken? So who knows because of weight, I am at risk anyway. I just am thankful somebody noticed before it became stage 3.
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I'm a klutz too kitty- have broken 3 bones.
You know, I just noticed your LE in your signature stats. Most / many of us dont list it there. Might be a good idea to. Perhaps I will edit my 'signline" Thanks for the idea.
Take Care
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I just want to say that finally I don't feel like I am the only klutz. I bang into everything, trip over my on feet, cut and scrape myself. I really do think it is a part in my brain that didn't develop.
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My LE-PT wrapped my hand and arm today, first time. We discussed sleeves and gauntlets.
I HATE THIS
I can't hold Spookie, itch anything with my last nail , I have no idea how to sleep tonight as I can only sleep on that side. Honest, I don't move all night, hurts too much to move. Been this way for years.
Can't figure out how to wash 1 hand, my face.
Houston, we got a problem.0 -
Spoke to my BS yesterday and inquired about possible options for my annual mammo ( have not had one since my LX) due to the breast/truncal LE. "someone" from her office called me back to discuss my " lymphoma" ( grrr !) and the telephone game began. This woman told me that NO women with LE are ever bothered by a mammo. I asked how she knew and if they followed all of those women. She said they did. I said I dont think so ... ( long story here ) She then mentioned perometry showed I was 7% at 3 weeks out ( WTH?) I said : " Nobody ever infomed me of that !" ( I called there for mos and mos and mos asking and was poo poo'ed) I told her I wanted a call back from the BS.
Lord knows what she told the BS in this little ' telephone game' because as I began to discuss all this with the BS , I asked about the 7% and the BS said , in a very curt manner, " I thought we were going to discuss alternatives to a mammo, not edema" . This is MGH- I think the word edema is used intentionally, btw . I asked if there was a problem , but the phone went silent. This all went on fo a while and at one point, I told her that the woman who called me said that the DR ( BS) never noted I had LE.She replied:" The last time I saw you at 6 mos . I put in my notes : " Pt. has edema and is in therapy"...would you like to see them ?" <bear in mind , I had dx myself thru you ladies and gone to "MLD" therapy by then>
I said " That wont be necessary- if you say it is in there , I believe you. I just want to be sure because my INS CO. will not pay for things unless documented by a DR" ( Btw, they just denied my husband's colonoscopy and threw the bill back at me because it was only 2 yr/not 5 ...of course he had stage 4 colon cancer)
Anyway, this back and forth for 15 mins. and she agreed to request a breast MRI if I wanted one although early calcifications are not clear. She said " I actually have seen women whose 'edema' got worse after a mammo.
She later said :" The perometer records indicate you were 7% at 3 weeks out , but your affected arm was actually 1% smaller than the other arm at 6 mos " ( WTH again !)
I said : 'I was never informed.'At this point, I believe she/the BS was angry and muttered something about ... "you said you KNEW you had edema . Informed ?????!!!!!" She said :" Maybe the 1% was a mistake. I dont know. I'll look into it. " The conversation was longer, but you get it.
I tossed and turned half the night.
I dont know what to do.
I dont know where her hostility is coming from.
I am the one with the " edema'.and btw, here is a Q in all this - between titanium chips and the clips they put in, I presume we are okay for MRIs right ?
I just dont trust any of them anymore.I feel like skipping the mammo, the MRI and the everything ..................
*EDITED for clarity
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Purple, just looked it up for you and multiple places say titanium implants are compatible with MRI.. I would double check when you make the appt though. BTW I do have truncal LE and yes, mammo was painful but was done in a couple of minutes... I just took a pain pill before going. I did MLD right after the appt and had no major swelling afterwards.. the only reason I don't do MRI is because of what you went through with your BS.. I'm tired of being my own advocate and having to fight for things... I am so sorry you are having a hard time, but you know I understand as we all do on this topic. Deep breath...
Funny, you ranted and now my issue doesn't seem as bad.. I have had a remission in my swelling and have been in doubting I ever had LE - then I work without my sleeves on the computer this morning... achey arms and hands not soon after - ok - denial doesn't help anything - sleeves and gauntlets are back on.
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Purple, I've been measured by perometer twice, and both times I was handed a printout that showed my measurements, including a diagram of each arm and the measurements at the points the perometer's software uses to calculate arm volume. No one gave you a similar printout? Seems like you might be able to call the place where you were measured and ask for those.
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Spookie hugs to you I remember the first time I was wrapped, hang in there. I couldn't stand not being able to wash my hand. It is also the side I like to sleep on and my dominate hand. When it was time for me to go to a fitter I said I wanted a sleeve and seperate glove so I would be able to take the glove off as needed to wash my hand.
Good idea you gave me Carol. I have never got a printout and will have to ask for one when I go soon. I have been having real bad pain in my breast for the last nine days. So I will be going soon, I thought it might be trunk LE but they think it may be something else caused by radiation.
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Purple,
I'm sorry that you are dealing with such crap. Do get ALL your medical records after appointments and treatments. I have found so many typos, errors, and just out and out doctor remarks that were not close to the truth as well as doctor not even reporting my pain and complaints saying patient doing well.
When I see gross incorrect info I contact medical records department and request that my records be amended. It's a pain taking time to do this, but a real necessity.
The insurance companies ARE checking your records all the time and basing their decisions on what your doctor says.0 -
Purple, I had a 4 level cervical fusion. There's lots of metal in my neck, haven't blown me or the MRI up yet, there's been several.
I managed to get through an awful night wrapped. It wasn't as bad with 4 drains!! I am going to have a serious chat with my guy tomorrow. I'd rather just forget this than be miserable like last night.0 -
Spookiesmom, let us know what you and the therapist decide. The wrapping is, uh, challenging. On many levels. For sure! But it's also amazingly effective, and a very important self-care tool to know how to use.
Chocolate helps!
Gentle hugs,
Binney0 -
Chocolate huh? Let me check my insulin supply!!!
I'm not done with rads either, 5 regular, 5 boosts to go. The foam was really a PITA under my arm. I'll let you know what happens.0 -
No one gave me any info at all , Carol. It was all at MGH.
The BS office called today and said they will schedule me an MRI (April ?) and try to get the ins. co to pay for it. No mention was made of the LE. Having said that, the BS did say (on the phone) that she would email me my numbers at some point..
I dunno'. I am still quite flabbergasted that it seems she is upset by me having LE.
I dont get it.0
