GRRRRRRRRR I HATE LE..........
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Becky, why do you need to cancel the June tour?!
Do you mean because you think you'll still be wrapped by then? Have you asked your therapist about an estimated time frame for getting garments? If it's within the next couple of weeks you should be able to get them before you leave, with a week or so to try them out and make sure they're right. If it's a trip you really care about, do check with your therapist before you cancel.When I fly I always wrap anyway -- gives better protection and keeps the TSA guessing
. I sure do hope you can make this trip, and that it's relaxing, refreshing, and full of only happy memories!Be well!
Binney0 -
Binney, My therapist won't give me a time frame. When she gives me the go ahead I have to go to this orthopedic place to be measured and fitted for a custom sleeve. I lost 100 lbs several years ago and have a lot of loose skin under my upper arm which makes it very large hence the custom make. She is not sure if it can be done in time. I have insured the trip so can take it later. I still have to practice wrapping--haven't yet as they do it. I am right handed and of course it is my right arm. I hope my left can do the job. My sister will be with me so I am sure she will help. I was just discouraged this am as it seems as if there is no progress in 3 weeks with all of the work. Plus I am still working full time which makes it hard to fit in exercises, MLD, etc. It will be easier when I have the summer off. Plus it was probably a tamox moment. I know some of you have bilateral LE, truncal LE etc. so I should not be complaining. Whenever I go on the trip I will enjoy it to the hilt! I still have fond memories of Italy last summer in the meantime. I am even toying with the idea of retiring!
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Well, phooey, Becky!
Still, an insured trip is a fine thing. So is retiring, for that matter.
I love your spirit -- you're an inspiration!Do keep us posted!
Binney0 -
Becky, I sometimes see lines from the padding roll when I unwrap. It sure sounds to me like you're making progress--although you will need to be able to wrap yourself.
I'm left handed, and my left hand/arm is my LE arm, and my therapist has me kneel by the bed and use the mattress to support the roll of short stretch bandage, and it works great. You can also sit by a table and use the table to be your "extra hand". I do the first bandage without the bed, but as I wrap up the arm, the bed is there to keep the roll from getting away from me, and to hold it as I wrap around.
Hope you're ready to take the trip soon.
Lost 100 lb--you really are an inspiration, in so many ways.
Kira
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Kira--I think I will be able to wrap myself when the time comes. I have been watching my therapist carefully. I only hope I can get it tight enough. I keep reading that you have to do it just right. How is the wrong way to do it? I did get JoAnn Rovig's DVD where she wraps herself and it does not seem so complicated. But watching is not doing I know. So when your LE is under control you do not see lines. Right? I guess I have a ways to go. If you all hear a shout from the skies one morning it means there were no lines! Then off to get a compression sleeve and gauntlet or glove.
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Becky--my LE therapist--who is super well trained--does not believe in wrapping too tightly--if she wants more compression, she just adds more layers. I was once wrapped too tightly, and it hurt! There was a study comparing higher compression wraps vs. lower--and the lower ones worked better.
So, yes, you can wrap incorrectly--the key is to run your hand over the wrap and "feel" that it goes from firmer to less firm as you go up, but I totally agree with my LE therapist that a wrap should never be painful or too tight.
I was paying attention when I wrapped tonight, and I use the bed to hold the roll as it goes underneath my arm. I haven't watched the JoAnn Rovig DVD for a while, but I kind of remember it was awkward, and she was standing up...
My LE is primarily in my hand/forearm, but even when it's under control, I'll sometimes see some lines from the rosidal soft foam roll on my arm.
If you ever wear a Solaris or a Jovipak--they leave tons of marks and indentations--on purpose.
Waiting for that happy shout from the skies.
It's kind of sad, but the wrap feels comfortable to me--
Kira
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I agree, Becky -- even in good control I have some marks on my arm after wrapping. I'd think it was kinda strange if I didn't. Best way to know if the swelling is down is by keeping track of your measurements, which I'm assuming your therapist is doing from time to time. Maybe ask her to clarify that for you?
I wrap both arms, and I sit in the middle of our bed to do it so the stupid bandages don't get away from me. <Sigh!>
Do try it while you're still in therapy so your therapist can check it for you. It took me several tries (uh, and a lot of tears, and some bandages heaved across the room...), but now it's not a hassle anymore. You can do this!Hugs,
Binney0 -
i only wrap anymore, if the swelling is uncomfortable. but, with the full gloves, as well as when i wrap, im glad there's lines. when there is, its where the fluid has gone. when my hand is exceptionally swollen, they're really evident, and the swelling is much less. i must be super sensitive, cause gloves are suppossed to be so good at that. i consider myself lucky!
my le therapist is seeing me ix a wk for now, to get everything in control. not just LEE.. she reccommended no nighttime "stuff" but, from you ladies have said, thats' the only way i'll move the fluid, if it gets bad..Yes? causse i'll ush for an ?Rx if need be... she'll do it if i wanna.. i just dont know if i need ta..
i agree with you, binney; i have a really SMART LE therapist, in a really STUPID state, who doesn't allow them to be fitters.. so, i have great therapy, an Rx for all i need , and no fitters to be found that my ins will cover.
I always heard, that if the ins can't provide you with someone, they have to cover someone who isn't in their system.. anyone know if that applies to fitters?i know one thats' good, but cigna doesn't recognize her...
the last one had so many complaints, he is disallowed by cigna. but, the Gottfreid gloves were perfect!!! what do i do now!!!???GRRRRRRRRR
3jays
stupid
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3Jaysmom: my fitter isn't involved in my insurance for her services--her company charges for the gloves/sleeves/night garments, and essentially her fitting services are part of the mark up on the garments. But, her company participates with my insurance.
Kira
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My therapist does the fitting and sells the gloves/sleeves at her cost plus shipping and doesn't bill insurance. The gauntlet that I get cost me about $15 per gauntlet but not custom.
Sheila
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Hi Kira & Binney, Was there anything at the fashion show that was promising looking? I've got two big "events" in the next two months (college reunion, daughter's Bat Mitzvah) and I'd love to look fabulous. OK, fabulous is too lofty a goal. I'll settle for a bra that I can wear for 3 hours without getting antsy. KS
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Thanks Binney, Kira, and 3jays for the wrapping advice. Kira, yes my therapist told me about tighter at base and not as tight closer to shoulder. She also is not making it uncomfortably tight. I add one more layer when I am at home and on weekends. If I wore to work I would not have any clothes to go over it! I will ask tomorrow when she will let me wrap under her supervision. I called the fitter they told me I should go to when I am down to arrange a custom made sleeve/gauntlet. They said it would take 2-4 weeks. They said they order from either Jobst, Medi, or Juzo. Which one do you recommend? It sounds as if you use Solaris. Do they make sleeves? I have one other place I can go to. I am going to check out both. Onward and upward I guess. Thanks again.
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Becky, for sleeves, I use off the shelf--and I do like the medi sleeve, it's nice and long and soft, and I also have a Juzo sleeve that is nice--it's not the "dream sleeve" but just the regular fabric. Jobst tends to have less compression, their claim to fame is that they come in just three sizes, so a sleeve will fit a wide range of arms--the others have multiple sizes. I do not like the Jobst "Bella Soft"--and we talked to the Jobst rep, and she says it's getting re-done--it's too short and made with wool. I've never had a custom sleeve--I do have custom gloves: they're Juzo (because that's who my fitter prefers) and I wear off the shelf medi 95 gloves.
Solaris is a night time garment--a quilted garment with foam to use instead of wrapping.
I wrap, and just heard from the head of a major LE teaching school that he prefers wrapping over garments, but garments are way easier.
All the stuff you never wanted to have to know.
http://www.stepup-speakout.org/Lymphedema_garments.htm
Kira
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I have another question. Is it okay to take a day off from wearing the sleeve if you are not going to be doing anything physical?
GRRRRRR because I just get tired of having compression on. I wore my too big sleeve today because I just didn't feel like I could stand to wear my custom one another day. I am moving it around so the seam isn't quite in the same spot everyday but I hit the screaming point yesterday.
Also why do my fingers keep turing purple in the evenings? It's not too tight and it's not from having my elbow bent. It doesn't do it every night and I can't find a reason for it. Anybody? Sometimes I can just take the glove off and it will stop. Other times I had to take the sleeve off too get it to stop.
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I have hardly worn my gauntlet since September and thought I was doing good. Today I spent the day outside under a tent at a local historic house helping my mom demonstrate and talk about quilting to the fourth grade classes of the county. Temps were in the mid 70's, didn't have my usual amount of water to drink (over 48 oz) and tonight I noticed that my hand has swelled slightly. I put the gauntlet on when I got home and my hand is almost throbing from the compression. I will be wearing the gauntlet for the next couple of days and push drinking water and hopefully the swelling will go down. I haven't wrapped in a long time, I guess I was in denial.
Sheila
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Sheila--that stinks! I call it the "Jaws" experience: "Just when you think it's safe to go back to the water...." But it's so darn disappointing. I want all my gains to be permanent. And when they're not, I get upset.
Hope it's all better soon, and the swelling from yesterday does not negate the fact that you didn't even need compression for months.
Kira
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I am not sure where to post this, but please forgive me if it is wrong. I am ready to go to a fitter (a prosthetic/orthopedic place). I called my insurance company to see if and what they covered. He said they covered 85% of anything with orders. My PT/rehab place said they do not bill insurance for "goods", just services. Do I get these orders from my BS, my GP. Then does the fitter do the billing? I am so confused. Do orders mean prescriptions? How does it work for others?
Sheila- I do hope you get quick resolution. Bummer on the setback.
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Sheila, phooey!
Drink lots and elevate that puppy. And know we're all looking forward with you to quick resolution.Becky, I get my prescriptions for garments from my onc, but any of your doctors can do it. I have them fax them right to the fitter, but you can also hand-carry. The DME supplier does the billing.
My insurance company has to approve the items beforehand, so I take (or fax) the prescription to the supplier, they submit it to the insurance company for approval, then I get fitted for it, then they order it, then I go try it on and take it home (or return it for adjustments), they bill the insurance, and I then pay any percentage. If you have Medicare they won't pay for it at all, but if you take in a prescription they can bill Medicare and when it's refused you can appeal it. With help from Bob Weiss, the NLN Patient Advocate. If you need his email let me know.
Here's what you have to watch out for when you're paying a percentage: the price the DME supplier will bill your insurance for can be around three times (or more) the price they get charged for it by the manufacturer. So the percentage some insurance policies require you to pay may be MORE than the cost of the garment if you bought it from the maker or online. Worth checking out if it's something you can order elsewhere. Just a thought.
Okay, now we need a Girl Scout badge for getting our garments ordered successfully!
Good luck!
Binney0 -
Wow Binney--sounds a little complicated. Thanks for your input. I have to get a custom made garment so have to go to place for them to measure me. I don't have Medicare yet--only 63. Wish me luck on this ordering journey. It will be great to only have to wrap at night!
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Hi ladies, a question: It's been warm where I live this past week and for me, that means swelling. I'm managing it OK, but the swelling is putting pressure on the gloves ... which means I'm getting some raw, sore places between my middle and index finger on both hands. My fingers are webbed and only in that place am I getting some raw places. It's really sore! I know an infection would be very bad. I tried putting band-aids or gauze in those places but it doesn't help very much. I put a blister pad between one finger and a band-aid on the other and the blister band-aid was by far better ... is there anything else I can get that will help the chaffing between my fingers? My swelling is down and I have to wear the gloves to keep it that way ... but I'm concerned about these raw places.
any suggestions??? thanks in advance!
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Hi Ladies,
I was wondering if any of you experience different sorts of pain with your lymphoedema. Somedays my arm and chest feel ok... other days... especially if wearing a bra... i experience such discomfort in the top and under my arm and on my chest wall.
Scares me every time it gets sore. I have asked around wondering if people still have pain after axillary clearance but most say after 6 months or so their's settled down.
So i guess i wonder if the discomfort is from the LO or something more sinister.
Any suggestions would be so appreciated.
Kerrie
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Dawne-Hope, Binney has said that putting a little bit of cornstarch on that area can help with the rubbing on the webbing. I haven't tried it yet but since I have started wearing my gauntlet again, I am going to try it because I get sore on the thumb webbing. I have also tried the clear sticky disks that quilters use as a thimble. (look up www.hancockfabrics.com/viewproduct.htm?productId=47582054 ) I haven't tried using it for my thumb problem but it does stick and stay in place and acts as a second layer of skin when quilting.
the link didn't work properly, it is called THIMBLE-IT. do a search on hancockfabrics.com for the product.
Sheila
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Thimble it looks like a neat product to try. Hope this links works.
http://www.hancockfabrics.com/viewproduct.htm?productId=47582054
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I have been wrapped 24/7 for four weeks. I have been seeing my therapist 3Xs a week for rewrapping. BUT she told me to unwrap Sunday night, take a FULL shower and rewrap myself! I am so psyched but so nervous. Wish me luck. I hope I don't do any damage. And if my measurements are the same on Monday as they were yesterday, I get to make an appt with the fitter to get measured for a sleeve and gauntlet. Downside is that I will have to have a custom garment made and they said it would take about four weeks. But a light at the end of the tunnel with full time wrapping.
I have a question. Is there anyone out there who has actually bought bubbles to start the Healthy Steps exercise as is recommended? I do the first part of the DVD at work each afternoon and could just see my coworkers faces if I started blowing bubbles all over the place! I laugh everytime I start the video.
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Jo thank you. Yes you have put my mind at ease ... so much.
I have asked so many people and no one seems to have the discomfort i am experiencing.
I hardly wear a bra now because the discomfort at the end of the day just isnt worth it.
I also seem to have a feeling of constant fullness under my arm that has really had me worried until you answered my post.
I guess as you say it is something that won't kill us and something we have to learn to cope with, and i guess as time goes on there will be more good days than there are bad.
Thanks again Jo... you really have made me feel so much better.
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Kerrie, I too have pain with my truncal lymphedema, but only when it's flaring. Keeping it in good control really helps the pain. Like Jo, my pain seems to move around, but is more constant just in front of my axilla.
True enough lymphedema isn't likely to kill us, but you do need a good lymphedma therapist, some therapy, and the skills you need to continue to do the necessary self-care. The pain "helps" by keeping me on track with the self-care!
Here's information on truncal lymphedema. (And other pages on the StepUp-SpeakOut site can help you find a good therapist and learn about therapy.)
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
Do ask any of your doctors for a referral to a well-trained lymphedema therapist for evaluation -- lymphedema treatment is painless, non-invasive, and drug-free.
Whew!Be well!
Binney0 -
Becky, I'll be thinking of you tomorrow.
Hooray! You can do it!
Well, then again, give yourself plenty of time, and don't be afraid to take it all apart and start over. And over. And, uh, over.
Like any new skill, it takes some practice, some patience, a sense of humor -- and maybe some brownies. Don't worry about doing damage to yourself -- if it hurts, redo it. If it feels right, it probably is.YES! to graduating to compression garments! Let us know how it goes.
Huge hugs,
BinneyEdited to add: When I bought by Lebed DVD it actually came with a tiny bottle of bubbles and a miniature blow-up beach ball. But I've bought bubbles since because it's just fun and funny. I'm not a fussy housekeeper (that was a massive understatement -- just ask Kira!
), so I don't care much if there are bubbles popping on the floor and the desk chair. My kids and dogs love it, which of course makes it easier to face doing it. I don't use them all the time, but I keep a bottle on my desk for when I'm feeling whimsical! 0 -
Thanks Binney,
I so appreciate your responses.
Now that you have said how the pain keeps you in track with your self care... i realise that i havn't been doing a lot of it this past week as i have been on holidays. Just seems every time i get pain i go into instant meltdown.. don't seem to have a lot of logic happening at the moment.
Binney i do have very good LO therapists that have taught me so much about self care. I had a month of intensive treatment as an inpatient(thank God for private health insurance). Daily bandaging, massage and exercise. They reduced my arm by approx 50%. Everybody should have this treatment available to them, but unfortunately our government doesn't recognise or acknowledge LO as the major health issue that it is.
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Kerrie, I have truncal LE on the outside of my breast and on my trunk next to the breast. It was also slightly swollen and seemed to be getting worse a few weeks ago. It did hurt more as the day went on with my bra on. My LE therapist and I discussed a compression bra but she recommended kinesio tape (SP?) first. She taped it on me and I got almost immediate relief. I kept it on for five days then she removed it. The swelling was almost gone. I took a week's break and it began to hurt again. We taped it again on Wednesday and again immediate relief. I just took it off and the swelling seems to be gone again. Ironically I feel more comfortable with a bra on when the tape is on. I had been worried about my skin reacting as it has reacted to other tapes before, but I had no trouble with it. She did wipe my breast with Pepto Bismol before taping. I guess it helps with stopping reactions. The first time she used black tape and it really stuck. This last time she used beige and it was not as strong and easier to pull off. It is great to be able to turn over in bed at night and not have pain from the truncal LE. I found a picture on a website on how to tape the breast. If you want me to send it to you, let me know. The whole article was on truncal LE and I learned a lot. I know the taping isn't for everyone but it has really helped me. Becky
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