Topic: GRRRRRRRRR I HATE LE..........

Oct 9, 2018 11:03PM - edited Oct 9, 2018 11:04PM by JO-5

Susan,

The one I watched on line was by JoAnn Rovig from Northwest Lymphedema Center. I have not watched her for about 4 years and when I tried to find it I could not get it. Maybe someone else knows if she is still on.

I learned a lot from this book, and I believe I was able to keep my LE under control with the massage described in it.

However my new therapist does not use this method. She does use some like this but not all. She was Vodder trained but has incorporated methods from other schools.

It is hard to explain just how she does it. She calls it "inch worm" Using the palm mostly she sort of does a half circle pushing down and circling upward or outward (depending on what area she is working on) releasing pressure on the upward or outward. She moves just a very little bit upward and does it again. That's why she calls it inch worm...because an inch worm moves just a bit. (That sounds weird probably but makes so much sense when you watch her do it) It is very gentle....just enough to move the skin. It's sort of like you're scooping with an icecream scoop in a half circle releasing at the top, very gently.

I'll stop right there because it is just too hard to describe. In lieu of anything else, I would use the massages in that book and also the first 15 minutes of the Lebeds exercises. (PICTURE OF THAT BELOW)

Remember everyone is different and she is mostly using the method I tried to describe, because of my arm. It has a firm area she is trying to reduce and it is improving. She says it won't get a lot better until I get the wrap substitute velcro thingie. I have an appointment to be measured.

Both can be purchased on Amazon. I wish I could explain better what she does.....but this book and the Lebeds DVD are good in my opinion.

Joanne

Oct 10, 2018 12:04PM SheliaMarie wrote:

Jo, I don’t understand why you need to be measured before ordering the circaid. The beauty of the thingy is you adjust it as needed. Regarding the hand part of the contraption, you trim it to fit after you get it. Honestly, I had zero issues with ordering it and taking it to my therapist so she could show me the proper way to use it.

Oct 10, 2018 06:31PM JO-5 wrote:

My therapist is having me try the Juzo. She said the velcro lasts much longer than the ciraid. It is adjustable, and reversible cream to black, and if I don't like it or can't wear it I can return it.

She said it will be flexable enough for me to bend my elbow. I don't know how much it will actually be but she thinks about $123 - $125 after my senior discount (seniors get a discount on Wednesdays ) and with a script from the dr it is tax free.

Thanks ladies.

Joanne

Oct 11, 2018 12:55AM VLH wrote:

Have any of you that use a pump had an issue with the Velcro on your lower garments losing some of the stickiness" / adhesion? The tabs that snug up the waist often come undone, even though I've only had the pump a year. I've become fairly adept at holding the waist tabs in place as I gracelessly fling myself onto my high Queen Anne bed, trying not to bend, but it's not pretty and I sometimes get so frustrated that I give up for the night.

I recall the pump rep saying insurance will only pay for new garments every five years. If I make it that long, I'll be on Medicare & doubt they'll pay anyway. The heavy garments contribute to night sweats so they'll probably require fumigation by then. 🤢

Thanks, Lyn

Oct 11, 2018 09:45AM susan3 wrote:

I don't know why it isn't taken seriously. Even my doc, who is a great onc, has never asked me about my arm. And when the other started to swell, not sure if it's cause of nodes or what, I said do you want me to pull my top off so you can see it.....not just feel around,.....cause it does look real swollen. He said no.

Why, why is this ignored. I don't get it

Oct 11, 2018 04:36PM susan3 wrote:

can't help you. No bobbys left here 😳

Oct 11, 2018 09:40PM JO-5 wrote:

Binney,

Will do it tomorrow morning for sure! Late....had a hard day....bedtime!

Spirit is willing but flesh is weak .....went for a day trip and some shopping ....first time since fly bite.....and I am done in.

I will click on that site tomorrow and do my part.

Joanne

Oct 12, 2018 03:38PM LindaKR wrote:

In the past I had custom one-piece glove/sleeves because using two pieces caused addition hand swelling, but now that I have Medicare, it's not covered, and they cost 700+++, so needless to say I'm trying to find something that will work.

I say an experienced fitter and she recommended, in fact sold me, Jobst Bella Strong glove, which is longer and the Juzo soft sleeve. I've worn it 2 days now and I notice that the Jobst seams appear to be pulling apart, and the palm of the glove is already pilling a little. Also, first day way more hand swelling because of the double compression, but the second day I put the glove on first so that i was under the sleeve and that seemed to work better, but it still seems that the double compression is an issue - do you know of a sleeve that has less compression at the wrist, or any other suggestions would be great. Thanks.

Oct 12, 2018 08:45PM JO-5 wrote:

Vargadoll,

Found this on the internet:

Contrast Enhanced Spectral Mammography (CESM) is a special type of mammogram that is performed after an IV injection of X-ray contrast (iodine). CESM shows all of the information of a regular mammogram but also shows areas of increased blood supply. Breast cancer typically has a greater blood supply than normal tissue so it is highlighted on the images.

Joanne

Oct 12, 2018 11:15PM LindaKR wrote:

JO-5

That is sort of like my customs, except they have fingers. I can't wear gauntlets, have to have a glove, or my fingers swell up like sausages. 😔

Oct 16, 2018 01:04PM - edited Oct 16, 2018 01:05PM by JO-5

Binney, you were right once again.....Remember when you told me at the beginning of my fly bite saga .... that the redness may never go completely away?

My therapist told me yesterday that she attended a seminar given by Ohio State University by a lymphedema therapist.

One of the things he talked about was the redness that remains or comes and goes with a lymphedema flair, and especially so with some kind of bite. She had a name for it but of course I've forgotten what it was.

My arm is just pink now, thickening better but still there, swelling much better but still there.

Fitting for velcro wrap is next week.

Hope you and all the other "swell" ladies are doing well.

Joanne

Oct 16, 2018 06:07PM JO-5 wrote:

Lyn,

I am just a bit leery about the Velcro sleeve. I am sick and tired of laying out big bucks for things that do not work, and I'm afraid this might be one of those times.

My therapist wants me to wear my regular sleeve as much as I can through the day, especially when I'm up and working. I managed an hour today. Sometimes it stings or burns my skin. Other times it is just fine. It is a Juzo. I wonder if there are sleeves that are made of smoother material?

I looked on line and found some but they are $50. I have 3 of the Juzo's so I will just try to wear them...... This Velcro thingie is going to cost in the neighborhood of $135.....and my prosthesis fell apart....and insurance will not pay for one until January! Those are way over $100. This is getting to be very costly.

I wonder if your therapist could get a demo of the Velcro wrap and see if it would be possible for you to get it on? I go for the fitting next week and my therapist told me they will show me a couple of different kinds, and even let me try one.... Perhaps you could find a medical supply place that would do that for you.

This can be so discouraging! One thing I am going to do is try my very best to lose some weight. I know the last time I lost a lot of weight my LE was much better. So far.....I've gained....7 pounds! Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.

Good luck!

Joanne

Oct 17, 2018 08:21AM JO-5 wrote:

Vargadoll,

I looked at that site, and their measuring chart. I'm not sure I would measure right or get the right size.

I think next week when I get measured for the velcro wrap I will ask the fitter what size sleeve I should get. Maybe they will even have something smoother.

I just want a solid color one as close to my skin color as possible.

Thanks. We all can use as much info as we can get.

Joanne

Oct 25, 2018 07:26PM - edited Oct 25, 2018 07:37PM by JO-5

Ladies,

I was measured yesterday for my Juzo velcro wrap. It has to be ordered and won't be in for a week.

I've researched it and it sounds good....but I was not happy with the person that measured me. #1 She did not know that this one is reversable from black to nude. When I assured her it was she said, "I don't see how it could be".....then turned it inside out and saw that it was.....OK.....here I go again with someone that doesn't know their job!

#2....After she measured me I asked what size I was getting and she said she did not know yet! I was assured that this lady was really good and would know what to give me. (I'm hoping she just had to compare my measurements with the chart)

#3 When she told me the price it was way over what my therapist had told me. I asked if that was with my senior discount for coming on Wednesday...and no taxes because I had a script. She looked dumbfounded and said, "Oh, this is Wednesday isn't it?"

I guess I've been through so many bad therapists and techs it has become a pet peeve. People that don't know their jobs!!!!

OK....got that off my chest. Ha...still doing the massage twice a day. Arm still a bit red and swollen. I hope this new wrap works.

I am having trouble wearing my sleeve. It irritates my skin. Anyone have a remedy for that?

Joanne

Oct 26, 2018 06:50AM JO-5 wrote:

Binney,

Mostly the inside of the elbow, then the red area. but eventually the whole arm.....and that's when I take it off.

Yes I am anxious to see if I can tolerate the new wrap and also if it helps.

The massage seemed to be really helping but now...not so much, unless I do it more often.

The therapist said this is not going to get much better until I use the wrap.

Thanks.....hope you are well.

Joanne