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

Mar 14, 2020 02:27PM SuQu31 wrote:

Thank you, BlueGirlRedState, for the tips and links. Interesting to know that about Medicare. What in the world is that? Are we miraculously cured once we reach 65????? I do have coverage for two sleeves per year now, but they are still expensive. I think I likely would be covered for a pump, but don’t think I am at that point yet.

What would I do without this site and all you wonderful women?

Mar 15, 2020 11:38AM MsPrecious wrote:

Please my flexitouch pneumatic pump doesn't pump the lower half of the breast where the swelling is more concentrated neither does it pump the axilla. I have trunk and upper limb garment. The trunk is working fine even though I noticed that it works more on the groin of the unaffected side than that of the affected side. The chest garment is always hard to put on for it to lay flat on the shoulder and touch the upper chest. I don't want the unaffected breast to be pumped but that's what the pump does. Two trainers from the company tried to help set it up but I know something still isn't right. I called the helpline but nothing came out of it. Please any suggestion to make it work on my breast and for it not to stimulate the normal breast? I watched videos about how to put it on but the garments used in the demos doesn't look exactly like mine.

Thank you.

Mar 16, 2020 03:46PM Vargadoll wrote:

I'm flexitouch and now so this is a voice message. I wear my swell spot wrap under my arm piece. My lymphedema therapist instructed me to do that and it works quite well . Check with yours first though .

Mar 16, 2020 08:44PM BlueGirlRedState wrote:

Minustwo - can you give the details of how your LE therapist orders for a patient and has MEdicare cover them. My LE is associated with a major hospital and has Medicare patients. I'm sure she would help them by doing this if she knew how.

Apr 26, 2020 11:17PM Bird-of-light wrote:

are you okay

Apr 27, 2020 05:43PM MinusTwo wrote:

I'm having trouble with this thread opening at the header instead of the last post. Also it shows there's one un-read message, which is not true. So I thought I'd post to see if it would break the 'jinx' before I sent the MODS a PM.

May 12, 2020 10:01PM - edited May 12, 2020 10:01PM by MsPrecious

Please has anyone seen improvement of breast lymphedema with dry skin brushing? I would like to know if it truly works. I just ordered some brush from Amazon.

May 13, 2020 09:54AM JO-5 wrote:

I have been afraid to even try dry brushing because my skin is so dry and fragile. Even a tiny scrape might cause cellulitis for me. I have used a soft wash cloth rung out as dry as possible, and also sometimes put cream on my hands and rub it into my hands really well until they are almost dry. Those two methods seem to keep the hands from just sliding over my arm and abdomen....and helps push the skin better.

Let us know how the brushing goes.

I'm still not having any luck getting the LE down in my right side abdomen where I had the mastectomy and lat flap. At least it is not getting worse.

Joanne

May 13, 2020 11:50PM JO-5 wrote:

Binney,

I did wear a light weight compression garment today. I am going to wear that for a few days and hopefully can graduate to the tighter one. My therapist told me that massage might not get this down. A lot of it .. in fact probably most of it... is the results of the lat flap. As my back scar healed it has pulled the skin on that side until my navel is about an inch and a half to the right of my body. Most of the swelling is on that side from my back scar almost to the center of my abdomen. Massage just does not help. I think I could rub it all day long and it would not make any difference. Many ladies that had the lat flap have swollen abdomens. I see that some that just had mastectomies also have larger abdomens. What is that about....anyone know?

I'm having a hard time keeping my weight down.....and I don't know if it is actual weight or fluid. My arm (deer fly bite last year) is doing fair. I can keep it down with massage. It is not all the way down, but she told me it probably never would be.....but it is not red, and is not near as big as it was.

I am going to get really serious with the diet and see if that helps....plus start the Lebeds again.

I stopped Lebeds because since March 13 I have not felt well. It started with sore throat, cough, all the symptoms of Covid except chest pain and fever. Since then it has gone from all that to digestive, terrible fatigue, headache, sinus, (all the things that they have now added as possible symptoms.) I could not get a Covid test anywhere, because of no fever and chest pain.

I still have the fatigue but can do some Lebeds, and am feeling better.

Have any of you felt that you might have had the virus and not able to get a test? In Ohio you almost have to be at deaths door to get tested, while they keep telling how many tests are being given and are available. My daughter is very ill and has coughed for weeks, and a dr told her on the phone that she did not have Covid. How can she say that when folks with no symptoms test positive.

Well, I got way off subject but.....but wanted to explain why I have not been massaging, wearing compression, and exercising.

Everyone....be well and keep up you massages, and compression, exercise.

Joanne

May 14, 2020 02:08PM Binney4 wrote:

Jo, the beauty of the Lebed program is you can start easy, and even just the 15-minute opening helps with moving fluid if used consistently. I too quit it, with no excuse anywhere near as compelling as yours. Just got tired of doing it. I've started back now and I'm finding it helpful (also nice because I no longer feel guilty about NOT doing it!) Hopefully I can continue to hang in there with it, since I do much better when I'm consistent.

The COVID test situation is certainly confusing, no? All this talk of how available it is, and still no way to get it. Hopefully that will soon be remedied, since it's crucial to being able to track the spread (or lack thereof, for those who are boundlessly optimistic) as so many of us venture back out into the world. (Not me, though--I'm planning to stay as locked-down as possible. Fighting the virus is all about the immune system, and after both BC and LE I don't trust mine!)

Hugs, and stay well,
Binney

May 16, 2020 10:56AM Binney4 wrote:

Jo, you rock! Great slow start, and I find it so hard to start slow. When I screw up the determination to get back on track with exercise I want to go all-in and have to stop myself and rethink moving forward carefully. Never easy to balance all this. I've been wondering a lot how the depression/frustration of the current world health crisis is affecting all of us lymphers, since it takes some "oomph" to do a good job of self-care, and that can be hard to come by when we're faced with worries like the present, so you're an inspiration!

Aw, getting your hair done is a real lift. So glad you could do it safely and comfortably.

Onward (gently)! And hugs,
Binney

May 17, 2020 11:01PM MsPrecious wrote:

Hi Jinx27,

I wear juzo sleeves and mediven gloves. I feel you need to go to mastectomy and prosthetics fitters in the hospital to get measured accurately and then you can be buying it on your own. In addition, I think lymphdivas is the company that makes garments with prints on them. I assume those garments are the soft type and depending on how you are feeling, you may or may not need it. I can't wear soft ones for now. Please elevate the hand while waiting for the garments to arrive. Hope you feel better soon.

May 18, 2020 10:01AM HersheyKiss wrote:

Jinx, I alternate between Juzo and Lymphedivas sleeves. An LE therapist did my initial measurements, so I order online based on those figures. Lymphedivas has an online measuring guide as well as customer support specialists to assist with proper measurements. As MinusTwo wrote, give them a call.

Lymphedivas sleeves are available in patterns as well as solid colors. For summertime wear, I much prefer the sleeves from Lymphedivas. On hot days, Juzo sleeves feel like heavy bandages to me.

May 30, 2020 07:46PM fishingal68 wrote:

Hi all,

What is your experience with cellulitis?

I've had lymphedema for over a year & I have been extremely careful with my affected arm. When I woke up this morning, I knew something was wrong. It was hot, heavy, and had a swollen, red spot (looks like a bug bite). After I cussed a little, I got on Teladoc and had a prescription for antibiotics called in. The Teladoc told me to wear my compression sleeve & 'use my arm' like normal, but to not use my lymphedema pump for 48 hours. He said if it worsened, I needed to go to ER immediately for IV therapy.

Since I live by a lake and it is summertime, I know I am going to have to be very cautious. What do you all do to stay well?

Thanks!

May 31, 2020 03:03PM SerenitySTAT wrote:

I've had one mild case of cellulitis where I had a swollen, painful, red area with no fever. I needed just one round of oral antibiotics. For prevention I keep my skin moisturized and covered to avoid sun and bug bites. I use an antibiotic cream whenever I find any sort of skin breakage.

After recovering from cellulitis, the area was clearly fibrotic. Consistent use of a new Mobiderm sleeve softened the tissue. My LE therapist recommended it.

https://www.thuasne.com/en/mobiderm-autofit-sleeve