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

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Oct 14, 2010 10:56PM

Estepp wrote:

EVERYONE can tell I have it... my arm just looks so fat..... I have been to.... and going back to.... therapy..... with a LE specialist... I wrap... I wear compression garments when flying.. exercising... BLAH BLAH BLAH......

I do it all, and I do it right. As a Stylist..... I was told... My job was a good profession to be in as it will help my lymphatic flow.... well....... MY FREAKIN' body... MY personal LE gets MUCH WORSE when I work........

I have to vent this....this is just such an angry spot... such a bad thing.....

If I change the way I dress..... if I do not work in my field...... if if if......................... my LE is ok.

REALLY????????????????????

I pray for a cure for this... I PRAY we all can get NODE replacement SOON... PLEASE allow science to figure out a way to REPLACE our nodes.. SOON.

I would rather have chemo all over again... than deal with LE.

Just a post.... to vent.... for ALL OF US. I do not need a pat on the back here sisters.. I need you ALL to get mad with me....... Post YOUR pain in this trip we call LE.......

We are the Ta Ta Sisterhood! Her2+ BC is what I had.... and yes sisters.. I had lymph node involvement...Plus Radiation AND Implant only Reconstruction. DX 6/25/08
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Dec 12, 2017 01:21PM Binney4 wrote:

Hugz, I do the Lebed exercises instead of self-MLD too, because try as I might I never got very good at the MLD, and the Lebed actually works wonders. So I'd say self-MLD is not necessarily better for everyone. What's best for each of us is what works, and what we're willing to commit to. That differs for each of us, and it can differ over time for any one of us, too.

I have a huge GRRRRRRR! today. Every year I order my WearEase compression camis from Hanger (prosthetics/orthotics place) and they're coded as my mastectomy bras (which they are, and the only kind of mastectomy bra I can wear for that matter). This week when I ordered them the manager called back and told me in no uncertain terms that they would not be covered--they're "too expensive" (well, duh!) and Medicare doesn't cover compression garments (which it doesn't) so they didn't have to provide them for me.

Now, I've lived for several years with insurance that is unwilling to pay for sleeves, gloves or stockings for my LE, but considering that they do claim to cover mastectomy bras, this just....well, GRRRRRRRRRRRRRRRRR!!!

I shall of course appeal, and I'll keep you posted if I get anywhere with it.

GRRRRRRRRRRRRRRRRRRR!


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Dec 12, 2017 03:04PM - edited Dec 12, 2017 03:08PM by hugz4u

Binney. Grrrr dang for sure. When appealing, Can you take pics of the wearease showing the pocket prosthesis hole(proving it's a masectomy type bra) where prosthesis nestle into and your prostheses beside it so they see that this is a masectomy bra. Also a summary of your last claim form showing that they indeed did cover them before. I almost wish we were brave enough to submit a breastless pic of ourselves to!

I wonder if there is a charity that helps with masectomy bras?

My insurance covers two bras which I don't need yet but only 500 for sleeves and gloves a year. Well one custom set is 750 in Canada. Go figure. I need at least two sets a year. Bare minimum. I called my insurance plan and they said that my husbands company didn't get the upgraded plan for their employees. Ugh. Grrrr to.

Insurance companies make appealing so stressful that most of us give up. I hope you don't

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Dec 12, 2017 04:36PM Vargadoll wrote:

I have the pump and use it for a hour each night. I actually fall asleep while I'm hooked up most nights. It does have lots of hoses and does not look high tech at all. My insurance will cover as long as the paperwork will clear before the end of the year. There is a 30 day trail period then the company bills. I'm right in the edge of year end with that. If it doesn't make it on this year I will pay approximately $28 a month for 10 months insurance will pay the rest. I will look when I get home to see the total cost. Tamoxifen leaves me with memory fog


"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/7/2017 Lumpectomy: Right Radiation Therapy 4/13/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Dec 12, 2017 07:11PM MinusTwo wrote:

Binney - Is it possible to order them directly from WearEase and have them covered? Even if that won't work, the people up there are so nice they may at least be able to tell you the name of another vendor who would be willing to process the order.

Saw MO today for my 6 month reviews. He's very involved in the San Antonio Breast Conference. Since it was this month, I asked him if there was anything new on: 1) LE, and 2) neuropathy. Unfortunately the answer was no to both. Maybe some things in the work for prevention at the strart as other people begin this journey.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Dec 13, 2017 02:26AM hugz4u wrote:

minus thx so much for asking your doc about conference and reporting to us. Yes we all need to be looped in on le things.

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Dec 13, 2017 07:52AM - edited Dec 13, 2017 07:54AM by HomeMom

I need a compression t shirt - it tends to collect in my arm pit and below. I would love to get the pump, it did a lot in just the 10 min the girl had it on me. The night time garment was I believe $1,500 so I shudder to think what the pump is. I'll check with my new insurance. Do they charge you monthly for a service or something??

Dx 3/31/2014, IDC, 2cm, Stage IIB, Grade 1, 3/29 nodes, ER+/PR+, HER2- Surgery 4/14/2014 Lumpectomy: Left Surgery 5/5/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 5/29/2014 AC Chemotherapy 7/24/2014 Taxol (paclitaxel) Radiation Therapy 10/15/2014 Hormonal Therapy 12/14/2014 Arimidex (anastrozole)
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Dec 13, 2017 11:08AM hugz4u wrote:

homemom. Get a men's under armour compression tee a size or two smaller. You can wear inside out if the seams bug you,but actually there ok on me and I have sensitive skin. They work pretty good. Under 40 bucks I think.

Must be men's because women's sleeves are cap and not long enough like men's.

Yup vest not cheap. Mine still isn't a perfect fit after altering. It wants to creep up.

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Dec 13, 2017 05:19PM Brneyegrl6608 wrote:

I have the pump and my insurance paid the entire amount. Also, thanks for the tip about the men's compression shirt. I have a few shirts that do not work at all so I have up. It was too expensive to get the vest.

"Life is eternal. We have stopped for a moment to encounter each other, to meet, to love, to share. This is a precious moment. A little parenthesis in eternity." Dx 3/29/2017, DCIS/IDC, Left, 1cm, Stage IIA, Grade 3, 2/40 nodes, ER-/PR-, HER2- Surgery 4/11/2017 Lymph node removal: Sentinel, Underarm/Axillary; Mastectomy: Left Chemotherapy AC + T (Taxol)
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Dec 13, 2017 07:11PM glennie19 wrote:

After I recover from my prophy MX,, I have to get back to looking at compression tees and cami's again. they were impossible while I still had Righty,, just did not work. so now that I'm completely flat, I hope to find some other solutions for my truncal issues!

Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/7/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Dec 14, 2017 01:36AM hugz4u wrote:

Glennie. Goatheletic designed a compression shirt for us. Try googling. I prefer under armour though because ofits wickaway qualities.

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Dec 14, 2017 03:45PM MinusTwo wrote:

Glennie - I like WearEase. They are great about returns & have regular sales.

http://www.wearease.com/


2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Dec 14, 2017 10:12PM - edited Dec 14, 2017 10:14PM by PauletteK

Homemom - I got flexitouch pump and I like it. It works great for me. I had mild Le and it got my fluid out completely before I started radiation. I checked my insurance bill, it is a very expensive equipment but my insurance ended to pay $650 for the pump. I didn't need to pay any because I met my deductible for this year. I got my MO to write a letter for me and insurance approved the pump. Maybe you could try it that way. My PT also told me if you need to buy one out of pocket, you can get a refurbished machine in lower cost

Radiation flares up my Lymphedema, I can't use the pump and finally my RO agreed let me use the pump on the weekend, meanwhile I need to do manual to move my fluid.

Dx 4/1/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 2/8 nodes, ER+/PR+, HER2- Surgery 6/14/2017 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 7/19/2017 AC + T (Taxol) Hormonal Therapy 2/11/2018 Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast
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Dec 15, 2017 02:27AM - edited Dec 15, 2017 02:31AM by hugz4u

Glennie. I posted wrong website.It's goathleticapparel.com. Wearease is fabulous to!

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Dec 15, 2017 11:19AM glennie19 wrote:

Thanks for the compression tee ideas!! Will start researching them in January.


Fibromyalgia and Truncal Lymphedema,,, some of the fun things I live with. Total hysterecomy 9/29/14 Prophy MX Righty 11/30/17 Dx 6/27/2013, Paget's, 1cm, Stage 0, Grade 3, 0/6 nodes, ER+/PR+, HER2- Surgery 8/7/2013 Lymph node removal: Left, Sentinel; Mastectomy: Left Dx DCIS
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Dec 19, 2017 07:46PM PVM wrote:

Ladies wanted to ask for your opinion/advise on what you would recommend for a compression sleeve. I got a Jobst 15-20 & find its not as soft & not sure about the quality but wanted to ask your opinion. I am trying to wear it when i go for long walks or if i am doing something repetitive to get used to it but to be honest i have not worn it too many times. I am trying to be proactive & keep LE away & know that it does not always guarantee that LE will stay away. I am hoping some of you lovely ladies weigh in with some suggestions.

Chemo - FEC D / Tamoxifen / Stage III Dx 3/1/2017, Right, 6cm+, 8/14 nodes, ER+/PR-, HER2- Chemotherapy 4/3/2017 FAC Surgery 10/2/2017 Lymph node removal: Right, Underarm/Axillary Radiation Therapy 11/26/2017 Whole-breast: Breast, Lymph nodes
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Dec 19, 2017 07:50PM marijen wrote:

I got a Jobst 20-30 and it's not so nice. It has pilled up awful on the outside, I wear a lot of sweaters. So I turn it inside out. Next time will get a Juzo. I also found a good sleeve at Amazon for $11.25. But order one size up, the first one was too tight so they refunded me, I didn't have to send it back, and I ordered a new one. Plain beige because I wear long sleeves most of the time.

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Dec 19, 2017 08:07PM GmaFoley wrote:

Marijen, they all pill - I love the juzo sleeves though. That is the only kind I use at this point. I have short arms so it is sometimes hard to find a sleeve that fits.

Imagine God in His HUGE rocking chair, rocking you and saying, "It will be ok, you can do it. I will be right here for you". Oncotype score: 8, Rads 28, Bilateral arm, truncal LE and now Obstructive Sleep Apnea Dx 4/19/2011, IDC, 1cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2-
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Jan 9, 2018 08:46PM HomeMom wrote:

Thanks for all the responses! I can't seem to get the fluid out of the upper arm area, so then the forearm can't drain.I think the compression shirt will move it out of my side and armpit and then I can work on the forearm.


Has anyone know of anyone who had the LVR surgery? They took so many from me that I doubt that will help. I have wrapped my arm and kept it on for two days, wear the night time garment most of the time and a sleeve when I can. I'm in sales and I avoid it sometimes. I think the flexi pump is my last chance!

Dx 3/31/2014, IDC, 2cm, Stage IIB, Grade 1, 3/29 nodes, ER+/PR+, HER2- Surgery 4/14/2014 Lumpectomy: Left Surgery 5/5/2014 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Tissue expander placement Chemotherapy 5/29/2014 AC Chemotherapy 7/24/2014 Taxol (paclitaxel) Radiation Therapy 10/15/2014 Hormonal Therapy 12/14/2014 Arimidex (anastrozole)
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Jan 9, 2018 10:58PM - edited Jan 9, 2018 10:59PM by hugz4u

homemom. I'm waiting for more experiences and outcomes before I try the surgery. Of course they don't even do it in my country yet. Ok I'm a newbie on this but I don't think it matters how many nodes were out because if they do bypass surgery they will use nodes from other areas in your body. What matters is if you have had le a long time and how much damage to your arm there is. They say newer patients have better outcomes.someone correct me if I’m wrong!

You need to wear sleeve and hand garments every day if your swelling. Yup...grrrrr....there ugly, unprofessional looking and everyone notices but there so necessary to wear daily to contain the swell and not get bigger. I wear mine 10-12 hours a day and take off in evening when I'm not physical. If I wear them too much I lose my touch sensation in fingers. ( make sure you touch different mediums to resenticise your hands when garments off) With all I do in self care this amount of time works for me but we are all different.

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Jan 10, 2018 11:51PM - edited Jan 10, 2018 11:54PM by VLH

How difficult is it for you to don your compression sleeves? I have exceptionally large upper arms exacerbated by 100 lb weight loss with the adjacent loose skin. When I struggled to tolerate the over-the-counter sleeves, I ordered a custom sleeve. Unfortunately, it's equally difficult, if not more so, to get up over my upper arm because it's a sturdier fabric with less give. The various adaptive devices / "slippies" all seem to target getting the sleeve over the lower arm and that's not my issue. YouTube videos, including Juzo's, make the upper arm positioning look so effortless while I hit myself in the face again today trying to get the sleeve higher than my lower bicep.

It doesn't help that my grip isn't great due to neuropathy. I know there needs to be compression to be effective, but am I just being a wuss wanting a sleeve to be loose enough that it doesn't take all my willpower to face the darned thing?

I see my LE specialist soon to see if the pump is helping. I'm thinking I'll take the sleeve along and show her how challenging it is to get on and solicit her input. I'm just wondering if anyone here has had similar issues.

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
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Jan 11, 2018 05:21AM MRock wrote:

VLH, I had the same problem, then I bought this Ezy-As Armsleeve applicator:

https://www.brightlifedirect.com/ezy-as-stocking-and-armsleeve-applicator.asp

I bought it from Brightlife, but you may be able to find it elsewhere, or locally, for less.

I bought the RED one, that you slide on with your other hand, not the yellow one you clamp on a table.

Here's a video of how to use it:

https://www.youtube.com/watch?v=yvZ-2dAyy_o

but I actually push the applicator a bit further up my upper arm than this woman has, then finish off with a green donning glove to help me on the last bit - so much easier than by hand.

I hope that helps! But I'm sure many others will have good suggestions, too. Gentle hugs to you


Dx 7/2015, ILC, Left, 4cm, Stage IIIC, 32/33 nodes, ER+/PR+, HER2- Radiation Therapy External: Lymph nodes, Chest wall Chemotherapy Cytoxan (cyclophosphamide), Ellence (epirubicin), Taxol (paclitaxel) Surgery Mastectomy: Left Hormonal Therapy Femara (letrozole)
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Jan 11, 2018 02:16PM hugz4u wrote:

what ever you do don’t look at what your doing as you get to top of sleeve. You will punch yoyrself in nose or worse some here detached their retinas.

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Jan 11, 2018 02:42PM Binney4 wrote:

I'll second MRock's recommendation on the EZ-as donning device (I use the red one too)--it's sturdy, easy to use, and I use it all the way up my arm (except for the elastic band, which I simply turn up by hand. I've used mine for several years and even take it with me to the fitter when trying on new garments (and the fitter now stocks them, too!) I also use it to help my neighbor don her leg stockings. When I first got it I thought it might ruin my garments by stretching them that way, but it absolutely doesn't.

Looks like BrightLife has a good price on it, and their customer service is wonderful. Hope you'll soon be donning your sleeves with a whole lot less frustration!

Hugs,
Binney

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Jan 11, 2018 04:41PM GmaFoley wrote:

I third the idea above ;-)

Imagine God in His HUGE rocking chair, rocking you and saying, "It will be ok, you can do it. I will be right here for you". Oncotype score: 8, Rads 28, Bilateral arm, truncal LE and now Obstructive Sleep Apnea Dx 4/19/2011, IDC, 1cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2-
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Jan 12, 2018 03:04PM Vargadoll wrote:

I use a gardening glove that is kind of grippy. I turn my sleeve down so it' about half way. Slide my arm in to my elbow then use my left hand with a gardening glove. It grips the sleeve and slides it up without stretching it out.

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/7/2017 Lumpectomy: Right Radiation Therapy 4/13/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Jan 12, 2018 04:28PM MinusTwo wrote:

I do the same as VargaDoll, but I turn my down even more than half way & then use a gardening glove.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 16, 2018 07:56PM PauletteK wrote:

Hugz, what kind of garden gloves do you have? I can’t find any heavy duty ones now, most of them are fabric mixed with plastic, I finally found one got some suede. I’m hoping to find a better one so I can work with my roses, trying to get ready for spring time.

Will be finishing my radiation next Monday, I have mixed feeling now. Little lost and little happiness. Did you go though this also?


Dx 4/1/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 2/8 nodes, ER+/PR+, HER2- Surgery 6/14/2017 Lumpectomy: Left; Lymph node removal: Left, Underarm/Axillary Chemotherapy 7/19/2017 AC + T (Taxol) Hormonal Therapy 2/11/2018 Arimidex (anastrozole) Radiation Therapy Whole-breast: Breast
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Jan 16, 2018 08:57PM MinusTwo wrote:

Paulette - a friend gave me a pair that come up to the elbow. They are a composite material but feel like suede. I think she got them at Vermont Country Store, but maybe Home Depot. Best thing I received. I googled 'long sleeve garden gloves' and came up with all kinds of selections & prices.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 16, 2018 09:18PM Vargadoll wrote:

PauletteK- I felt very lost! It was almost a now what??? After months of appointments and checkups and Dr running here running there radiation everyday for 5 weeks I had to find my new normal again! Now it's therapy two days a week for the lymphedema. This stuff has been worse than radiation. It's nice to know there's a place you can go where people understand. Hugs!

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/7/2017 Lumpectomy: Right Radiation Therapy 4/13/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Jan 17, 2018 12:45AM - edited Jan 17, 2018 12:46AM by hugz4u

Paulette. I feel varadoll took the words right out of my mouth.

I have leather gloves that reach elbows. I think they are Laura Ashley brand I picked up at discount store years ago. I rarely use those as I removed almost all prickly plants from yard and we really don't grow good roses here. To damp.

I use mens Costco blue disposable (nitro i think they call them ) gloves. There for working on autos etc and other activities and are stronger than medical disposable. Some times I use those to for weeding.

I can't use regular garden gloves with material and rubber on outside. Too thick they are! Just watch what your weeding thru, they don't protect much. I don't have to much sharp stuff in yard left though.

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