Sep 10, 2019 03:10AM - edited Sep 10, 2019 03:12AM by edj3
Oh that's pretty!
Here's the one I wore today:
Posted on: Oct 15, 2010 01:56PM
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.
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.......
Posts 10081 - 10110 (10,171 total)
Sep 10, 2019 03:10AM - edited Sep 10, 2019 03:12AM by edj3
Oh that's pretty!
Here's the one I wore today:
Sep 10, 2019 08:14AM - edited Sep 10, 2019 09:44AM by Vargadoll
Edj3- that's beautiful!! Is it a Lymphedivas? I check the website everyday for the discount seconds. Ya never know what you will find! The sleeves aren't compromised in structure it's just a dye lot issue or possibly a slip in the pattern. So far all of mine have been unnoticeable! And they are $32.50- $44.00 a nice saving!
Sep 10, 2019 09:10AM edj3 wrote:
No, it's Juzo. I liked the Lympediva ones a lot but they don't come in the size I need (super small, long length). I was bummed :(
Sep 10, 2019 09:46AM Vargadoll wrote:
Juzo is the one in should be wearing with all the lifting I do. I only wear the lymphedivas when I'm not pushing my girl or lifting her. 😜
Sep 10, 2019 12:03PM mammalou wrote:
I like your sleeve! I am going to have to get more brave. I’ve contemplated wearing a sleeve on each arm so it just looks like a long sleeve shirt. Lol!
Sep 14, 2019 10:15AM mammalou wrote:
I just received my sleeve in the mail. How tight should this be? Is it ok to see indentions where the band is
Sep 14, 2019 11:30PM HersheyKiss wrote:
Lou, the sleeve should be a snug fit.
My Juzo sleeve has a wristband construction. It sometimes leaves a slight depression in the skin there. My LympheDIVA sleeve has no wristband, so there is not a depression.
Sep 15, 2019 04:04AM MinusTwo wrote:
But ... it's a good questions. I don't think a sleeve should leave an indentation ?????
My Juzos have a band at the top & none at the wrist. Occasionally I'll have a depression on my thumb from the gauntlets if I use my hand too much.
Oct 11, 2019 01:17PM mammalou wrote:
I wore my nighttime garment for the first time last night. It was difficult to get on! I woke up with what looked like protruding veins running up and down my arm. Is that how it should look
Oct 14, 2019 01:22AM HersheyKiss wrote:
Lou, I've not experienced something like you describe. My nighttime garment is snug, but not nearly as snug as a daytime sleeve.
Perhaps snap a picture or two and send to your LE specialist for his/her advice.
Oct 14, 2019 12:51PM cwins1218 wrote:
I'm so emotional..I never knew about lymphedema. I had a crap BS. My plastics team has been great but they didn't take the nodes, my BS did. She seemed to be upset that I decided to have a bmx with a DCIS stage 0 diagnosis. But I decided it after 6 months of taking tamoxifen, doing a ton of tests and wanting the most absolute assurance I could get to be cancer free. She really focused on telling me how bad a bmx would be over a lumpectomy. All the while I could have had lymphedema either way and she never once explained this possibility to me. and now I believe I do have it! I thank you all..reading these posts have helped me. She took close to 10 on one side and 3 on the other. I chose to have the DIEP surgery and now after my second phase, I'm noticing my arms swelling, my stomach swelling. ripples and tightness. I go to PT tomorrow to talk about a LE treatment. But it was my plastics team that referred me not my BS!😡😡😡
If anyone has any suggestions, I'm taking them all. I have a vacation to fly on Novembet 13th. Should I start researching compression garments again?
Thank you in advance,
Oct 14, 2019 02:39PM MinusTwo wrote:
cwins: You're not the lone ranger. Most docs get only 15 minutes of education in med school about LE. I can't think of one person I've "met" on these threads who was informed or warned ahead of time.
My BS, my PS & my MO all said pooh pooh - seldom happens, very rare couldn't be, not to worry. The one who understood and get me to a competent, trained LE therapist was my radiation oncologist.
I never fly without sleeves and gauntlets and a Belisse Compression Bra. At home I wear a WearEase Sydney Bra 24/7. It's my goal that the LE doesn't spread any further. So far it's working.
If you haven't seen the thread below, it's great information & has good tips.
Good luck at PT.
Oct 14, 2019 03:07PM cwins1218 wrote:
Thank you MinusTwo, this is crazy to think that this isnt something told to a patient the minute they start talking about removing the lymph nodes. Which they immediately told me I had to do regardless of my elected surgery. Some, a few or all can result in this. But moving on....
Thank you for the link and I'm reading it now! I will be getting those items. which I'm sure the PT LE specialist will suggest. Then my doctor may figure out it is why I am so uncomfortable.
Oct 15, 2019 12:10AM JO-5 wrote:
Can you tell me what you know about the sizing for the Wearease Sydney? I don't like the plunge because I have a deep divot in that area with a thin skingraft . (UGLY!) but would trade off on that for a bra that had back and high underarm compression.
I go to a state of the art bra fitter and nothing covers this loaf under my right arm and no compression on the back.
I am unable to wear the regular compression bras. I have 2 and cannot stand them.)
Would the wearease accommodate my prosthesis on the right? Is this bra a slip on? I have a hard time with slip ons.
Thanks for any info you can guve. I have bags full of bras that I can't wear and tired of buying more.
Oct 15, 2019 02:50AM MinusTwo wrote:
JO-5 - Well to start, yes the Sydney bra is a 'pull on', but you can step into it and pull up. I did that when I wasn't supposed to move my arms up over my shoulders. This site has a video about donning garments. https://www.wearease.com/
There is a 'pocket' for a prosthesis, but since I have implants I've never tried them. My PT therapist was particularly pleased with the high back & under arms.
The company representatives are great about answering questions and their return policy is very generous. Give them a call 866-251-0076 and discuss your particular needs. They might suggest other styles that might work for you. Disclaimer - I have no connections with the company.
That said, I wear a Belisse Bra when I fly because that's what I started out with in the beginning. It's heavy & confining with zippers & hooks & velcro, and I can hardly wait to pull it off when the hour post touch down is over. I'm sure there are others out there that work as well (maybe even a WearEase model), but I tend to be a creature of habit.
Oct 15, 2019 06:07AM JO-5 wrote:
Thank you. I will have to look at it some more.
My big problem is what we ladies on the Lat flap thread call the "loaf" under the arm where they tunneled the back muscle. Mine never went all the way down and is painful. Once in a while the LE bothers that as well.
I did not have reconstruction....just the muscle lump from my back. It is a very difficult situation to work with. No one understands it unless they see it.
Oct 15, 2019 10:38AM MinusTwo wrote:
Jo - I can imagine your frustration. Hope you find something that helps.
Oct 29, 2019 03:56PM mammalou wrote:
This night time padded garment is ucomfortable! I'm feeling very overwhelmed that I have to wear all this stuff for the rest of my life.
Oct 29, 2019 10:42PM InnaB2018 wrote:
mammalou, I totally empathize with you! I hate it so much, that go next week for lymphedema surgery consultation. Even if there’s 50/50 chance to get rid of this nightmare, I’ll take it.
Oct 30, 2019 01:10PM mammalou wrote:
innaB2018 I’ve wondered how bad do you have to be before they will consider that. It would be worth it.
Nov 8, 2019 01:35PM Vargadoll wrote:
would live to hear the outcome of the appointments! I'm in compression 24/7. I've gotten used to the night garment the cover that goes with it does not stay closed good witch gets a little annoying. And until I figured out where something over top of it it was wearing holes in my sheets!
Nov 16, 2019 07:03PM VLH wrote:
Vargadoll, I found your note when I did a search on the lymphedema pump and Velcro. My chest garment is fine, but I've had to resort to flinging myself into bed with my arm down and my legs as straight as possible to keep my leg garment in place. Lymphedema is no laughing matter, but my sometimes dark sense of humor has me envisioning a huge, brown penguin flopping about.
Do you recall how long you'd had your pump when Tactile agreed to replace your garment? I recall the pump proper having a 5 year warranty, but no mention was made about Velcro failure issues. Thanks!
Nov 18, 2019 12:26AM Vargadoll wrote:
Lynn, I had it about a year and half. My LE therapist told me to call that they would replace it and it my surprise they did! They just wanted me to mail my old pieces back to them. They provided the postage to!
Nov 20, 2019 02:41PM VLH wrote:
That's great, Vargadoll! Thanks for the information.
Nov 21, 2019 02:42AM - edited Nov 21, 2019 02:42AM by mammalou
I have left arm and trunk lymphedema. I just got cellulitis in my face. Ugggggg. Do you think there's a relationship between lymphedema and cellulitis somewhere else in your body?
Nov 22, 2019 12:55PM - edited Nov 22, 2019 12:56PM by Vargadoll
Oh no! My PT would tell me that the back of my neck would be swollen sometimes from lymphedema. I was told it was pretty much anything in the upper right quadrant including my head and neck. So it wouldn't surprise me if it was connected! Take care of yourself I know those's antibiotics suck I've had to take them before.
Nov 22, 2019 01:20PM JO-5 wrote:
Somewhere ...waaay back in this thread someone, (I think it was Binnie) posted a site for head and neck massage.
I printed it out and do it when I feel my neck is swelling. I've had a bad sinus headache for a week and decided to do the head and neck massage and it actually helped.
When I do the head and neck I go ahead and do the upper trunk and arm. It takes a while but worth it.
Some say no massage if you have cellulitis but it might be a good idea to try it after the cellulitis is over.
I will look for that site....but perhaps Binnie (if it was you) will post it again. It is the best one I've found for the head and neck.
Nov 22, 2019 04:46PM mammalou wrote:
I definitely have swelling in my neck, but I haven’t learned how to deal with that. I am getting an education every time something happens to me. I will be ever so vigilant after experiencing this. It was very scary how fast it cameand how sick I felt.
Nov 22, 2019 11:52PM JO-5 wrote:
These are the face neck and head massage that I do. Maybe you can enlarge and print. It is from Aurora Health....and you can find it if you Google (Self Massage for Face and Head). It is a PDF.
Nov 23, 2019 12:51AM Vargadoll wrote:
Thanks Jo!!! I havent been on here to much. Life has been so busy! Hope everyone is thriving!