GRRRRRRRRR I HATE LE..........
Comments
-
Fitz: thanks for the info. I think the problem I've had is that no one in the Wound Care & LE center at this hospital is a PT or OT. So far Medicare seems to be paying for my "self care education". I appreciate the time you took to post the Medicare regs.
0 -
Tina..........I had a great LE specialist......she actually refused to do my sleeve measurements because she felt the people making it would be better, and also they would be responsible if there was a problem with the sleeve, especially in the fit..............her feeling was they could accuse her of "wrong measurements", meaning they made it from what she sent them.................so I went "in person" arm with me, and it was done 2 times, and each time it came back wrong..........so they decided to try ready made....................did it work......yea, but I don't feel like it is doing any good, actually I believe it got worse with the ready made sleeve, so I got "fed up" and said "screw it all, and wear nothing.................is my arm getting more swollen.........yes, but do I care, of course I do, but I can't handle the "bullshit" from all the "freaks" who keep making mistakes.................not to mention everytime I go to the LE specialist its another $40.00 deductible......................at one point I was going 3 days a week...........between that and the co-pay for 38 Rad treatments being done at the same time, I was spending $320.00 a week in co-pays................and getting "assholes" making my custom garments...................I finally got disgusted, and gave up...............I know what the danger is of doing nothing, but I'm just to fed up to care................so many get what they need with no problem................no me, but then why does that not shock me............
0 -
Oh, my heart hurts! So not right. (((((Ducky))))
0 -
Ducky have you measured your arm or have a friend measure it and compare it to the over the counter sleeve you got and the actually size chart from the company that makes them. I ask because my first fitter put me in a JUZO size three. The only measurment that fit into that size range was my small wrist. The top portion of my arm measured in a size 6. I wore that six for a while and at least kept my arm from swelling any more. I finally found a good fitter and love my customs...now my new insurance isn't on their list. grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr good luck.
0 -
Ducky--Keep at it. My therapist measures me and orders but we have sent several back. Like Tina she has been more picky than I was and we sent a gauntlet back twice that had a hole in the seam. She does all of the arguing with the fitting company for me. Once I get the right fit it is like a dream. She has also taken pictures of my arm and sent a pic to the company. That may have helped. We all understand what you are going through.
0 -
Hi Tina, I tried to try one of those on yesterday - the only type my kmart and walmart had - they were way too tight - I've been a 2x - and I couldn't even get on a 3x without (crying) I got fed up and went home. I do have a champion sports bra that isn't tight in the ribs, that i put my jovpak pad on - but even though its not tight on the rib cage it feels tight?? but I can deal until I can get to a bigger store - so far anything I have bought online doesn't fit either so I won't buy things online..
Edit: Deleted part that was supposed to be on another forum
0 -
Becky...............want to hear the "kicker"....................I was there in person, with my LE arm when I got measured.................imagine, I was sitting there while the fitter measured me...........it was wrong.......the elbow was not where it should be, it was too short, and not high enough at the top..........................she tried again.................next time the elbow was fine............the bottom was suppose to be at my wrist.......I could have pulled it over my whole hand.....................so imagine............I was there when she measured me.
I have a horrible arm................I call my upper arm.........."bat wings", so you can see the problem...............smaller down the bottom..........average in the middle........huge up top..................honestly if I jumped off a cliff, I could probably fly to the West Coast, just by flapping my frigging arms.........................Imagine them trying to get it right..................without me being there...............lol.
0 -
Have you tried a Catherines or a Lane Bryant store? Yes I am fat rather obesed...my next step is loosing some more weight after next weeks vacation. I wear a 3x in clothing and found a Cami at Catherines that was snug enough up top but I had it altered at the bottom because it was just too long. Before finding the right bra I found one at Lane Bryant that I liked...I wore a foam foob at the time and just used saftey pins to hold it in place. lol Never got around to sweing a pocket in them. I really like my bra now and it's a Mascetomy bra from ABC. The wide strap goes over the area that most bras cut in and make me swell. They are a little scratchy feeling at first but then soften up after a few washings.
This is the cami I am talking about.
http://catherines.lanebryant.com/plus-size-intimates-plus-size-lingerie/buy-1-get-1-free-shapewear/serenada-reg-shaping-camisole/4574c4584p61836/index.proThis is the bra.
0 -
My Jovi Pak Shoulder Torsi finally came today. Believe it or not, I am excited. I will try it tonight but sorry I am not packing it to take on vacation. It will take up to much room and I have four people's luggage, towel, and sheets to get in my little car.
They finally have a picture of what I got on their web site. It was first made for a special case. My fitter was very happy with the results. It's the first time she has ordered one. So excited she took pictures to show other LE PT's for future use.
I only hate the idea of hot flash coming on in my new heater....guess my child better add a third blanket to her bed. hehehehe
Here's a picture...at least I hope.
Well I can't figure it out. Her is a direct link if you want to look.
http://img.photobucket.com/albums/v358/MomToOlivia/d9297d3c.jpg
0 -
Well I went to my internist today for her to take a look at my arm and breast.THANK YOU GOD SHE SAW THE DIFFERENCE!!!!!before she sends me off to Pt she wants a US doppler of the arm and US of the breast.And yes she called it a flair up of the edema.Does that sound right?my BS just looked at my breast the last time and sent me for PT after i insisted..all she said was watch my salt.
0 -
Granny why don't you go to an LE specialist, just to make sure that is not what it is..........in the beginning mine was called for about 10 minutes.............edema............I screamed like a banchee, and they said "ok" we will recommend an LE specialist to be sure.........................I was right............I read too much, and that was how I found out all about it..............did that the day I knew I was gonna need a lumpectomy...........and what the outcome of node removal could be...................I found it..........they didn't...........
By the way Kitty...........I can't wear their clothes.......I wear a large or medium petite misses shirt, depending on the quality, and a 14 petite pants, so those stores don't help me...............I'm not saying I'm small, cause trust me..............I'm far from it...........I'm about 50lbs overweight, just not as big as I could be...............but I'm sure those days are not far off...................lol.......I'm only 5ft. tall, although my kids tell me I'm 4ft. 11in.........
0 -
Ducky-you need a referal to go to PT.She will not give me it until she sees the US.If you remember I do have edema before and it feels the same way.The PT was positive it was edema and so I think my internist is extra cautious.I trust her with my life.More then any other dr.including my BS who is one of the best in NJ.I feel in my gut its the edema cause all the symptoms are the same......
Deep in my heart im prayin its the edema.My gut is telling me the same.Either way im goin for the PT and the PTs that are here are all LANA PT who do treat LE and Edema.
Iam doin the stretches constantly and the swelling is goin down.Just wish there was some kinda blood test that could tell the difference.
0 -
Hi KittyDog. How do you get in and out of that cami? I love it, and I have something similar, but no way would I try to put that on. Someone would have to cut me out of it. LOL. Maybe it is just too soon after surgery for me to think of that, and I still have the TE.
0 -
Does all this get worse before it gets better... I feel like I just gained 2 sizes since Tues - Cant find anything comfortable on top and everything feels different....I went bra/cami shopping ... did not go well...I'm sorry I really need a friend right now.
0 -
Hi ladies! I am beyond happy..that you can get support on this thread....xoxo
0 -
Gma, you got a whole bunch of friends right here!
I'm really sorry about the downer of a day you've had, and I hope you have something restoring you can do this evening--a good book, some chocolate, a hobby. Yeah, well, cami shopping can be a downer, for sure. I always come home sobered, and now I know not to go alone anymore--I take my daughter along for moral support. Plus, she always has kleenex in her purse for those times I get frustrated over the top. Trying on things that don't work makes me irrationally angry, and if I let myself, I can get off into major sadness spotting things on store racks that I can't wear anymore, or that will look like garbage with my stupid LE garments. When it gets bad I quit for the day and try it another time. It matters what my state is before I shop, and if I'm already down I don't go.
That said, I've also had some successful forays into this wilderness, and that's a real lift. So yeah, it gets better, only there's still stuff to slog through that is, uh, less than satisfying. LE is a loss, and we have some legitimate grieving to do. Also some ranting.
GRRRRRRRRRRRRRRRRRRRR!!
And hugs,
Binney0 -
GRRRRRRRRRRRRRRRRR back to ya!!! LOL.... Crying......LOL....Cryiing -
I had a great afternoon - after a full day at the fabric store my DH took me to see Madagascar and took me out to dinner. The issue is we live 30 minutes out of town, in separate cars and thought I would just check some things at the store on the way by....After a full day that was just not smart... I'm still new at the Breast LE thing, so I know I should give myself a break... Just wear what I have until my next appt(#2) on monday and go from there... It still makes me mad that this small town can't carry the right stuff unless you go to the medical supply and then they charge you an ungodly amount of money... GRRRRRRRRRRRRRR!
Thought that would make me feel better..... not..
0 -
Gma--Oh the frustration for the right cami hunt. I did find they had to be sizes bigger than your usual size. I finally started buying what I thought was the right size, took home to try on when not hot and frustrated, and returned if not the right one. That way I could bring several sizes and types home. I too am not close to the stores but it is worth the return trip to me. No tears at home. Plus trying on several at once can be painful from scars, LE, etc. Keep at it. We are here. Becky
0 -
Better this morning but am noticing more swelling in my axillary gland - got to get it moved to the other side some how so it can drain..
0 -
Oh GmaF---the big bra problem...I keep buying bras all the time.must have at least 50 maybe more...everything hurts and nothing works.just for a while.
When I had my first flairup of the edema I wore that ugly compression bra 24/7.eventually i got that workin.Then I graduated to the champion sports bra.Eventually that worked too.When I went to the BS i asked her about the bras and she said just wear what comfortable....At that point i told her nothing is comfortable...It does goet better,it will get better.nothing stays the same.If i go clothes shopping the first place i go is to the bras.
Im willing to bet $$$$ that im having an edema #3 flairup.feeling much better and the swelling is going down down down.And im doin all the right things
This crap really suks!!!!!!!bc suks!!!!!!!!
0 -
GmaFoley - I am going to sound like a commercial, but I have been doing research on compression garments lately, and your frustration sent me on a little hunt. There are some brands that run larger, and they carry plus sizes as well. Unfortunately, they can be more expensive. However, one comfortable garment could make a world of difference. Sometimes you get what you pay for, and a more expensive garment might have softer fabric, be seamless, tagless, or have a nice finish to the edges and kinder to the axilla area. Seamless and tagless means you don't have to turn inside out so the seams don't rub or irritate.
I have truncal LE on the side of my chest below the underarm and behind the underarm in back. I hardly ever find garments that fit, which is why I am obsessed! This is the kind of style tank I look for - shoulder straps that are wider and set wide in the back, full back coverage, and sides that are higher in the underarm area. If a garment looks like it has these things, only then will I try on. And, yes, start with a much larger size than you think. I can't recall at the moment if you had lumpectomy or are bilateral or unilateral mastectomy. If you have breasts or a breast, some tanks have a shirred area or even extra cup-like space woven into front, and that may be more comfortable than being smooshed. Oh, and the main thing - if the shoulder straps are set wide apart, you can step into the garment and pull it up, inserting your arms once it's up over your chest area. Do not bother trying this kind of thing over your head, as it will only cause you misery. It is a total crapshoot, and even when my truncal LE is at its best, trying on these kinds of garments can trigger swelling with all the rubbing.
There are several websites that carry a variety of brands of compression tops. I have used BareNecessities and HerRoom and had good experience. They often give free shipping to first-time users and will let you return unworn items with tags within a certain period. I ordered several items, discovered what worked, and returned the others.
The first brand that runs larger that comes to mind is Spanx.
Here is a link to a Spanx tank (Simplicity Scoop Neck Cami) that looks like it has a nice shape and comes in larger sizes. It isn't as high in the back as some, but if your back is not a problem, it might work. The straps appear widely set in back, which helps avoid pressing on axilla.:
http://www.spanx.com/product/index.jsp?productId=3987958
This one (On Top and In Control Classic Scoop Tank) has higher back and can even be worn as top. I have one on order for myself to try. I was told it is seamless. I explained my situation and was trying to decide on size (I wear a medium in a tank from their Assets line), and according to my dress size I could be either a small or medium. I ordered both sizes to test. They were really nice and helpful about sizing and fit and waived all shipping charges. I recommend calling, and if you explain your needs I bet they would waive shipping for you, too. Return shipping would be on you, but complete refund for garments returned unworn with original packaging (think within 30 days).:
http://www.spanx.com/product/index.jsp?productId=10760223&cp=2992553.3015048&view=all&parentPage=family
This one has cups for breasts and may work for prosthetics (Slim Cognito Seamless Tank). I go without them so others may chime in here. Looks like it has a full back. Both of these garments show a sizing chart with measurements, which may be helpful.
http://www.spanx.com/product/index.jsp?productId=3159443&cp=2992553.3015048&view=all&parentPage=family
Spanx is also sold on QVC, and they carry extended sizes (Hide & Sleek Criss Cross Cami).
http://www.qvc.com/qic/qvcapp.aspx/view.2/app.detail/params.CM_SCID.coll.item.A82306.desc.Spanx-Hide-Sleek-Criss-Cross-Camisole
Another brand is Sassybax, and here is a link to one of their tanks. Lower back, but all else looks good.
http://www.sassybax.com/Torso-Trim_p_56.html
I'll be back if I think of more. As Becky pointed out, it's nice trying in your home and can do at your own pace to minimize swelling from the testing process.0 -
Thank you Tina - I need all the obsessing you can do!!! LOL
Just finished first round of trying to get financial assistance for the LE Therapy.. as my DH puts it, "The gesouta is bigger than the gesinta" Translation: our bills are bigger than we make... Wish me luck otherwise its about $3000/month if I only go in sparingly...
0 -
Okay I am just feeling sorry for myself tonight... My LE in trunk is killing me as well as my entire arm. I cannot afford therapy because my insurance does not cover it. I take care of my 3 yr old granddaugher every day and my 85 yr old mom who lives with me. I worked 7 hours today at second job to find that my cell phone just went on the fritz. I called verizon and the baby decided to take a hissy fit which ignited my mom.. So now here is a house with everyone screaming and I am trying to follow directions from tech support...
Hey. guess this really sounds funny... but really it was a disaster. Okay... I guess it is a minute issue in the scheme of life. feel better already just venting
0 -
Dunesleeper it zipps up the front. First you put your arm in as far as you can. Then you have a gripper sticky pad on a table and push it up the rest of the arm. It's heavy enough that the other side fall where I have no problem reaching it. Suck in and zip....the over jacket was not as easy to get on. I went to bed with it last night around 2. After tossing and turning I decided I need to put it on skin to skin...lol I had it over my nightgown and it keep creaping up...So off it came. Then after more tossing I decided to put my foam foob in. Much more comfortable so I think I will need a pad. By 8am I couldn't stand it any longer. I have a sore spot in my back where it cut it sometime during my sleep. I know from having a tribute that it will give and feel better soon. I did have nice lines this morning and my underarn did feel better.
So far my own thoughts for the company is if you are a uni and over a size D bra to make it about 2 inches longer in the front. I think it is going to work well for my problems.
0 -
NJBH:Venting is perfectly acceptable here. Go for it and I hope you do feel better. Sounds like you were served a dish of rotten vegetables today.
Good thing we totally understand here. Drink lots of water for the LE and a few fist pumps. Elevate once all folks and kids are in bed tonight so you can give yourself a few deserved minutes.I am going to invest in a paint roller for my truncal. The girls here say it works and is cheap enough. My insurance is the royal pits so we are in on this together.
You sound like you are a amazing woman, juggling all that stuff
. Hope tomorrow is better. 0 -
Tina: Thanks for all the bra/tank links. After BMX & before reconstruction, one of the things that made me willing to keep moving forward was reading the bra thread every day. I was hoping to be smaller & had never heard of LE. Well... I'm not smaller. I have a lipoma on top of the ribs where every normal bra hits. And I have breast & truncal LE. Now the bra thread makes me cry since it looks like I'll never wear pretty, lacy things again.
I too buy bras & tanks by the bunch, bring them home to try, and end up returning most of them. Today I'm wearing an Ahh Bra - $20. at WalMart. Not much compression but the Belisse is drying and I'm getting itchy skin from the Danskin racer back bras. I'm taking back an Under Armor bralette that has good support & OK compression but does smooch me (love your great word). My next try is the Coobie Bra. And so it goes...Thanks for letting me vent.
0 -
MinusTwo, I hear you and totally get the bra sadness. I developed LE after reconstruction and then one implant started going bad. I was instructed by my therapist to not wear bras. So, I ended up wearing compression tanks that smooshed my implants and hurt like the dickens. Not being able to wear bras after reconstructing was so depressing. Yes, all those pretty lacy bras were off limits. I stopped going to the recon and photo forums for a while because it made me too upset. Now with the implants gone, at least that's one less factor to worry about when it comes to size and fit of a tank. I noticed that Spanx has a "haute couture" line with several styles that look quite pretty. Lovely lace details and nice lines, but very expensive for a compression tank. I guess if it were part of an outfit for a special event and a bucket of gold fell in my lap I might consider. Still, it's nice to know pretty things like this exist for us. I'm sorry you are having to go through this after recon. It really is difficult. Did you have implants or autologous tissue transfer?
njbhwgirl - LE on a good day is lousy, but LE on a bad day really sucks! I'm sorry things were overwhelming and hope it's better tomorrow.0 -
i hear you all about sizing.. thanks, kitty dog, for the links.. i started out a "big" girl, and with the hypo; im just plain fat, or obese, now..
i can't seem to win.. when i HAD the girls, they were HUGE!(had a reduction) and ended with a 39 E AFTER!!! now, i have none, but gotta get big amis for the swelling.. some days it just doesn't PAY to get outta bed!!!
can those camis be found at lane bryant? we don't have a cathrines, here, that i know of.. gona go online, and see if "avenue " another "big girls store here, has anything like it..
i wear some shapers i've found at Dollar General. for 10.00 here, but they're underwire.. for now, ok.. but won't do them full time..hang in there, Gma, and have the pt, (whos le) measure you!!!nice she does it all, and is lana cert to boot!!! 3jays
0 -
WOW ladies.................isn't LE a bitch.........I'm up for about3 hours and have not put the sleeve on yet............Lord I am so fed up....................I'm going to start all over. Going back to my LE specialist next Thursday, and hoping for a better result then before..........she is spectacular.............the fitters at the place I had to go to "suck".................one more try ........my arm looks so ugly (but then again it wasn't too pretty before I got LE either)..........now its just worse.........flabby, full, wrinkled, and actually looks better in the sleeve as opposed to out.................just want this to be "all over"..........and it never will be.....................Not to mention the $40.00 co=pay everytime I go..............and honestly, by the time they measure, and talk, its very little left for therapy..................oh well.......................shit happens.
0 -
oh wow Paint roller works??? how ? Is there are certain way to stroke the side of the trunk so as not to aggravate it further. Sounds like a great idea...Just don't want to make me hurt any worse..lol
Update: my phone is shot and my sister is going to give me her old one so I have something, Once again I watch baby because my Daughter is working. Kinda sad day for our family today as I lost my husband 3 yrs ago so I think to not dwell I am taking baby to small amusement park and put her on sime rides. She is almost 3 yrs old but loves the rides like a older kid... My son has his army reserve weekend so I won't see him till later on tonight. Well one good thing, NO cooking dinner tonight YEAH
0
