GRRRRRRRRR I HATE LE..........

duckyb1

Kitty...............I feel your pain............I have been at this bullshit with an arm custom sleeve since last year, and the assholes still could not get it right.............so each time your without, unless you wrap, and wrap every friggin day, the arm blows up again, and they say.................."oh we need to get that arm down in size before we can re-measure you for another sleeve".........................I have had 2 made, and both were wrong, so back to the drawing table they go................

Don't tell me how bad BC is..............unless you have walked the lymphedema road...................the whole friggin thing sucks, and I am mad as hell......................

BeckySharp

Hugz--Too, too funny.  Of course they wear "nude" sleeves!

I am sorry for all the delays people get.  Don't they understand?

sandcastle

Girls......This is a journey....along the road DO NOT let anyone Disrespect YOU........you are more in control of your show then others.....HOW very strange it can be when someone asks me What happened to my hand??!!!  When trying to tell or educate them about LE.....they then are embarassed they asked.....TOO BAD......I think the only education I gave them was the MIND THEIR OWN BUSINESS!!     Liz

cookiegal

Hugz4u....that actually made me smile.

duckyb1

Sandcastle........................Ditto

Leah_S

Definitely an un-grrrr LE experience yesterday. I had pre-op (second time for this surgery - don't ask!) for Wednesday's surgery - I'm having prophy mx on remaining side and TE placement. The nurse doing the intake asked why I was wearing the sleeve/gauntlet and I said "Lymphedema". "Oh, from the last surgery?" Yes. I then said that after this one, I knew I couldn't have BP done on either arm and she said, "Don't worry, we'll do it on your leg, it's not a problem". Then she told me where to go to have my port accessed when I'm admitted so we won't have to worry about IVs.

Whew. They get it.

Leah

ohio4me

Yesterday was so humid I think my arm started swelling at the thought of going outside. Was running late for church so didn't get my sleeve and glove on and, yes, I had swelling by the time I got home. Afternoon was spent on MLD then Flexi then MLD. Arm was happy by days end guess I should be too.

My sister and I are taking my parents on a drive through the countryside today. Hoping it's not humid again, but I think it will be. I will wear my sleeve and glove today today and exercise my arm (I'm not driving). It will be a good day.

carol57

Leah, I'm headed out of town for a few days and don't expect to be online much, so I'll pause now and wish you well on your Wednesday prophy mx.  It's a very good sign that they 'get it' on the LE risks, so it sounds like you're in good hands.  Report back in when you can, after your surgery.  And may your lymph keep on movin' during and after the surgery!

Carol

Leah_S

Thanks Carol!

Leah

GottaloveNED

This is not a grrrr.... Just a snapshot of life in a small town. I'm walking on the neighborhood trail (without sleeve/ glove because it is hot & humid but using walking sticks) and who do I see but my therapist... Whoops!!! I know better than to exercise w/o the sleeve and I got caught!!!

Binney4

Leah, I'm so relieved for you that they're on top of this. I'm sure looking forward with you to having this all behind you. Quick healing!

Hugs, prayers,
Binney

Binney4

Gottalove, you made me smile! Doggone! Nabbed by the Garment Patrol!
Binney

cookiegal

Gotta love ned! HA!

On Wisconsin! ( what part of the state are you in?) 

BeckySharp

Leah--All the best to you on Wednesday. 

Gottalove--Busted!  I dreamed once I was not wrapped and ran into my therapist.  Weird dream as I always stayed wrapped.  I will be at NLN with her for six days this week so would not even consider not having on my sleeve/gauntlet!

GmaFoley

I'm getting concerned about my good arm... The upper arm has been swollen again and being its not the lymphedema side.. we have been watching and trying to see if MLD works...Before surgery we seemed to get the swelling down once we split my body in half and just worked each side separately but now (post surgery) It has always been a bit bigger (4cm) and now it is aching..  I just had my new eval last week and I asked my LE T whether I should talk to the doc about it and he said - lets see if the MLD works again.. I know it has been only one time he worked on me last week and I have been doing the self MLD every day, it still is not looking good this morning..I did ask him if we could use a sleeve on it and he said being its the good arm we would have to figure out what is causing it before we use a sleeve...... What would my favorite crew do about this if it was happening to you?

GmaFoley

Teka

Binney4

Gma, I'd see my doctor. There are lots of possible causes of swelling besides LE, and some of them (like a blood clot) need quick action (and no mld or compression). Check it out, and keep us posted!

Gentle hugs,
Binney

GmaFoley

Binney this swelling has been off and on since my shoulder surgery 7 years ago.. just kinda swelled up more than in the past..

sandcastle

Jo-5.....GREAT information.....I do believe this.....I only use the gauntlet as of the past two months....before Deep breathing.....and that worked great....It just happened we bought a 4lb Shihtzu and was just loving the little guy....now he is 13lbs and this is what made me swell............I also think...being on these boards too much and dwelling on the problem can drag a person down......Liz

dassi52

The name of this forum says it all. I was only diagnosed about a month ago, but I hate it with a passion! And I am still "lucky" that it is my right hand "only" and not the arm as well. The LE therapist told me that it is still feasible it will improve enough to get rid of the glove, but in the meantime it s bandaging and a glove. I also hate the questions. Mine started after tendinitis, so I tell everyone it was caused by the tendinitis wrap (It was) and don't tell them about CA.None of their business. 

While chemo was no party, at least it was temporary (popping pills sa Arimidex doesn't bother me) but this may be FOREVER!!!! I think that is the hardest to digest.I also hate the amount of time that I have to spend on taking care of the hand. I sure pray my LE therapist is right and this is just a temporary situation. And I am very thankful for the 22 years that everything was fine!

Does anyone know what kind of lotion one can use for under the glove w/o harming the fabric?

Under the wrap I have tried LacHydrin and Neutrogena. In the end, my skin may be smooth but it gets irritated and itchy anyway. Any suggestions?

To all my fellow swell sisters, stay strong!

hslew

mags20487

gma...hahahaha...can't call us quitters

maggie

GmaFoley

Well Ladies, here I go again..I know this doesn't have anything to do with this topic, but I needed to talk to someone, and this is my favorite lady group. Talked about the SEs (anxiety attacks, 12 hot flashes/day, constant headache, going on 4 days) I've been having with the ONC's nurse  - she relayed the message and ONC left a message back that said, "obviously this isn't the route to take with you. Give it 6 weeks and we will discuss options in the office." end quote... What options is he talking about?

Teka

I doubt if even the MO knows what options.   Maybe, need to discuss BC treatments and side effects with GYN!   I just read your post on the "Arimidex" thread about anxiety attacks.   Has gallbladder attacks been ruled out?

Cindyl

hslew- My LE therapist gave me a sample of this

It seems to help... I don't know if it harms the fabric or not, but the itching is less.

sandcastle

I do not have itching......I use a gauntlet from Lymphadiva's......Which is Nylon and Lycra......Liz

KittyDog

After my reaction to two different Eucerin products....I wouldn't even dare try it.  I take my own lotion to the clinic and put it on the table.  Did I tell you about the day she lotion up my leg that wasn't been treated and to my horror as she went to do the other leg we both looked at each other in a panic look because she picked up the Eucerin.  We quickly washed it and rewashed my leg.

It must be our humid weather and the fact I was on soup for several days but I am    very puffy all over.  I wish it would just all go away.  

As far as the red lump I was talking about last month.  I started treating it as if it was a ring worm.  It didn't get better so I went to the Dr. last week and got a new cream.  He thinks the same thing but told me to put my sleeve back on it want make it worse.  Me see the future back in the Dr's office.  Not better and it's been a week.

 Have a great week! 

GmaFoley

You know you are getting up too early for work when you put crystal lite ice tea in your smoothie .

Cindyl

Oh i don't know.  A friend of mine used to make these smoothies with a green tea base.  They weren't half bad...

http://www.eatliverun.com/green-tea-smoothies/ 

Rockym

Question:  If you don't see a reduction from swelling, does that mean you aren't doing your MLD correctly?  Does self MLD usually reduce swelling in the breast and axillary??