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

Suzybelle

Ugh, Laura - I'm so sorry about your back!  I hate back trouble!!!!

Feel better soon!

Estepp

Hi ladies! Thank you very much. I am doing  much better!

I wanted to post a LE GRRRRRRRRRRRRRRRR

I have to wear my compression sleeve while working. I am a Stylist. I get " hair splinters" in the garment. These splinters puncture the skin. It does no bleed.. and really... not a big deal. BUT, I bet it could cause cellulitous. I mean... I get about 1 hair splinter a month normally.. and I just get the tweezers out. No big deal. Because of the Compression garment... it pulls hair pieces in and traps them in the material.. which then gives me 2-5 hair splinter a day in my LE arm.

Now.... I know cellulitous is something we worry about. Is it THAT big of a deal? Can I just take anti-biotics to rid it. I KNOW I will be getting it... at some point. ( Well, I could get super lucky)

lmc1970

Hey Laura-glad to hear you are doing better. I would be happy to join the LE GRRRRRR club for sure!!!

3jaysmom

estepp.. i have a problem with my sleeves, which i wear gardening. so, i get a pair on knee socks from the dollar store, and cut the foot off, slide it overto the elbow. then, the sticks, and plant peices stick into that, and not deep enough to get to my sleeve.. the added bonuses are that i have very colorful "sleeves" w/out the cost of the Diva ones, and, when i wear it when i go out, a black one totally hides my beige, and it keeps my arms warm, when its' cold. i can't shop down a freezer aisle w/out wearing extra layers. you do, however, have to be careful not to get it too hot, like here, in summer.. hope that helps...3jays

Firni

3jays, that is brilliant.  I never would have thought about socks over my sleeve.  Now I'm imagining all the fun socks I've seen.  

I know the hair splinters can be a real pain.  My hairdresser friend has told me some stories about having to take her bra off at work to get rid of the splinters.  Ouch! 

3jaysmom

is that from cutting hair? never knew it was so dangerous!lol guess my new hairdresser won't have to worry; there's hardlt ANY hair to cut! am getting brave, and want a new do; much like Rod Stewarts, all punked up.. don't know what the thin to pair will do.. cant be any worse than what i have now. Feels too much like ole lady hair for my liking...

Lowrider54

Hey Suzy and Ladies of LE...just popping in to say hey and wishing you all the best...I have been trying to do some research into the lymphatic fluid that I kept having drained for months after my surgery to see if there is any documented correlation with retarding or diminishing the development of LE - I know it won't be of any help to you guys but...if I can make some connection - perhaps it could help folks in the future...I am always open to using my yucky issues as a test subject - afterall, it is my life's dream to be part of the G-Force! (a medical guinea pig)

Hugs and best wishes and thanks to ya'll for helping me with my 12 year old 'mystery'

LowRider

Firni

God luv ya, LowRider.  Not many really want to join the G-Force.

3jaysmom

yeah, Jo, i have the 3x whammy.. neuropathy, so i dont feel what im doing, or if i'm cut, diabeties, which means no cuts, etc..and lymphema. PLUS, i'm allergic to cipro just to add to the fn.. so, i take very careful care of my hands, and feet...3jays

Estepp

Jo, thank you!

OMGOSH... with my lifestyle... wow... I think I need to wear  surgical glove.

This SUCKS.

I cut my cuticles weekly... Lord. I burn my skin with bleach. Lord.

I thank you for telling me this. I think I am going to have to get surgical gloves to wear while I ........ DO EVERYTHING in my life and career...

Wow.. this is too much.

lvtwoqlt

I started using plastic gloves when I was first dx with LE. I got tired of buying the small boxes (20) at the grocery store every couple of weeks, now go to Sam's club and get them 200 at a time for under 8 dollars and keep a box in a drawer close to the sink. I use them when ever I am cooking anything messy and when I am stiffening my crocheted snowflakes.

Sheila 

Binney4

Estepp, you might want to try a Kevlar sleeve over your compression sleeve for work. There are also Kevlar gloves:

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#Special_Needs_Protective_Garments--dog_groomers,_gardeners,_etc._

(Geesh! That's a long link!)

Be well!
Binney

Suzybelle

Lowrider, that would be so cool if you came up with a link between the two - thank you for trying!

Laura, I wear plastic gloves over my compression sleeves when I'm doing housework, etc.

 What about the decorative compression sleeve covers they sell w/patterns?  Would that help at all?  It would be another layer of cloth, basically.

LE definitely forces us to get inventive, huh? 

SleeveNinja

small suggestion: whenever, if ever, you wear a plastic or surgical type glove over your bare hand for any length of time (like dishwashing . . . (or just resting)) load up your hand with your favorite, richest hand cream -- you get a real nice skin treatment.  ;-)  

Firni

So, there you go.  A positive side to all this plastic/surgical glove business.  Thanks sleeveninja.

Laura, it is all such a troublesome adjustment.  I started wearing gloves along time ago when I clean coz I don't like the smell on my hands and my hands dry out too much.  So, that adjustment was easy.  It was harder for me during chemo coz I couldn't wear the gloves due to Hand/Foot syndrome.  While cooking, I use a lot of chili peppers so I wear gloves anyway.  It's also less hand washing if you are handling raw poultry or fish or using batter and crumbs.   

3jaysmom

thanks for the link, Binney; never heard about kevlar gloves before. im in the garden every day, and they def. will help...3jays

lmc1970

hey guys-how safe/easy is it to fly when you have LE?

Firni

Imc, I just make sure I have my garments on and I've never had a problem.  I also make sure to take extra gloves or gauntlets with me too so as soon as I'm out of the airports, I can put on a clean glove/gauntlet and get the germy one washed.  

Suzybelle

Hi, lmc:

Flying for me is not a big deal - I have le in my right arm and truncal le in that side.  As long as I wear my compression garments, make sure to drink lots of water (a real pain when you're traveling, but it's got to be done) and not carry on anything that I can't handle with one arm, I do fine.  I also make sure my seat is a window seat on the right side of the plane so I can elevate my arm a lot.

The biggest challenge to me when traveling is what to eat.  I'm a vegan and that gets a bit hard trying to navigate restaurants, especially in the airports.

Anonymous

I've actually found flying is better for me than a long road trip. I'll echo what Firni and Suzy and say: wear your garments, drink lots of water, watch your salt intake, be careful while you're at home getting ready and packing and when going to and from the airport/plane - don't overdo or lift too much. Ask for help in putting stuff in overhead bin. During the flight, occasionally raise your arm over your head and slowly open and close your fist several times. I use a trip to the bathroom as an excuse to get up and walk around and stretch my legs. 

lmc1970

Thanks for the advice everyone! Am certainly keen to have a break and "get away from it all". Too bad I can't leave my LE at home!

Estepp

I will say... I flew on three trips within 6 weeks. I wore the right garment. I so still believe this is what made my LE come back....

Thank you for your info on covering my arm garment while working. I am going to go look at your thread Binny... that you posted.. thank you !

mrsnjband

Hi Binney,

I was doing so much better that I thought I it whipped!  I saw my regular doc on thursday and was doing better. Then saturday I started getting a fever & by sunday a.m. I had a HUGE rash.  So I went to urgent care, who sent me to e.r. who then admitted me. Just found out they will keep me one more day. I've had 2 rounds of iv antibiotics. Thanks for all your advise or I might not have kept a close watch on it. Norma

Binney4

Well, Norma, that rots! REALLY glad you got help quickly and are finally on the mend. Sounds like they're taking you seriously, too -- good for them! Please get better soon. Stay really well hydrated, take some deep abdominal breaths from time to time, and ask your doctor what you can use to keep your skin well moisturized. Keep us posted.

Oh, and of course, do something chocolate!

Real gentle hugs,
Binney

mrsnjband

Thanks, Binney.  As a matter of fact they brought me 2 chocolate chip cookies & I ate them both!  Thanks again for your support. NJ

Anonymous

Can I join in the rant? I have had LE since 2007 (the year of the Beast) and I'm in therapy now for the third time. I have a custom Reid Sleeve on order and am hoping to get a Circaid sleeve for daytime before the end of the year.

I, also, am sooooooooooooo tired of acquaintances and complete strangers asking whats wrong with my arm. It's huge and I feel like Popeye and I am just sooo over it. I am so tired of wrapping by myself and fumbling around with that last bandage. I'm tired of the wrap starting to fall off while I am out. I'm tired of trying to get the sleeves up. I'm tired of my arm hurting (although, it's really more achy than horrible pain).

The top of my arm is so big, no one can get it down to size. Usually when people ask me about it, I say, "It's just an annoyance."  Hrumpf.

At this point, I'll be so excited when I get the new compression garments and maybe I can stop wrapping for a while. I am so over this!!

Miss S

PS I am grateful for good insurance coverage which pays 80% on durable medical and all my sleeves have always been covered.

Estepp

Good Rant Miss Shapen! Sorry you have LE too. CRAPPOLA !

Ladies... this might be a question already asked, but I cannot find the answer.

Can we get away from wrapping? I wear compression by most days..... is there some garment to wear to bed? I HATE wrapping just as you all do. The wrap makes it impossible to do most anything... but the compression garments allow for working and other things.

My PT told me that the compression is really only a " little" help. It will not help LE get better... only " try" to keep it from swelling more.

Anonymous

Yes, the reid sleeve is for wearing to bed!

http://www.lymphedemaproducts.com/products/peninsula-reidsleeve-classic-upper-extremity.html

Estepp

Thank you....... I checked them out.. and OMGOSH..... those are bigger than the wrapping. EEEKKKKKKKK.... so far... I am sticking to wrapping.....lol.. thanks for your reply though!

Marple

From what I can gather wrapping is considered the gold standard to help reduce swelling.  It would be nice to have a night sleeve of which there are different ones to choose from.  Check the LE topics for night sleeve threads.  I don't know if our bed is big enough to fit two people AND a Reid Sleeve.