GRRRRRRRRR I HATE LE..........
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Rockym, I'm only 5' 3", so I'm not optimistic, but I thought I'd at least give it a try.
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How snug is my gauntlet supposed to be? by the knuckles, on the one I have, seems to be loose, the mid-hand is tighter but not uncomfortable and then the wrist seems to be like the knuckle part.. I sometimes hate being a newbie!!!! I am bugging you gals all the time....
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GmaFoley--the fit should be snug, and no gaps, you want the wrist to be loose, so as not to cause a tourniquet and trap fluid. The medi people specifically make their gloves 1/2 compression at the wrist and their sleeves 1/2 compression at the wrist, so as not to double up compression.
On custom garments, you check the form to tell the manufacturer if it will be worn alone, or with a sleeve.
The bottom line is, how is your hand and fingers when you wear it?
Kira
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Kira - My hand and fingers are fine I think this is more a precaution -I do get a little swelling between 2 of my knuckles (index and 2nd finger knuckles) - it just seems to be loose to me at the knuckles - I can slide two fingers in the palm part without stretching... The thumb part feels good/snug.
So far, found the breast LE, 4 weeks ago, and as of last week the mid forearm, elbow and mid upper arm have been swelling.. soon as the sleeve comes off it seems to swell again.. would wrapping be better than sleeve? - I'm going to talk to LET tomorrow about it.. I really didn't think swelling would travel to my arm this soon - I thought we had breast under control :-/
Every week something new - do we ever get a break???
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GmaFoley--my LE therapist calls LE "Whack a mole"--it keeps popping up. Definitely check in with your therapist. Unfortunately, all areas of the quadrant are at risk for swelling--DARN!!!
The rapid refill may argue for some wrapping. Or a definite check on the fit of the compression garments.
LE rots
Kira
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NOTE: Expand-a-Band - Compression Bra runs small - I am a 44 their XL is 40-45 too small and elastic on the bottom rolled up - no problem sending it back and they are sending me another - I will get it by friday - I will try the xxl and let you know if it is just the size adjustment or the whole thing stinks... I like the feel of the inside and it doesn't itch - was just too small.
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Am back home from Diep now. Told and told to.not use LE side but they did for an aterial line. We'll see how it goes.
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Galsal, Hope you'll heal quickly and feel better soon!!! I sent you a PM.
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Galsal, I don't read the recon threads much anymore, and I'll bet you've had lots of support from the women there. I did diep and so I know that every day brings a noticeable improvement. You'll be feeling human again before you know it...good thoughts and LE brownies coming your way!
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Here's a question for you swell experts: Do you ever get an early warning signal in the form of some itchy, tiny bumps? I have never had swelling in my hand, only in the upper arm and on the side of my trunk. In the last few days, I've had itchy little bumps on my ring finger. A few days ago, I couldn't tolerate wearing my wedding rings, so I took off the set and the problem seemed to clear up. Yesterday I put on a simple band that I wear scuba diving and other times when I worry about the stone in my engagement ring/wedding band set. Today--same issue, the bumps and itching came back. I see no swelling anywhere in my hand and none anywhere else, for that matter; just the usual heavy achey feeling in my upper arm. Well, except for where my dear dog scratched me ever so superficially about five days ago, and I can see that it provoked a bit of persistent swelling, very localized. No redness. I've been watching it like a hawk. Still, it makes me nervous so I'm wondering if the funny area on my finger is somehow related. This is so random, I cannot make heads nor tails of it, and I cannot help wondering if there's an infection brewing. Somehow going to an ER to show them an itchy finger does not appeal (I am away from home now...do have my Keflex with me). Any wisdom?
Carol
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Hi all....
I am just having trouble keeping my head in the game.
I feel so much more attractive without my sleeve and glove on...this time of year it's the grubby awful beige not the black. (If I am going to have long sleeves I can do the purple glove)
I have kept my LE under control by being really good about doing it all, but now I just want to cheat all the time.
I wasn't like this last summer....why am I just so over it all.
It's like I have an inner rebelling teenager.
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Carol--I get little bumps under jewelry when it is hot outside. I always figured it was heat rash. I just don't wear much jewelry in the summer.
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Galsal, I pray all heals well...
Cookiegal, I just started the sleeve journey - but I want to cheat too, it was just the end of last week when LE therapist advised me to wear the sleeve during the day - not just for work.. I can't believe how all you ladies are strong enough to fight this...
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Becky, thank you! The bumps are next to, not under the rings, but it's logical that the heat could be provoking the problem.
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Cookie - truth be told - - - I cheat at times. There are days when I just can't muster the energy to care about MLD so I skip a day. Since I am a bit afraid of the consequences I don't skip often but it does happen on occasion. The sleeve - even in this heat I don't always wear it inside. The sleeve comes on the first time I go outside and then stays on for the day.
When all this started I was looking for a 'checklist' of what and when to do things for LE - never found it. I have the knowledge and tools needed and always heard I had to find what is best for me. That was frustrating since I didn't know what was best - but I am learning every day.
GMA - for me, it's not so much a matter of being 'strong enough to fight this' but more about not wanting the consequences if I don't.
I think that rebellious teenage is inside me, too, to but I call her my twin. She just doesn't want to behave some days
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I'm with Ohio--it's beyond tedious to care for the LE, but the consequences....
Cookie--it's the nature of a chronic disease. You poop out on motivation. My LE therapist always says to "see what you can get away with"--and if you can't skip the sleeve, you'll put it on, because the consequences will motivate you.
I used to care for adolescents and those with chronic diseases would test their limits. We're really no different, except we have better reasoning powers.
We get sick and tired of being sick and tired (It's a famous quote, Binney knows who said it.)
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Am I in trouble if I go down a Log ride with granddaughter? can I get the sleeve wet?? or wear a rain jacket? We are going to Enchanted Forest Saturday. Edit: Kind of a relaxing scenic ride until the drop at the end..
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Gma, That sounds like a lot of fun! I think I read it's ok to get the sleeve wet but I don't know how it would feel all day after that going around with a soggy arm. Can you take off the sleeve just for the ride? The raincoat might be a good idea!
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Lee, with all the possible bumping, I thought I might need to wear it - but I am getting a spare sleeve to change into after all the wet part of the rides are gone. Before BC, I actually made the parks record with my granddaughter of riding the Log Ride 16 times in a row.. Not sure I can do that this year with the LE on my plate but she is now old enough where I can watch her break her own record...
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Log Ride records!!!
I miss parks and rides. I used to love rollercoasters but now I'm a little too scared to get back on any. Its the bumping around like you mentioned that I'm afraid might do something to my arm.
Maybe someone already answered this one...what do folks do about swimming? I can't swim, because I can't get my arm up over my head to do a swim stroke, but I would like to be able to get in a pool or the ocean if I have the chance. Should I keep my sleeve on in the water? I'm thinking maybe I should get a spare one just for that because the chlorine and the saltwater can't be good for a sleeve.
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Lee - no more roller coasters for me either but I am hoping, if I remember right - the log ride only has floating type bumps - I only get to see granddaughter once a year and I really want to do this part with her... I think it is time to have "a talk" with my LET today and ask what to do if this all goes bad - how to wrap etc..... Please speak up Ladies - am I being stupid for the love a ride!!!0
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I need your help and your advice. My left arm hurts. It just aches. It really, really hurts. It has finally motivated me to jump back through all the bureacratic b.s. to try and see my LE OT therapist again.
I was on public aid for my breast cancer treatment. They dropped me back in November because I was 'done' with my breast cancer treatment. I called the therapist's clinic today to see if they would let me private pay and they are going to send me all the paperwork to fill out for 'financial aid.' My PC doc moved to the V.A. so I don't have. I've asked around and today finally mustered up enough courage to call. Gave them my social security number, made an appointment for August 2nd. Hurray! Five minutes later they call me back and said they are not accepting medicaid patients. I told her the first time that I would be private pay ... that I had no insurance. She was fine with that ... then on the second phone call she said I showed up in the system as public aid and they would not take me. I said, "I don't have P.A. they dropped me in November I will pay up front, come in with cash, credit card" she said, "No, since you show up in the system as being eligible for public aid we won't take you." WTH? What am I supposed to do? I DON'T HAVE PUBLIC AID ... I haven't had it since November .... I'm stuck in bureacratic hell .... I've been crying for the last thirty minutes and can't pull it together ... I feel so lost, so alone, so abandoned ... I need help ... what should I do, ladies? I could try the public aid office but I don't show up in their system? What do I need to do? I'm so frustrated!
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Read back through my post just a little clarity... my LE OT therapist only accept's a doctor's referral .... so I called a new PC doc, set up the appt and they are the ones who called back ....
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Dawne-Hope, I soooo know that feeling (surgeon "abandoned" me between my two mastectomies and I cried for two days).
So first of all, have a good cry, and don't beat yourself up for it. You'll pull yourself together later--you are NOT alone and you WILL get this worked out. But that feeling of abandonment is definitely over the top, and you need to allow yourself the grief and rage. (Wish I were there with you in person--we'd have a good cry together, which would eventually turn into some shared laughs and a bit of tea and chocolate.)
Later, when you're good and ready, either go back after this same doctor (in person, asking to speak to their office manager), or find another one to try. If their office is this stick-in-the-mud and unhelpful, they're probably not right for you anyway.
Keep us posted and we'll at least talk you through it. You aren't alone, even if it feels that way.
Gentle hugs, prayers,
Binney0 -
Gma, I have total confidence in you to figure out after the first ride whether you can go for your record or not. But for goodness sake don't shrink from this--it's obviously important. Try it and trust your own good judgement. If you swell afterward and you can't get it under control yourself, call your therapist and get in for an extra treatment boost.
Good idea to have a sleeve to change into, but if the other one dries within 20 minutes or so it's fine. If it's so humid it stays wet, then change it for a dry one.
We're all waiting to hear how it goes!
Binney0 -
Binney4 - How I would love that! Thank you! xo
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Teka - No and they don't care. I haven't seen my PS since he released me a year and a half ago. I saw my BS in September and she barely blinked when I told her I had LE.
I have been off public aid since December '10. I appealed the decision and had a hearing in November which was one of the more humiliating experiences of my life. I had to say out of my mouth that I declined the public aid because I was no longer in active treatment for breast cancer. I don't have it anymore ... there is no way to activate something which I no longer have. I go to my local office and nothing shows up on their computer ... it was that way when I went in November. I had a special card that was for breast cancer treatment only. It's banging your head up against the wall over and over and over again. At my hearing ... even the officer who sat with me had tears in her eyes and said she was sorry there was nothing she could do. She said I feel in a loophole. Yes ... and it is a very dark and deep one.
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Binney4 - and I'm sorry that happened to you.
You are such a rock and encouragement. Thank you for being here.0 -
Dawne-Hope - That really stinks - I know the feeling though... I am paying for my LE T - I will pray that everything works out soon.. I had a few LETs that I talked to over the phone that actually said anytime I had a question call and talk... That was before they finally referred me to one in my town.. As Binney said - its time for some tea and chocolate..
Binney - I did talk to LET today and he said that if I wear my sleeve and aren't bumped around, burned or get scratched, I should be ok... I asked him about wrapping and said go enjoy yourself, be carefull use the sleeve and night clothes and elevate.. We will discuss the wrapping lessons next week - he did check the sleeve and gauntlet and said the sleeve is fine but gauntlet is to big (as I thought) I have the new one coming in friday.. He said the sleeve is doing a good job and the swelling is mainly by an old surgery scar on elbow and upper arm.. He is now saying we should probably work on that elbow scar - it looks like it is blocking the flow of fluid...
I will let you all know what happens... I love my granddaughter....
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Grrr...... Does anyone have suggestions on how to convince my fitter to let me return the off-shelf Juzo glove that did not fit (fingers too short)? (I knew it was wrong immediately but let her talk me into taking it.) I haven't tried to argue or insist yet but at the time she said that since I had worn it for a couple of hours after leaving her office it is not returnable. I think if I asked she would say "company policy." $95 down the drain....Anyone have references that prove "everyone else" takes back garments that don't fit? It seems so from what I have read here.
BTW I got my custom Juzo glove and it is better altho occasionally I have trouble with thumb falling asleep. I'm trying to stretch the thumb out a bit with a small medicine bottle.
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