GRRRRRRRRR I HATE LE..........
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Thanks, Binney: i have a hospital bed, already, for the ms; and yes, i try to sleep on my back as much as possible..but i sleep on the left in my sleep.. same side as port, ans swelling...
My le is so bqad with the cold front w'ere having,im in my Lymphema Sleeve co wraps ( the one with 2 sleeves) i thinks arm are.. i love it.. sleeves are too long, at the wrist. gonna get the bridal sop here to shorten the, and im trying to learn to tyoe with my gloves on.. my hands are so bed, with so many things, not just le; that im looking into a dragon software for christmas..GRRRRRRRRRRRRRRRRRRR3jays
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awwww...3jays, that's rough. A batch of brownies for you,
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Thanks, Kay.. Mur brought a dozen home last night from Boston Market.. i woke up with a hot flash, last night, and ate eight. yup; i ate eight.. redundant, huh lol had him bring the rest into work today. too much temptation for this old girl hahahahanight....3jays0
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My insurance covered the Belisse. It's fine. It's not a miracle. (compared to say the booby wiggles)
Little bit of a flare this week, I went on vacation gained weight, came back was tired gained some more weight, got an AWFUL cold, lay there for three days eating every hot spicy food and ice cream and guess what...I gained more weigh. In just three weeks I put back on everything I lost this year.
Then tonight, I picked up something at work, forgetting I had taken my sleeve off.
So here is my latest quandry. I do better with my custom Juzo instead of the silverwave bilat, but with the juzo I can not go gloveless. I can get away without a glove for a while with the silverwave.
So now I am forced to either take the whole thing off and on several times a shift, or wear the silverwave, which I can keep on for longer.
I think I have my answer since my hand is not really the problem.
Wearing the glove all the time is not a great option since I have a ton of public contact and attention.
Sigh
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Cookie: I think the silverwave has less compression, so it doesn't push fluid into the hand. Maybe on your days off you can wear the Juzo and glove. I know I vary my routine if I'm working--like no gloves except for driving to work.
Glad you're feeling better--Leah had written how colds make her LE flare--all that inflammation.
Kay: I have struggled with gloves what made things worse and it just sucks. My LE was worse in my hand during rads, but everyone told it would "go away" after rads, and unfortunately, it actually got a bit worse before it settled down to the current state. It's great that you know how to wrap, and stinks that you have to. I actually have custom gloves at this point, with medi 95 gloves to use when I don't want to put an expensive glove at risk.
3jaysmom: feel better!
Kira
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Thanks for the comments Kira. The glove/sleeve I have is actually custom made but apparently a lower quality that he picked because he thought I was going to need another one soon after rads because he thought I'd get smaller. He took the glove back today, was going to ship it back and ask them to remove the binder part at the bottom of the glove which he thought was causing the problem. He gave me a non custom glove which he had to try. He says this is a better glove, better material, but it is not custom. l've only had it on for about 2 and a half hours, but I'm pretty sure I can see my hand swelling already. (It was down this morning from me wrapping it last night.) This is getting really frustrating. I took a couple of pictures last night of my hand so he could see how bad it got. The pictures are really disgusting. My hand looks like something from the Elephant Man. It's not that I didn't think he believed me, but I just wanted him to see how bad it was getting. On the positive side, my arm has gotten smaller. Unfortunately, it's getting smaller at the expense of my hand. If I posted the pictures as a warning for women, I think a lot of people would be much more careful to do what they could to avoid LE. I can't believe a month and a half ago, I thought it was so insignificant I was embarassed to go to a therapist about. It's hard to believe how bad it got so quickly.
On the very positive side, I am finished rads!! WOO HOO!! Brownies and chocolate covered pretzels all around.
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Thank you ladies, I appreciate you all so much! Well, the CT didn't show an abdominal hernia, I don't know if that is good news or not. A hernia at least made sense. Now I will wait to see the dr. On Wednesday to see if he has any other ideas.
Kira, during my last surgery they placed an IV in my foot while I was awake and then they placed a back up while I was asleep. I think they must have had the tourniquet on too long and that is what caused the blood clot. This is my 2nd on and both were related to tourniqueting. They all seem pretty surprised about it as well. Now they are saying, they expect me to be on Coumadin the rest of my life. UghhhhhM
I'm sorry things are so difficult for so many of us,
Brownies all around.
Thank you ladies!0 -
Kay--rads is DONE!!! Yeah! Things will get better--I was so bummed when my LE didn't go awaya after rads (had it before rads...), but that was so unrealistic to be told that and to expect it. But it is a whole lot better.
Christine: the DVT's and lifetime coumadin stink. My mother is on one of the newer anticoagulants for atrial fibrillation, where she doesn't need any more INR's--I don't think they're approved for DVT yet.
Serious brownie time.
Kira
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Kira, thank you, I'm trying to pull myself up by the bootstraps, brownies help, even cyber brownies! Kay, congratulations!! I'm so glad for you! Things will get better for you.
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Kay, I'm so glad to hear you're one with rads! Let's celebrate with brownies!
Leah
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Just a brief note of grrrr:
I wrap each night, and my hand/forearm has been good, and I do own a jovipak and solaris. I only wore the jovi a couple of times, and thought I'd try it last night, and woke up with POD HAND!
I am sick and tired of wrapping each night, but I sure don't want to wake up with a swollen hand either. Normally, I get away with minimal compression during the day...
I have the kind of skin that hives with pressure--dermatographism--http://en.wikipedia.org/wiki/Dermatographic_urticaria and I kind of wondered if the chipped foam makes me swell, where the smooth wrap doesn't.
Yesterday, after not wearing my wedding ring since my surgery, I stopped off to see if it could be sized, and my finger is smaller than it was due to wrapping/compression (my husband made the ring in dental school, from a plaster cast of my finger, and it was always way too tight, and made a permanent indent on my finger, so it's been in the jewelry box since 5/2008) and the woman said technically it fit me, but because it's been so tight in the past, I convinced the young woman at the store to sell me a small band, a half size too large, so it won't bind. I told her about the LE, and made my DH pay for it--we'll be married 30 years this coming anniversay--and I think the jewelry woman was kind of shocked--we sure aren't the typical couple who buy a wedding ring.
So, yesterday, I wore a wedding ring for the first time in over 3 years, and today I dealt with the pod hand from the jovipak. Just when I think it's all under control.
grrrrrrrrrrr
Kira
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Glad you got a wedding ring that you can wear. I'll be married 27 years next march and haven't been able to wear my wedding ring for about 8 years. I have an allergy to metals which has become worse. I used to be able to wear gold but now even that turns my finger green. Sorry the pleasure of the new ring got tarnished by the LE. What is pod hand?
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HA! I have that dermo thing too..my onc mentioned it recently....I bet all these inflammitory tendencies are linked to the LE
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A week ago I finished my two weeks of mld and wrapping appointments. I had three different therapists during that time and none of them were sure what to do with me because I was not responding to the wrapping. Some of my measurements went down and others went up, for example, my wrist was smaller but my previously unswollen hand became swollen. I was supposed to get fitted for my sleeve and glove at the end of the two weeks, but since there was no significant improvement, they suggested I continue wrapping for two more weeks and then see the fitter. I feel like there is a little improvement. I was expecting to no longer have pitting edema in my arm when I got my new sleeve.
Should I just consider this my new normal and get fitted and hope I don't get any bigger than I am?
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Kay: if its important to you to wear a band, i know it is, to me.. i buy surgical steel. they have some pretty stuff on QVC; and i dont react at all.. its like the surgical steel jewelry they put in peirced ears.......3jays0
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Kay: my daughter is very nickel allergic, but can wear sterling silver, and for some lucky reason, her white gold wedding doesn't bother her. I did notice they sell titanium when I looked up wedding bands on line.
A pod hand is what I call a swollen hand: yesterday all the spaces between the knuckles were full. Once, when I first was getting LE therapy, the therapist saw my hand was swollen, and put me in a tight wrap--with no finger wrap--and when I took it off, it looked like Mickey Mouse's hand, but with 5 fingers. That's when I started to call it a pod hand.
Wrapped, and gone today.
Cookie: aren't we lucky? We can write our name in hives on our skin. Totally agree with you that inflammation and LE are linked--when will those studies come out??
Annette: if the wrapping is not working, they need to sit down and figure out what is going wrong. If your hand got swollen, they were trapping fluid in the hand. I don't think this is your new normal, it's a bad response to the treatment plan--so the treatment plan needs to change. Some brands of compression have a wide range that a size covers: like Jobst--just comes in small/med/large. Perhaps they want to try that type of compression--with a gauntlet/glove.
When you're not responding and they cause new swelling, they need to revisit the plan.
Kira
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Thanks for the info. I would like to wear a wedding band. I got a platinum one when I was having the problem since the jeweler said that has the least amount of nickel. I will look into the surgical steel and titanium.
Cookie, I don't know what the dermo thing is, but I get contact dermatitis a lot. Also have rosecea which is an inflammatory thing. That is interesting that you think there might be a link with that and LE. I hadn't thought of that.
Annette, I am in a similar situation to you. I have gotten smaller in some places in forearm, but larger in hand just as they have tried to move me to a daytime garment. Not sure what is going to work for me yet. My DH thinks if there is an all in one sleeve/glove, that might work better for me than the two separate garments. My PT mentioned using the sleeve but wrapping the hand if it continues to swell. I am okay with that short term, but not long term.
I think a lot of us could use some brownies today.0 -
(( HI EVERYONE ))
Read all yer posts since I was last here.....MAN! Sigh! Hugs all around.
I have been spit out of Thee most terrifying wait for the PetScan...having it done...finding out I am all clear. Made my Truncal LE and all 6 garments/ MLD and all the changes its made in my life, all the not good changes.... and fearing going from Stage 0 to Stage IV....that it has given me a new take on GGGRRRRRrrrrrrrrr.
Binney or Kira have a bizzaro ? have you ever heard of toungue swelling with truncal/ anterior-posterior chest wall, and axillary LE?
Sending you all Gratitude, Sanity, strength and patience.
Hugs to yall
xooxoxox
Brazos
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Oh, Brazos, I'm so glad for your news, and so sorry you had to go through that. Truly, it completely robs you of those waiting days, and it leaves you so wrung. But at least it all had a better ending.
I've never heard of tongue swelling with truncal LE, but that of course doesn't mean it's never happened. Do you have neck and jaw swelling as well? I'd get it checked out, because that kind of thing can be caused by reactions to drugs or insect bites or whatever, and if that's the case it calls for quick intervention so it doesn't become hard to breathe.
Good grief! Enough already, yes?
Let us know what you discover, please.Hugs, brownies,
Binney0 -
love the mickey mouse hand!!!thats what i fight with, on bad days.. what since bandages do you all use to wrap your hands.. went looking today, but am going tohave to order online... my hand responds so well, overnight.. im also looking into a night garment, the glove soemone, i think it was Kira, mentioned...
with arthritis, neuropathy, and le in the same hand, its a PIA.. but is still manageable.. im grateful for that.. ordering the sweel spots for where the dog ears were this weekend. that should help... thanks for so much info to choose from gals...............3jays
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Bravos, wonderful to hear! Doing happy dance for you. Are you on any meds? There is a post on the stage 3 forum from Jenny boog, she had tongue swelling and they deduced it was an se from a med she was on, I think an AI. I can look up which med for you if you want.
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Bravos, the only tongue swelling I've seen from medications was from blood pressure medications: the ACE inhibitors (lisinopril) or the ARB inhibitors (cozaar).
It can be part of angioedema, which is nothing to mess with, as you can have difficulty breathing.
But, it can also be part of the oral allergy syndrome, where people swell if they eat raw fruit.
I'm thrilled for the negative scans: so those pesky nodes were just there to scare you/us?
Kira
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(( Binney, 3Jays, kay1963, kira))
I thank you all again. I have been thru the whole workup ent/ int med/ dentist... on a ton of meds and trying to rule out which whats what...carry and epi pen/ benedryl mouthwash/ benedryl....I was even told it could be from dry mouth and burning toungue syndrome r/t the evils of Mentalpause descending upon me...
Who would have ever thought I would be learning MLD and end up with such a scare? Thanks for keeping me company. Any thoughts of any plastic surgery have also vanished from my mind. Along with being in the Pits from LE... it snapped me right out of my pity party.
Anyway I just tossed that ? out b/c I seem to have the weirdest things going on.
Hugs and Brownies
xo
brazos
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Ok.............I'm tired of this ..................went to the LE specialist today new sleeve in hand..................she agreed that it didn't fit right...........it was cutting off the circulation when I would bend my arm at the elbow...................now we are back to square 1, ordering a different sleeve....................oh this has been ongoing since July 6th.................I wonder if I will ever get a friggin sleeve that works....................I mean it is a challange..............I have a weird arm, but I'm sure I'm not the only one like that.................here we go again....................and my specialist is "top notch"................very highly recommended..............she is as weary as I am about the whole thing...................saga continues
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Boy... this thread is still going strong....:( which means... LE has no cure yet! GRRRRRRRRRRRR
I am thinking about all the LE ladies around the globe today, as I curse mine.
xoxoxo
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hello ladies.
I haven't seen this particular question before - can cording occur in the space between the thumb and the pointer finger? I do not have cording anywhere else but it sure looks like a cord and I showed it to my LE therapist and she showed me how to try and massage it down.
As I am a new comer to LE, grrrrrrrrrrrrrrrrrrrrrrrrrrrr is right!
Thanks,
Trish
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Trish, I had it run down to my thumb--I could feel it, but couldn't see it. When I first developed LE and was new to wrapping/gloves, I developed some odd little cysts and lumps on my fingers that went away--we assumed they were due to chafing.
There's a picture on the AWS page on stepupspeakout, and it shows cords to the hands:
http://www.stepup-speakout.org/Cording_and_Axillary_Web_Syndrome.htm
grrrrrr is right
Kira
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Yup, I was just told that I have cording on the palm of my left hand--and lots of swelling in the web spaces between all fingers, not thumb, on the top of my hand.
I think hand LE is the worst--it hurts like hell and just does not want to stay "unswollen" and pain free for more than a few hours.
RANT RANT RANT!!0 -
Oh Jane! That's the hand you hurt, right?
Hand LE sucks the worst.
But, the post traumatic swelling--I was just thinking of posting a picture of my hand in the cast from a year ago, and how much better it is now.
There is one "windpuff" of swelling in the web space next to the index finger that never goes down: it doesn't look the same when I make a fist.
Are you seeing an OT?
Here: this was my purple swollen hand that matched the cast.
Feel better Jane!
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grrrr my new sleeve came yesterday. Man I didn't realize how stretched out my old one had become. Man it is tight and I think it is a wee bit too long. Ugg think I am going to call them tomorrow and see what can be done.
I also saw my family Dr. today. He confirmed my fear. My leg is significantly bigger than the other one and said I need to get into the clinic. I still and waiting on the referral so I guess I will be calling them tomorrow too. grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.
My brighter note...my arm is down a lot more today with wearing the new sleeve.
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