GRRRRRRRRR I HATE LE..........
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Well, I over did it yesterday. Here is the back story, the other week my father-in-law offered to mow my grass so I wouldn't have to pay someone else to do it, I accepted his offer with reservations. He did mow my grass, shorter than I really wanted it (his words, so it won't have to be cut as often), I am just hoping the heat wave this week doesn't kill it. He didn't weed eat everywhere my usual guy does. Well I was tired of seeing the high grass along the bank by the road, the bank up the driveway and around the storage building. (even if he begs to mow for free again, I am going back to my usual guy) That being said, I got out the electric weedeater yesterday morning, before the temp hit 80, and weedeated about 30 minutes. I did wear my gauntlet (no swelling in my arm) but this morning my arm is sore and my hand is swelled. I didn't think about wrapping my hand last night. It was weedeating that started my LE 3 years ago so I have not done more than 5 minutes at a time (it actually takes longer to get the weedeater/cord out), just to keep the grass away from the walk into the house. I thought my husband wasn't going to make it home this weekend so I went ahead and did the weedeating, being the independent person I am. I have been released my my therapist so before I can go back to her, I have to get a referral from my physician. GRRRR!!!!
Sheila
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Oh Sheila, If you know how to wrap, now is a good time to do it. If you don't, stay cool, elevate the arm, consider compression gloves--like the isotoner therapy gloves--they're inexpensive gloves for arthritis and provide some compression, drink like crazy, and lots of deep breathing.
We have to live our lives.
There seems to be a lot of questions about sleeves without hand compression. Andrea Cheville answered that--and I'll post the link, the key is it's more important for women at risk than women who have established LE that is localized in the upper arm, but even they need to be careful, you don't want to push fluid into the hand:
http://lymphedivas.com/lymphedema/gauntletandsleeve/
I urge you all to read the entire page--the font is annoying, but the information is crucical:
Here are the first two paragraphs:
Controversy persists regarding the benefits of compression garments in preventing lymphedema. A key stumbling block is the possibility of triggering hand lymphedema when wearing a sleeve without a glove or gauntlet. Compression applied to the arm may reduce lymph flow from the hand. Even a normal lymphatic system works harder to drain lymph from the hand than other parts of the arm. This fact explains why hand lymphedema is often the most challenging to treat and why lymphedema specialists take great pains to prevent it. Concern that compression sleeves may inadvertently trigger hand lymphedema underlies the recommendation to always wear a compression gauntlet or glove with a sleeve.
Most women at risk for lymphedema who have not noted increased arm volume, symptoms, or other indicators of early lymphedema wear their sleeves during activities that increase lymph production. Examples include airplane travel, vigorous aerobic or resistive exercise, and repetitive activities performed in an intense fashion. It is important that women using preventative compression sleeves combine their sleeve with either a gauntlet or glove during such activities. Particular attention should be paid to constriction at the shoulder band, elbow, and wrist crease. Sometimes overlap of a gauntlet and sleeve at the wrist can cause excessive pressure.
For women with established lymphedema the decision to use a gauntlet or glove is based on slightly different considerations. Lymphedema of the upper limb may be distributed in a surprisingly patchy manner. For example, lymphedema may be restricted to the underside of the upper arm or the back of the hand. It goes unsaid that lymphedema is a very individual phenomenon. Many women with lymphedema never note hand involvement despite use of an arm compression sleeve for many years. However, even these women should remain watchful for hand swelling since lymphedema is a dynamic process with the potential to change over time. A quick check for hand edema after engaging in the activities listed above is always warranted. Differences in skin texture or the visibility of bones, veins and tendons may indicate lymphedema. These changes suggest a need to consider some form of hand compression.
Everyone stay cool, and I hope no one experienced the storms yesterday.
Kira--hiding in the A/C
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kira- Thank you so much for the explanation about sleeves w/out gauntlets. I have a few friends who have just sleeves they were given for precaution, but no gauntlets, so I'm going to pass this on. And I am going to start wearing my gauntlet. I didn't think I had any hand involvement but tried to wear one of my rings yesterday, on my good side, and it was too tight. Guess that's a good indicator! Thanks again!
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It's so nice to have a place to vent.
One of the things about LE that is so vexing, is it is literally so hard to cover up.
I am having a really tough time emotionally right now.
My husband is sort of checked out dealing with some sad and screwed up family stuff and we both have tough work schedules and I am feeling depressed.
One way I always coped was looking nice and getting out and socializing.
Now on top of everything else I have to wear this F!*%&# sleeve to an evening outdoor function.
It's too hot to go sleeveless, and these folks already have seen me in a sleeve.
I can't even wear the black one out in the sun.
Part of me wants to just blow it off. I know that will only make my mood/depression worse.
So I'm gonna vent..waaaaaaaaaaaaaaaah waaaaaaaaaaaaah waaaaaaaaaaaaah
poooooooooor meeeeeeeeeeeee!
(I did it the first time in caps but it was so obnoxious)
As you were.
Hope any of you in the storm's path are finding some AC or ICE or something!
cookie out!0 -
I have been out of touch at a reunion for several days. I have arm and truncal LE and was given a sleeve and glove to wear for three months then moved to a gauntlet. I was told to wear the glove when flying. My LE is in upper arm and has never been in my hand but that was what I was given by my therapist. Maybe she has read Cheville's article.0
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Kate, if your fingers are swollen, a glove is likely the best bet--my LE moved into my fingers with a gauntlet. As my LE therapist says it's "whack a mole"--when I took the CLT course, there was a woman there with BMX and reconstruction, and she discovered she had truncal LE, and when we worked on her, her watch became loose on her arm, and she told us she woke up and couldn't get her rings off until mid-day...
And she's a very experienced PT, and her PS told her it was "post op swelling"
Cookie!!!!! Vent away--the problem with chronic stuff like LE, is that we don't get a break. And we want/need a break. Hope your husband's family stuff resolves, it's so hard to see a loved one suffer.
Binney always says our LE shrinks our significant other's lives: like when I got that evil cellulitis after the CLT course, my dh said "Oh great, now you won't even go out in the sun again!" because I thought a sun burn triggered it.
No, I got mineral sunblock and sunblock shirts, and I go out again, but there's a new worry--and I'm tired of worries and limitations.
Join you in the waah.
Huge really cool storm blew through, and my dog wore her thundershirt, and looked quite dapper and hit me up for biscuits.....
Kira--haven't been out all weekend, and it stinks, but the house is clean...
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Kira: Thanks from me too for the sleeve/gauntlet info.
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Kira - Thank you for responding to our Mystery sleeve/gauntlet question. Very informative answer - thanks again..
Now for the stupid Question of the day! - My 11 yr old granddaughter is coming to visit and she is gonna want to go down the log ride with me to break our record 2 years ago - 15 times in a row - you think I could try to do that again - sleeve, gauntlet ??? Or am I being stupid - I love that ride - Haven't been since dx....
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This is a long rant, so I apologize in advance. I just need to get this out.
I think my husband has been somewhat depressed since I was diagnosed with truncal LE in 2009. More so lately since my arm became involved. He has been incredibly supportive through the chronic pain with implants and LE, but I think the long-term effect this has had on me and my change in attitude about going places, the heat, bug bites, all the things one worries about with LE, has effected him just as much. While I want to travel and do things, I get in sort of a panic mode beforehand. It happened before my recent trip to FL to take care of my mother. Having a somewhat unstable hand and arm had me extra worried about going to an extremely hot and humid place for a week, plus a day of travel on either end.
I don't have the . . . a bunch of reasons . . . to pick up the phone and call my friends who have never had BC or LE. They don't get it like you guys do - I really wish I could have a chat in person without having to type on this dang keypad. Takes much longer to compose and it isn't like a normal conversation. My husband understands more than anyone near us, but I really hate burdening him with my worries, especially when I get in panic mode. He sort of lost it before my last trip, saying, "What do you want me to do? Am I supposed to just listen to every detail of what you are doing and your concern about your arm?" I know the answer really is, no, he shouldn't have to. And it makes me feel I am not adequately coping with my LE. And then I feel so alone in all this.
Yet I know when someone asks about my medical background (last time was speaking with attorney in FL) and I only briefly recount the events of the past four years, their eyes almost pop out of their head. They always say I have had to deal with a lot. I know this, but I forget sometimes until I see that sort of reaction, even when they don't know a quarter of it. I know it's a cumulative effect, and even though I am actually doing so much better, pretty well in fact, despite the new arm and hand LE this year, I guess at times it is still hard living it day to day. And it is hard on my husband. I think he sort of thought things would eventually go back to normal. Well, I just don't think the possibility of the Old normal exists. I have given up on that and tried to create a new sense of normal and possibilities, and that makes me feel more optimistic.
Anyway, I did well physically and emotionally while away, but when I returned from FL my therapist said my measurements were up, which I could feel. So I have had five days at home, and tomorrow we leave to visit friends for a few days where the weather has been very hot and humid. I was starting to get a little panicky because our friends' home where we stay, after a 10 hr drive, gives me nowhere near the amount of control I am used to having to maintain my LE and sanity. I had more control in FL. So, I was obsessing out loud over this, just about the set up in the room where we sleep. My husband starts feeling overwhelmed and like he has to try and mediate and make sure everything goes as smoothly as possible. I told him he doesn't have to do a thing, that it isn't his job. I also tried to explain that this is a vacation I actually want to take, but it just brings up all my worse fears surrounding LE, and that combined with my lack of control makes me obsess. I said I will probably be fine once we get there, but I know that was a fib to make him feel better. It's been the worst environment always and I always flare. Going there with my arm and hand the way it is has me more freaked out than usual. It's my first summer with arm/hand LE, and my trunk is already unhappy like it gets in August.
I love my friends, but their housekeeping is not great. I have never passed judgment on them about this in all the years I've known them. I really don't care how they live and let it go when I visit, but the idea of trying to bring all my wrapping supplies and garments into this space makes me nuts. Besides that, there is very little space to put my personal products, etc, or feel like I don't have to live out of my suitcase. Then, to top it off, there is clutter, little bits of stuff covering every inch of space, which isn't that small. I just have to say that I am so far from being a clean freak, especially since my surgeries, so please know that I am not OCD. Whew!
If I were to say this directly to you guys in person, I probably could whittle it down to five sentences. There really is no answer. I just need reassurance and to know that I am not the only one who gets this way. Do I need to fine tune my coping skills?0 -
Tina - I have just started with the LE issue (only in my breast) but am already driving my hubby crazy... I don't want to stress him.. and now, as I said above, my granddaughter (11yrs) is coming for her one visit/year to see daddy and loves to do the things we did before dx.. I love amuzement rides - in this case the log ride - I am bouncing like a yo-yo trying to decide if I should or shouldn't - Again driving DH crazy trying to decide.. You aren't alone, I'm Sure - If you just want to hear a voice, I do have skype so if you PM me we can set up to chat...
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Tina -- I so get it with the hubby wanting the old normal back. As far as friends' guest room, could you afford to rent a motel room and just explain that you need your own space for medical reasons? That might give you a little more feeling of control....
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Tina my DH is my best supporter but his patience with me and 'my arm' wears thin sometimes. I am another one who sure can empathise with how you are feeling. I'd be happy to talk on the phone with you. PM me if you want to chat.
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Tina- I can definitely empathize with what you're going through. My DH has been wonderful but I know he was sooooo sick of hearing about BC, then my recon issues, then my revision issues and now my LE issues. I know he is thinking it is never ending and I'm sure misses the old me, too. I think, as women, we just need to talk about things to process and we've all had a lot to process so lots of talking. I try to fill that need by being on here a lot because, as you said, friends just don't get it. Mine started tuning out a long time ago and don't even attempt to understand LE. (One friend actually told me I was using it as an excuse to not attend her pilates class even after I explained I didn't have my sleeves yet.) So if it helps at all we all understand what you're dealing with and how much it changes our lives. It suddenly feels like nothing is easy any more and I miss that. I hope you can figure out something that works for you but still allows you to enjoy the time with your friends.
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Kate, you saying "nothing is easy any more and I miss that" NAILS it on the head!
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Tina, as Binney said, our LE limits them and they really, really want us to move on, and there's adjustments, but it doesn't just go away and there are considerations.
As Kate said brilliantly--"Nothing is easy anymore"
I find that absolutely no one else understands this, and even the best LE therapists kind of get it, but unless they experience it--and my LE therapist has some issues of her own--they don't fully understand the impact.
Also, it's mostly an invisible disease. Yes we wear garments and do exercises and maybe wrap, but my dh can't even really "see" it. Um, that's because I treat it.
It impacts what decisions I make about work, recreation, family obligations--it just loams large.
I just signed a contract on a very part time job, and a lot of my decision making had to do with the LE and the recent cellulitis, making me feel vulnerable.
I find I turn to my dh for reassurance, but he "times out"--like when I had the cellulitis, he thought I was over-reacting about a hot red spot on my arm, and nothing I could say would convince him otherwise--and he's health care person--a dentist and treats infections....
When I took the STAR oncology rehab course, it was more hype than solid learning, one of the points they made is that many cancer survivors have PTSD, far more than depression.
LE, for me, breeds anxiety. And anger and frustration, and I just wish I never, ever had to factor it into my decisions, but I do.
The first year it showed up, we were at a friend's child's graduation party, at dusk, in the woods and I was crying in the house that I wanted to go home, because the place was full of bugs. Luckily, some other people came inside.
I had written before that my dh's response the the cellulitis, which showed up after a day in the sun was "Great, now add going in the sun to the list of things you won't do anymore." It shrinks their life.
Tina, you have every right to do what you feel most comfortable with on this trip. If you can make a safe space for yourself in your friends' house, fine, and I do understand the desire not to force a confrontation.
We get it, and we care, and we all want LE to take it's proper place in our life: a minor annoyance that has to be dealt with, but it sure has the tendency to take over. At least in my experience. And yes, my LE arm is smaller than my good arm. But that doesn't matter. Binney goes nuts when people say to her "But you LOOK normal...."
So do diabetics.
Rant away, we're here.
Kira
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GROUP HUG!! I know just how you feel. I have only just started on this LE portion and my husband is already showing signs of wanting the old "me" back. The one who would get excited to go with friends to a classic car show (outdoors) or go with our daughter to a theme park or be excited to go out on the boat for the day. None of those things sound fun to me anymore knowing that the heat will blow me up like a balloon and the sleeve and glove will probably give me heat stroke.
I am doing my best to adjust to this New Normal but must say it is not easy. We have all earned the right to B&^%h and whine but that must take it's toll on our loved ones. My husband has been able to get away for a guys vaca a couple of times and I have been out with my gal pals and have a trip planned in October.
We are all together in this and I hope that you all (and me) can find some relief from this dreadful "secret" part of BC
Maggie
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Tina - I agree with the above comment about getting a hotel room. We so get it. If you need coping skills I need a PhD in coping skills. I think you're ok and I wish I was 'coping' as well as you. But that being said, it sure doesn't make it easier and I know that. (((((((((hugs)))))))))
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GRRRRRR our AC has decided not to work and of course the first thought is what about my LE??? Hope I do know swell during the heat. The repair man just got here so hopefully I will be cool again soon.
Maggie
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Wow. I am very lucky. My mother worries about my arm more than I do. I don't have a husband, which in other respects puts me at a bit of a disadvantage. However, it they want to get irritable because we are not able to do the same things we were once able to do, then I guess I have an advantage not having a special headuphisass someone.
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Tina, This is truly so hard! My DH does best with any kind of problem when it's obvious to him how to fix it. LE is a very difficult 'problem' for our DHs to evaluate and fix, because even if they do see swelling, they cannot relate to the sensations that accompany the visual. Everyone has had a swollen ankle or other swollen body part in their life, and to someone without LE, that prior experience sets them up to think it's transient and quite innocuous. It's not their fault...I would minimize the implication of a compression sleeve or a wrapped arm if I did not have LE and had not experienced how it feels. They cannot put themselves in our place, and based soley on visual cues, they don't have adequate information about how LE changes our lives. They only know that we talk about it constantly (because it's front and center for us!) and they don't have a 'fix.' Frustration all around, and that breeds impatience.
So...my thought is to try to sit him down and explain how your LE feels, not just how it looks. And let him know that there's no solution, just management of an uncomfortable condition, so he's off the hook on providing answers. And tell him that a hug does not solve the problem, but it does make you feel better about having that problem.
Hugs coming your way...
Carol
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It's crazy isn't it. It has changed my plans for my retirement, my hobbies, my recreation, everything.
I wore the sleeve last night, it was too hot to cover it, and there was 2 people I didn't know and it was the center of attention.
I miss being noticed for being attractive or smart or even having big boobs. Now I am noticed for the freaky tube sock on my arm.
I don't fit in Lymphedivas, but I am not sure I even want to be blinged out and have the attention.
I do now have a bunch of Kmart coverups , and if I wear it a few sizes up I can actually cover the glove.
Tina if a hotel is possible, go for it. It's a vacation!!!
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So much has been said that is all too true. Kate said it right, simplicity in day to day life does kind of hit the skids with LE. And if a person has any tendencey toward anxiety at all, LE is especially good at pushing one's buttons. It is hard to feel that we deal with so many daily impediments and then have to validate our condition, or somehow FAIL to validate our condition to close friends and family. When I recently had to cancel a trip at last minute due to a severe burn and cellulitis----not one member of my family cntacted me to even find out how I was. A friend told me" I bet they do not believe in it"... The LE, the severity of the condition...So, I sent a photo of the hole in my hand with cellulitis to VALIDATE myself and instantly regretted it. I think one has to turn a corner and decide that with LE we have to trust ourselves and only confide in those that know and understand our day to day issues. It is unfortunate, but it may be true in any case. I just feel lucky to have all of you because I know on a gut level----we experience the same things on different days----and you all seem so great.
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Oh, gosh, I have been running around like crazy all day since I posted. Finally done, and here I see all these thoughtful posts. It brings me to tears to know you understand how I feel. I am not alone at all. We are just miles apart.
When we drove home from FL in 2009 and I was having the second big flare, I just lost it. I was sitting in the passenger seat, the sun blazing on me and no A/C could get me out of there!! I was swelling and finally put the seat back and tried to rest and calm down. My husband put on a Beach Boys greatest hits CD for some reason, and I was gone, sobbing. The music reminded me of my youth, the years when, yes, everything was so easy. I knew right then that nothing would ever be the same. Just like what you said, Kate. I have figured out how to compensate, different choices I can make, and most of the time I can cope. But it's times like these when there is no way out that it makes me sad, fearful, and panicky.
I brought up the hotel idea a couple of years ago, and my husband was so upset. This is a traditional trip we make to get together with his best friend and wife. They are my dearest friends, too. Honestly, this is one of the few things he feels strongly about. I know it really matters to him, because he caves pretty much on everything else when it is important to me. If I raised a big fuss, he would do it, but I just can't. I can't take away HIS last feeling of being carefree . . . Do you know what I mean? I can't take it all away. He's such a good man. And I really don't want to give it up either. After all these years we still visit, hang out and cook, talk about all kinds of things, listen to music. They are the friends I love most and want to spend time with.
I told my husband I am going to call them tomorrow during our drive down (we are taking two days) and just explain I have all these medical supplies and need some room to put things. Would they please clear the tabletops in the bedroom so I don't have to leave things packed and can find things easily. I think it's better if I ask now before we get there. They'll know that while straightening the room and it won't be a big deal. So that's my plan.
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Tina, you've got a great head on your shoulders. I suspect your friends will be more than happy to accomodate your simple request. Taking two days to get there is smart too.
Cookie, sigh, a similar thing happened to me too. (In fact several times these past weeks.) These summer months when it's too hot to cover it seems like we're all coming 'out of the closet' and no wonder I intend to go back in when the weather cools down. It's just easier than constantly explaining.
The next couple of weeks are going to be scorchers here. GRRRRR.
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HELP!!!! - I woke up this morning to a quarter size bite? about 3 inches below my LE breast - I put some hydrocortisone cream on it... what else should I do... What the hell bit me???? I am trying not to panic....
edit: is there any special signs of trouble I should be watching for? I am feeling like such a Newbie right now
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Geez, what an unpleasant thing to wake up to Gma. Is it really red, sore or hot? For the moment I would draw a line around it and keep an eye on it until someone comes along here who can tell you what to do. If it is or does become red, sore or hot I'd be thinking a trip to your Dr. I haven't read back, have you had cellulitis?
It could be a spider bite maybe?
I hope it turns out to be nothing taumatic.
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Thanks Marple - No, I haven't had cellulitis..I had a swollen, painful breast for about a year, That is when I put my foot down and asked to go to a LE therapist for an eval.. Just found out 3 weeks ago that I do have LE of the breast (not in arm even though there is swelling into the armpit)....think it is a bug bite.. it was red, sore and hot when I woke up but after putting on the cortisone cream it seems to be going down. As I said, I am so new to this... Even if it goes down, I still should watch it because the heat of the day can cause issues? is that correct? I just hear all these stories and get overwhelmed with what is in my future... I live in Oregon, and weather has been rain rain rain.. but the heat has started this week, so I am now concerned more than ever... I still pray for you all that live in hotter areas than here.. I don't know how you do it
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Gma, I don't want to alarm you (reading that you just KNOW I'm going to) but you want to be very careful this doesn't turn in to cellulitis. Drink lots and try to take it easy today if that's possible. I'm leaning a little toward at least calling your Dr. If it gets bigger it's almost definitely time for a trip to the ER. UGH!!! Not the words any of us want to read.
Hopefully Binney and/or Kira will be along shortly with better advice.
Yes, stay physcially cool if you can.
Edit to add this link~ http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm
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Hi Everybody,I am new to this charming side effect, and have been reading both this forum and Su-So with great gratitude that you have collected such a wealth of valuable knowledge in one place. Thank you so much!Right now, I am fairly sure that I have LE. My PT and RO are concerned, but hopeful that it is rads-induced inflammation. I have quite a few risk factors: Mastectomy, 17 nodes removed; currently at 21 of 25 rads treatments that include the supracavicular nodes. I did not have a baseline measurement taken prior to my late December surgery b/c nobody told me to (although apparently other surgeons at this center do so--why this isn't standard protocol is a head scratcher.) I started treatment for cording in April, my PT did take measurements. She is locally renowned for cording and post BC care; She has decades of experience, and I really like her. That said, she does not have any LE certification.At any rate, my measurements are actually down, except the upper forearm, which is up slightly. (Although from reading here, I have discovered that measurements aren't exactly foolproof as a diagnostic tool.) To be on the safe side, we ordered a gauntlet and sleeve for use during exercise, work, etc. They are Juzos, 20-30 mmHp. Sleeve is model 2001, gauntlet is 1101. They arrived last Friday, and after about 45 minutes of wear I noticed that my hand had swollen quite a bit. There was no swelling in my hand at all prior to this. I think the extra compression at the overlapping part didn't help, as I had deep grooves there when I removed the garments. The swelling in the hand went down, but has not completely disappeared.I am now very leery of wearing the garments. I see my PT on Thursday, and in the meantime have a couple questions.I think this could be the rebound swelling somebody reference previously. Is there a way to tell? I don't want them to go for more compression, when less would be the solution.Would wearing the gauntlet without the sleeve help get the fluid out of the hand?I have also scheduled an evaluation with a local LE clinic. Both PTs are LANA-certified. My RO thinks I'm obsessing too much about the certification thing, but I'm not so sure. Overkill?0
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When I think about what my life was, and what it is now, I am filled with profound sadness. I have faced chronic medical/physical challenges all of my life, but LE and (at this point thankfully mild) RIBP are different and far more challenging. Even though to an outsider, my disability probably seems worse than the LE/RIBP, because my disability is from birth, I don't feel a sense of loss: it is just who I am, whereas LE/RIBP has taken "me" away from me. I never mourned the fact that other people could run marathons, because they couldn't run 1/2 marathons on crutches. But some mornings when I head out for my walk, I ache for the freedom and speed of running on crutches.
Similarly, for my husband and kids, my disability is just part of what makes me me, whereas the LE/RIBP has robbed them of part of me. Any one thing is trivial, and my family is amazingly tolerant and adaptive, but the things add up and the compromises become oppressive. It's going to be hot, so maybe instead of going to the all day July 4th celebration, we just watch the fireworks from the house. Sorry, can't go raspberry picking ... need to keep my hand bandaged today, but you go and we'll make a dessert of them. Sure Chinese takeout and a movie sounds great, but I'll just make something for myself. I'm having a bad hand day -- I'll fix your shirt tomorrow.
The day-to-day variability is maddening, as is deciding whether to do something "risky", knowing that doing so may cause a flare. Then there is the fear of long term progression: even as my family and I struggle to cope with current issues, in dark moments, I worry about what the future will bring, and whether my actions today will speed or retard progression. KS
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