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

cookiegal · July 2012

@Binney, interesting thought...but it's very much right where the sun would hit on the front of the arm....and it feels like a sunburn (more raised than swollen per se). I really don't wear the black if I am going to be in the sun.

I actually find the black hold the compression longer than the beige, the Juzo silver seems to be even less firm.

I'll be honest since I don't have time to wear sleeves everyday, I wear the old and the new, even though my new ones are a bit smaller at the top.

Such a freakin pain.

3jaysmom · July 2012

i've been "out of commission "
for awhile, and boy, have i missed you!!!

i got a raging uti; and in the midst of txing it, we discovered a sever, and i do mean severe allergy to almost any gel they use for the exam of the "lady parts" swelled like a baloon.. so mething i've NEVER had.. so, got the uti better, the yeast thingy better.ckup today, and we're off to the races.. the dr just says ou "can't" be allergic!!.. gonna SEE for himself tommorrow.. the 1st was over the 4th, so, did it myself with baths to soothe it.

now, they think cellulitis is involed.. why am I not surprised!

i see all of you are dealing with the nincompoop answers we get; and the frustration we feel.. there IS no answers, just "accomadating" the le.. im used to that, with ms, but this is just sooo much. mostly just the boobs people are.

i refuse to let anyone, in any situation make me feel embarrassed, whatever. i wear my sleeves, and gloves.. if they are uncomfortable, they'll have to invest in a therapist. i did, and im not theirs... but, i have no opinions.. RIGHT!!!missed you all from my sitz bath......3jays

ohio4me · July 2012

@Dawn - it does feel good to take a stand for yourself and aggravating at the same time. Sometimes I get in a funk and let myself become a victim to LE then I get on these discussions and get motivated to be the one in control of LE. Nice job in the theatre putting yourself first. If it's a good movie it will be around.

I'm still on the road for work but the temp is about 20 degrees cooler than it was last week (at home). Little Martha is happy - did Lebed to start my day now off to work. In meetings with two co-workers and they don't mind when I move and stretch my arm all day. I feel conspicuous but they are understanding.

Marple · July 2012

3jays, your last paragraph is one for the archives. VERY well said!!

kira66715 · July 2012

Teka, the Belisse was developed by Lesli Bell PT, from Vermont, and at my CLT course the instructor said it was "unethically expensive": here is a page on Lesli and I would think if you contact her, she might be helpful

http://www.timberlanept.com/About-Us/Lesli-R-Bell/a~2479--c~335561/article.html

Here's the Belisse home page:

http://www.bellisse.com/

I have ordered custom Juzo gloves from the same fitter for 4 years and the quality and fit vary with each order. Unfortunately, my fitter just quit her job, so the next set, who knows??? I emailed her, but no response.

Kira

Teka · July 2012

kira,

Thank You!!

I feel sorry for a self-pay patient who purchases a bra. Frown

GmaFoley · July 2012

Teka - I'm one of those self-pay patients.. but My LE therapist has tried other alternatives first - I have a champion sports bra ($16) and two jovipak circle pads that I use and it has helped with my breast and rib swelling.. I dread the idea of ever having to buy a beliese bra.. I have a Expand-a-band compression bra on order for night time - it, of course, is back ordered - total with shipping is $56 - I am hoping these less expensive options help. If not, Belise here I come... "Big Honey-don't" is doing better after LE therapy yesterday - DH is seeing a difference..

Speaking of DH - Since my dx of truncal lymphedema - he has been moody and standoffish - more than normal.. I don't know if it is just a coincidence with bill day or work or what... I am getting depressed because he doesn't want to talk about it.. I know our off schedules doesn't help matters but when we have time together - he decides he has work or he goes and plays on his computer... Can't get him to talk to our pastor or anything.. not sure what to do.. If I force it, it just gets worse and if I start crying (which I am now, just thinking about it) it only makes things even worse...I think he might be mad that I have to work 46 hours and HE can't support the both of us, like he did for 34 years of our marriage.. The last 3, even through tx I have had to work.

Stanzie · July 2012

You all have been so very sweet and kind and thoughtful!! I'm finally doing better - seems that when the bee sting went from my hand thru my wrist it somehow twisted my nerves like when children twist another child's arm with both hands in opposite directions but mine lasted 36 hours! It really was pretty horrendous! But things have finally gone down and the meds have worked and things are back to "normal" whatever that really means. Anyway, I'm so thankful and appreciative to you all for your help and information. I now know how terribly painful swelling can be and this is just not right that doctors do not take this into consideration when they operate. Having the lat surgery I've learned it all sets me up for LE so I just want to say how much I apprecate all your help for each other.

KittyDog · July 2012

So sorry 3jaysmom. It seems like I have seen you post on the arimidex post??? I read an article recently that said it can cause us to be more allergic to stuff. Wish I had bookmarked it but I didn't. It sure would explain my itchies I can't figure out. I still have no idea what broke me out in hives the end of May...I am beginning to think I am allergic to my shampoo but I need more time to figure that one out. Unfortunately..it seems I am slightly allergic to my new puppy but she's not going anywhere and I know my body will get use to her soon. She is so cute but teething horribily. I am so scared she is going to tear my garments up so I am not wearing them as much right now.

I must have done something right the other night because I lived in the bathroom. I measured my leg last night and despite me thinking it looks horrible it is only up 2 inches in a few spots...when I started it was four inches.

I saw a gastro. Dr. yesterday. yeah me not only will I have to have the EGD, he said he wanted to go ahead and do the colonoscopy at the same time. I have to find the money first since this is not a place I can throw it on my hospital bill. Anyway when I first went in the nurse took my blood pressure and wanted to take it again in the other arm...to which I immediately said she couldn't because of the LE. Well between the time I saw the Dr. she must have investigated LE because I was told three days before procedure over hydrate to make up for the fluid loss that would occur during the prep work and hopefully we want have any problems with the LE.

The good news...we should have AC sometime this week. awwwwwwwwww relief from the heat soon.

foreverhopeful · July 2012

I had a lymph node transfer from my neck and was told that there was a zero perent chance of neck lymphedema. Now I understand that isn't the case. Does anyone know of preventitive measures to cause me from developing neck lymphedema, just like no blood pressure etc., for the arms?

ohio4me · July 2012

How many of you had an LD and suffer from increased LE or truncal LE as a result?

I saw my PS and he is recommending a LD on the affected side followed by TE and then implants. I had an MX and radiation, I'm Stage IIIc, had 15 nodes removed (14 positive), already fight low grade LE in affected arm. The plan right now is Left MX with TE followed by Right LD and TE then implants in the future. I like my PS but I'm wondering if patients ever return to him with LE so I'm wondering if he knows how many of patients really have increase LE after LD surgery.

Right now - my thought is to go for the Left MX and leave it at that. I can wear poofy boobs that are light weight. I am 58 which is not the end of life but I have more days behind me than I do ahead of me and I'm high risk for reoccurrence. I am thinking the risks of LE and potential complications due to radiation outweigh having a perky fake boob.

Add to that I just don't want the fuss of time off work, then work restrictions (an annoyance for me and my employer), then re-gaining strength, then, then, then. I think I need one more surgery (Left MX) and call it done. It feels like LE is controlling my life but I'm thinking it will only get worse if I don't just stop the madness.

Thoughts, anyone?

Rocket · July 2012

Hi Ohio, I don't have an answer for what you should do, but will tell you what I have done. I suffer from truncal LE after a BMX as well as arm LE on the side where I had thirteen lymph nodes removed. I am 51 years old, was 49 at time of DX, and had both chemo and rads. I seriously considered having recon to both sides, but then decided against it as the truncal LE that I already suffer with is painful enough. Even after my hysterectomy, my truncal LE flared quite a bit. I've endured five different surgeries for various things in less than two years and will need another on my right foot in December of this year. For me, the decision to strap on fake boobs when I go out and wear none while at home was much easier than contemplating more surgery and healing time. I hope for success for you regardless of your decision.

Binney4 · July 2012

ohio, have you checked out Barbara/"Erica"'s website about living breast-free? It has lots of pictures, resources, product recommendations, patient stories. Really a helpful site. It's here:
http://www.breastfree.org

So hard to make these decisions! Frown Keep us posted as you move forward.

Gentle hugs,
Binney

GmaFoley · July 2012

Stanzie - Nice to see you are better - We were all worried about you last week.... A little encouragement, a call to the doc and a little prayer got you through. That is what we are here for.

Ohio - I just had a lumpectomy and margin clearing (nipple had to be removed). So I am no help with your decision.. but you know your body and what it can endure... We are here for you whatever you decide.. I know at this moment, at 57 years old, if the cancer comes back, I will have a BMX with no reconstruction... Funny thing, when I talked to my surgeon last and telling him of the pain I endured over this year (before he finally gave me script to see LE therapist) he suggested a MX as another way to get rid of the pain!! - a little drastic but in as much pain as this breast LE has caused me, I actually thought about it.. Undecided .. Now that I know it is LE - not sure it would do any good to take it off.. the LE would still probably be there, wouldn't it?

Binney4 · July 2012

Exactly, Gma. Removing the breast doesn't fix the source of the problem, so you would most likely just continue to have pain and swelling. What I love about LE treatment is that is doesn't involve either surgery or drugs. Unfortunately, that is also why it is under-funded and not well understood. Undecided

Hugs,
Binney

GmaFoley · July 2012

Binney - the breast LE is forever too isn't it? I think I have just realized this is for life Frown

My LE therapist is thinking of switching me to every other week, or once a week... I'm not sure I'm ready - but he knows I have no insurance to pay for this and he is trying to save me money.. I am still thinking at least once a week until I find out about financial aid. I have been looking at the videos for self-MLD - most of them are more for arm LE - any that focus more on truncal.. I am thinking your paint roller might be the only way I will get the back as my husband just doesn't understand -"soft touch".. Sorry, Kind of a down day for me... Cry I've been having alot of those lately.

Binney4 · July 2012

Gma, it gets easier. Eventually you discover the routine that works for you to keep it in good control, you find the garments that keep you the most comfortable, and you get your life back. Smile Yes, to trying the paint roller. Maybe even take it with you and ask your therapist to help you work out the best way to use it.

Had to laugh about your DH's lack of a "soft touch." Mine's the same way, means well but has a lot of trouble believing "gentle" will do any good. They just want to fix that sucker! Gotta love 'em!

But then you also gotta figure out a way to do your own back... Undecided

Hang in there, Gma! We're all in this together!
Binney

GmaFoley · July 2012

Binney, Got to go find a paint roller today before my appt I guess. I think I will only be going once a week here on out.. I know the LE therapist has great confidence in my ability - I sound very knowledgeable when I talk to him.. but I'm not that confident in what I am doing.

BeckySharp · July 2012

Gma--I have done a lot of reading and have become knowledgeable about LE--even work with a support group. But when it is MY LE the knowledge seems to go out the window. My therapist gently tells me "you know what to do" when I panic and lose my confidence. The arm LE has not been a big problem for me but the truncal is driving me crazy! I know what you mean.

GmaFoley · July 2012

Thank you for encouraging me. I just got back from my LE T appointment.. He measured me again today and my elbow and mid forearm was more swollen... the upper arm stayed the same.. My wrist and hand was fine... And Becky and Jo - you are right - my breast was swollen when I went in but pain level is down this evening...

The fans are on and my office is still 80 degrees as we speak... We have a little mini air conditioner we use for bedtime in our room..

Binney was it you that was talking the "candy bar" not the kind you eat - My LE T made me 2 to take home and try :-) he is so nice... Talked to him about which way to use the paint roller - he thought it was an awesome idea! Especially when DH is too rough..

nibbana · July 2012

Well hell,

Thought my left arm swelled up two weeks ago. Since then, I have not been able to recreate the conditions to cause any swelling. I'm thinking, "Now my therapist won't believe me." This evening, I was putting together a barbell and my left hand is swollen between my pinkie and ring finger.

Welcome to the wonderful world of lymphedema.

Estel · July 2012

nibbana - when mine first started it came and went. I was embarrased when I first saw my therapist because my fingers were so skinny. But over a period of weeks, she saw and understood. I'm so so sorry you're here. There is no better place for LE wisdom, knowledge and support than the ladies here.

carol57 · July 2012

Ohio, I'm behind in my bco reading, so I'm skimming a bit. Regarding your question about an LD reconstruction and LE risk, did anyone suggest asking your LE therapist's opinion? One microsurgeon, Dr. Marga Massey, says she is not in favor of the LD flap because the muscle is being rotated around the trunk from back to front, and of necessity it plows through the lymphatic vessels along the way. Not her words; I'm paraphrasing. Dr. M specializes in free-flap recons and is not a fan of any of the pedicled flaps. It's probably worth thinking about, and were it me, I'd chat with an LE expert about that question of moving the flap through your lymphatics in and around the axilla.

Have you been able to spend any time in the recon forum to read the many, many perspectives on recon options?

Carol

carol57 · July 2012

Nibbana, are you handling that barbell in a sleeve with glove or gauntlet? And barbell in July after a May bmx--that's a very fast return to some hefty weights. I'm guessing you were lifting routinely for your fitness program pre-surgery, so 'hefty' may sound exaggerated to you, but the weight lifting-and-LE research points pretty clearly to a strategy of post-surgery re-start using very light weights (silly 1-lb dumbbells) and then moving up slowly but steadily until you are where you were before the surgery. Ultimately, no upper limit, so long as you add slowly and monitor your LE responses throughout, backing off for a time if you do swell or tingle after lifting.

It's natural to want to get back to life as we knew it, but I'd hate to think you might be setting yourself up for LE pushback that you might avoid or minimize by slowing the pace of your return to lifting.

Anyway, best of luck--I hope your therapist accepts what you tell her, in addition to what she can see, because she should know that LE symptoms change constantly. Someone once said we'd all have earlier LE diagnoses if our surgeons would have consults at 7 pm, when we're swollen, instead of in the morning when they have office hours!

Carol

ohio4me · July 2012

Carol - I did surf through the recon forums and plan to spend some more time there. I got to Dr. Massey's website a few days ago. She confirmed my wariness about the LD. My gut just doesn't like the idea.

I just found an LE therapist in my area and meet with her on Monday. She is not CLT but attended the courses and learned Vodder. She is a sister to a friend of my sister. I talked to the therapist first time yesterday and she was very up front and honest about not being CLT. She is a massage therapist and learned about LE to care for her mother. I'm hoping she is good and plan to ask her opinion just not sure about the difference in knowledge between massage therapy and physical therapy and how that plays into LE training/knowledge. Time will tell. (It's sort of like the difference between an orthopedist and podiatrist .

I am leaning towards going with my gut feelings and not doing the LD and reconstruction. I have plenty of time to decide. Surgery won't be until end of August or early September. It will give me time to figure out if my decision is based on doing the right thing for the long term or if I'm just looking for a way to get all this behind me. It may be a bit of both but I have time to get comfortable with whatever I decide.

Thanks for information. The LE train is definitely a bumpy ride with little warning of what lies ahead.

carol57 · July 2012

Ohio, So many cosiderations and decisions! Gut feelings count a lot, in my book. Mine sent me straight to recon. I'm not sure why. I had LCIS, in both breasts, and even though I'm BRCA negative, my family history --mom, grandmother, aunts--propelled me instantly to decide on bmx. The reason for that part of my instinct is crystal clear to me. I'm not so sure why it was also an instant decision to do recon, because at 57 they're hardly essential equipment and my wonderful DH would support me in whatever direction I chose. Yet I never wavered, although it took some research to decide on which recon option felt best for me. I had bilateral diep, and it was anticipating that long surgery that propelled me right into the gym (after about oh...ten years off for bad behavior!) to try to get stronger in the 11 weeks I had before surgery. That's probably a big reason my recovery was pretty darn easy, and I am so very glad I went that route. One very good thing is that we all have the choice of immediate vs. delayed recon, so if you're unsure, you can always give yourself more time to decide on the recon part of the process.

On your therapist 'find,' I think some of the women here are working with wonderful therapists who have the same background as yours. Maybe one of them will chime in on her experience.

Keep us posted on what you learn about recon/LE risks. There may have been a study on that and I'll try to poke through my enormous study pile to see if I have it somewhere.

Carol

GmaFoley · July 2012

OH GOD HELP ME!!! I can't live like this - I hurt everywhere this morning - no fever just feel like crap - my "Precautionary" sleeve I wear for work hurts, my boob hurts, my ribs hurt... What the hell did I do over night to feel so bad this morning!!!!@#$@$@- Sorry, just had to scream somewhere - I can't do it outloud - DH is still sleeping..

duckyb1 · July 2012

GMA..........oh girl I feel so bad for you, but "get it"............I always say "some days are diamonds, some days are stone"............if that is true, then why do I always end up in the "rock pile".......................I think to myself each and every morning upon waking, and each and every night going to sleep.........................Will I ever feel like myself again........................I truely doubt it.................

Whenever some "ass" says to me..........'you look wonderful..............you look great...........I say to myself...........really, really, well either you never saw me when I looked "really good", or you never saw me at all..".............................please don't tell me how great I look..................they have no idea what we are dealing with on the inside..............just the thought that we never know for sure what tomorrow will bring is bad enough, then they add on treatments, medicine that destroys the body..........loss of QOL.............so please don't tell me how "wonderful I look"...............walk in my shoes for a while.......you won't make it to your front door.............

Sorry, but I know how you feel, and my heart goes out to you.............I have threatened to go off my Femara, just to feel like myself "one more time"...............really, what kind of a life do we have living each day in "pain" of some kind................after a while......no one wants to hear you, so you shut your mouth and deal with it................and you feel so alone.........................but we're here for you, and we all "do understand" w;hen no one else does.......................I'll say an extra prayer for you tonight, so maybe tomorrow will be better......God I hope so..............hugs my friend

duckyb1 · July 2012

GMA..........oh girl I feel so bad for you, but "get it"............I always say "some days are diamonds, some days are stone"............if that is true, then why do I always end up in the "rock pile".......................I think to myself each and every morning upon waking, and each and every night going to sleep.........................Will I ever feel like myself again........................I truely doubt it.................

Whenever some "ass" says to me..........'you look wonderful..............you look great...........I say to myself...........really, really, well either you never saw me when I looked "really good", or you never saw me at all..".............................please don't tell me how great I look..................they have no idea what we are dealing with on the inside..............just the thought that we never know for sure what tomorrow will bring is bad enough, then they add on treatments, medicine that destroys the body..........loss of QOL.............so please don't tell me how "wonderful I look"...............walk in my shoes for a while.......you won't make it to your front door.............

Sorry, but I know how you feel, and my heart goes out to you.............I have threatened to go off my Femara, just to feel like myself "one more time"...............really, what kind of a life do we have living each day in "pain" of some kind................after a while......no one wants to hear you, so you shut your mouth and deal with it................and you feel so alone.........................but we're here for you, and we all "do understand" w;hen no one else does.......................I'll say an extra prayer for you tonight, so maybe tomorrow will be better......God I hope so..............hugs my friend

duckyb1 · July 2012

GMA...........my trigger finger (thanks Femara), sent the message a second time.............

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

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