Breast Cancer Topic: Why does this have to be so hard?

fancy2 Fenton, MI Joined: Apr 2006 Posts: 1,215

Mar 7, 2007 05:23 AM fancy2 wrote:

You have my complete sympathy, sister. It seems that hospitals, supposedly the source of caring and compassion, are a pit when you have a special problem.

However, I'm not clear why you cannot have blood drawn from EITHER arm. My onc tells me that the mast/recon doesn't disqualify an arm. If you had a SNB only, my onc would tell you to go ahead and use that arm. Do you actually HAVE le, or are you just afraid of getting it? Needles freak me out, but I'm told that a foot draw is much harder to do as well as more painful. Given the fact that most "nurses" aren't very good at drawing blood anyhow, I can understand their reluctance to use a foot. Probably most of them don't even know you CAN use a foot for a blood draw.

Binney4 Joined: Aug 2004 Posts: 8,374

Mar 7, 2007 05:31 PM Binney4 wrote:

Anna, I'm so sorry. You really have had a struggle with this and it does feel so stupidly uncaring, even if it's really an education problem rather than sheer stubbornness or worse. All I can say is, HANG IN THERE! I too have to drive clear to the moon for foot draws. And while in a sense I agree it's worth it, it's still makes me mad. We drive past a dozen hospitals and labs on the way...

Fancy, welcome! I have to say I always enjoy your posts because they're so upbeat and can-do. Love it! As to your question, perhaps your onc is not aware of the newer studies that have found that, while the SNB does reduce the risk of lymphedema somewhat, it has not reduced it as much as was hoped. The hope was that the SNB would reduce the risk to about 1 percent, but that has not happened. Overall, around 1/3 of us BC veterans now doing treatment will eventually develop LE, while for those with SNB and rads the figures are closer to 20 percent for arm LE and 28 percent for chest/breast LE. What they're theorizing is that there might be some predisposing genetic factors as well as simple unknowns that are driving these unfortunate figures. So, while Anna does not yet have LE, she's trying to follow the recommendations of the National Lymphedema Network for reducing her risk. Because the risk continues for the remainder of our lives, and some activities, even if they don't produce LE the first time (or first hundred times) contribute to an accumulating LE risk.

All of which is why it sometimes seems that some people can do handsprings for a living and "never" (or at least not yet) have LE problems, while another sister may be reasonably careful, have no special risk factors for LE, and still find her arm puffing up.

It boils down to each of us making our own compromises with the risks we face, just like we did with our BC treatment choices--a very personal matter, no single correct answer for everyone. I only wish that every sister had straight information about LE to make their choices from. Otherwise it's just a crap shoot, and that's not good medicine.

The good news is that one of the reasons so many of us can expect to develop LE is that we're all surviving BC longer!

Hmmm. Guess I'm grasping at straws here...

Let me try that again: the good news is that LE treatment is available to control both the swelling and the associated infection risk, and the sooner it's started the better the outcome.

There! Better?

Anna, onward!

Binney

AnnaM Brittany, France Joined: Oct 2005 Posts: 1,948

Mar 8, 2007 07:04 AM AnnaM wrote:

Thank you both, Fancy and Binney, for your responses.

Fancy, I have actually had one LE episode, namely, swelling in both arms and along trunk. It happened after some silly cleaning I did and I no longer clean any more than I absolutely have to! I have been doing the MDL faithfully ever since I learned it. I have also been careful about wearing my compression garments when traveling by air.

Binney, I will carry on. It just helps to know I have sisters out there.

Anna

phillygirl Joined: Mar 2007 Posts: 21

Mar 15, 2007 07:25 PM phillygirl wrote:

I have had lymphedema since for about six years now. My surgery was in 1996. I didn't have a mastectomy, just lymph nodes removed really deep because even though my tumor was only first stage, it was "undiferentiated," which means it was funny looking and they didn't know why!

Anyway, one summer I got cellulitis and it kicked off the lympehdema. I asked my doctor the year before why the left arm seemed to be a little bigger than the other, and he said "oh, that's normal." I am so mad that he didn't tell me then that was probably getting lympehedma.

I have had therapy three times, have day sleeves and night sleeves, but just can't deal with wearing them, especially all day. I just can't adjust to them so I just don't wear them. I can't deal with the daily exercise and massaage they want me to do, and my insurance companies keep denying me coverage for a pump. I need the one that also takes care of the chest wall.

This week, my arm starting hurting so I went back to my exercise and massage and sleeves, but it's responding very well. I know I should be doing the massage and exercise and wearing the sleeve, but it's just so overwhelming! And no one I talk to seems to know anything about medications for lympedema.

I know I must seem to be whining, but I just can't make myself do these things and have no support even tho I live, literally, in Fox Chase Cancer Center's backyard. I don't even have to cross the street! The therapy people are very good there, but once therapy is over, it's up to me and I fail every time. I get to the point where I sometimes wish they had just let me die because this will last forever. At least the cancer went away.

I really need some help.

badboob67 Joined: Jan 2007 Posts: 3,270

Mar 15, 2007 08:29 PM badboob67 wrote:

Phillygirl,
I am so sorry you are going through this! I just recently began dealing with LYMPHEDEMA this February--a year after my diagnosis and MASTECTOMY. It is definitely not a cakewalk! I fully understand your feelings.

I was diagnosed with extensive BONE METS at the same time my cancer was found. Of course, I deal with that every day but LYMPHEDEMA has been much harder for me to accept and deal with. It is just so discouraging. My METS cause me pain and I have limitations because of spinal fractures, but the impact on my day to day living is felt much less than going through therapy and maintence of the LYMPHEDEMA.

From what I understand, there really aren't medications for LYMPHEDEMA. A DIURETIC is something you should absolutely avoid because it can actually make LE worse. The standard of care involves massage, compression, skin care, and prevention. Pumps sometimes can do more harm than good. I do understand that SWIMMING is good for LE; it provides light compression to your entire body!

I have tried to figure out how to integrate LE care into my daily routine. It's time consuming and uncomfortable much of the time, but I hope to eventually view it as I do other personal care routines like brushing my teeth, applying makeup, and fixing my hair.

You are NOT whining! You are expressing what appears to be a common response to being diagnosed with LE. Yes, you will have LE forever and you really need to try to find a way to take care of yourself in this regard. I'm sure you understand that LE can continue to progress if it is left untreated. I am so sorry that you feel as though you have failed.

What can I do to help, Phillygirl? Another dear poster on this site sent me a great book on LE just this week. It has helped me a lot because my therapist, although certified, has made a few mistakes with me. I would be happy to share whatever information I have. One particularly helpful portion of the book deals with massage. I could try to send you copies of the images and text if you would like.

I do understand how daunting this whole process of self-care can be. I would much rather direct my energies to more enjoyable pursuits! I really don't know how to motivate you in that regard because it's also very difficult for me.

Please let me know if I can do something to support you. I am so sorry you are hurting this way!

Binney4 Joined: Aug 2004 Posts: 8,374

Mar 15, 2007 08:38 PM Binney4 wrote:

Hi, Phillygirl, and welcome! I'm so glad you found us. I hear your pain, and I'm so sorry you're dealing with all this. It sounds like you have chest LE as well as arm LE, right? That's a lot to deal with!

Sharing your grief with us is by no means "whining"! All of us come here to vent from time to time because this is not simple and, as you say, it doesn't go away.

You certainly do know a lot about caring for your LE -- I'm impressed! If you're not using all those skills and resources, I can only say that I sure understand that -- we all make our own compromises with this rotten condition. Some days it's harder than others to do everything we need to do. Can you lower your expectations a bit and take this one step at a time? If you can't wear your sleeve all day, can you wear it for four hours a day? If you can't do the whole massage every day, can you do the neck and chest clearing? If you can't do all the exercises, can you get an exercise DVD to make it more interesting (the LeBed one is good, www.lebedmethod.com ) and do part of it every day? One day at a time, one piece of it at a time, is all I can deal with. "Forever" is too long to handle all at once!

Besides dealing with the medical realities of LE, we have to deal with our grief and frustration and anger -- and on top of that, for most of us there's the sheer ignorance about LE from our health-care providers, insurance companies, relatives and friends. It all adds up to a very difficult journey, and one we never expected when we first heard that dreaded BC diagnosis.

I hear you on the sometimes-wish, and I for one am really grateful that "they" didn't just let you die. We're all in this together. Now, how can we help?

((((((HUGS!)))))) and prayers,
Binney

phillygirl Joined: Mar 2007 Posts: 21

Mar 16, 2007 06:11 PM phillygirl wrote:

Thanks so much Binney and Bad Boob (lol). I'm really having a hard time right now. I ignored the condition all winter because for some reason when it's cold, the swelling isn't so bad. I'm just afraid that I've let it go too long and it's just not responding as quickly as it usually does. I have been doing my exercises and massage and wearing the sleeves, but the day sleeve I can only tolerate so long. I put it on in the morning and by 2:00 or 3:00 I tear it off. I sometimes manage to keep in on until I get home from work, then I take it off, have dinner, do the exercise/massage thing and put it back on. I'm even considering putting on the bandages tonight instead of the night sleeve because for some blasted reason they seem to work better.

I heard on another site a couple years ago that they do have medications for LE that break down the proteins. Also, while pumps aren't always the best thing, I was working with this outfit that had this machine they said was not a pump, and worked on the arm and the chest wall. But the insurance companies won't pay for it and I can't afford $10,000.

I am also a recovering alcoholic, five years now (it took me six years to get that first year, tho). That's how I found my cancer. AA tells you to go to the doctor when you quit drinking just to get an idea of what condition you're in, and that's when they found the lump. Now, if I can beat the booze, why can't I deal with this?

If I could get ongoing therapy, I think I could handle it better. But when they approve therapy, it's only for 6-8 weeks. Why aren't there programs where you could go once a week after an initial 6-8 week treatment?

Anyway, I will check out the Lebed thing (I know a gynie here in Philly named Lebed - any connection?)

You know, when we bought this house, my mom kept saying "don't buy an old house, you'll regret it, it will need so much work." Well it did need a lot of work, plus we had a fire, but it's gorgeous now. Anyway, when I got the cancer, her tone changed -- "God had a reason for leading you to a house in Fox Chase Cancer Center's backyard." lol

Anything you guys want to send me would be great. If it needs to be mailed, let me know in an email, and I will give you my address. My email is siciliaphi@aol.com.

Thanks again. I do feel a bit better. Pray that my arm starts to go down this weekend or I will get really discouraged again.

AnnaM Brittany, France Joined: Oct 2005 Posts: 1,948

Mar 16, 2007 07:23 PM AnnaM wrote:

Phillygirl, my heart goes out to you. I am so glad you came to this site. I love the way Binney says you can just take little steps at a time. Yes, this is all terribly daunting, but you are so worth the investment. Look how far you have already come! You must be strong to have dealt with alcoholism. Believe in yourself and draw on that strength. One hour at a time, one day at a time. badboob, I am thinking of you, too. This is all so unfair. The worst part of it is that outsiders and even those who are supposed to be knowledgeable just don't get it. Feeling alone hurts, that's why coming here and hearing from you is so wonderful.

Hugs, Anna

phillygirl Joined: Mar 2007 Posts: 21

Mar 17, 2007 05:48 PM phillygirl wrote:

My arm is just not responding like it should be. I got so frustrated tonight, I punched it! Good thinking, huh! I also feel like under my arm and chest, like there's some kind of block there, that's why my forearm doesn't seem to be going down. It looks smaller when I take off the sleeves or bandages, but that's just compression. Leave them off long enough and it will pop back up.

I also have pain now, which I never did before. Can someone tell me what this might mean? I know I should probably call my therapists over a the Center, but if I go through therapy again, they only do it during business hours, and I just started a new job. I really don't want to ask them if I can come in late for six weeks. They'd probably say yes, but I'd have to stay until 6:00 and won't get home until 7:00 and that will play havoc with my meeting times. I'll end up eating on the fly and gain more weight. I know these seem like minor problems, but it's throwing off my whole life. I should be grateful I'm "cured," and don't have some of the problems I see others have. Badboob, I feel like such a sissy when I see what you're going, through.

Are there any organizations out there fighting for better LE treatment? Any organizations that maybe provide things for LE patients who can't afford them?

Also, why don't they make lightweight, long sleeve, opaque blouses? Summer is coming and I dread it. It gets really humid here in the summer. I live in long sleeves when I can find them, but usually they're my spring and fall blouses, and I am so uncomfortable outside in the summer. I just want to go out in short sleeves or a tank like everyone else. Summer will be here in no time and the humidity just FEEDS the LE. I buy cotton, and I can usually find 3/4 length, but that still shows my forearm.

Any literature anyone wants to send me will be appreciated.

LindaLou53 Joined: Jan 2006 Posts: 848

Mar 18, 2007 09:34 AM LindaLou53 wrote:

Philly, I wear my plain tan sleeve and glove during summer time with tank tops and don't worry about trying to keep it covered because comfort in the heat is more a concern to me. But I understand completely the frustration with finding something that makes you feel good about how you look. Check out the LympheDivas website.

LympheDivas

You may find that the selection of lightweight colored sleeves and gloves will be more fashionable and comfortable in summer weather. I have not used their garments but know of others who like the options of color matching and the sleeves tend to be smooth, light round weaved garments. During the summer you could still wear your tank tops and a color coordinated sleeve and glove.

Linda

NPat Panama City, FL Joined: Jul 2004 Posts: 1,197

Mar 18, 2007 03:18 PM NPat wrote:

Phillygirl,
Sounds as though the bucket with your coping skills is empty. The reason so many of us flip out with the LE is because we have a change in our body image and go through the grieving process... the old Phillygirl did die and the new one is different... and you don't like her... do you? I know this is heavy stuff but suffering is part of living and some of us seem to have more than our share.

I am a nurse practitioner with LE of the left arm and trunk. I was dumb about LE until I met a wonderful LE therapist who taught me the ropes. I guess I have an advantage, because before BC and LE, I cared for several wonderful patients who went through nasty illnesses and kept their positive attitude. I marvelled at their response to cancer, stokes and renal dialysis. There was a common thread... faith. It really doesn't matter what we look like as long as we know why we are here... right?

My grad degree is in nursing education, so I use my garments as object lessons. Yeah, I get the carpal tunnel questions all the time. I am back to work for two years now and LOVE my job in family practice. I realized that I expect my patients to take their meds, go to therapy, follow a meal plan... so I do too. The LE therapists can only give us the tools, Phillygirl. We have to grab the baton and run like heck until we finish this race. No one can do it for us. God gave us a noggin with some brain cells and put us in situations where we have to ask for help... and use that help in an efficient manner.

We all get angry... Golly, you achieved sobriety! You can whip this LE... and not your arm, girl! Call up the LE clinic and ask when their LE support group meeting is held. Pull out your instuctions on self massage and start my massaging just your chest tonight... you CAN do it! Even if your insurance may baulk at paying for LE care, you can get custom garments from Bio-Concepts at a cash price that is most likely less than $200. However, you have to get your LE under control first.

I gave up on the tan garments and now order colors. I don't bother trying to cover up the darn things anymore. I have learned that my talents are more important than this darn LE and I have to keep myself healthy if I want to continue in my profession. No one can do this for me. My husband tried to talk me out of a new tile floor for the kitchen because I have dropped so much Corning Ware on the floor and it literally explodes. I told him that if I drop glass on vinyl, it will just puncture the vinyl because my dexterity isn't likely to improve. He gave up and we bought tile this weekend!

If you want to vent this is a great place. Binney and I have been posting for awhile here... though she is more faithful than I have been lately. She has helped me through a lot of issues besides LE and I consider her a sister. Welcome to the sisterhood... it is not the Ya Ya but the Lymphnuts.

Pat

phillygirl Joined: Mar 2007 Posts: 21

Mar 18, 2007 04:22 PM phillygirl wrote:

Coping skills? What the bleep are they? Like myself? Hell, men used to fight over me with guns! (Well, nobody actually pulled the trigger, but they were drawn.)

Not anymore. I've gain so much weight since the cancer but mostly since the LE hit and no matter what I do, I just can't lose it. It's like a such an insult that you live thru the cancer and then get THIS! I don't want to wear colored sleeves, I don't want any one to see any more of them than they have to. I want lightweight, loose-fitting blouses and jackets. Being heavy now, I just need to dress appropriately. I will never be able to wear a tank in public again, that's just how I feel. And my sleeves are so heavy anyway, even with just a tank I'm still miserably hot. They told me I am not a candidate for lightweight sleeves because my LE is second stage, whatever that means.

BTW, punching my arm seems to have softened it up a bit, beleive it or not. lol

I have been massaging and exercising everyday this week, and yesterday and today put on the bandages, which I'm wearing now and typing is a bitch right now. But the forearm is just not responding. I think I found out where the scar tissue is and have been working on it, but I'm not sure I'm doing it right. When I asked my therapist a couple years ago to show me how to do the scar tissue, she said no, that only the therapist should do that, so I really don't know where or how to massage the scar tissue.

I really shouldn't complain, I know that. So many other women didn't survive or are living with much worse conditions. My husband is wonderful. I haven't cleaned the bathroom for 11 years! And now that he's retired, he does mostly all the cleaning. I just pay the bills, balance the checkbook and go to work. I also do the wash because I'm convinced they should all come with verbal warning systems that go off when a man approaches announcing "Back awaaay from the washer."

Anyway, I am buckling down and trying to get this under control before it gets hot. If the forearm doesn't start responding this week, I guess I am just going to have see about therapy again.

What's with the ache I'm experiencing now, can you tell me?

Anyway, thanks for the support and pep talk. I am going to try my best.

Boo46 Joined: Oct 2006 Posts: 808

Mar 21, 2007 04:41 PM Boo46 wrote:

Hi Phillygirl,

Your fellow overwhelmed sister here. Don't really have any advice being a LE newbie. Just want to say stay tough and sending hugs. (((((Phillygirl)))))
Sue

phillygirl Joined: Mar 2007 Posts: 21

Mar 21, 2007 06:56 PM phillygirl wrote:

Well, hugs right back to you (but easy on that left side)!

badboob67 Joined: Jan 2007 Posts: 3,270

Mar 21, 2007 07:25 PM badboob67 wrote:

Phillygirl,
I'm still sending prayers and good vibes your way--I hope you can feel them!

As for your wardrobe question, I have been thinking about that myself. Sometimes, you just want to go out and not deal with the looks or the questions because they make you feel less than "normal" (as if there IS a normal for ANYONE!). Anyway, I found this really neat blouse that gave me an idea. The blouse is opaque cotton, but has loose-fitting long sleeve that are made of that semi-opaque stretch mesh. It is breathable enough for comfort, but blurs whatever is underneath (like a flesh colored compression garment!) I thought I might try to add sleeves like these to some of my short-sleeves and tank tops. If you sew, it shouldn't be tough to do...if you don't sew, I bet a drycleaner could put you in touch with a seamstress that could do this for you. I bought the blouse at a local outlet store that sells catalog past-season and return items, so it wouldn't help to tell you where I bought it.

Now, for the self-image thing. I must tell you that it is very hard for me, too. I've been very thin (eating disorder) and very fat (now with no exercise and lots of fatigue and restricted movement because of METS). I don't like the way I look now and it's actually rather uncomfortable carrying around so many extra pounds. But, my diagnosis last year really re-stacked my priorities. I have found that although I would love to be slim, I am really just glad to be here and have the opportunity to fight to stick around for a very long time. I don't mean to imply that you aren't completely justified in feeling the way you do. I would just rather you were able to look at yourself and see the GOOD things...and realize that the package doesn't mean that much. I can tell from your posts that you are witty, strong, and caring. I'll take that over a size 2 anyday!

I'm keeping you in my prayers, philly, and hoping you are able to start feeling a little less overwhelmed soon! Don't be so hard on yourself!!!!

PS--you are NOT a sissy. LYMPHEDEMA sucks and I wouldn't wish it on my worst enemy!!!

AnnaM Brittany, France Joined: Oct 2005 Posts: 1,948

Mar 22, 2007 04:35 AM AnnaM wrote:

What a beautiful attitude you have, badboob67. They might not have been meant for me, but I will take your words to heart.

Phillygirl, I hope you can feel my positive vibes, too, cause I am sending them your way.

I don't have any suggestions about hiding the compression garments. I got mine (two sleeves, two gloves) in a color called seafoam and I like the color so much I wear it right out there, no covering up unless I am cold. When these wear out I think I'll go for lavender. I haven't worn them in the heat yet (live in Virginia), but I guess I'll experience that (discomfort) pretty soon.

Hugs, Anna

phillygirl Joined: Mar 2007 Posts: 21

Mar 25, 2007 10:11 AM phillygirl wrote:

Thanks babboob and Anna. It's not so much that I don't want the questions why I wear long sleeves, it's just that even without LE, my upper arms are so heavy, I don't even want to look at them. I even wear sleeves when I'm home alone! I no longer get undressed in front of my husband and live in dark colors all winter. In the summer, I do lighten up a bit, but still with the long sleeves.

I haven't worn a bathing suit for ages. The year I got my BC, I was getting my chemo and wasn't allowed in the sun. I had borrowed my sisters suit, one of those blouson things, and we went to a lake in the Poconos because the heat was awful that year. I stayed under the trees but it was so hot, I finally surrendered and went into the water. I hadn't worn a bathing suit for ten years before that, and don't you know along comes the freakin' local Action News team from Scranton, covering the heat wave when I was in the water!!!! Well, I just moved out the the deep end and waited for them to leave because no way was I going to be that cellulited-backshot that makes people say, "What's wrong with that woman, doesn't she know how disgusting she looks." (That was me in my glory days. God got me back, I guess, hmm?)

My sleeves are Elvarex, and I don't think you can get elvarex sleeves in colors, and if you can, I probably would have to pay for them myself. That's the problem. I am the only one working, my hubby is retired and every penny counts.

No I don't sew (lmaorotf). My husband took so many things to the cleaners for me to be sewed, hemmed, etc., that the lady finally asked him why I didn't do these things myself. it was simple "cutting and sewing a straight line" stuff. Well, my mom and sisters learned how to sew in public school, but I went to Catholic school where they thought German was more important for me than Home Ec. Anyway, I do have a few things I wouldn't mind maybe adding sleeves to. I'll let you know how it goes. Thanks.

sherry7 OR Joined: Sep 2005 Posts: 255

Mar 28, 2007 07:39 PM sherry7 wrote:

Philly, first please don't hit your poor LE arm, I would hate for you to cause more damage to this very delicate system. I had bc dx'd and a mastectomy in October of 2005, yes the PINK month. Six months after the mastectomy when I was getting my mind and spirits squared away to go back to work I got LE. Not only did I know I had it when I saw and felt it, I knew that my career as a massage therapist was over without question. I got the LE six months after my mastectomy and reconstruction. We had company coming and I cleaned house and played in the garden because I like that better than cleaning, lol.
Sure enough, went to my surgeon and it was LE, I had seen it before on my wonderful clients and had been trained to recognize it in my schooling. Since I developed LE I have had to not only quit my massage which I loved, I sold my half of my day spa to by business partner and cried for this whole year. My LE causes me great pain, heat, humidity, altitude and barometric pressure all set it off. I take regular pain and anxiety meds just to get thru the day. I understand your anger and sadness. I have gotten over people seeing the sleeve and gauntlet that I wear daily. I now also have chronic vertigo and had to get a cane, so I said what the hell and yes, its pink! I thought perhaps if they see the pink they won't ask. Now because I am falling even with the cane I take a walker if my vertigo is acting up. How do you hide that? You can't, again my vanity has been insulted and I am having a huge dose of humility these days. Starting with bc and loss of a breast. My next step is filing for disability at the age of 51. Never in my dreams was I ready to stop doing the work I finally found with much searching that fed my heart and soul, helping others. I hope that I can be as strong as those fellow LE sisters and direct my need to help others by education for myself to help others. I have to find a possitive or I will go nuts. Having a handicap was never in my picture, but hey, was it ever my picture to design in the first place??? I wish you the best, hang in there and be persistant in discovering ways to be comfortable. When its hot, I get an ice cube and rub it on my arm and it calms the beast temporarily. I took a spray bottle of water with me to the fair to take grandson and sprayed my arm and stayed in the shade when I found it. We do have to make adjustments, but isn't that what life is all about?

Also we rigged up a misting kit on our back porch and while family is playing in the sun, I am in the misting area. These things do help. I still need my pain meds and don't know how to wrap my arm because PT didn't teach me, thats next.
I wish you the best, you may discover things that help you to assist us. The only thing I can't get away from is barometric pressure or humidity which is simular, I hurt so bad and can predict storms the day before. Thats when my med intake increases and my doc just says, take the meds and don't suffer...he does try. Love to you all! Sherry

Binney4 Joined: Aug 2004 Posts: 8,374

Mar 31, 2007 11:05 AM Binney4 wrote:

Sherry, I've read bits and pieces of your experience on the threads here for a long time, but reading the whole story in one place makes me sad and angry and soooooo frustrated. I'm so sorry about all you've gone through and the on-going struggles. I'm praying that you'll discover exactly the combination of resources you need to get back all that's important to you. In the meantime, is there any way I can help? Because you're so right: "the beauty of this journey is that we find each other."
Binney

AnnaM Brittany, France Joined: Oct 2005 Posts: 1,948

Mar 31, 2007 03:05 PM AnnaM wrote:

I too am praying that you find the right resources to help you, Sherry. I'm dreaming that some famous person will come out and talk about her LE, that doctors will start to listen, that hospitals will set up LE therapy centers and offer targeted exercise classes and easily scheduled massage appointments with well-educated LE therapists, that sleek and comfy garments will be available in nice shops with fitters who know what they are doing and finally, that somebody finds an absolute cure, yes, for the bc that brought us here, but also for the LE that changes our lives every single day. In the meantime, I wish gentle healing for dear Sherry, Phillygirl, Sue, badboob, Pat and Binney.

Anna

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Topic: Why does this have to be so hard?

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.