GRRRRRRRRR I HATE LE..........
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(((Dawn))) I agree, it stinks. Sometimes there is just so much to bear. For me, when I'm "retaining" extra water, I manage it all worse. The extra fluid impacts my perspective dramatically and lowers my ability to cope. As far as the expense of night sleeves, I was able to get a Compresleeve, which is not as effective as wrapping, but is far more effective than the daytime sleeves. It was about $250. I hate how expensive every single new change is. Every. Single. Thing! I could not afford the higher end night sleeves, but was finally able to manage the Compresleeve. For me, it's working out well. A few others here have tried it and I believe they have liked it, too.
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Dawn, I had my bmx around the same time you did. I like being more active, too, but it seem this year has been dedicated to prepping for surgery, having surgery, recuperating from surgery, or trying to get my LE under control. I am hoping next year may have a bit more "normalcy" to it. Not sure if it will. I don't think I have a toned muscle in my body left with all the "time off" this year....except maybe those in my jaw from chewing.
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Rant on Dawn...... IT DOES SUCKKKKKKKKKKKKKKKKKK! This is why I started this thread.... a place to bitch and scream. ( and ... without meaning to.... get help and get some education on LE... Binny..... Kira...... Firni... etc)............ BUT, first and foremost..... I wanted a place to rant and bitch. I read your post just now.. and I thought.........OMGOSH.... this chic gets ME! She IS me in many ways. I am trying so hard to get rid of my tummy area... It is ODD for me to sweety.... if you ever wanna talk... PM me... I get it!
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Dawne-I know how you feel. Somedays I can't be bothered battling this cancer because I am in so much pain from the LE. It zaps all my strength. This forum is a great place for you to get support though. I love the girls here because they completely understand where I am coming from...
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Imc...I am sorry...
...... but you are right.... we do understand... xxxooo0 -
i too, understand, Dawn; except the part of you losing your insurance.. can you appeal that? i know way back when, they dropped mine, and i just re applied..different worker, but had all my income, and all they wanted , at the ready. and it was approved.
don't give up. i know everyday is a struggle, but, it does get better...find Someone near you who can help you learn the bandages. they give me the most relief. try the American Cancer Society. they've put me in the "know" to ple who have been helpful to me locally.. we'll be here for you, but it never hurts to find p;le near you IRL..
my thoughts go out to you. 3jays
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thank you, ladies, every single one of you. Today has been better. Had a good cry last night and a long talk with a friend. It's only been 4 months since my exchange and he reminded me that I need patience. Ah, patience ... we're so tired of it, aren't we? Thank you all.
3jaysmom - I am in the process of appeal. I was on public aid, a breast cancer branch of it and the frustrating part of it is trying to talk to someone in THAT dept. I've been on the run around for hours on the phone trying to talk to the right people. Both times I've ended up in tears. Sobbing, crying tears because no one seems to know who I need to talk to. I'm truly in bureaucratic hell. From what I can understand I am still covered while I am in the appeal process. It can take 4-6 months before they will hear my appeal. I'm not sure I believe that ... but Monday (I'm too tired and too weepy and too moody to deal with it until Monday) I am going to call the financial person that my therapist emailed to me and talk to her and all I can do is try. I'll see what she says and see if I can get in to the therapist. If I'm not covered, I'll work out some kind of payment plan with her. That's all I can do. I hate cancer, hate LE and hate dealing with insurance companies and bureacracy too!
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Hi Dawne, I just read your recent posts and cried for you. I'm most upset for you that you didn't know about the risks of the Mx and made your decision without knowing. Had you known, you might have still made the same decision, but who knows? I was actually told that having one or two nodes removed would not cause LE. If I had known the risk, I would have still gone ahead with the bi Mx. But only because my Ca was invasive, and ILC and I had small breasts. A lumpectomy would have left no breast anyway.
If you're still covered while you wait for appeal, maybe you can get some visits scheduled. The last time I saw my LE therapist, she gave me a lunch bag sized bag full of short stretch wrap and a sample toe cap. She even let me "borrow" a bottle of glue for my toe cap until I could afford to get my own. So, I was covered with free supplies for a while.
3jays is right about going to ACS and getting hooked up with local people. There are a lot of people out there that are doing things out of the goodness of their heart for others. You need to let it be known that you are out there and you need help. Maybe even find a support group. A good support group can be a huge source of information and resources.
Hugs and prayers to you, Dawne.
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Dawne-Hope,
I just wanted to add that it all stinks, big time.
When my fingers swell, I find a gauze wrap is often more helpful than gloves: I know you were never taught to wrap, but here's a photo:
I'm so sorry about your mother, and the lack of coverage--do also consider talking to your congress person, often they can cut through the bureacracy--and I just want to let you know that it does stink, and it is hard, and you're doing the best you can.
Kira
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((((Dawne)))))
I am so sorry about your mom. And you are so right. LE, cancer, the whole enchilada just plain SUCKS.
I will say, though, that wrapping with bandages at night, is very affordable, and very effective. I have been doing it nightly for about 3 months. You can buy everything you need for less than 100 bucks, and the bandages last about a year or so before you have to replace them.
If you can, I would really try to get in to see the LE therapist and get her to show you how to wrap. It's not so bad and after some practice, you will be an old pro.
Hang in there, girl.
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Ladies... WHY do our bandages only last about a year?
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Washing, stretching, wear and tear. Actually I thought a year was pretty good.
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I have had mine about 7 months and they feel " normal" how will I know when to toss them??
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good to "hear you all here..lol tonites not the best. just a little dip in the weather here, sets my LE wonky...i now am having what i believe is truncal swelling, where the "dog ears" were removed..am waiting for a lite compression shirt. took my cami w/ my foobs off tonite. am not wearing them in this weather, less its real imp. i knew already cold weather is out for me, with ms. now, know my le won't like it, either. 3jays0
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wow. kira - thank you for the post on the bandages! Good to know that weather can set it off. There was a 50 degree temperature drop last weekend ... could that have been my problem? It is better now.
I've never met any of you but am so encouraged through all of you. You've given a lot of helpful advice. I will seek out help from the ACS and I will contact my congressman. I cannot tell you how much you all have encouraged and helped me. Thank you.
xo
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My arm is flabby!!!! I know normally that wouldn't be exciting news but it means my LE swelling in going down! Woohooooooo!!!!
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Who would think we'd get excited about flabby arms? Congrats. on your flab, Imc!
Cold weather does not seem to set off my LE. Having the heat on in the house sets off my hot flashes tho.
Once the temp gets to around 80, I'm in trouble tho with the LE and have to be a lot more careful. Not getting enough sleep can make me swell too.estepp, your bandages should be good for several months yet. You'll know when the stretch is going. Mine get kind of grungy looking after awhile too. I don't like that.
Dawne, I'm so glad that you've been able to get some encouragement from this thread. That's what we're all about on this board. To give and get help, encouragement and hope.
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Thanks Firni!
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Imc, I love good news, even in the form of flabby arms! What a lovely thing to have happen -- do something chocolate to celebrate!
Hugs,
Binney0 -
Thanks Binney-I do way too much chocolate! thats why my arms are flabby in the first place! Well maybe one more piece won't hurt me .....:o)
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IMC... how great... the small things like flabby arms......
My Le has gone into my hand...:( never had this like it is now. I am going to get a gauntlet(sp) next week at my cancer center...
after having in your :
Arm, Truck and now Hand..... are there anymore areas I can get HIT with?
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CHOCOLATE!!!!!! Not a cure for LE, but a terrific distraction!!
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estepp - the breast, fingers? i know, i know, not helpful. so sorry this is happening to you. prayers for you, sister!0
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I have it in my fingers as of last week.. and it HURTS.... but do not have it in the breast yet........
I have come to the realisation.... I just need to do everything I want to do.,... and just deal.
Wear compression daily.. the rest of my life..... at least then I can body build my arms.... like I use to.
So on SWELL days.... I look like crap.... on non swell days... I look great! You too sisters!
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Estepp, I thought of you yesterday - my arm is so fat right now! I have discovered that apparently, when I have an infection like bronchitis or something, my arm is fatter than ever. Oh, joy.
On a brighter note, I kind of have a boob again, at least on one side, which is kinda nice...
But I love your comment about doing what you want to do and just dealing with it.
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so chocolate it is today.
I am swollen big time today. My sleeve is making groves in the top of my arm and hurting. Think I need to buy a sleeve a size bigger for days like today. Hurting enough that I think I will let my DH wrap me tonight.
Hope everybody else is doing well. Have a wonderful Thanksgiving. I am very thankful today. It was last year on the Tuesday before Thanksgiving that I got my diagnoses of breast cancer. Going to celebrate and be thankful that I am still here no matter what medical problems I have from my cancer treatment.
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Abby, wrapping is great for days when we're swollen big time.
A larger size sleeve for those days won't take the swelling down, but wrapping will. Awkward, but it's the quickest route to feeling better and staying on top of the stupid stuff.Happy, happy Thanksgiving to all the U.S. gals -- and all the rest of you, too, even if you don't share our tradition of spending the day stuffing ourselves with turkey and all the trimmings!
Be well, all,
Binney0 -
KittyDog, I got my initial diagnosis right before Thanksgiving in 2007. Part of me hates this time of year, but I, too, am grateful to be here, even with these lousy medical problems. I'm a little more down than usual right now since I've decided to remove my implants. It's stirring up all those old feelings. It's weird, gratitude and loss twisted together . . Having a little more swelling than usual as well. I probably need to hydrate more to compensate for these crying jags.
This too shall pass. Where are those coconut macaroons?
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Actually, I think what really got to me last night and this morning, was that a friend posted a very nice picture of me on my Facebook page. Must have been taken around 2005 or 2006. It made me happy and then sad to see that picture - I looked pretty and carefree. I still had my breasts. Sometimes I feel so beaten down after three years of misery and pain. I don't feel very lighthearted or pretty lately.
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<<<<<TINA>>>>>
It's been such a long haul for you, and chronic pain/discomfort can grind you down. You're my exercise hero--always willing to take on a new challenge.
I don't know if you saw the NY Times Magazine article I posted, but the author said she's tired of the fact that the only "acceptable" way for women to face breast cancer is as the "she-hero"---she who kicks cancer's butt.
Well, we're only human, and sometimes there's too much on our plate.
Sending you thoughts of admiration.
Three years of misery and pain--don't you think you deserve a break here?
Kira
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