GRRRRRRRRR I HATE LE..........
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a match made in hell: high humidity, 95 degrees and LE. Hate it so much!
Went to an indoor pool today and tried some exercises in the pool. My fingers are better but my chest feels odd. I have implants and I've aggravated something because I have pain down my side that I haven't had in a couple of months. We'll see how the fingers look tomorrow but I'm hoping the pool thing works because my swelling has been really bad and I can't get it to completely go away and get it under control.
Thanks, Kira for the worksheet on the wrapping. I'm one of those who learn by doing/showing but I'll see if I can figure it out. I so need to learn how to do this! Where do you all buy the wrap for wrapping? I'm thinking you can't buy it in a local drugstore? Do you have to order it?
Thank you all for your encouragement. This is my first summer with LE too. It's awful. I think the welts I had from my sleeve were a heat rash. It's gone now. Thank you all so much ... so glad you're here ... don't know what I'd do without you all.
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Cookiegal - check out the post earlier in this thread by FaithandFifty (Debbie) with a scarf drape across her sleeved arm - not sure how it works but it made it possible for her to be in a sleeveless dress.
Edited to correct which thread the post was on. I'm an idiot.
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Cookiegal, I sent you a PM about the private LE therapist I have seen in NYC. She's private pay, and she has been very good about fitting me in. Ks1
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Coolibar sells some SPF 50 shawls. Supposedly, they are light weight. Just a thought. Ks1
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As much as I love faith's wrap...I am not sure it will work for me at this event.
I will be totally doing it though at some other events.
The other thing is I hope at least my garments will finally be in. Probably will not have a chance to go until Friday....but that might help.
It has been so long since I ordered...I am scared I lost too much weight.
Feel free to ingnore me, I am a head case about this particuar event, I can't go into the reason why, but there will be a lot of my former collegues there, and some of them really make me feel less than.
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Cookie, clearly this event carries a lot of emotional baggage, and you are a strong and brave woman to attend. Put yourself first, and with that in mind--consider the therapist that KS1 has seen--she's the former partner of my therapist, and reportedly very good--and do what makes you most comfortable.
You are an amazing woman, and don't let these former colleagues play any head games with you.
Kira
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Cookie,
I agree with Kira. Sent you a PM, and sending you lots of cyber hugs.
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so many things I want to discuss but can hardly type brecause of the friggin wrap. I'm going to Rads in about 10 minutes. Waiting for my so to pick me up. Wrapped too tight so whe I caome bacck I will redo it, but before I wrap again will type what I want to post.......so disgusted with this whole thing
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Cookiest. I will send you a PM with my phone number.
I could ship my scarf overnight to you. Today is Wed..... if I understand correctly that your event is on Fri? If you have a sleeveless dress -- could be black or white yada yada........
If you want it -- I will happily initiate the Sisterhood of the Traveling LeScarfie for your special occasion. Just get to me ASAP as you know how loopie the Postal system is up here in Door County. (Not exactly like the rest of the country: LOL)
I think you need to also have your "happy pill" available for the evening. Seriously, if you don't have a prescription for Atavan or the like -- now's the time girlfriend.
xx00xx00xx00xx
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Thanks for your response ladies. I still plan to do radiation. I'm not looking forward to it or the potential ramifications, but I agree that cancer sucks and I don't ever want it to come back.
My first LE therapist did teach me the MLD and how to wrap with the low strech bandages, so I'm in the habit of wearing them day and night for now. If I don't, I swell back up. I can't wait to meet with my new therapist next week. I hope she takes me seriously b/c I do not have a 2 cm difference in arm. Maybe 1 cm in some spots. But I DO have lymphedema. I just hope I'm not more frustrated at the end of that meeting.
So yesterday I had my follow up with my ONC and then met with the RAD ONC. I had my arm wrapped and they were both like, I have never seen anyone with lymphedema do that in my time of practice. So I explained that it was standard treatment with the onset of lymphedema. They both asked why I just didn't wear a sleeve...grrr. I wanted to say "If you've never seen it, then maybe your patients arn't getting quality care." but I didn't think of it until after I left my appointments...of course. But I assured them that that's what the therpaist had me do and that I had done a lot of research on it. It is so frustrating how little they know or care to know about it...even though they are such great docs.
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Melanie, very frustrating
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I am so sorry ladies, those who are suffering so right now. I am still at a loss for works that there is not a cure for our LE.
I just wanted to give you all a ....
(((((((((((((((((((((((((((((((((((((((((((((CYBER HUG)))))))))))))))))))))))))))))))))))))))))))))))))))
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Yea it does suck................My LE specialist is Board Certified and the only one in this whole area. She is fantastic. Taught me how to wrap (which I hate doing) and said a minimum of 3 weeks doing it for 24/7. She did massage the other day for 25 minutes. I have to get down from 12% to 5% before I can go into a garment. I go back to her tomorrow for a 1 hour visit, and see her 2 times a week after that. Oh well grin and bear it
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GOOD FOR YOU, DUCKIE!!!!
Hang tough -- it gets better!
Wrapped hugs,
Binney0 -
Cookie, there aren't words. You're really faced with an extreme case of peer approval, and I admire you enormously for the way you're charging ahead with it. What you're doing is soooo difficult.
Hey! You're GOOD!
Keep us posted,
Binney0 -
Melanie, good grief! Never saw anybody wrapped, huh? You sure don't see what you aren't looking for, y'know? And they have no motivation whatever to look for LE. We gotta change that!
Anxious to hear how it goes next week. Hugs, prayers,
Binney0 -
Melanie, at the risk of being completely repetitive, here's the link for doctors to inform them about LE:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
I must say, as I read through these last posts, I'm struck by the bravery and kindness of the women who post here.
As Binney says: "We look out for each other."
Kira
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When I had my first rad oncologist appointment it was after my LE swelling was down, I no longer had to bandage, and was wearing a sleeve and guantlet, BUT for that appointment, I wrapped. When she walked in the exam room, her eyes got enormous. I said, "THIS is what LE means for me. You should really learn something about it." She apologized. It was a moment but didn't make the LE go away.
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Oh my gosh.... it looks like I wrote my last post on ambien.
Yeah this event is kind of a mind f*** for me.
The whole cancer treatment, frozen shoulder, LE thing has sort of taken me out of the major leagues professionally. I have made peace with being in the minors, but yes I will be seeing people I knew professionally before I got sick.
None of them were the least bit helpful when I was ready to go back to work, so there are hurt feelings on my part.
So yes, looking really good on Thursday night is a big deal, and I was so excited to find a fashionable dress with loooong sleeves.
I could punt on the compression, but I spend the whole evening wondering how big my arm is getting.
Anyway, the heat here in NYC is not nearly as bad as predicted, yet, even a minor break in the weather would be the best thing for me.
Thanks for all the support!!!!!
Have a great day, I am off for a much needed brow wax and haircut!!!
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Cookie girlfriend..............most places are air conditioned, so that should take care of you not being freezing when everyone else is....last laugh for you
.....you have been through a lot, and have endured.....go there and show them all what "real hero's" are made of................you have earned the right to stick out your chest (oops) haha, and say I'm here and ready to party. Hugs 0 -
My doctor asked me about my gauntlet and pink LE alert bracelets when I went to see him in Feb for bronchitis. I told him I wear the gauntlet when my hand is swelling and the bracelets when I go to any doctor's office appointment. I keep the bracelets in the glove compartment of my car so I have them handy.
Sheila
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Cookie:
I feel for you so much...you are an awesome human being, obviously. I hope your husband appreciates you!!!!That being said, I'm going to say this - I cannot worry about what others think about me anymore. It's too hard, I have too much baggage, and I can't worry about what others think of how I look or how I'm doing. I have to remind myself of this pretty regularly. Today, I have on a blouse with cowboys riding horses all over it. I love it and think it's cute - but it's kind of wierd. I am getting used to looking a bit wierd. The truth is, I look a little strange but damn it, I'm having to work with some baggage, you know? Kinesio taped arm, flat, bmx chest; you get the picture. Next week I have to go visit suppliers for work - and I will have to be showing my big ole' kinesio taped arm for all to see - it's too hot and too uncomfortable to do otherwise.
If there is any way possible, I try to find a way to be at peace with wearing the sleeve/gauntlet or kinesio tape at stuff like your function. It's a part of my life...and it's not going away. Yeah, it really sucks, but I cannot hide my arm forever. Especially when it's 100 degrees in Mississippi, you know?
I am praying for you and sending you good thoughts...I'm so sorry we have to deal with stuff like this.
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Cookie- I am sure all of us will be thinking about you tomorrow and sending good thoughts your way. Go with your head held high. They say if you are nervous about giving a speech picture the audience in their underwear, or naked! So picture everyone there in a sleeve! I hope to hear on Friday that it was not as bad as you are anticipating. Becky
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well I caught one break...I got my GARMENTS!!!
Am going to do a new thread for it!
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yeah Cookie!
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Cookie, I've noticed the same thing...the more weight I lose the more the difference in my arms. Not fair, huh! What about one of those stick on bras for the night? They have no back and cost about $30.00. You get 25 wears out of 'em. That's my go to emergency bra. Most times all I wear is those stick on pasties cause I can't stand a compression garment under my outer garment. So hot. But hey, who's been out lately? I'm going on three days not going outside at all. GRRRRRRRRR,
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@ BeckySharp...this time I don't have to give a speech.
If my husband wins the award he will make one.
Hopefully a stirring tribute to my beauty and bravery
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SuzyBelle,
Please explain to me what you mean "kinesio taped arm." I have dealt with LE for 7 years now and do the bandaging. My arm is very out of control due to lack of attention - long story. I am familiar with the kinesio taping of the back, but not the arm.
Thank you!
Susan
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@Kane that is so funny...I am just to busty for the pasties.
I once bought a set because I was so concerned about having to sit and wait flopping around after my wire insertion I was gonna put one on the good boob. They ran so late though I went right into surgery.
I wear a "real bra" about 90 minutes a day at work, the rest of the time I wear a stretchy bra from sears or a sports bra, but my LE wants me back in compression bras. It's funny my real bra at work doesn't make my le worse the way my special ocasion bra does.
I have a bad attitude about the whole thing because I really thought after having the reduction with my lumpectomy I would finally have more bra and clothing choices.
I am glad someone else noticed the diet paradox. It's frustrating because my LE MD pounded home the importance of losing weight...and I'm glad I did, but it does not seem to be a game changer.
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