GRRRRRRRRR I HATE LE..........
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Good for you Ivt... I would vol. more hours if I didn't work full time.
It does always amaze me how many strangers will ask personal questions. Sometimes I enjoy educating people, but sometimes I just give them stupid answers to stupid questions.
Imc, I'm glad it looks like you don't have cellulitis or an infection. Just a flare.
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I despise those people too. Today when I picked up my dd from school, I got from a friend...I see you don't have them on today. Yeah I was busy and I forgot to do it but I do have my compression bra on....maybe that is why I forgot. lol It is squeezing the oxygen out of me.
I am still having a hard time getting my LE back under control since my surgery. My oncologist is going to send my back to the clinic. I just don't know how long that referal will take.
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Laura, I had the pulling or cording you describe when I had my first surgery two years ago that took all my lymph nodes. Every time I extended my arm it pulled and it hurt to fully extend. My amazing LE trained PT said she could get rid of that for me and SHE DID! She worked for several sessions, inch by inch, stretching the cord (you could feel it through my skin). She also worked on range of motion and drainage with me. The cord pulling has never returned and I am so grateful. Do you have a good PT?
On a different note, do any of you get an aching shoulder from LE? I've had it before and it's cropped up again lately. Not sure what is behind it. Thanks in advance for any input. deekaay
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I get that aching in my shoulder sometimes. It's my early warning that I've been putting too much weight on that arm carrying things around. I really try not to, but sometimes I get myself too loaded down and then I have problems. If I pay attention to the ache, I can usually thwart a flare.
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Firni -- stupid answers to stupid questions -- LOL ... that should be a David Letterman segment.
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Firni - thanks for the tip about the shoulder ache. I've noticed sometimes that my shoulder aches on my LE side but I never associated it with carrying things on my shoulder. Good tip. Thank you!
I have a question/comment/observation. I'd appreciate advice/tips you could give me. I've noticed during PMS my swelling is worse. While I was still seeing my LE OT I asked her about it and she said, "Oh, yes, PMS can make it worse." My question is, what do I do about it? It's so frustrating because I feel like my own body is attacking itself. It's nothing I've done ... it just does it. I do everything the same, drink a lot, exercise, gloves, sleeves ... but it is pretty bad for a few days. What should I do? Is there anything I can do to make it better? The only good thing is that I know after a few days it will be better. Any tips?
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hiall, im a member of the swell siterhood, also. am definitely under the tuterage (is that a word) of Kira, Binney, et.al..they're our resident experts.. i made so many mistakes in the beg.. my feeling.. im 1 1 /2 yrs out from a dbmx, tx, etc.. and i personally didn't have the wonderful option of getting recon., my health was in the can (sh*&***##r) before the bc journey. then, LE moved in. if it weren't for you guys, id be in the rubber room, for real! i think the best thing for my emotional health has been coming here, and I love you ladies for sticking around, and educating me. if we gotta sit together, and swell, then we BEST stick together and learn how to live with the hand, (swollen as it might be ) that we were dealt. i also am soo thankful you've been here for me... 3jays mpom. welcome to Lilah, and Ahewand two thumbs up for your DH; dawn!0
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Oh my-I saw the therapist for the first time today and she tried to tell me that I didn't have LE!!!! So the swelling and pain (arm boob armpit) must be in my head then!!!! Also, I told her my forearm and thumb were numb and she said it's probably not from LE but didn't tell me to mention it to my onc-luckily I did coz he is now sending me for an MRI coz he thinks I could have a tumor on my spine. Could this day get any better
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Oh my God, Imc. My prayers to you for a clear MRI and then to find a different LE therapist. I'm so sorry you have this burden to carry now. How soon is your MRI?
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So SORRY lmc! I too will keep you in my prayers.
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IMC,,,,,,,,,,,,,,,,,,,,,,,,, I am not sure whether to pray for you to have LE or not.... GIRL, I am thinking about you !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
FINRI..... What you said about staying on the threads..... 2 1/2 yrs for me too.................. MAYBE I AM NUTS??????????????? Lord... that is all I need...
Deekay... cording... Yes... I think I need to go back to the PT. SHe is good I just cannot spend that kind of money right now AGAIN. I am choosing to put off PT until April.. ( don't yell)....... I will have the extra time to go three days a week again then... and the extra 500.00 bucks to get fixed up again...
Thanks for the reply) I have been off BCO since this past weekend... 
Christmas busy time here....Anyway... I am doing ALL KINDS of stretching... I hate it, as we all do... I hate the wrapping.. we ALL DO....
Thus is our life!
Amen!
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We interrupt this broadcast with some footage captured last week during my tour thru NY.
Yes. I have the very beginning quandry of LE issues.
Yes. I do wear a sleeve & gauntlet on a daily basis.
Yes. I also wear a compression garment for chest issues.
Yes. I have pain.
Yes. I still go out and have a GREAT time with children.
Here's some YouTube film capturing me with about 165 preK & K kiddos.
What I want you to notice is the 'quilt-wall' created under the direction of their art teacher, with all 330 children contributing a square, all in response to the quilt work illustrations I created for my first picture book.
In truth, I nearly 'never' notice any pain what-so-ever, when I am 'performing' and or with the kids. It's only noticable when I'm NOT engaged in things I love.
http://www.youtube.com/watch?v=u3ZlNtUOjIY
My new 'pink' arm gear...... still not the fuscia set I have now ordered twice..... but I have to tell ya, I don't think that's the first thing that you'll notice.
[This is not intended to be a comercial, but if anyone were ever to order from my website, the promo code "survivor" will ring your order up at 50% off the retail amount.]
I just wanted you to see me in action..... loving what I get to do, despite the fact that I ache and have a heavy arm and feels like someone's stuffed pillows in my arm-pits.
One more disclaimer: I am only able to attempt such craziness, as cross country travel, into NYC and beyond etc etc, because my husband was able to do all the driving, haul in all the gear, carry in the boxes of books etc etc. I just stand up in front and smile and have fun..... he does all the work. In the past, I was able to trek about on my own. Sigh...............
I just didn't want you to think that I was super-person. I have found the last 6 months to be about accomodating my "limitations" and making use of the energy & passion that I still have, within the boundaries of reason and lowering extra stresses to my dominant arm as much as I can.
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Thanks ladies-the MRI will be in the next week or so. Thanks for your thoughts and prayers-they are much needed. Am feeling really down atm with all the pain and chemo and bad news....people can only be strong for so long!
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Imc, I offer a hug to help hold you up.
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Imc, HOW MUCH experience does she have with lymphedema? Holding my nrathe with you for the mRI results. Did you di chemo and rads? Could it be neuropathy??? (the numbness) HUGS t
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Thanks Sharon and Terri-I'm not sure how much experience she has with LE-not much by the looks of things though
)I'm on chemo now and I haven't had rads to this area. It's not neuropathy because it started before the chemo. My onc thinks the C5 is affected because I don't have a lot of strength in my arm. It also could be from the swollen lymph node in my supraclavicular are....praying it is!!!
Lisa xoxo
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ooooh...you should TALK TO your next prospective lymphedema therapist IN ADVANCE to making your second opinion appointment and be sure they are lymphedema certified and ask directly how much experience they have (hopefully 100+ cases)...otherwise dont wasted your time, energy and money...and all 3 of these are very cherished during our ill times...hope they get to the bottom of this soon, and out your mind at ease, and get you a valid dx (and cure!) hugs terri
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Hi Terri-because our healthcare is free we get stuck with whoever they have on offer.....I've already waited so long to see her. Hopefully she becomes more proactive. Thanks to this forum I know more than she does! lol
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lmc, I am so sorry you are struggling with this - don't give up! You need to get in with someone who knows what the heck they're talking about.
I hooted when I read your comment about this forum and knowing more than she does. Knowledge is a wonderful thing, isn't it????
Hang in there, my friend!
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oh, your in Australia! if thats your situation, I am sorry...perhaps you can get a book at the library on lymphedema masage and do it yourself? also there are sites on youtube that show lymphedema self massage techniques, and you can probably google the "exercises" as well. Honestly, it was great having someone else do the massgae, but alot of it you do yourself. The WRAPPING is hard to do without help (for me anyway) but you can google the instructions for that, and maybe she can assist you...nothing like training your professionals! argh! hugs terri in Michigan (try lymphedema arm wrapping instructions)
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Imc, there are times when we actually hope for LE as the diagnosis, and this is one. But I see no reason at all to abandon that hope yet. Everything you describe could be related to LE. You need a second opinion. So, yes, I know you're sort of stuck with whoever is assigned to you, but have you checked with the Aussie LE society to see if there's anyone else you can holler to for help?
Or the Aussie bc boards to see if you can connect wth other women with LE and ask for their suggestions?
http://www.bcaus.org.au/forum/index.php
There are some excellent resources in Australia, as they're major players in the LE world (despite your experience!
), so do see what else you can uncover that might help. (Why on earth should you, as a patient, have to do this digging? I have no idea, but that's our reality.
Tell us how we can help.) You might even refer your therapist to the UK Best Practices for LE document and start a discussion with her about what she could be doing to help you.http://www.activahealthcare.co.uk/lymph/pdfs/lf_best_practice.pdf
At any rate, you sure do have my prayers and cheers as you face off with yet more scans and waiting.
Hugs, prayers, brownies!
Binney0 -
Faith, brava! Yes! It's all about doing what we love -- with accomodations, of course. Is your DH enjoying his expanded role as stage manager? I do find my kids especially are proud of their new roles in helping mom do all the things she can't or shouldn't do. They like both the responsibility and the idea that the things they can do actually save me frustration and discomfort. Once I stopped looking at it all from my own point of view ("I want to be able to do all this myself!") I could finally see some of the ways this ties us together in new ways. People like to be able to help -- we just don't like asking for it, much less needing it.
Onward!
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Once again-thanks for all the info and the support you ladies have given me. You are my LE posse-you've got my back! I know that I can come here and feel like I am not alone is this battle. Your info has been invaluable. The therapist was actually surprised at how much I knew. She will be showing me how to massage next week and the following week she is giving me one....I will definitely read through the info you have given me before I go so I know she is on the right track!
And yay for brownies!
xoxo
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imc, ill be praying for you.. just to find out WTH is it, and what can we do.. when we think we're at our wits' end, we find we have just a little bit more.. take care of yourself, get rest, and take some soothing teas, whatever, you can do till the MRI.. we're all here, waiting with you, doing virtual "got ya back" duty.. please, God, we'll find out its' minor. youre not alone, sweet thing... 3jays0
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Sweet words 3jays....thank you
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Lisa.......... this is why I do NOT want free health care in America.... not like yours or others like yours.... GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR
YOU SHOULD NOT HAVE TO WAIT LIKE THIS... and then get a doctor you do not want.... this makes me MADDDDDDDDDDDDDDDDDDDDDD for you! I am sorry too
!Also.... I am glad you are here with us....well.... actually I " wish" not a single one of us EVER have met....... but since we were all dealt this special card..... and there is no turning back.... I am glad you have a place here...... on this thread.... to vent........ and to share........ and to learn from some of these AMAZING women who are SO educated on LE! Hang in there girl!
FAITH>>>>>>>>>>>>>> I am off to see your video... yeah! I am excited to see it...
All others........ " Rock your LE" and let it know....... you are the boss!
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OK... so Debbie.....
......... did you know....... going into this NY school..... that you would totally MATCH the wall behind you in this Video? Your choice of FUN cloths.... MATCHED the art work behind you on the walls..... I LOVE IT!I am a starving artist... abstracts.... mixed media........ oh... and I also am a Hair Stylist.... who LOVES getting elbow deep in COLOR........
.......... so I personally LOVE to see anyone's work that is tied into anything creative!Thank you for sharing!!!! I will investigate more of you work on YouTube as time allows for me!
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Thanks Laura-you know, I have posted on a few different threads but I have found you ladies to be the most kind and supportive....so that's why I keep coming back here. I know that even if I have a problem not related to LE I would still be supported. There must be something extra special about LE ladies!
I like your new pic too!
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THanks Lisa! My new picture is a shot my son took about three months back... it was a silly photo shoot he did of me... and it one of the only close up pictures I have of myself...LOL... and the top of my head is cut off in the photo...... but at least you can see most of my face...LOL
PS........ even if you do not have LE..... you have friends here... and I CANNOT BELIEVE you are having issues finding other kind and supportive ladies on BCO... this makes me sad and a little mad for you ! Well, I want you to know.... you are welcome here! Also.... I cannot help you on Stage 4 threads... as I have not spent much time with those ladies.... but I can help you find threads... or a thread... where you can hang out... just visiting with other ladies. They will not be stage 4..... but they are sweet and supportive.
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