GRRRRRRRRR I HATE LE..........
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Well big screw up at teh infusion center. I am home on amoycillin, not IV. I get to stay home unless the fever spikes. We are having a heat advisory here, no A/C. great scott! its hot! hugs
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I am reporting tonight from Shelter Island home of Towny! (who I need to call)...or she can just sit on her lawn and wait for a lady in a sleeve to drive by,
@Terri ...:(
So here is a brand new kind of hilarious LE story....I was fiddling with a compression bra last night, and it was so tight my hand slipped off and I PUNCHED MYSELF IN THE NOSE!
I had a terrible headache last night and this morning, but with asprin and leftover emergency morphine it's better.
I broke my nose when I was a teenager inventing a new baton twirling move....(there is a reason nobody does a double elbow roll into a toss-turnaround) and it has been super sensitive since.
That's kind of freakin funny. At least my poor poor husband got to hear about something besides LE.
Sooo....I wore my juxta fit around the village and on the trip to the East End and here is the funny thing....It gets a lot less looks and questions than the compression sleeve. Go figure. I guess people just figure I hurt my arm, and let it go.
So in the name of my husband having some fun I actually wore my glove and sleeve to Sunset Beach a chi-chi bar last night. I figure every stylish place I wear a sleeve and glove is some sort of peverse victory.
Anyhow...I am doing ok...juxta did it's thing which is to make the upper better and the lower slightly worse....and I really do think I caused the gods to laugh at me when I bought non sleeve friendly outfits.
(I am realizing pants+ a tank+ and a cover up is the best combination...a flowy skirt and a coverup is a lot of fabric.)
Anyhow at least the self inflicted nose injury is distracting me.
Finally...here is a sleeping position question. I naturally am a stomach sleeper, though I know it is better for my shoulder and back if I sleep on my side or back.
But if I sleep on my front with my arms above my head, does that count as having my arm raised?
Have a happy and un-swollen week-end!
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Cookie, it doesn't count. I'm sorry!
"Above" refers to above your body (or above your heart) relative to the ground. Think gravity.And I'm sorry about your nose too -- that hurts just to think about. Is it turning all shades of purple? There's just no way a purple nose can masquerade as a fashion statement
And explaning what your bra attacked you is not going to work either. Please be well!
Binney0 -
JO-I never have but my previous therapist did put a strip of kineseo across the ends. Becky
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Jo, I have used the kineseo tape quite a bit and find it great for the truncal LE. Do find that sometimes the ends roll up a bit so I just trim it.
Need to be taped at present but I can only put shorter lengths on myself where as the therapist can put it right round my back.Its no use asking DH as he is hopeless wth that sort of thing.
At least wearing sleeve and glaunlet has improved my arm and it feels much more comfortable.
Both DDs have arrived so had better see what they are up too.
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Thanks Bin.
Have a great 4th!
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sorry i fell off, swell sisters.. no news on my gloves, i fear someone "helpfully" cleaned the room, and threw them awaygrrrrr.. now, i "get the priveledge " of meeting yet a new fitter, we;ll see.. hopefully, they will know what theyir doing (please) and be able to acess both gottfreid and Jobst.. i like gottfreid for my "bad" days, but find the jobst have the right flexibility to do my gardening, and housework... its' a lot to hope for, but , maybe a fitter, in each will work also.... and if there's a rainbow over my head; my old ones (not so old) will show up... they WERE left in the oncos' office, so, im holding out, and praying someone finds them in some corner someone put them in... it'll take a LOT of someones, huh? hahaha 3jays
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fingers crossed for you 3jays
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- Geez 3jays--I am NOT going to remove my glove in any drs office! I want to leave as I came in-with everything! I do hope it is found. Becky
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so yesterday I visiting with someone and I was wearing a gauntlet for food prep and and then I was switching to my glove under my looong sleeve and a lady said really loudly.."IS THAT A GLOVE?" (kind of like "IS THAT AN ENGAGEMENT RING?)..and it was like...way to go to make my hand the center of attention.
Besides that I am having a decent time.
My boob swelling bugs me much more than my arm.
Apparently the upside of the 'lipo" deema is that you feel it less. But my truncal is regular LE which last night I could really feel. My husband wanted to go for a nightcap and I am like no way...I feel like I have a balloon on my chest.
I am wearing my home made compression bra that I made out of a silverwave tummy band. It's not exactly a thing of beauty but it helps!
3jays ...I only have one glove so I worry all the time about losing it!!! I hope you find yours.
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Just popping by to say that thankfully I have an infection in the lymph nodes. Do have bad LE in chest (BC side) which I could see in the ultra sound.
We have a really chilly night tonight.
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Hi Ladies.............back from the shore.......................earlier then planned.............tha'ts another story.....................will read all my LE comments from my dear LE ladies, and then let you k;now how I feel about LE in general....................close your windows, lock your doors, and take the kids inside......................Ducky is about to say what she thinks about LE.............not good today especially since I'm not in a very happy state of mind............................
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I am feeling very grrrrrr and depressed today. I am a wee bit swollen today under the arm area. If you were my sleeve, were did I hide it from my self last night? My DD says it is not under the couch but it is where I took it off. I have not slept great the last few days. Too darn hot. 6am I gave up and took the tribute off. I finally slept lightly for a few hours. I have laid in the bed with my arm up today but I really need my darn sleeve. I hate my chemo brain. Oh the glove is right where I thought the sleeve should be. uggggggg grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr
Happy Fourth of July.
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Somewhere, someplace someone said to lightly rub your back across the side of a door frame. Maybe JoAnn Rovig on her DVD?
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found it in the basket of clean clothes. no idea how it got there.
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Ladies.........................going for my sleeve on Wednesday............I am being measured.........Now the LE specialist says....................."you might need something for your hand"..............I thought..............now if I didn't have to wrap the friggin arm, the fingers wouldn't swell, cause when I take the damn thing off the hand looks normal......................Good Lord does this shit ever end.........................well at least I won't be wrapping during the day...........................The nose thing................can see it happening to me...................one time at my daughters I was trying to push something together, and put all my upper body pressure onto the thing, and it slipped off the counter, and my head from the force of gravity shot downward, and I cracked it on the edge of the granite countertop...................I got a frigging "egg size lump" on my head, so huge you could see it from across the room................God help me trying to pull this "compression sleeve" on......................Well my nose never was that great looking anyway...................maybe it will "pug up", and I'll look cute...........oh heavens.
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My weekend ended better than it started.
I wore my juxta fit most of sunday and then went sleeve free for a few hours at a party...thank goodness it was cool out....I have to be honest I felt like Cinderella not having a sleeve on.
@Kittydog...I had so many freakouts over misplaced gloves and sleeves, I now keep it all in a bright colored tote bag, especially when we travel.
Glad everyone is mostly safe and somewhat sound!
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Ducky--You will feel such freedom when out of wraps and in a sleeve. I almost forget I have anything on! I do have a glove even though it is not in my hand. My therapist wants to prevent that from happening. I do take it off for eating but leave on during exercise and other chores. So keep on keeping on. You are getting there. Haven't hit my nose--yet.
Cookie--So happy you had a few free hours sleeveless. Cinderella--I like it.
Becky
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Jo-Thanks. My therapist said the same thing. I try to do it lightly. Becky
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And I always thought you rub your back on a doorframe if it itches.
Leah
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That too Leah! With the kineseo taping across my back and lightly rubbing it on the doorframe has eliminated the pain and swelling I had on my back. Becky
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well it is good news Tuesday.
A. my bone density scans were really good. I no longer have osteoporosis, just osteopenia in the spine and normal in the hip.
My arm has been ok the past few days but my breast had been acting up. I really could feel what LE is like for everyone else, since my arm is so a typical.
I swear to heaven I had to take off my bra (under my dress) at the fireworks in NYC last night. There were a ton of people but it felt so tight I was being strangled.
So with no more options I tried underwire bra + silverwave fabric today...and it freakin' worked. My breast was the smallest it had been in weeks.
So go figure, I wouldn't do underwire alone all day, but somehow in combo with the silverwave, today it worked. More support, more wiggles, who knows. It is still bigger but a similar shape to it's buddy on the side.
Yea!
Ducky, I hope today was better 4 u!
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Thanks Cookie.....................today was a good day ...........I get mesured for my compression sleeve tomorrow................Hope your good too, and I know what your saying ab out the strangling bra............I had that this past week..........it was awful......took mine off too.
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yea for ducky getting sleeves! If you can get one in black and one in tan. The black looks much less medical, but can be too hot in the sun.
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Hooray Ducky--I felt like I was finally in a surreal world when measured for my sleeve. Mine came in a week and a half. Hope yours is quick.
Cookie--A stitch. Removing a bra during fireworks! You are a real firecracker!
Becky
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cookiegal: how was fireworks? I have always wanted to go since I live in NJ.. Afraid of the massive crowds though? Did you live close by?
anyhow I power washed my deck this weekend and my arm never felt better. Today it is swelling like a banchee..Go figure
Do many of you have underarm swelling? Is that considered truncal LE? Also wondering if it is worse due the the high humidity here today and the fact it is 90 degrees.
I stopped going to my therapist because my copay is $50 a week. I cannot afford it. I am trying to just wing it here and hope for the best
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Hi Gals..............went today to be measured and found out from the woman who my Certified specialist wanted me to go to, is not in "network" with my insurance..........so the custom sleeve that would have cost..........$30.00 (my 20%)................is now going to cost me $150.00........my son was with me and said "if that is where the Specialist wants you to be, then being Board Certified, I'm sure she knows best".............so he would not let me out of the room until I agreed to be measured by this other specialist.............said "fine", got measured, paid the $150.00, and then came home to fight with Aetna about them wanting me to go to some "schlep" that does not know what their doing.
Well my "case manager" from Aetna called about 10 minutes ago and told me she tried all the places "in network" that they have listed, and none of them even knew what LE was, let alone have someone in their Medical Supply Co. who could measure for a custom sleeve..............now I have to wait to see if Aetna can find someone..............if they can I'm out the $150.00........if they can't they will pay for the woman who I had do it.........................its bullshit..............
I don't care about putting out the money, cause when it comes to this f/n cancer I want to do everything right, no matter what the cost................I will see my LE specialist tomorrow, and she and I will discuss this together...............hopefully they can't find anyone who does do LE in network, then I'm home free
My LE specialist also wants me to get what she called a "night garment" to get away from the bandages...................she said that cost around $400-700.00 dollars, so if they do find an in network.......specialist who can measure me for that, then I will go to them for the night garment............I will only pay 20% for that one, and that is the most expensive garment.
Gotta love this LE...........................
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Ducky - I'm not one who cusses but LE brings it out in me. It's such bull$%*!.
I also HATE dealing with insurance companies who aren't concerned about you or your condition ... it's all about money.
Praying that it all works out and you can get compensated. Keep us posted ....
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Dawne.........Never gave it a thought that I had to go "in network"...............When my specialist gave me the name, and the place, and said "she is the best for taking measurements", and I knew measurements were very, very, important when this is done, I went where she told me.................and I have already paid for the sleeve, but its just the idea that we carry insurance and then things get screwed up.
Honestly if I would have checked and found out this woman was not "in network" with Aetna, I probably would have gone to her anyway, just because she is "good" in my specialist's opinion.. I know they don't do a "let the left hand wash the right hand", cause when I mentioned the name Ann, the woman doing the measuring said "I have never seen her or met her , but just know she is one of the best Board Certified LE Specialist in Delaware County, which is where I live....................so they just trust each other I guess.........
WEll its done and paid for,and will be here in 7 days, and I will take it to my specialist, and she will show me how to put it on...............now the fun begins..............as I say when I wrap...............close your doors, shut your windows, and take the kids inside.........Ducky is going to wrap her arm................................hugs.
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Thank god my coverage is decent for garments.....though I bought a few on my own between.
My beige Juzo Custom arrived today...now I just need the glove. It will be better under light colored clothes.
@NJBHW The fireworks were AMAZING. I actually had not seen the NYC ones in many years. I had to walk about 20 minutes from my place. Crowds were not too bad. We did not have a perfect view, but I thought they were the prettiest I have ever seen.
Am getting really frustrated with this boob swelling. I am concerned it will just keep getting worse for the rest of my life!!!
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