GRRRRRRRRR I HATE LE..........
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Carol, the first piece was great, cello solo, the second was overly long and discordant. We'd switched to going to the shorter program, and had to reschedule as the rad onc had insisted that we go to his house for a bizzarro dinner party in February. He talked about his son's sexual exploits for hours, and never let anyone else talk.....Not making this up.
I did enjoy the cello piece.
My mother used to teach musci at Northwestern, and I grew up in practice rooms, and unfortunately, I'm kind of ill informed about classical music.My DH loves it.
My younger daughter is a great musician, who asked for the Chopin Preludes for a Hanukah gift, and when she visited last week, played the piano for hours. We were in heaven listening to her.
I keep the piano tuned for her.
Kira
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That ERO (evil rad onc) sounds like he has issues in so many dimensions.
Someone should study music to see if listening can help move lymph...
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Kira I am so sorry about your job and your mom. I have been out of town on spring break and didn't take my computer this time. I am sure you will go far and find something even better.
I got my stitches out Wed. OMG that hurt like h e l l. The one in the thumb got stuck...he pulled and pulled until I was almost in tears. He stopped twice to let the pain settle down. I told him I was sorry but the neuropathy just make pain worse than it actually is. Anyway my Dr. came in and told me three more weeks of no use.
ugg I can understand why but I was hoping it was healed enough to start doing some stuff however my cuts aren't quite shut yet.So here is my question if some one doesn't mind helping me out. He said I could go back into my gauntlet and compression. The gauntlet is tight but bearable. I thought about just ordering it one size bigger. I found out Thursday and Friday when I took my mom shopping that my hand is not quite ready to be out. It turned red and swolled up both times but as soon as I got back in the car and cool air ran for about 15 minutes it came back down. Do you think this is still surgery swelling or LE starting to act up. My Dr. was very surprised Wed. that it wasn't swollen much at all. Gee I shocked somebody for a change. I have done lots of MLD on my hand and even kept it wrapped in the ace at night even though he said I didn't have to.
My legs look awful he did not allow me to put those on yet. I am trying to do some MLD with cupping my right hand. Doing the circles makes my hand hurt. I figuring some sweeping has to be better than none at this point. May is a long time to go before my next appointment.On the good news. Since it took so long for the company I got my garments from to refile the denied claim, My $695 bill for two leg socks, the sleeve and gauntlet I only owed them $87! Yippie! Thanks to this surgery I am almost to my out of pocket max....Me thinks I will have them send me back for LE PT when my hand is well!
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Kitty--You are going through so much but you stay so positive. Hang in there. Happy to hear you have saved on bucks.
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Update:
My mother is in rehab, although Kaiser wouldn't pay for transport! She can't walk, I don't get it. But they're paying for the rehab.
I suggested a cart from Home Depot....
I am working on rejoining my husband's health insurance, and also getting used to the new rhythm of life. Heard from one of the radiation therapists last night, very supportive.
With bc and LE, I can't accept any lapse in coverage for health insurance, and I'm my husband's plan administrator, so I get to add me back....
Kitty: it sounds like a little of both: when I came out of my cast, my LE was in bad shape. The redness and swelling sound like LE.
When in doubt, just clear the neck and axillary nodes. Don't hurt your hand.
Well, I need to impose structure from within, so time to get on with the day.
Kira
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Thanks Kira. I will see about ordering a large gaunlet today. Hope your mom is doing better. Don't you hate insurance and there quirks.
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Yeah I do Kitty: she can't even walk, and they wouldn't pay for transport? I suggested a Home Depot cart....
Kitty, what did they do to your hand, I forget, I'm sorry--is it carpal tunnel?
Kira
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I had surgery for trigger finger on my thumb and middle finger. He said he had never herd of AI's causing trigger finger but it's funny that so many of us develop it while on AI's. I personally think the AI's caused it...if it can cause carpal tunnel why not trigger finger they are both tendon problems. I will probably take the summer off and then do the other hand in the fall just becuase the summer is so hot that I don't want to stay inside all summer.
I can see it now....Kira driving down the freeway pulling her mom buckled up to a Home Depot Cart. lol I hate insurance in times like this. It is not right and I know it is expensive to take a ride in an ambulance or if they have transport cars there. I do think I would fight it. Good luck and try to have a great week Kira.
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This isn't so much as a grrr as it is a "I was so stupid". I had to put my 8 year old beagle down on TH because of a severe pancreatic infection. I was upset and crabby and on Friday had to do some clean up in her pen... I didn't want to get my glove and sleeve dirty so instead of covering it I took them off and scratched my elbow on the fence. I just felt like being bad. So now I have a small reddish scratch to babysit until it heals. On the good side, today is 3 years from my BMX and I am still NED.
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I'm very sorry to hear about the loss of your dog...and your elbow owie. These precious little friends are so dear. Saying goodbye never seems right. I'm so sorry.
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Oh, Gottalove, I'm so sorry about your loss!
And then the stupid fencing adds injury to your insult!
I love your phrase about "babysitting" your scratch--that describes it so well. It just seems so nutty to have to worry about a scratch, but that's our reality.
HEY! HEY! on the three year mark! Chocolate is in order!
Keep us posted. Be well!
Binney0 -
Gottalove--I am so sorry about your precious pet. They are so loyal. I hope your "babysitting" wound heals quickly. Three yrs. Great!
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NED, yeah to 3 years ned. Celebration in order! Good of you to babysit that scratch. I bent over to garden on Sunday and poked my implant on a rusty tomato cage wire. I didn't feel it due to no nerves numbness. Welll I have a inch scratch and am really babysitting it. Of course it would have to be the LE side, OH BROTHER! GRRR. I am not sure if it damaged my implant.
So sorry about your beagle, those little dogs are so entertaining. I am sure you will always have fond memories of her to draw on.
Kitty, Trigger thumb is well known when you are on AI's. What is not well known is your doctors knowledge. I hope he is receptive to learning form patients. Educate, Educate, Educate!
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whew!!i've been gone, just a little bit, and you guys havebeen doing SOME typing!!@Kira: so sorry you lost your job.. what ajerk that guy was!glad your dads; a lawyer, and had you write whats; right!!glad to hear your mom will be taken care of.. still laffing about the hone depot cart!!we could use one here, from time to time..DO go for unemployment checks, even JUST to tick him off!!and@gottalove: im so sorry to hear about your beagle.. its so hard losing our furbabies......hugzzzz3jays0
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Hope someone can help with this one. I just had my 2nd session of MLD with the LE therapist yesterday. I was feeling pretty good but a few hours after getting home my arms were really starting to hurt. Then I noticed that my face was all puffy. Can LE cause puffiness in your face? It feels like my head is (over)stuffed with cotton.
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Wow, Kate, how puzzling. How was the MLD pressure - light? Did she work on one quadrant, or more? Did she clear your neck first? Tons of questions, but these details can make a difference in how your fluid moves. I'm sorry to hear of the puffiness. Maybe you can call your LE therapist, since she is following your case.
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I agree with KC and think your therapist would want to know. I have nothing to offer except to say that I am sorry you are experiencing this. Hope it is temporary and goes down overnight.
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She spent a lot of time clearing the neck first, then my torso followed by good first and other arm (the one with more pain last). The session was an hour long and she used a very light touch. I suppose the swelling could be unrelated to the LE but the timing was so strange. I have another appointment with her today so will definitely tell her. I guess I need to find out who to call in situations like this, too.
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Aaaugh! Kate, just reading this and hoping by now you have relief and answers both! As if the LE itself is not bad enough...
Anxious to know what you discover. Be well!
Binney0 -
Binney- I just got home from my appointment with Jane. She hasn't had the face swelling with anyone before. She said I could be ultra sensitive. Or it could just be a weird coincidence and could be allergies or something since everything is blooming here in Phoenix right now. As a precaution, though, she cleared my neck twice- once at the beginning and again after she was done. The good news is she said she's seeing improvements in my arms already!
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Had my 3rd session with MLDT & saw the LE Dr. again. This is at a major Med Center hospital. I discovered that Medicare doesn't pay for treatment by a Manual Lymphedema Drainage Technician/Therapist. All they can do is train me in self-MLD. I'm told they will pay for a PT or even an ST (speech therapist for heaven's sake), but not the MLDT. My LE is mainly truncal & chest w/small involvement in left arm. I had BMX & 2 SNB on each side, but maybe the right side escaped? Also was measured for compression bra & sleeves at local garment store. I'm supposed to wear the sleeves when I'm really "active". Still not sure what that means, but I guess I'm supposed to look for swelling & decide as I go along. Maybe that doesn't mean walking indoors on a track. But in Houston that may mean just walking in the park because of the heat. And my Bally's with an indoor track just closed !! Also got gloves, but I'm only instructed to wear those with the sleeves when I fly - not digging in the garden.
The MLDT where I got my garments suggested I should be monitored & have a treatment at least once a month for awhile. I believe she is Vodder trained. In addition to MLD, she uses a pump but also a HIVAMAT 200 Deep Oscillation machine from Germany. Anyone else know about this treatment? http://www.physiomed.us/
SO much to learn. While waiting for my order I can figure out how to submit all the charges to Medicare. What fun !!
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Kate, how in the world are you? How's the facial swelling? Thinking of you!
MinusTwo, that's strange news. Medicare does pay for LE therapy, but only if the therapist is a PT or OT (not if they're an RN, MD or massage therapist). Do look further, because you need and deserve the help. You should be able to find a therapist who qualifies and can see you through the intensive therapy phase. Here's information about finding the therapists near you--call several and check this out with them, yes?
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmGlad your right side escaped! Good! Getting help and maintaining good self-care now may help keep it that way.
Keep us posted! Hugs,
Binney0 -
I spent the last 3 weeks staying at a wonderful Inn in Sylva NC training for my new job but at a higher elevation than I live at (3500 ft compared to 1250 ft) and this week it hit me why my hand was always swelled more in the morning than it normally was when I was at home, it was the higher elevation. I was wearing my gauntlet every day but forgot to take my bandages to wrap. I guess I will be wrapping the next couple of nights to try and get the swelling under control again.
Sheila
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Binney- The facial swelling went away as mysteriously as it came. Thanks for asking. The other good news is I've already got some decreased swelling in my arms and the pain is almost all gone. What a relief! I will see Jane again on Monday.
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Kate, What a great report! I think you should celebrate with some fudge brownies, and bring some to that wonderful therapist on Monday!
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Kate, so glad to hear your arms are responding and you are feeling better! Wonderful that the facial swelling is gone, too. I hate those kooky things that happen in the middle of dealing with real issues. Like we need any other worries!
Yesterday my LE therapist said that from wearing vest, new custom sleeve and glove and wrapping for a week, that my bad arm is now 1% smaller than good arm! At its worst, it had been 9% larger, so yippee!!! I only have to wrap now as needed and she said I can test the waters with not wearing sleeve and glove. I have decided that I am not getting off that train just yet, and once these garments are washed, I am still wearing sleeve and glove for a while, and, of course, night vest all the time. That thing worked a miracle with my truncal swelling after wearing just twice, so I want that baby rewashed and dry for tonight!!
I have a rash right now and pretty sure it is being caused by switching to store brand unscented laundry detergent. I have to rewash all of my new compression tanks, off-shelf sleeves and gloves, and my new custom sleeve, glove and night vest. And I had just done my regular loads of laundry. So my clothes, towels, sheets . . . I may have to wear the custom compression sleeve and glove just to get through the main loads. And I didn't wear the night vest last night, and I can feel the difference today. I am asking my husband to help carry loads from hamper to washer downstairs and transfer wet clothes to dryer. If I do it all, I know I am asking for trouble. Grrrrrrr!!!0 -
Tina: What is the brand/style of your night vest? Thanks in advance.
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Tina's vest was made by Solaris--I think.
Just butting in here.
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Tina- Yippee is right!!! Glad you are seeing some improvement as well. I'm trying to look at the bright side of all this. Reason #1- My DH now knows how to operate a vacuum cleaner. LOL! (I told him it was a "power tool".) Hey, there has to be some perks out of all this, right? Glad your DH is pitching in as well!
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Kate, I had a friend with LE a few years back and when I visited her at home the vacuum was out. It was painted with flames and racing stripes like a race car. She laughed when she saw me gaping at it and said, "Can you tell who does the vacuuming now?!"
Binney0
