GRRRRRRRRR I HATE LE..........
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If, I do not like a Doc or Therapist....I just fire them.....have done that to a Breast Doctor....Good that I did and to the LE Therapist....just go on my own....Plenty of info on the web and you can also find MLD Video's....Liz
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Thanks for the condolences everyone.
It's very dissapointing and sad because this person was a rock during treatment. It's like she got me through treatment and now just doesn't want to deal with me anymore. If that's the case, fine, we will not be doing business anymore.
Hang in there eveybody!
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Does anyone get claustrophobic when they have all their garb on??? Breast binder, sleeves and gloves.. i seem to do ok.... but if I try to put a long sleeve shirt on - I freak out, like someone wrapped me in cellophane... Am I crazy or do others have that issue too???
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yeah, have fired docs but not the LE therapist as yet still ok with her
fired my PCD when all she did was through scripts at me that did not work!
in the process of firing my financial planner though so that is fun~~
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Gma I am ok if I am just wearing the garments (ie at home and not having to put on additional layers). Once I have to add layers of actual clothing I start to get a litte claustrophobic. My sleeves/glove go on at 7am and usually stay on until I get home and finish with dinner/dishes. If I have to wear them any longer I stress out and start to feel like I am in a straight jacket...I usually give myself a 'break' of a couple of hours before bed and sometimes I am a rebel and don't wear any night garments
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Yikes, Sandcastle!
I'm glad if that's working for you, but LE sure is not a do-it-yourself condition! Way too many ways to go wrong, and without good and timely care it progresses to internal tissue damage that can cause big troubles further down the road. I so understand your frustration, but I'll just continue to hope you can find real help. There ARE great LE therapists out there, but they're far too few. Hang in there, and tell us how we can help!
Gentle hugs,
Binney0 -
GMA, I do have problems with constant garment wear, though not always claustrophobia (sometimes, though!) I also get some sensory deprivation issues, so like o2b I also spend a couple of evening hours without my arm and hand garments (still have to use the truncal garments, though, as that gets painful quickly if there's no compression). We need to be kind to ourselves, and sometimes that means compromises. Be well!
Binney0 -
Thx gma
I am sorry about your ' good arm". I DO suspect something fishy is going on with mine and unless I am hositalized and HAVE to have something, I will NOT get BP there. For what ????! So they can write it in their chart ? Big deal! It is not worth the risk to me. I went to an onc dr about a week ago and they insisted on BP. I asked if anyone there had ever did it in the thigh and they said no. I said : " Skip it then"
My thyroid dr wants bloodwork. I asked if it would change anything , and she said she might want to order an U.S and then biopsy based on results. I told her to forget it because I wouoldnt consider having a thyroid biopsy anyhow . She gave me the order and said it was good for 6 mos, and I agreed if I was any more comfortable with the ' good arm' in 6 mos., I might have the test done. This is *NOT* something we can just " Give a try ". As you said, it is lifelong.
I guess in the end, we really do have to worry about ourselves.You take care- and dont do too much !!!!!!
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Cindyl
I posted my review on the brownCREATIVE COMFORT CRAFTERS COMFORT GLOVES ( otc) ordered through amazon on the thread 'ALL THINGS GLOVES and SLEEVES', if you are interested. I like them!
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Binney....I am really doing well.....I was taught MLD by the Therapist....and as I say it is on-line Videos.....I use a gauntlet but not the sleeve Most of the time no one knows I have it except for the gauntlet.....use compresson camisole and it works very well.......Not going to put anymore emotional stress on myself.......I will be two years out of surgery in Dec. No Chemo...No Rads and no Tamox......just going along living my life....Liz
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GOOD for you, Liz!
Bottom line, if anything changes (LE is a sneaky little dickens
), please know we're here for you.
Hugs,
Binney0 -
I know there's another thread discussing this, but there is a difference in MLD techniques also. Now I'm wondering if I was taught the sloppy method, or the right way.
I got a name about a therapist that not only knows about garments, but designs garments. She's president of her own company and has a few people working for her. Will have to check her out.
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gma....just wishing you sweet dreams tonight. My hubby has a cpap and at first took some getting used to but he quickly adjusted and sleep like a dream now. He cannot go anywhere without it anymore. And I get to sleep in the same bed with him again!!!
My "bad" arm is back. It was doing so well when i first had the diep procedure but after the flap failed my arm has slowly returned to it's crappy LE state. The burning on the back side of the arm along with the beloved heaviness has returned. Such a bummer. The hyperbaric treatments are going well. Getting used to it now and seems shorter everyday. Need some Pt on the right arm too from 11 surgery as I have numbness and tingling in the thumb area of that arm now. Never realized i would lose my arms to breast cancer. GRRRRRRRRRRRRRRRR I hate LE!!!
maggie
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GMA, regarding claustrophobic, I try to forget that I wear LE gear but am constantly tugging, pulling and adjusting my glove,sleeve,shaper,swell spots so much that I am reminded that I have them on. Grrrrr. At home I try to wear least amount of clothes on upper body.
Regarding firing BS. Here is my story. I was assigned the coldest, meanest unfriendly BS. She would not hear my wishes and rudely overtook me leaving me frustrated as I left her office. Told my Oncologist that I wanted a new BS and he quietly muttered in some undertone to me that it wasn't correct to fire her and it wouldn't look good in the medical community. He asked me why and I said personal reasons, He said OK but don't mention that we are switching BS as it would create a havoc. I then asked for another BS that had high recommendations, She was a living doll, so sweet and top notch. End of story, oh except that when someone asks me who to go to I always mention who not to go to:)
MAGS, so sorry about your arm acting up. Just got to persevere and it will come around. Grrr...... to that dang arm though.
Nibanna, Let us know how the garment designer works out and don't forget to mention compression tee shirts for us girls!
Binney,Hey you came up for air, I missed you, You must have been busy with family during holidays. And....where's your sidekick Kira, miss her to!
Purple,re needles/ bps, I went to lab and asked for a foot draw, they wouldn't give me one so I asked the lab girl how do you give an double amputee a needle without arms. She just looked at me puzzled and I walked out. I think she is still thinking how do you REALLY give a needle to a amputee
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My DD is a nurse and works in a local clinic. The way things are set up she does blood tests the first 2 hours of every day, so she has a lot of experience. I asked her if she'd ever done foot draws and she said she'd never been asked but she wouldn't if it was requested. She told me the reason was that the veins in the foot are deeper and she'd never been taught to access them. Poking around someone's foot with a needle is not what she wants to do. So - my take on this is that for those who need a foot draw, do your homework and find out where you can get it done before you need the tests. The nurses who refuse to do them might not be stubborn, they just might not want to make you their guinea pig.
For BP when arms can't be used, ask for it to be done on your calf just above your ankle. I've never had it done on my thigh but I would imagine it hurts more there. I had it done on my calf when I was in the hospital and except for one time it didn't hurt. One nurse insisted that it should be done higher on my calf so that did hurt but not a lot.
Leah
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Leah, Thank you for the much needed insight. That reminds me, I always go to the hospital for my foot draw as they seem more experienced there but the one time I went to a lab they refused. Maybe not experienced enough as you say. Yes, I would want someone confident as that is a tricky area. NO Guinea pigs here! I always ask for the girl that loves foot draws and they usually round up one in the hospital.
Oh only if they could do a blood test another way we would all be singing instead of grrring. but until they make us bionic or something well just have to stick with the sticks!
The last time they did it in the upper ankle and that was much more comfy. 0 -
She just looked at me puzzled and I walked out. I think she is still thinking how do you REALLY give a needle to a amputee
I love it hugz!
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Yeah hugz, a classic!
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RE: Online videos
I'm very annoyed that my ins co (and I ) pays for MLD , but my lE therapist has done NO hands on, and I am reading her directions for self MLD and always second guessing myself. I feel like I may as well be following a youtube !
Having said that, I think this may be dangerous.For example, here is one - http://www.youtube.com/watch?v=3PmHuanqbAQ
Seems crazy, no ? Why is she pumping the underarm of the affected arm ? Is this correct ? And 50x ?(yikes)
I would love to know what others who are very confident in their MLD feel about this video, and I would also like to know if anyone has found a decent youtube that might be helpful rather than harmful. I really need a visual.
I am getting very concerned about these different methods. I will post this on the other thread as well in case it is more appropriate.
THX
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Purple - there are some links at the bottom of this page - hope this helps!
http://www.stepup-speakout.org/manual_lymphatic_drainage_massage_lymphedema.htm
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Purple - I had doubts about the effectiveness of my MLD until I did research and came with what I can/will do and it seems to be working. I used the instructions provided my LE therapist to get the order and then watched all the Rovig videos to get a better understanding.
http://nwlymphedemacenter.org/
My LE therapist moved out of state long ago so I haven't seen one in over a year. This past summer I found a massge therapist who helped me through the hot summer months. Insurance didn't cover but she gave me reduced rates since I was going twice a week for three weeks. She was very helpful and DID the MLD for an hour. I incorporated some of her techniques and have even reduced the hand swelling to almost nothing. I can't remember where she trained so don't know what techique she used - maybe Norton school?
I guess you know you are doing it right if the swelling goes down and stays down. It's a process of self education and confidence.
The frustration of figuring out what worked for me was the most annoying part. Can't say I like doing MLD daily but it beats the alternative of pain/swelling.
Best of luck as you figure it out.
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Ohio.....You are right...it is a process....trial and Error....the Therapist that I did use went to the Norton School....when....I did, not go on she showed me how to do HomeCare on my own, and also I do scope out the Video's that has helped me another thing is I try VERY hard not to dwell on all of this....just living my life...Liz
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Can the barometer changes make you feel real heavy with the truncal LE??? I feel so heavy its hard to breathe....
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Gma, yes. Have you got some weather heading your way? Ugh!
Be well!
Binney0 -
Thanks ohio. I presume your therapist did at least one session on you (?) Mine has not.
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Hi there, I have seen a LE therapist twice but didn't have any problem at that point. A week ago I started having terrible pain down my arm and into my wrist and hand. It has stuck with me everyday since then and my arm is swelling. I have started to wear my sleeve (didn't seem to need it prior) and do my exercises, drink water, but I am not getting any better...What now? Help!!
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laquapagirl, give a call-out to that therapist and get in to see her. In the meantime, are you elevating your arm? Use the back of the couch while you watch TV, and prop with pillows at night. Does it hurt when you straighten it out, or all the time? If it's been awhile since you got the sleeve and it's not fitting well, don't use it. Also, don't use it if you don't have hand protection (glove or gauntlet) as that can drive swelling into your hand, where it's harder to deal with. Keep us posted, please!
Gentle hugs,
Binney0 -
I'm sorry for taking up this page with crazy questions, but here is another... I think I am coming down with grandson's bug - Or is the tightness in the chest just the LE?? no fever as of yet, that is what kinda worries me.. usually we are greatful for no fever, but a fever is what fights off the bug, isn't it? ... Is there any extra precautions to take with flu bugs when you have LE?
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purple, my LE fellow did massage in many places, but only used a towel tucked under my back to work the breast. I was fine with that and he also used one of those cool LE machines with the blue colored chest vest and sleeve. Since last May, nothing has made my breast go down much. I've just kinda gotten used to it although it does sort of spill out of my bra by the end of the day :-). I don't know if you have looked for anyone else, but I know the first lady I went to never saw me do my own MLD and when my next guy did he told me I was was to rough with myself and showed me a better way.
On another note, I am still waiting for the swelling in my two fingers to go away. I have "trigger finger" every morning and it makes me feel old. I also stabbed myself in the palm with a screwdriver a couple of days ago and got scared as hell. I know there is no needles, but how about big gashes in your palm????0 -
Rockym - OUCH - make sure you keep it clean and if it starts turning red - get in right away... Cellulitis is no fun and I just got it from a bug bite on my elbow!
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