GRRRRRRRRR I HATE LE..........
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had chemo yesterday, so today is the neulista shot , I have started my Claritin earlier this weed and will continue on for the next 5 days to see if this helps with the bone pain. Or longer if needed. Thanks for the info on the cranial massage group, I am going to check in on that for a location or specialist near me.
I am going for a lymphadema evaluation since I have fluid build up again at the surgery site, this drainage has been ongoing since February. The last biopsy was clear of the bad cells, but guess I can ask if there is some exercise I can do to minimize the fluid, my surgeon thinks I am still doing too much. Any suggestions before I see the specialist?
Ok gals have a good day and happy Mother's Day this weekend !
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having my evaluation on Friday, been down with fatigue and 4th chemo round since Thursday, but feel swelling still pretty unusual and the dr gave me a script to see what's going on, hoping it's not but will have peace of mind at least.
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Hi ladies (and men, if you're here too
), It's been way too long since I've posted here, but I'm hoping things are headed in the right direction now. I went several months ago to be measured for sleeves and gloves, and it was a pretty exasperating experience. I pretty much just gave up on finding anyone local who could help me, and haven't done much of anything as far as LE since. The closest option was about 2.5 hours away, and I just couldn't do it. You can guess how swollen I am, and the hot weather is definitely making its presence known! But yesterday a friend went to the dentist and noticed that the receptionist's arm was wrapped. She asked if she'd hurt it, but it was due to LE, and my wonderful friend told her about me and the difficulty I've had finding someone. Turns out she found someone about 45 minutes away, and she said she has been a lifesaver for her. She gave her the number, and I talked to her today and may get to see her next week.
I feel pretty stupid for just throwing up my hands about it, but I am so hoping that this is going to help me get it under control and learn what I need to in order to manage it. (and I'm pretty sure she knew that arms are upper extremities LOL which was not the case with the person I saw a few months ago) 0 -
Yay, Aunt Paula, for such a great turn in a hopeful direction! That's great, great news.
Isn't it amazing what a so-called LE therapist might not know? I talked with a LANA-certified therapist in my initial search for help, when I thought my LE was 'just' truncal. This lady told me that it's not possible to have truncal LE without arm involvement. I was stunned; even I knew better than that. I think it's such a problem that certification for LE therapists can be so loosey-goosey. There are some wonderful, top-notch therapist schools that do the job right, but there are also some umm, marginal schools out there, and too many rehab clinics allow their CLTs to 'train' the PT assistants instead of having them get proper qualification. We all deserve better. End of rant. Sounds like you found someone who's competent, and that help is on the way. Happy for you!
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We do deserve better!
Finding out that some people have to drive over 2 hours to get to a therapist floored me, that's rough.
I'm wondering if there is an increase in LE. My LEPT is over worked, and there are 2 LE therapists for this suburb of Indy completely booked. Short stretch wraps at the supplier here are on back order. I asked my therapist if she thought there was an increase but she thinks it's due to the increase in BC survival. but I have to wonder if there isn't some other reason such as node removal techniques, current radiation therapies or even environmental involvement.
I though I would be asked questions or given something to fill out so that magic someone who figures these things out would add my info to the already collected data to determine a commonality. But now wondering if anyone is even collecting data. And, feel like LE is such a stigma the Drs. don't want to have to admit it happens or that LE has anything to do with them. I'm dumbfounded. With Breast cancer now big business you would think they (whoever they are) would be gathering statistics..
Had PT for cording yesterday. OUCH! and OUCH! Cording another BC gift. Thought I would be sore for hours but felt fine with in a few minutes of leaving the office, and woke up fine.
I'm tired of this and it's just begun. I'm not in pain, I live 2.5 miles from the LEPT, I caught it early, I have good insurance, I'm lucky but I don't feel lucky. I feel like I've been grounded for the rest of my life for something I didn't do.
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I love the way you put that--"grounded for the rest of my life"--this is how I've been feeling too.
Thanks, Carol, for the support---I have felt so frustrated because I've needed to find a therapist who knows more than I do about LE, and it's been so discouraging--if I'm the most knowledgeable person in the room about it, we're in trouble!
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I love 'grounded for the rest of my life,' too. Totally true!
One reason there are too few LE therapists is that the PT/OT lobby managed to limit Medicare and insurance reimbursement for LE therapy to therapy provided by those professions; what's more astonishing is that they've also managed to enable said reimbursement without actually requiring at PT or an OT to take LE therapy training. Many do, of course, and no responsible rehab clinic that offers LE therapy would do so without some kind of qualification. But they're not really obligated to screen for one of the better schools. And any PT or OT can hang out his or her shingle as a lymphedema therapist; the credential 'certified lymphedema therapist' by itself means little unless we know exactly what the training was, and by whom.
Some women here go to massage therapists who have taken LE training--they're welcome at the various schools, but they will never get a lot of business, as they cannot qualify for third-party reimbursement. Too bad, because massage therapists often have a gift of touch that adds great skill to manual lymph drainage.
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I initially went to a massage therapist who had LE training, as she was the first person I found locally. She has LE in her leg from a bicycle accident, so that sparked her interest. She billed Blue Cross for me and it was covered, as I do have coverage for massage therapy. I stopped going to see her because she just did MLD and I wanted advice on exercise, garments, etc and she was not able to provide me with that type of advice. I did pay her first and then got partial reimbursement from Blue Cross.
I too, like the term, "grounded for life". So true. Aunt Paula, I wish you luck with this new person and hope it works out for you.
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I've found a lot of good information & support at Wear Ease. Attached is their information page. Not trying to solicit business, but thought it might be useful.
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hello sisters,
I have my first appointment with a lymphedema specialist at the hospital tomorrow. I whined and beeotched on another thread here about my first flare.
I spoke with the therapist today and she said that likely, what they will do is end up wrapping it, keeping it on overnight, and then coming back in the morning to get it unwrapped and measure. That's good news because I am flying in September! So they're going to get me measurements to get me fitted for a sleeve. I'm going to order the most of obnoxious, colorful, eye-catching sleeve I can find. FU cancer!
I've read a lot of these posts and it's giving me a lot of strength and information. It's so frustrating to be undergoing this disease. I don't even want to try to tell my friends or explain it to them because who can understand? Nobody but the ladies here.
I have a very sick twisted sense of humor which has served me well all along. It got me through. I admit however that in the last few days, with this new development it is starting to fail me. And that scares me because it is my major coping mechanism. I will not become morose or bitter, but only because I'm too pissed off to give cancer the satisfaction. Not because I'm strong. I feel weak and useless. And swollen.
Hugs to anyone that need it today!
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I have tie-dyed sleeves! They are awesome.For flying,, you will want to have either a gauntlet or glove too. You don't want the sleeve pushing fluid into your hand while flying.
I have to agree with you: I maintained my spirit until I developed LE. Geez, cancer isn't bad enough,,, now I have THIS to deal with for the rest of my life. Fab,, just fab,,,, The first few months or so are rough, while you work to get a handle on it. Finding the right therapist, garments, MLD etc etc. Then it will become part of the new "normal",,,,
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And DON'T forget all those teaching moments when people ask WHAT'S wrong with your are?? Liz0 -
Bippy - welcome. Sorry you have to join us. Hope you like your therapist.
sandcastle - good point about the teaching moments. But do I "teach" about the LE or the neuropathy? Both are such fun gifts from BC.
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minus....I would, like just one day that I, could go out and not be asked! For me It is a constant.....and they just are not learning...Liz
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Sandcastle - YUP, we do understand. People can be so rude.
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I was on the elevator this morning wearing my sleeve and glove. It is leopard print. A co-worker almost passed out and asked me if I got tattooed? I just told her I was trying to make a fashion statement along with my leopard print earrings.
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Good one, shorfi!
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my, Husband had Knee Surgery about a week ago......I was tending to him and the Nurse said....What is that your wearing??!! To be honest I was so surprised that a nurse asked that question....so I told her and her reply was...Oh Yea...my Aunt use to wear one....WTF!!! Give me a break....Liz0 -
went and had my LE evaluation yesterday, and the PT nurse assured me I did not have lymphadema but have two large seranoma said that need draining again, so I sympathize with your struggles, know you are in my thoughts and prayers. Thanks for the support in going to get the eval.
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I love your response, shorfi!
Still waiting for doctor to fax order, but feeling hopeful that I'm going to get this under control. It doesn't hurt that it's a beautiful day and I really want to be out working in my yard!
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Yep yep yep. I have not read through this entire thread but I think I can relate to everything being said. My saving grace with this fat arm was that my other arm was ok and my left hand was pretty and I occasionally get compliments on my "delicate fingers." Well, now I can kiss that goodbye because after my recurrence last year I now have it in both arms. I've had a really good attitude through everything this but this is soooooooo maddening that I'm going to snap. l feel like the most disgusting person ever. 😩😩
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jillts, rage is entirely appropriate, given this turn of events! 'Crappy' is putting it mildly. But let's call LE disgusting, not you. Hugs--I think you know what you need to do, so hugs are the best response I can think of.
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Thanks so much, carol57. Good reminder that I am not disgusting (no no no!) but this condition sure is. I certainly didn't mean to imply that anyone else should feel disgusting either. Was just having a moment!
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I'm pretty sure that everyone here has had that very moment. We should all pause for a moment to say 'ick,' to express our collective feelings about this stooooopid and disgusting condition.
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Yes.....It all is a downer!! NightTime Compression!! That is the Worst.....Can't I just sleep like a NORMAL person... Then for ME there are those people always asking...."What is wrong with your Arm" It happened Two times in one day last week....Can anyone in Jersey mind their own Business?? Liz
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ugh, just wanted to share my "grrr" for the season... with the 80 degree weather has come a return of the sleeve creepy-crawlies where I feel like I just have to rip it off or I'll lose it. I'd adjusted (mostly) while the weather was cooler, but the relative heat has not been nice
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sandcastle- I agree. I think people in Texas are just as nosey. I was asked today about mine, and before I had my brain filter the question I was answering with an indepth answer. He was very sweet and told me he wished me the best.
I am going on week #2 with my flexitouch, So far I like it, I can get in it in under 7 minutes. While I wait for it to finish I read my nook and try to relax for the hour. It's definitely not the sexiest thing I've worn, so I know it's not going to turn my husband on at night. Lol.
Hope everyone is doing well.
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Hey, Sandcastle, if anyone in Jersey is nosey, send them to Sayreville and we can together hit them upside the head! I think a little threat should be permissible especially in this weather
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Proudtospin......I keep thinking it is the Salt Air down here.....Liz0 -
I put this in the sleeve and glove thread but realize that the heat thing was here. When I have on my cami and sleeve I don't need a coat when it's 30 degrees, so I started looking for alternatives for the cami that wouldn't be as thick and I found this: http://www.hanes.com/onehanesplace/womens-shapewear/new-shapewear/popular-shapewear/bali-camisole-top-24381. Love it, nice and airy, but it isn't going to last very long and it has to be handled gently because it's easy to poke a hole in it so I'm getting several more. At least when I'm going to be in and out and dressed nice it's an alternative.
I used to live for winter to end. Now not so much. Poison Ivy, bug bites, heat rash, sweat and the sun. Trying to stay positive but I'm not pulling it off more often than I would like. I miss driving my car with the top down on a really hot day and feeling the heat and the cooling wind, I haven't had the top down but a few short drives. We actually traded in one of our vehicles because of me, BC and LE. Our Jeep didn't have a top or doors and the suspension was crap. I couldn't ride in it anymore. We bought a more sedate Jeep, a Jeep for old folks, an automatic, a Jeep with a roof and doors and a good suspension and room for walkers when we need them. A brand new Jeep and I hate it for what it represents. I never thought looking at new vehicle in my driveway would cause me to cry.
I'm not in a bubble feeling sorry for myself, I know things could be so much worse, I could start with the fact that there are to many people that can't afford a new car just because they can't stand the bounce or the sun and escalate from there. But I do feel sorry for myself and HATE LE for doing that to me. This is not who I am or was, this isn't who I want to be.
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