GRRRRRRRRR I HATE LE..........
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I'm single - no DH. I complain to myself and still get frustrated over the new set of guidelines for life with LE.
I do have my sisters to support me through all this 'stuff' (both nurses) and they really try to understand but it's hard to communicate the 'grrr..' factor without sounding whiney and ungrateful. Yes - I know what to do but that doesn't mean I want to do it. Can't I just have one 'normal' week on occasion - like a vacation? No MLD, no sleeve, no worry? Nope - ain't gonna happen. This is it - it is what it is. Don't like, didn't ask for it, still figuring out how to move on. My response to almost every outdoor activity is 'I will be there but can't promise how long'. Between the AI (w/ hot flashes) and LE response to heat I am becoming an indoor person. Finding I am watching more movies on Netflix - alone. Not much of a life right now until I can figure this out. Looking forward to cooler weather.
Travel - I had a big anxiety attack when asked to travel internationally. It was just the unknown. Now that I am off the hook with that trip I realize I have the tools I need and could have probably made the trip. It just wasn't the right time.
PTSD - From the beginning, I knew cancer was not the most traumatic thing that ever happened to me but it is the most life changing. PTSD (for me) was the result of a traumatic event - now a sad memory. Based on past experience, LE doesn't fall into my definition of PTSD. I know I can deal with trauma - still figuring out to deal with the life changes of LE. This is so different. Depression with self pity - yes. Anger at the restrictions - yes. I'd call this more of a grieving process for the life activity/freedom I lost. Can I come to terms with this? - probably. But I will always grieve for the freedom of the past.
No answers here - only thoughts
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Just got sleeve and glove today.. I hate them already.. What goes on first glove or sleeve? I have 1 more visit with therapist Thursday then I guess i'm on my on......My sleeve ia custom made but the glove is off the shelf...
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Hildy, hello! I'm so sorry you're considering membership in our Sorority of Swell
, but I am glad you found us.You're right to stop wearing the garments. As for just the gauntlet removing swelling from your hand, that'd be a huge NO--in fact, it might push the fluid into your fingers, where it's awfully hard to get out again.
So until your appointment with the trained LE therapist, don't wear either sleeve or gauntlet. In fact, if they will accept a return at this point, just return them.Here's why. If you have LE, ordering garments is a step that happens AFTER therapy, when the swelling has been reduced. That way measurements will fit the reduced arm and hand. Since you have experienced swelling in your hand, a glove, rather than a gauntlet, will probably be the way to go.
In the meantime, elevate your arm whenever possible (on the back of the couch while you read or watch TV, on pillows at night), stay really well hydrated, do some deep abdominal breathing whenever you think of it, and try not to strain your arm.
LE therapy is a specialty, and both thorough training and experience help make a LE therapist good at what s/he does. It's no guarantee of quality care, of course (since some people veer from their training, especially since most LE therapists are not supervised by anyone who knows anythiing about LE), but it's the basic starting point for considering someone who can evaluate and treat you well. So, no, not an obsession at all, just basic standard of LE care. Most of our doctors have learned very little about LE and tend to be dismissive of it ("I saved your life, what are you complaining about?!"), so maybe it would help to share some LE information with them. Here's a page written for doctors by a doctor with LE:
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htmPlease keep us posted, and tell us how we can help!
Gentle hugs,
Binney0 -
Tangela, hello!
Usually the sleeve goes on first and the glove over it. When you first put them on wear them only for an hour, remove them and check your arm for any red marks, new swelling, aching, whatever. If all's well try them again after a bit for a couple of hours. Keep on checking and increasing the time until you're sure they're fitting well. Here's information about how they should fit:
http://www.stepup-speakout.org/proper_fitting_of_lymphedema_garments.htmDo take them with you on Thursday and have your therapist check the fit too. Congrats on being done with therapy and "graduating" to garments! That's progress, at least.
Be well!
Binney0 -
I've been (happily!) buried beneath a crowd of kids and grandkids the last several days (with the wrecked kitchen still non-functional--hmmmm!
), so coming back to Tina's dilemma and the amazing response to it has been really heart-wrenching. I sure can identify, unfortunately.KS, this line really says it for me:
Any one thing is trivial, and my family is amazingly tolerant and adaptive, but the things add up and the compromises become oppressive.
They add up. One day I'm doing fine, and then I hit the wall when that "one more" trivial thing is added to the mix.
I think that's the nature of "chronic": that up-and-down, that coping/hitting the wall. For me, the biggest task of adjustment is exactly that: knowing I won't always be on top of my LE or the emotions that it creates.That said, some things do help. For me, a major one is consciously taking pride in the way I'm handling the daily LE challenges, limitations, adjustments. The truth is, as we get better at handling all of that we really are becoming women we can admire.
At least, if it was someone else doing all this we'd admire them--shake our heads in awe and say, "I could never do that!!!" But we're doing it!
Ragged, sure, but moving forward. And even helping each other move forward too. LE is indeed "breast cancer's dirty little secret," but we can also take "secret" pride in mastering the skills we need and getting creative about the limits it imposes. When I can manage that attitude my DH and my whole family are much better at rising to my very real needs and accepting the very real limitations it puts on all of us. A few strictly practical thoughts:
Tina, I don't sit in the front passenger seat in the summer. It makes me swell and cry too, so I gave it up. It can feel either lonely or cozy to sit in back--my call.
Cookie, have you seen the Juzo tie-dye sleeves? Kinda fun, lots of colors:
http://www.brightlifedirect.com/p4297/Juzo-Soft-Tie-Dye-Armsleeve-20-30mmHg---2001CGtd/product_info.htmlThere's a book written specifically for caregivers/loved one of people with LE, and it helped steady my DH early on. It's thick (as you can well imagine) and comprehensive, well-organized and yet easy to understand. It gave my DH a clear idea of what-all I deal with on a moment-by-moment basis. It's available from the NLN, or you can order it from a bookstore.
LYMPHEDEMA CAREGIVER'S GUIDE: Arranging and providing home care
by Mary Kathleen Kearse, et. al.Tina, your solution of calling ahead and asking them to clear the decks is incredibly sane. You may be the first of the four of you to need an accomodation, but the way life happens, it's a sure bet that their lives will be changing someday too. All four of you will be making accomodations for each other as you move forward in your friendship--it's just the nature of things.
You all are hugely important to me. And by extention, to my whole family. Thank you so much for being here!
Binney0 -
Binney -- you are absolutely right. I am proud that, despite being hopelessly bad at it at first, I learned to I wrap my hand and I get better results when I do it than when my (extremely good) therapist does. And knowing how to wrap makes me feel like I am better equipped to deal with the ups/downs of LE. Six months ago, when my hand suddenly flared and none of my garments fit, my hand getting bigger with every day passing day while I waited to see my LE therapist, I was absolutely panicked.
This past Saturday, I stupidly dealt with a cooking emergency with an unwrapped hand. Not sure whether it was the activity, the heat of the stove, broken A/C or whatever, but my pinky suddenly became bright red and very swollen. Put the offending pinky in cool water for a bit in case it was burned (don't have much sensation in that finger anymore), then wrapped and elevated it for a couple of hours watching a video with my family, knowing that I had a nice big old bottle of antibiotics if things went south. Not exactly what we had planned for Saturday night, but a heck of a lot better than what would have happened if the same thing had happened before I knew how to wrap or had an antibiotic RX. (By the way, the pinky wasn't burned and was back to "normal" within 36 hours .... LE ... go figure.)
KS
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Just to add to Hildy--poorly fitting compression can trigger LE: and there is the risk of overlapping compression at the wrist with a sleeve/gauntlet, that will trap fluid in the hand. So, don't wear them--as Binney said.
You said your PT was NOT trained in LE, perhaps you'd be best served if you saw someone who was, or query her about her experience with LE
Here's a way to check out a qualified LE therapist--someone with 135 hours of training:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Hildy, my LE came on early, in the midst of axllary web/cording and a seroma and I was told that it would resolve after rads but it didn't. Rads causes both acute and slow damage to the lymphatics--lymph nodes don't recover from radiation--although the collecting vessels survive it, and radiation fibrosis tends to come on slowly, and it's why we need to stretch out the radiated tissues all the time, to keep from losing the flexibility. When they radiate the supraclavicular nodes, all the nodes on that side that drain the breast/ arm take a hit. So a good LE therapist is a great thing to have. It doesn't mean inevitable LE, but your doctors are concerned, and the sleeve/gauntlet already caused hand swelling so your "lymphatic transport capacity" is not quite up to the task.
We all sure did respond to Tina, and some wonderful posts were created. I'd love to see the wisdom put into one place.
GMA--I don't know if I have PTSD--but I sure can get enraged when reviewing the events that led up to my LE, and today, I was in a warm room, and kept glancing at my arm, where I had the cellulitis, to make sure it wasn't just the heat that was making me feel hot.
Moogie said that LE tends to make anxious people more anxious, and I'll second that: it's a loss of control and hypervigilance.
Binney--you were missed.
Happy 4th to everyone.
Kira
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I noticed swelling after trying to do knee pushups (can't do it, too much weight.) I did MLD and got the fluid to move down the trunk.
Should I ask my lymphedema PT for a compression sleeve for use during exercise? I'm going to have to email her pretty soon.
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Nibbana, if you noticed swelling with exercise, and the problem with pushups is that they put a lot of weight on the arms--almost your body weight, so they've very stressful and "uncontrolled"--unlike weights, you have no idea how much weight you were moving--I'd suggest telling your lymphedema PT and discussing the appropriate exercise and if you don't have compression garments, consider them.
Glad you got the swelling down with MLD.
Kira
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Hello from the hot as _____ South. Our AC is not working. It has to be replaced and it's looking like two weeks or more. I was already puff before this heat wave but even my good leg is puffy now. I have been worried about my LE. Found a flea on my foot last night..great, Something bit me on my LE leg, and to top it all off I step on something and didn't realize till later that it cut my heel. I have been keeping neosporin on all. I still am itching like crazy and can't figure out what is causing it.
So I guess the month long weight to get in to be evaluated is a God send. I have my legs up as much as possible but I leave to go out of town again tomorrow. I am wearing my tribute at night but no way with this heat am I going to wear the new thing.
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Tina--I hope you made that call to your friend for room. I have finally learned to do so when I travel. It has made things so much easier. I have been traveling and not on much. I do hope you call me after you arrive. I would love to see you if only for a few minutes. Kathy Kearse who wrote the book on caretaking that Binney mentioned is presenting at our support group in August. Wish you and your husband were going to be here. I do recommend her book. Becky
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Well ladies... My bite went down and my LE therapist said, I did everything correctly. By the time I got to him this afternoon there was no swelling at all... Now for the OH MY news... he retook all my measurements and my upper arm was swollen.. I told him that's what happens when he leaves me alone for a week LOL.. Feel pretty good tonight but things are still swollen.. I need to start wearing my sleeve for a bit especially when I work on computer. He said what you said Binney, "When you first put them on wear them only for an hour, remove them and check your arm for any red marks, new swelling, aching, whatever. If all's well try them again after a bit for a couple of hours. " Anyway I'm glad he's back..
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Tina, can't add to what everyone else has said, but just letting you know I get it too. Hope you enjoy your trip to your friend's.
Hildy, I had the same proble, my hand was swelling. My LE therapist sent the glove back to get the binder removed from it. That was causing a problem. It still swelled a little though, and he made me a pad to put inside the glove. That resolved the problem.
After reading some of your comments, I am getting nervous about the new glove and sleeve I will be picking up soon. My PT ordered me a higher compression in the glove and the lower arm, left the upper arm at the lower level. I hope it won't cause me any problems.
Happy 4th of July everyone! Brownies all around,0 -
You guys are just the best! I know that except for the info I get from my LE therapist, probably 90% of what I learn comes from you and the SU-SO site. You guys got me to the site, which helped me find my therapist, so I don't know where I'd be without all of you. And my therapist learns from you, too! She thinks SU-SO is a great site. She was very interested in ALT and I sent her the link to that. I feel like I have had great mentors here in how to actively manage my LE. I do take pride in that, and I think I mentioned a while back that my therapist trusts my instincts, said I know my body and definitely am proactive. She likes that in a patient.
Shortly after we got in the car, I called my friends. I spoke with the husband and requested a clear table to put my medical supplies. He asked how much room I needed and I told him about the size of a card table. He said they have a card table, and I said that's a perfect solution. He was completely fine with it. So, that issue is remedied. I know if I need to, I can move some things to make space for other stuff, so I feel good.
The other thing I did last night was go shopping and buy healthy food so I wasn't stuck buying bad food at rest stops or convenience stores. I made simple sandwiches. We brought the cooler up from the basement and loaded it up. I bought a small case of bottled water, and put it behind the driver's seat so they are handy. That took further pressure off whether I would swell from the food. Dinner was out, and I just tried to keep it to something reasonable.
Finally, my husband and I agreed to take breaks after an hour of driving and get out of the car and walk a bit. We actually held to this, except for a two hour period when I napped in the back seat. After being on the road 7 hrs, we still arrived at a great stopping point.
I will post on the Kick Butt thread, but wanted to share how I felt at the end of the day. I was just slightly swollen, and that was probably because I let myself eat a few pretzels in the car. By the time we arrived at the hotel, I had just under 7,000 steps on my pedometer. My husband couldn't believe it. After dinner, my goal was to do more walking, and in the process I found the fitness center. So, I got on the treadmill and did 4,000 steps and then cooled down by walking around the hotel some more. By the time I got in bed I had clocked 12,436 steps. Lots of water and thorough MLD. I feel very good! Husband arrived in good spirits, as I think stopping and walking helped him, too!
Becky, I wouldn't miss meeting you for the world! I will be in touch.0 -
Gma and Tina~good news day.
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Hey Tina, Sounds as if you have learned how to travel! I can't wait to hear from you. From PA to TN you will be on I40. At exit 417 you will see the sign for my dam Cherokee. Also the name of my college. I expect a salute from you as you pass. I can't wait to hear from you. Cell phone is turned on and waiting to ring!
Made a trip to FL with long drives. Heat was brutal but made it with no swelling. My measurements were the same today. I ate with little sodium. We now pack food and eat at rest areas. Yesterday with the 104 temp we decided to eat at a salad bar restaurant instead. With all of the LE junk I keep getting a bigger and bigger suitcase. I am going to fly for the first time in Sept.--a yr and a half out from LE. That will be my last hurdle. My jovipak is so big that it will have to go in check in suitcase. So I will worry the whole trip that my suitcase will not show up. I have never gone a night without it on. I am considering wearing it on flight but it restricts my movements so much that my sleeve/glove would be more comfortable. Grrr
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Did everything I was supposed to yesterday - water - MLD - Flexi - steps - elevate/stretch. Arm has some swelling this morning. Weepy all morning. Is it Aromasin? or thyroid? or life with LE?
Listening to comforting music, waiting for an out-of-town to arrive for the weekend, have family event today. Gotta get out of this funk.
Guess I'll do extra MLD today? More water? Will repeat what I know has been working.
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I just got diagnosed, have first episode and am so depressed. Just have no one to talk to and my family thinks i am being over sensitive. I just don't know if i can get though this alone. My therapist is not very helpful. She feels that my case is so mild, getting worse, and i feel like my life is upside down. I had an exercise routine, and now can only do cardio. I just don't want to even go out. I feel like a freak. I just took so much pride and beating cancer and being health and fit. Now this happens after 5 years. I just feel i'll never be normal again? My therapist just does massage and hands me fliers. I am waiting for my off the shelf sleeve, that they wanted to mail to me!! i said no, i want to be shown how to put it on. I am reading what i can find on the net, but it seems so depressing and confusing, everyone says such different things. Any advice is appreciated.
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Ericamary, I posted to you on the thread you started. Everything you're feeling is so common and so awful. It's not "just swelling"--it's a chronic disease, and can clobber you emotionally, and most people don't know anything about it.
It will get better, it will.
Here's a link to emotional reactions to LE:
http://www.stepup-speakout.org/patoconnorcopng.htm
When I was first diagnosed, I used to watch the self-care videos at the Northwest LE Center a lot--watch them in bits and pieces and you'll learn a lot, and her information is good.
http://www.nwlymphedemacenter.org/
I think your exercise routine just needs some adjustment--I hope Carol comments on how to tweak it.
Hang in there, you'll get the information you need and your life back. On the Northwest LE center videos, JoAnn Rovig says when get control over our LE, we get our power back.
Kira
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Happy 4th!!! My 5 and 2 yr old grandsons are here with DD and SIL. I am in charge of the BBQ - trying to remember to use my left arm to turn the meat... oops.. I guess I lost fluid again
I was down 3 lbs this morning and breast is smaller - started using my sleeve today...seemed to be ok.. 1 hour on with only one crease above the elbow (where the swelling starts) but went back to normal pretty quick. Got to go back to work tomorrow: (computer) and have LE therapy and eye appt. come home to all the kids... I enjoy them but am getting really drained - the family seem to suck out all my energy - 3:30 is going to come early tommorrow.. 0 -
Thanks everybody for all the help--it is greatly appreciated. I'm a little cranky that my hand swelled due to me trying to prevent swelling, but then again, I ought to know by now that isht happens.
I'm not sure how this isn't lymphedema rather than inflammation at this point, but then again I don't know what I'm talking about....but what else could it be at this point?
I'll see the PT tomorrow and see what she says. To clarify on her, she has lymphedema training from both Chickly and Leduc; she does MLD on my arm as part of PT. She's been a lymphedema prevention advodcate for years, I just don't think she has an official certification. (This is the part where my RO thinks I'm obsessing about the certificate.)
In fact, I just googled her and she's one of the experts in the exercise section of BCO. (is that okay to say? Not sure if it's kosher to name names in conversation on BCO, I don't tend to run across them on the threads much, unless somebody posts asking for a specific recommendation in a geographic area....)
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Tina, what a fabulous report! Hooooray for frequent stops while driving!
Ohio, hang in there. I hope the weepiness steps aside for some optimism, but it sure is understandable. The heat cannot be helping matters. Can you get some steps in, indoors? Exercise always helps my mood. Let us know how you are feeling on Thursday.
Ericamary, you CAN do more than cardio with LE, you just have to be very smart about how you incorporate strength training into your fitness program. At the moment, I am not working from my normal computer, so I don't have all my resources, but sometime Thursday I will try to post an explanation of best practices for strength training when you have LE or are at risk of getting it. I'll drop some resources in there, too, so you can learn plenty. And it sounds like you'll need to print a document or two to give to that therapist, who may not be up to date on how beneficial strength training is for those of us with LE. What was in your fitness routine before your LE diagnosis? It absolutely stinks that you got LE --everyone here can sure relate to that -- but it doesn't mean you have to give up your workouts, just modify them to protect yourself from unintended LE consequences of some weight lifting or body-weight exercises.
Carol
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Day 2 of weaning onto the sleeve LOL.. How do you ladies cope when your "inner child plays with matches" (have a "hot flash")? Man it makes my arm feel weird. I just want to strip eveything off including the sleeve.. I can do this..I can do this..
Ericamary - I just find cool places to walk everytime I can get a spare moment... I have gotten out the dance revolution and put it in beginning mode to get heart pumping.
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I am jonesing to run again, but don't dare till we get the LE treatment figured out. They don't want me to run without a sleeve, and I can't wear the one I have...meanwhile, I feel as though the work I did keeping active during chemo and the first part of rads is just circling the drain. Ah well...
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Hildy - I understand the circling the drain part... It does seem to spiral, but my nutritionist reminds me that I need to do what I can, when I can..One step at a time.. We WILL beat all this and be able to do what we can.. It definitely has changed my "Normal" Life objectives... I am here... I can visit with my grandsons.. see my family... and some times enjoy walking in the park... I am alive and sharing with you all.. I couldn't do this alone and without all the wonderful ladies that are here.
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Can I get the sleeve wet while wearing and what are the rules as far a how long I can wear it wet?
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kira,
A few posts back you mentioned when the superclav area is radiated, then those nodes take a hit, and that nodes don't really recover from rads. I think this is what's happening to me. So along with the cording problem from the surgery, my left superclav area must also be damaged. Does the body ever make other pathways to drain the lymph fluid ? When I do the MLD, where am I supposed to be directing the fluid ?
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Well, I saw the PT today, who did MLD and taught me how to do it as well. She gave me an Isotoner therapeutic glove to try, and even that seems to be too much--grrr. Arrgh. (Sorry, Buffy fan. All the shows ended with a Grr. Arrgh., and I find myself unable to Grrr without an Argh.)
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just wanted to say GRRRRRRRRRRR I hate LE!!! My hand swelling is out of control...I really do not want to wrap again as it still seems to not make the hand go down enough. What a PITA this all is
Maggie
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