GRRRRRRRRR I HATE LE..........
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Linda my hubby could just afford me on insurance and we will go under before the year is out... But Yes I've got some coverage- problem is it is $2500 deductible, so my LET visits won't be covered
I did see him (my LET) yesterday - I got in soon enough - Upper arm and front torso is where the swell is so he is hoping we get it in control before it heads to the arms.
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I always used coconut oil for everything including eating it.
This dr said castor oil and that's what I have been using
And today I feel like its 99% back to normal
I did tell her I used the coconut oil but she said not now,try the castor oil
I kinda like it.
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can you please tell me more about this castor oil?
how do you use it? where do you apply it? how often? where do you buy it? and i don't want to assume anything but is it used to help with lymph swelling?
also, have any of you gone from having to wear a glove and sleeve to wearing a gauntlet and sleeve?
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Mags, did you say you use the Farrow wrap at night? I am still either bandaging or using the Tribute at night, both of which are so bulky, and I was looking at the Farrow and wondering if it can be used at night, and wondered if it might even be thin enough to wear my winter nightgowns with it. I really miss my long sleeved gowns. I have been using the thin Farrow glove with great success and far more comfort than any of the other stiff thick gloves. Is it difficult to get the Farrow wrap cut and sized correctly for your arm? Thanks for any info - these things are expensive so I want as much info as I can before trying them.
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castor oil
Don't no too much about it because it was the first time I used it
Was told by a natural dr.
I applied it to the entire breast,where I had the SNbiopsy and the back of my arm
I did it yesterday and put my compression bra on and then did it again today,first I put a tee shirt on and then the compression bra.
Yes it is used for LE swelling and it sells in natural stores but I have a local pharmacy who had it..a little bottle cost six bucks,but a little goes a long way.
This is all new to me but it worked.
Good luck
BTW I have stage 0 LE
I once read that stage 0 is worst then stage 4...because u don't pay too much attention to it
I DO
Good luck
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Linda--yes I use the Farrow wrap at night. It is comfortable. As far as cutting it my therapist did it for me...it was her first so we took our time to figure out the directions. It is not too bulky and I believe you could use it under your long sleeves. My doc recommended it for flying next weekend as the TSA gives you such a hard time in bandaging. I will go "naked" through security and then put on the farrow before takeoff then she said wear it for a few hours after last landing. Think I bought it through brightlife direct?? I use a juzo off the rack glove with the farrow hand wrap over it along with the arm wrap...hope this helps
Maggie
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mags. Carol may have some flying suggestions for getting thru securtiy. She is our frequent flyer on these threads. If you search under "flying" you should get some ideas about flying with LE also.
Really important to DRINK TONS OF WATER while flying. I know that much. Also a tight underamour mens compression teeshirt is a great idea. Move around alot.
I'd like to get up the nerve to fly one day. Maybe if I had wrapping down to a perfect science and could wrap faster.
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Hugz, I registered for Global Entry, a Homeland Security program. I now am always permitted to use the TSA Pre-check lines, and they do not give any issue over arm stuff. I wore my Tribute through once, which a nasty person could use to hide all kinds of things, and it did not raise an eyebrow. Mostly I am in my sleeve/gauntlet when I go through security. To do Global Entry or any other Homeland Security trusted traveler program, you have to pay a fee, tell all about yourself, give fingerprints and a retina scan, and agree to have them do a criminal background check on you. So it's worthwhile if you travel a lot, as I do, but maybe not otherwise. At the moment, Canadian border patrol is investigating me to make crossing the border into Canada faster for me. Hope my Canadian friends will put in a good word for me, if asked!
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Global entry sounds great for frequent flyers., I think you are talking about the nexus program at the Canadain borders. Well of course you know we will put a good word in for you. Us Canucks are friendly...... except in the hockey rink!
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hugz4u - "I'd like to get up the nerve to fly one day. Maybe if I had wrapping down to a perfect science and could wrap faster."
I so hear you! Flying, for me, is the final frontier of my dealing with LE.
I flew a lot prior to bc and now LE. I haven't flown since. I've driven for 2-3 days to get to places, taken trains but haven't flown.
I'd like to go to Boston in February and again in September … I've looked into taking trains but it really is twice as much as flying. *Sigh*
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And curling, Hugz. Your guys are wicked at that, too!
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mcgis - I went from a glove, to a guantlet, and back again. In my case, wearing a sleeve and guantlet pushed the fluid into my fingers and caused more swelling. After a bit of experimenting I found that a glove, without the sleeve works best for me.
I'm still experimenting though, and still trying to figure out my triggers. Shoveling snow during the 'Arcitc Vortex' sure didn't help. Sigh. Can't wait till spring.
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Dawne-Hope - I'm taking a train trip late spring to go visit Son and it is about 1/2 the price of flying. It's a 28 hr trip so I'm 'slurging' on a roomette (my own private little room that makes into a bed) and a meal pass. If I wasn't opting for the roomette, it would be between 1/4 and 1/3 of plane fare. I'm taking this train trip not to keep from flying but just because I wanted to take this scenic.route for some time.
Where did you check for train prices?
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kicks - I checked amtrak, the roomette too because it's a 22 hour trip. I could get a flight to Boston for $320 round trip. It was $306 for a one way train ticket to Boston.
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Kicks - Thank you. Don't think I thanked you..glad to know you got a good deal.
I am not a good traveler, I get really motion sick. I'm always the driver wherever I go because I get sick in the passenger seat. Whenever I fly I HAVE to take Dramamine … I got so sick coming back from Israel once …that's the last time I ever flew without meds. It was terrible. Anyway … I can't sleep sitting up … so the roomette is the best option … even though it's more expensive. I have a six hour train ride to get to the station that takes me to Boston … so it's a 28 hour trip total. I'll keep looking. Again, glad to know that you got a good deal. xo
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Started working out at the gym and OMG my arms hurt so bad afterwards now just working my legs...
Question for anyone who has lymphedema in the chest or breast area how did you find out? My left
breast always looks swollen just above the breast but the ps brushed it off and I never discussed it
with the lymphedema tech.
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dlia, this is a wonderful article about truncal/breast LE that may help you understand what to look for:
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Am having another flare of arm pain, slight increase in swelling that I can't get down with MLD and Flexitouch and all the other stuff I am supposed to do .... well, OK, I admit that I haven't been all that religious about doing EVERYTHING that I am supposed to do, but things were pretty stable. Today my arm is throbbing, and I don't have a clue as to what could have set it off. And with my wonderful (NOT) care that I have had, I guess I am just supposed to figure it out on my own and suffer silently. There just doesn't seem to be much enthusiasm for getting in to see a certified LE therapist if you have already seen one in the past, especially if you have seen one for a flare after the initial onset. They seem to think you can just teach someone the basics and turn them lose. Well, I cannot do the same maneuvers they do, and the Flexitouch doesn't either. Thanks for letting me vent.
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I would be 'lost' without my Flexi-Touch. It does a better job than I can and as good as my CLET does. You have a Flexi-Touch and are not seeing/talking to your CLET when/if there are problems? I don't 'see' my Guy often but I can call him anytime and talk. I talked with him yesterday about my new sleeves/gloves being ordered (it's been 6 montths since last ones).
I know many say they have more problems during warm weather - I don't - winter is NASTY.
added - Linda - have you contacted Flexi-Touch directly?
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Linda, It's about time someone grrrrrd. We can't have this thread die. Its to valuable.
Your trained therapist needs to know that you have not learned how to control your LE by yourself yet. Have her watch you wrap and rewrap each time you go, or have her watch you do self mld which she should have taught you. Insist on this much in order to be successful. You can ask to video it so you can play it over and over again to learn. Yes... LE is a steep learning curve and we all hate the beast but it is best to chug along so we don't get worse. It's all bad... I know... and it takes a big chunk out of our lives. grrrrrrrrrrrrrrrrrrrrrr is right! Go for it and grrrr all you want. That is what this thread is for. hugz too!
I see my girl once a month just to keep an eye on me. I practice wrapping once a month so I don't forget. So far so good although I feel I am wasting my time and could be doing better things. I would love to try a flexitouch one day but I don't think I am too bad off with my LE yet.
Rest the achy arm and drink lots of water.
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I think that water thing is one of my downfalls. I used to love water, now just hate it. Don't like much of anything liquid right now, including coffee, tea, soda, flavored water .... but I promise to do better. I used to like a splash of lemon or lime juice in my water, but even that doesn't jazz it up enough to be appealing to my taste buds these days.
I really think I am doing things correctly - was even asked if I would be willing to do a video of my wrapping as an educational video at our cancer center, but never got around to doing it. I know I don't do self MLD well because of my CIPN, and DH is probably a little too rough, uses a little too much pressure so I have to continually remind him. FlexiTouch actually does pretty well if I am religious with it, but I got sidetracked because I got very ill for a couple of weeks and just haven't gotten back into the "rhythm" of taking care of myself. And I got a little complacent because, as I said, I was pretty stable. So just was surprised at having a flare out of the clear blue. It is better today, am trying to be patient with myself and not expect it to be back to normal overnight. Just made me grumpy. Now that I think about it, I am still grumpy, just for general purposes!
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Just want to be sure that everyone is aware of the Lymphedema Treatment Act. As of now Medicare does not pay for compression garments. This act could change that. Many of you are too young for Medicare (I will get there in October), but hopefully ALL of us will get there.
Please check out www.lymphedematreatmentact.org and then let your congressman and your friends, family and total strangers know how important this coverage is for all of us affected by this chronic condition.
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TNNurse-Thank you for letting us know.
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Well it's been pretty quiet on this thread lately - and I really hope that's because everyone is doing well.
I was down with the flu this weekend. Instead of an out of town weekend with friends, I spent 48 hours doing nothing. And I mean nothing. No dog walking. No driving. No putting on my coat and boots. And because I had no activity for two days, my LE arm and puffy hand deflated considerably. And I didn't wear any compression garments the whole time. When I woke up this morning I could actually see the bones in my hand for the first time in months.
So what does that tell me? I'm fine as long as I do nothing. So to control my LE I have to find a completely sedate job, or retire. And retiring is not an option. And I don't know how realistic a sedate job would be. And I could definitely do without the freezing temperatures. But at least it gives me something to strive for - and I was SO happy to see my hand looking almost normal again.
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Janet, what an unexpected pleasant bonus from having the flu. Yes, you definitely should be allowed to become a lady of leisure.
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Janet, sorry about the flu, happy about the hand! Doing nothing forever doesn't like fun, like life. At least you know the benefits of rest for your LE. You just have to figure out how to incorporate more of it into your life, I guess. Hugs.
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Hi everyone, my first time on this thread!
I wore a sleeve and glove sporadically last summer. My first flare was in my hand, wrist and forearm after some bites on my wrist. I had one infection with red streaks on my arm, and had to take AB's. Then it settled a bit.
The after effects of radiation made it a bit jumpy in the fall, but I flew from Canada to the UK, and later to Hawaii, with the sleeve and glove, and swelling really seemed controllable with only occasional compression.
Then one week in December, maybe I was over enthusiastic with some weights, maybe it was snow shovelling while not wearing my garments, maybe it was return to work, or a combination of factors, but my forearm suddenly swelled like Pop-Eye on spinach!
I had a LE appt booked for Feb, but I decided the first action would be to wear my garments fulltime. This I have, for 6-8 weeks, and the swelling has decreased a little. But I saw the LE PT last week, and she recommended bandaging at night, and I can wear my sleeve during the day.
I actually work as a PT myself, so you can imagine, wearing the sleeve is bad enough! I'm getting to my GRRRRrrrrr moment here. Get so fed up of patients and friends alike asking "Oh, what did you do to your HAND?!!"
The bandaging is starting to make a difference, and I'm hoping I will be able to D/C it soon, but my last GRRRRrrrrr moment was that I went from my LE appt, (arm all bandaged up by the therapist) to my physician with my medical form in hand for her to sign that I can start Dragon Boat race training next month. SHE REFUSED TO SIGN IT DAMMIT!!
I guess she wants to see Ms Pop-Eye stabilized before she would approve it, even though I told her the LE clinic girls said it'd be good for me!
Sorry, cutting to the chase, do we have any other Dragon Boat racers on here? It looks so much fun, and it was great to meet with a bunch of ladies who are doing so well, some have been racing since the club started in 1998!
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Morwenna - I can't tell you anything about Dragon Boat racing, but I can certainly commiserate with you over hearing 'What Happened to your hand' on a frequent basis. What's your response to that?
My response changes depending on the day. Often I just say 'swelling'. Or the other party usually volunteers a few options, as in 'What's wrong with your hand, carpel tunnel?'. Someone just asked recently about my hand, and I said that my lymph fluid pools in my arm and the compression acts as a pump'. By the time I got to the word compression, their eyes had started to glaze over. Never once have I said cancer. A few times I've said lymphedema but nobody seems to know what that is. Here's the other thing. Most people are so self-absorbed that it doesn't really matter - they're just making small talk.
Also, I had a really similar flare up. Mild swelling turned into a fleshy sausage during a camping trip last summer. My nephew, who was my camping buddy, called it my 'cartoon hand'. I hate camping.
But I'd be very interest to hear how you field the endless questions.
Janet
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my stock answer is "I have lymphedema, a side effect of breast cancer treatment, my arm and hand swell, and I have to wear this to help control the swelling"! They asked. A teaching moment!
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