GRRRRRRRRR I HATE LE..........
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Boy, that was some rant. I silenced the board!
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I guess between you and me LOL - Everyone else is probably trying to stay cool and playing with the kids/grandkids or something.
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nibbana - I've had rants and no one responded and I feel like an idiot.
Please don't feel the same! 
I think people are just busy. I know I've been crazy busy. I'm with you on not being able to see a therapist. I don't have insurance and I can't find one that will accept me without insurance. I'll pay ... private pay ... but I can't pay $400 a visit which is what they charge those that have insurance. Oh, I've had rants about that, believe me!
I don't have resources that can help you. I regret that I don't ... I wish I did.
Totally hear you on feeling like a leper and on not being able to live life. I hear you. I had a friend come over this afternoon while I was working out with my trainer and she cleaned the kitchen and scrubbed the floors. I was talking with her tonight and she broke down crying ... it was like the first time she realized my daily limitations and the seeminly 'normal' things that I cannot do .... like scrubbing my floors as often as I used to ... scrubbing pots and pans really hard ... I can't do that. I felt bad that she was crying but in some ways it made me feel ... good (????) ... feel guilty saying good ... but the fact that someone finally gets it ... made me feel better.
I HEAR YOU, SISTER! Just know I hear you. Been there. There are days that I'm swollen and I've drunk water, I've done MLD, I've done Lebed, I've eaten everything organic and yet there it is ... and I'm like, "OK, you wanna swell ... I've give you a good reason" and I plow ahead and do things I probably shouldn't. Teen rebellion has nothing on LE rebellion eh?
I hear you.
I hope you're better. We get it, sister. We get it. xoxoxo
Oh and GGGGGRRRRRRRRRRRRRRRRRRRRRRRRR!!!!!!!
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Ladies, go on and rant! I have been reading her but am on vacation with family so haven't been able to find time to post. Today I am in my Flexitouch for an hour, typing with left hand only on iPad so forgive errors please!
Dawn, I have a massage therapist who is certified in LE therapy. Insurance will only cover PT or OT even thoug nurses, docs, and MTs can become certified in LE therapy. Mine charges about $100 per hr, steep, but better than $400, so I can go more often for same budget. I don't know where you live but maybe you can find someone. and boy, do I hear you in the frustrations of just wanting to do SOMETHING normal! Chopping veggies for soup. Doing a little artwork - just thinking about the physical requirement to prepare a canvas or use a pen or brush for a couple of hours makes me think my arm hurts! My mom has been helping me for a couple of weeks now and she is finally getting it, too.
When I get back home, I have asked my friends an neighbors to think of some local high school student who would like to earn a few bucks as a personal assistant a few days a week. Maybe chp veggies, pull a few weeds, put dishes away, etc.
Hope today has a few moments of joy for each of you, despite this miserable LE!0 -
That's all I want, a massage therapist certified in LE therapy who can give me a MLD refresher. I have more money than I know what to do with right now, so paying out of pocket is not the issue.
Oh, want to hear something else frustrating? You try to hire someone to do some home improvement, say put in a floor. "Ok, but you have to tear out the old one." WTF??? Do you know what disabled means???
So I had to cancel some home improvement projects.
Look at this, I'm still grrrrr-ing!
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I also have a pt who is le certified. My yr visits have run out and I am now on self pay but they only charge me $80 per visit. One more week at 2x a week then once a week. Having next surgery after that anyway. Not sure ifndoc will want me to keep up visits afterwards. Some medical professionals have gotten really picky about who they treat. They want the insurance guarantee for regular payments I guess. What ever happened to serving the needs of the patients?
Mags0 -
Nibbana the board is no longer silenced.
. As Im (probably) on the other side of the pond from you I'm not conversant with your med system but one thing we can all "get" with LE is a lot of the time it is a deal breaker. It sure sucks big time. Woudnt it be nice to have a cure from this miserable business called LE. And heres something else. Just because we have this hing called LE it DOESNT mean there wasn't other medical issues we've had to face, so its more likely to add to the pile than be a one off nightmare.0 -
nibbana, What ever happened to the good ole days when you called in a service man and they did their job from start to finish. Tear up your own the floor...... Thats nuts.
I hope he would be charging you less. Besides that ...how do they expect us older gals to even have the energy or physical strenght or good arms to do that. Are they kidding! Get a new guy and make sure he has muscles to. Maybe 28 or 29 years old You want to be able to watch those muscles be put to good use
The only physical work you should be doing this hot summer is lounging in a chair swizzling your Mojitoe.
Anyone to second that opinion?0 -
I second that opinion.
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I third that.
Hey, I found this article deep in the lymphedema people site. It's the most awesome article on psychologically coping with illness I've ever read.
http://www.lymphedemapeople.com/thesite/lymphedema_psychological_coping.htm
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Nibbana, what a great article. Thank you for posting the link.
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I am pollyanna!
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Completed another work trip to San Francisco and my LE behaved okay. Flight (both ways) went well. The weather was cool which both me and my arm really like. I hauled that Flexi-Touch across country and never used it. I'm calling it a successful trip without LE concerns. Yes! Of course, I had the pre-flight anxiety twice but ... it is what it is.
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Ohio, that's great news! Will you have the nerve to leave the pump behind next time?
By the way, it was WONDERFUL lunching with you a few weeks ago!!! I got distracted with too much work and a kayak trip and did not follow up.
(You know, you meet the best people in this LE forum....and for that reason, I'll temporarily take the grrrrr out of my LE experience!)
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I had a good visit today with my LE PT. I went back for a three week follow up for my arm. I had a few places that were up in measurment but all in all it was down more since my last appointment. yay. My hand I expected was measuring larger because I hurt it on the dryer Sat. So I am happy to say it was down.
My grrrr...My new stuff is not in and it wasn't even ordered until last Monday. They changed the appointment to next MOnday but I doubt it will be in then.
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My LE is so up and down I just DONT KNOW WHERE I AM WITH IT. I've been waiting on my new garments and my old ones are worse than useless. I am SO SICK OF WRAPPING that I must confess I havent been doing it or doing it sporadically and wearing my sleeve instead. Sometimes Ive got a reasonable wrap, and others I make my arm worse with lumpy parts protruding and quite deep dents. I have to confess Ive got roundly CHEESED off with it all and my arm seems to be getting fuller and larger. MLD doesnt seem to be doing a thing. Nothing is making any sense, for example, even though this part is good, I haven't wrapped at night and my arm has actually gone down! Itys done this consistently. GO FIGURE!!!!
Finally I got my new (way overdue) jobst, mitt/glove and sleeve yesterday. I think its made of the stiffest material theyve got or something, and the biggest caveat...punching yourself in the chops getting it on. It took hubby and me 5 minutes to get it on with grippy gloves and heaps of pulling and shoving. Now its on, but the extra compression feels great to me. It did leave quite a red mark yesterday when I took it off.
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Carol, yes I think the flexi will stay home next time. Too much luggage to move and have never used it while on the road. I did resurrect my Lebed DVD and started stretches again. It also helps keep my chest muscles supple. They are getting tight and sore around the rads area. It's all good.
Yes,I enjoyed our lunch. I will be calling again if I get to your area again.0 -
Ohio, I hope that the flexi is not akin to the umbrella you carry around so it won't rain!
Musical, bah! to the whole LE story you're being forced to live through! We all rebel on the LE care from time to time, so don't beat yourself up. I punched myself in the chin once tugging at the sleeve, and I'll bet we're not the only ones with that particular experience.
Here's hoping for everything to get a little better, day by day.
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I am flying for the first time since I got LE. It is only for a few hours and I have my sleeves. Anything else I need to know so I won't add any Grrrr stories to this thread?
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Hi Ginger, if you havent already left, heres a few suggestions ... hydrate well and do MLD before and after trip. Do some basic arm excercises like those fist pumps before and after trip. Those are all I can think of right now but there will be some others. Flying is a subject thats been often discussed on here so there'll be tips in the threads for sure. All the best and hope you enjoy your flight.
Thankyou Carol. Lol I cant tell you how many times Ive socked myself one. Reckon this latest Jobst is black eye material if I don't watch it. Well I've pulled myself together (somewhat) and between hubby and I we got organized and gave it another go. In the trouble spot at elbow and below, we measured in 3 places and my measurements between left and right arm differs by 5cms, and 2 lots of 4cms Ive never had this difference before. Grrrrr. This is since I took my sleeve off mid afternoon. Im breaking it in and didn't wear anything for some hours coz my arm was sick of the pinching where your arm bends which we typically get with new sleeves.
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Been doing great with keeping my LE down during the heat we have had in Oregon this last 6 weeks.
But here I go again. 2 bug bites, most likely spider.. this morning on my LE arm! Circles around the bites are in place and med is on them.. hoping they don't grow out of the circle.
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You're not a real LE sufferer until you punched yourself in the face getting garments on.
Look at it like a badge of honor. *boof* uhh, I punched myself.
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Question - My (right) LE hand and arm are noticeably colder than the left. Finished rads in March 2012. I have noticed the muscles in my chest wall are tighter (prob because I quit stretching?) and sometimes painful. I'm wondering if my cold LE appendage is due to nerve compression in my tight muscles or is it LE related or is it just a fluke? I noticed this about a week ago and here I sit with a winter jacket on, house at 73 degrees, 77 outside, arm is warmer but hand is still cold. Going for a glove soon - a winter glove, not an LE glove. Wondering what new phenomena has now come my way.......
Thoughts?
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Nibbana - I get myself in the face at least once a week - Poor doggy stays away when I remove them - I accidentally smacked her when I peeled it off one day.
Ohio - You might want to research Thoracic Outlet syndrome. Sas told me about that one. I don't have it but tight muscles can compress more than your nerves - also your veins and arteries.
I do get cold hands - LE therapist mentions that to me when he does the LE massage. But it usually comes with swelling somewhere.
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I punched myself today while trying to get my sleeve back on at work. Boy did that make me mad
Serves me right for taking it off in the first place! 0 -
Ok, after my LE diagnosis in June I told myself I wasn't going to join this thread because I just wasn't going to let it get to me... well, I really hate LE. It bites the big one and I'm really mad because I have it. I thought having a "mild" case of it would be no big deal. Slap on a sleeve, do some MLD and go on my way. Well, it's become an every day thing and I'm reminded constantly that it's there by the aching pain that is in my arm. I don't notice it during the day because I'm active at work for the most part but when I climb into bed at night "Bam!, there it is!". I finally bit the bullet and called my medical supplies contact (the person I got my compression sleeve from) and inquired about the Flexi-touch pump. She is coming to my office tomorrow to give me a demo. I guess I felt like once I gave in to it, then it would overtake me and win. I'm feeling so deflated right now. And mad! Ok, I feel a little better. Thank you ladies (and men).
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"You're not a real LE sufferer until you punched yourself in the face getting garments on.
"LOL LOL! you took the words right out of my mouth .... newbies lookout!!!! great things ahead.
Lainey...BIG hugs. No you havent givin in to it but just got real about it and that takes time to get to grips with especially when theres many ups and downs. Yea it SUX but somewhere along the line we just deal with it coz its hobsons choice.
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Lainey - I get it. It's been a year and I still embraced the whole LE thing. But, hand around on this board and you will learn lots about how to manage it. It still has a life of it's own and it's possible to survive amicably with the offending arm, but it's not my idea of fun.
I have the flexi-touch and like it. I don't use it always but it is wonderful for those times the swelling and achiness get overwhelming.
Knowledge is power. You can do this.
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oh I feel all your pain....the job thing is kind of a nightmare...at my last job they made a big fuss about helping me carry stuff. Of course after I left they miss me, but it was always out there that I couldn't do one little thing.
I so miss my life before LE!
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Ha! It's only been a few weeks ago that I punched myself in the face for the first time putting on my sleeve. I'm officially in the club.
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