GRRRRRRRRR I HATE LE..........
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Haha Binney I thought it was "the ends of the earth".
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Hi All, Met another lady in the LE Medical Supply place I go to - I wasn't going to share this, but now I am having nightmares and I needed to tell someone. It has actually scared me into being very compliant with wearing my sleeves when I am supposed to.. She was trying on leg compression garments and she hasn't been very compliant about it (she admitted). When she was trying on one garment that was a little too tight, she knicked her leg as she took it off and she started leaking fluid, like when I had my seroma leak. I didn't react, only to give her a hanky to stop the leak, but it wouldn't stop it just kept on leaking. I felt so bad for her. I never want to get that bad. I am hoping now I let that fear and experience out, the nightmares might stop.. I truthfully, didn't know what to do.. Anyone here that has any experience with this, What do you do? I would like to know incase I come across this again..
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Binny will remember this. I posted in a panic because I'd stabbed my arm with a metal comb grooming one of my dogs. It bled a bit, then I noticed it was leaking a clear fluid.
She said to treat it with ointment bandage and watch. I did, it's fine. But I am a lot more careful grooming him.0 -
Musical, I was definitely recalling your crazy discovery of how outrageous the cost was in NZ for a simple little product we get here cheaply enough. Maybe NZ needs a new distributor of products helpful to people with LE. I think 'Musical's Lymphedema Products' would get you business out of sheer curiosity!
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I wear mine on a chain around my neck. I also wear a religious medal, I wear them together.
Edited: I haven't been here in a while, a was catching up, hit respond to a questions a few pages back, then realized that this might not make sense where it came out. So this is in response to the question about where do you where your wedding ring. I also haven't wanted to try to wear it since the swelling (LE) began. So do the above!
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Purple - I've been wanting to jump in on the rash thing. So here goes. If they thought it was fungal, I don't understand why they had you using an antibiotic/steroid combo. When I got a fungal/yeast rash, I used Lotrimin/clortrimozale and it, it was swollen, red, hot, growing, achy & a little itchy. I tried the antibiotic/steroid on it first and it just made it worse. Now when I got a rash on my MX scar area that would not resolve, the strong steroid fixed it. So what finally worked and what did they finally decide it was?
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..... and JoviPak is having their spring sale, so for those of you that use their products, and especially if your insurance doesn't cover it, they have some better prices, check it out - http://www.jovipak.com/may_madness.html
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I called jovi, and they won't sell to individuals, and the price they quoted was higher than the prices on lymphademaproducts.
Their advice was to call a reseller, like lymphademaproducts and talk to a person and see if they could apply the sale price....0 -
I'm still having a bit of anxiety when I wear both sleeves and vest of the jovipak - so the other night decided to try just the vest... OOOPS huge OOOOPs ... my upper arms were all swollen and no having trouble getting it down.
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Kira - how sad!
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to Carol...
Hello there Carol - now what's there to say?
the middle man - fiddle man - who do I play?
Invoices and choices - what goes or what stays
Only 24 hours - at the end of the day.Musical
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If they thought it was fungal, I don't understand why they had you using an antibiotic/steroid combo.
No Linda,I'm afraid you may have misunderstood. They merely said taking an antiB might give me a yeast infection.
In any case, the rash was all but gone and I did gentle MLD and used the new RX cream the dr gave. It's baaaaack! But not in full force - pink/not red, so I am back to no MLD and OTC cortisone.My arm is starting to ache.
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I'm so sorry purple, that you are having so much trouble. I understand how disconcerting this can get. The last pain cream the doc RX'd had amitryptiline in it and I can't take it orally but thought it might work with the cream combo - (RX neurological pain cream) - well it gives me a rash.. I went back to the old, not so strong one without amitryptiline(sp.)
I went to LE therapist today, done with PT as of yesterday. Weird feeling I had on my back and ribs while he was doing MLD - I swear I could feel the fluid flow down to my inguinals
.. Has anyone else ever had that sensation? I had to go to the bathroom directly after the MLD and I'm not kidding I peed for 2 minutes straight!!! Weird weird weird - feel better tonight though. still making runs to release fluid, so to speak. 0 -
Got it Purple - I tried to play speed read catch up, so figured I had gotten things messed up somewhere in there.
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Purple-I've been thinking about you. Sorry you're having such a hard time with the rash. I hope someone figures it out for you soon.
Tomorrow I'm going back to my LE PT. Even with 31 nodes removed, my arm is fine (hope I don't jinx it) but my breast swells up even though I've followed all the recommendations. My RO said it wouldn't hurt to see her again and she is wonderful. I'll let you know what she says.
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Purple, this really had gone on for a while! I'm peeved on your behalf, from a distance.
Fgm, I believe that breast LE is frustrating because it's not so easy to figure out the lymph flow, which is much more obvious when an arm is swollen. Your LE therapist will no doubt do some work to try to identify the source of the swelling, and thus a pathway to get the lymph into a drainage pathway. Glad to hear your RO is game to listen and hopefully, help too.
gmafoley, sounds like your therapist really knows his stuff!
Musical, you do have a good sense of humor when you can invent clever rhyme about the ridiculous situation of LE-related products costing several multiples of what we pay here in the States. I really am so sorry you have to deal with that. I'm sure it's the same in other places, too. We complain (legitimately) about the cost of garments and such here, but I guess sometimes we lose sight of how it could be much, much worse.
My arm is a little bit swollen, which is rare for me, as usually it just aches. I think it's because someone over-stuffed an overhead bin just above my head in an airplane last night, and when another passenger opened the bin later, the crammed-in bag came tumbling down...on my arm. I just wasn't fast enough to realize what was happening, because of people standing all scrunched up together getting bags and preparing to get off the plane. I can report that wearing a sleeve does not confer immunity to being crashed into! It's better tonight than it was this morning, so I'm hoping that some MLD before bed plus a night of Tribute wear will take care of what's left.
Carol
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LOl Carol.
If I don't wax lyrical I might get cynical
about was is typical - for us down here
If get up in arms hard enough not to swell
Who can tell what'll happen - and then its beware!!!
No not really...just playn on words.0 -
After all that I didnt even express my regret Carol at your arm upset. Just what you DONT need. I hope it comes right very soon. With my wrapping fiasco a week or 2 back my arm came good, but its tetchy and I think Im going to have to start again. I sure get you on the aching.
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Has anyone else ever had that sensation? I had to go to the bathroom directly after the MLD and I'm not kidding I peed
Never had that sensation gma, but sure have had to run to the bathroom after a good MLD session! Those are the ones where my ring fits afterward ( though I just use it as a guide)
Carol, so sorry to hear about your arm. Sure hope the swelling resolves and ASAP!
fgmThanks.
I started this crazy ride with breast LE ( surgeon kept saying it was normal post op swelling) and no risk reduction tips. PLEASE be very careful of your arm and hand. IF I had known then what I know today , I would not have worn rings, watches etc ..on that arm while the breast was swelliing. (Nor would I have arbitrarily lifted items and exercised for that matter!) Are you wearing a good garment? I now wear something very very similar to the " Wear Ease" cami which is shown on the stepup speak out site. It does help.
Keep at it and good luck to you.
Yep, Purple is still pink
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Arm seems back to normal (well, the new normal) this morning! Or, in Musical's language, I no longer swell from the bag that fell.
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I no longer swell from the bag that fell.
I wasn't expecting that one, Carol. Cracked me up!
Well, my rash is still there
and though I'm normally fair
I now appear to be pink-
I have to say, it stinks !
I just want it all goneto write a happier song
and do my MLD and stuff for me
and my Le arm !
hahahahahhahahahah ( but not really funny )0 -
Thanks for the advice, Purple. Hope your redness goes away soon.
I saw my LE specialist. She wants me to get fitted for a compression bra but wear my camisole until then. She also made me a form out of spongy material that she put in a sock. I'm to put this in my bra when I'm in bed at night. She cut it to fit around the underside of my breast where I am swollen. (Should be interesting.)
Also, no more warm water exercising until the swelling is under control. So, I guess I'll exercise by myself in the lap pool. She also told me to wear my compression sleeve and gauntlet in the car when driving for more than 3 hours. This was new to me.
I don't wear anything on my left arm or hand. I use to wear a watch but now I just use my cellphone. Divorced, so no ring. (another positive thing about my divorce
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Purple, since the redness or pinkness came back with the new cream, how about stop everything and see what happens. It's got to be very frustrating indeed.
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Marple
It never ever went completely away. Dermatologist game me steroidal RX cream and it seemed as though perhaps it was fading more- enough so that I did a very gentle MLD that night.
I woke up with it worse.
Decided to stop his RX cream PLUS continue to skip MLD.
Soooo, back to OTC cortsione and benadryl and it went back to less red/lt. pink.
I am just sooooo frustrated at not being able to do the MLD. The area is ironic. (Though perhaps telling )
It is really when I foucus my MLD/ open the terminus.grrrr!
The only new theory I have considered if the off chance it might possibly have something to do with my thyroid. It is ' right there', but that is a longshot and would probably take 4 mos to get ito my endo doc and knowing me, I would not consent to her tests anyways so....
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Purple, you must start somewhere. Can't a blood test from your family doctor get things started?
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Purple. It is just to weird, Tina had a problem last year with laundry detergent and a rash, Just throwing it out there. Have u tried anything new or maybe a new cloths with a unreal amount of formaldehyde or other chemical on it.Think of what you wore that may have been new that was around your chest area.
Also I once got a full body rash when I moved to the big city from small town. Don't know why, Maybe enviromentally something. We will keep rolling the ideaz around. Oh how frustrating when you want to comply and can't grrrrrrrrr.
Carol. How is arm? Are you telling me we have to now live in a protective bubble when we board a plane? I think I will be the last to board and get off to avoid anyone shoving, dropping bags or maiming me. And now I wonder if a isle seat is even safe, Maybe it is a good thing I have not got the nerve to fly.
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I had a friend that actually got knocked out by somebody's falling bag! She was also waiting to exit the airplane.
And on the wedding ring discussion I can actually wear my ring right now!0 -
Hugz, I get aisle seats so I have lots of room for LE fist pumping. Only it sure can be hazardous from above, and because of people who don't realize their backpacks and shoulder bags hit people as they walk down the aisle. I usually watch quite defensively, but this bag fell several minutes after the bin was opened, and my guard was down. The bag had a stainless steel water bottle clipped to it, and it landed on my arm with the weight of the bag it was attached to. Fortunately, I now have a bruise but nothing worse.
Someone posted recently about her night garment looking like what a hockey goalie wears. Maybe I need one of those!
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Carol, I like Binney's thought. Our nightsleeves look like a guard dog training garment.
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Okay here is a new theory for you Purple...how about it being a mild yeast rash? It worth a shot at this point. Try some lotrim on it. I had it on my arm last year and kept thinking something had bit me. Once the Dr. put me on a strong fungal cream it cleared up. Now you make me wonder if that is what my red spot is on my back...just beside the dog ear. err can't win for loosing. I see the Dr. Tuesday for it and the swelling in my neck has not gone away.
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