GRRRRRRRRR I HATE LE..........
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Oh yeah, Keflex stinks bad! One time I was on both Keflex and pentoxifylline. They were on the same schedule, so every six hours (I think, maybe it was 8) I had to take these nasty smelly pills. One smelled like dirty gym socks and the other smelled like roadkill. Yuck!!
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Freya - OMG - skydiving? I've done a LOT of things in my life that my Mother never could understand that a "lady" would do, but although I've flown a plane, I've never jumped out of one. Kudos girl.
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Jennie, thank you, I really thought it was just me who noticed the vile smell.
hugz, hopefully I've got it all sorted. I live a couple of hours from medical help, so keep a well stocked "pharmacy" at home. The blisters are leaking, but so far it doesn't look like any infection or swelling problems.
Minus, you made me laugh! Well done for doing those "unladylike" things too, that term was like a red flag to me. It would almost guarantee I would have to do it. I always had a fear of heights, and I didn't want to be scared of anything, so I took up skydiving in my 20's. The outcome was I could jump out of a plane with no problems, but climbing up a ladder scared the crap out of me lol.
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Freya - good that we can laugh. I learned to fly at 35 because it was the most important thing in the world to my DH and my DS. I started out just wanting to know WTH they were talking about. Then I wanted to be able to land the plane if they couldn't.
I took Scuba lessons, and to my surprise - I loved it. But I was really scared about dropping my tank at the bottom and finding it 'later' when I started. The first time I dove in open water, I asked the guys in charge of the little boat in the Bahamas how deep we were going. They said, well under that cloud (mon) is never deeper than 30 feet. I was so nervous it didn't register. Under that cloud - LOL?? Once in the water, I saw a $1.00 bill on the bottom. No kidding I shot to the bottom. My DH had the watch & the depth gauge & the compass, etc - I had tanks & a mask & flippers - nothing else. Unbelievably gorgeous. Anyway, he started signaling to go up. I'm signaling back - no way this is fantastic. Of course you finally have to go up when your partner is signaling 'out of air'. So I shot for the surface. He grabbed my foot - WTH, we're only at 30 feet - I can't possibly get the bends? Well I guess that cloud had moved because we were at 70-80 feet. The water was "gin" clear. How was I to know.
Sorry to hijack the thread with past pursuits. I wonder if I'll dive again with LE?
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love all your experiences girls. Your making me feel younger by the minute:
Yes keflex is stinky. But I have smelled worse.
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Oh gosh, I forgot all about diving. We used to live in Nth Queensland, so right near the Great Barrier Reef. It would have been sacrilege not to dive. The Bahamas always looks so beautiful in pictures, how great you got to dive there. A few years ago we were in the North of Western Australia and went snorkeling with the whale sharks on Ningaloo Reef. It was one of my bucket list things.
Gin clear - I like that. I don't mind a gin on a hot day - or did before these darn liver mets.
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minus two, similar first time we went to the island of roatan, Honduras. the place we stayed, Half Moon Bay Resort gave us mask, snorkel and flippers. in case you havnt been to Kansas, the water here in the lakes and rivers is about a 90 to 100 percent mud. the water there was clear as city water. It didn't take too long to get used to the snorkel. beautiful under water. by the way, my wife is from Honduras origionally.
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Has anybody felt that their le is more likely to flare if they're sick?
My arm is definitely flaring and it might be coincidental, but it's the first time I've had a cold since I got le
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The warm weather always bothers my arm. Not good since I live in Florida and we really didn't have much of a winter
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1step - sorry I don't know the answer to your question - but I hope someone else will jump in. That would be a good thing to know. Especially since when we are sick, we are less inclined to exercise. At least I am.
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Don't know. But to me it makes sense that as the lymphatic system moves fluid around and filters so while an infection (cold?) is going on the lymphatic system is being 'challenged' more throughout the body. Nodes can swell in areas far distant from an infection so why couldn't there be flares from distant/systemic issues?
Don't take my 'theory' as 'fact' 'cause may not be anything other than an unsubstantiated thought of mine.
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Hi Folks
This is not a great time to come back when I am in asuper rush to go somehwre, but I will return later..promise! My dear husband passed away on Jan 26th, ( see www.rancitelli.blogspot.com) and on FEB. 24th , I just went in and got a mammo which was okay ( phew) , but... I noticed she pressed the RIGHT breast very very hard, but was not TOO concerned. ( LE in left arm)
Guess what ? R arm now bigger than left.Already made an appt. but need help before then. THINK maybe this was brought on by truncal and the pressure sent it into my R arm ( ?) Elbow very big (and wrist) Afraid to do MLD and send to leg area.... already have LE in left arm.
PLEASE ADVISE!
Thanks, ladies...think of you OFTEN!0 -
1step...could it be what you are eating ? Having chicken noodle soup for example ? Just a thought.
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Purple, long-time-no-see, and so sorry about all your news! Very tough start to 2017, for sure. Until you can get in to see the LE therapist, do the usual: keep arm elevated whenever possible; don't stress the arm; stay well hydrated; deep breathing. More here:
http://www.stepup-speakout.org/How_You_Can_Cope_wi...
1step, sometimes being sick makes the LE more manageable--especially if you're in bed with the arm elevated. But other factors can sure make it worse, including certain meds that can contribute to added swelling. If you know how to wrap, do it now. If not, might be a good idea to make it a point to learn, for just such situations as this one.
Keep us posted, please, both of you!
Gentle hugs,
Binney0 -
Thx so very much, Binney! ( I knew you'd be here :>)
I can already see this can easily be confused with *olecranon bursa* as my elbow has a pocket of fluid, but as God is my witness, it all happened within 2 mins of mammo and was in breast and wrist...just like the LE arm, and I finally noticed the elbow a few days later.Never a dull moment.
Hope you are ' well'.
Laurie
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Doing well, thanks, Laurie! Enjoying the cooler months and not looking forward to the warmer season ahead. I can remember in my pre-LE years loving spring and even tolerating the desert summers. Now it has more of a sense of dread about it. But, hey! The more we learn about self-management the easier we can take it!
And of course it will help A LOT if our befuddled Congress can finally manage to pass the Lymphedema Treatment Act. Maybe this year?????? Here's the current status:
http://lymphedematreatmentact.org/about-the-bill/c...
Keep us posted, please!
Hugs, chocolate,
Binney0 -
Purple, you just don't know how how often I have thought of you. I have missed you so much. I bombed thru your blog and boy you sure had it tough and now on top of it a le flare. Dang it, cancers gift that keeps giving so generously !
I send my virtual hugs and of course my virtual kiss to you showing that I.....well actually all of us that know you, care. Please accept. 😘
I would be so excited if you dropped in but understand if you don't. Myself I was off posting for a while and have joined in for a spell.
Try the tai chi breather exercises I posted. So easy relaxing and helpful when I get a pileup of fluid in my back. They were studied and found to be effective. I've even done them in a handicap bathroom at work unbeknown to my next door toilet stall neighbours. They probably thought I was just taking my time relaxing in that stall. Lol
You have helped me so much with my le woes and I will never ever forget your postings here. You are a rock in the le community. Welcome back
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"I've even done them in a handicap bathroom at work unbeknown to my next door toilet stall neighbours."
You crack me up, hugz :>) Too funny.
I have missed all of you, and thought of you so often. My life as a caretaker was a whirlwind of being super busy, as an advocate, a nurse, a doctor, a wife and you name it. My blog even became too much for me, and in the end , I basically skipped a year of the horror my husband went through. ( I Hate cancer!)
He ended up with LE in one leg, blood clot there as well and no one treated it well at all. He finally had a foot wound ( for a year ) that never really healed. It was all part of the daily caring.
LE sucks.Now I keep wondering about that mammo- somehow I feel I could have been more careful...but I refuse to kick myself.
Anyway, all exercise stopped when I broke both ankles and my right arm last July. keep exercising, LE ladies!
It's good to be here, and see' all of you again. My arm does not like the typing, and my psyche will not like the close reality of this life that is mine - all here and black and white so all the harder to 'forget'!Thx so much for your kind words - it truly means a lot!
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"Thx, Binney. So glad to hear you are doing well. Yes, I toyed with the idea of Az for a bit myself - I ended up moving ONE street away! We found the perfect handicap accessible house ( husband had dropfoot) and bought it Day One on the market. Came in handy when I broke both ankles :>)
As for :http://lymphedematreatmentact.org/about-the-bill/c...
I am very much aware, thank you.
Went to Congressman Neal's office, accompanied by my LE therapist , my husband and Josh Levin of Lymphedivas well over a year ago.
On the way out, my therapist said to my husband :" Hey, you have LE" and he just laughed it off as he had a blood clot and Drs., thought THAT was the swelling. She was right though!
I think I will have big trouble with this R. arm as it ' looks like' elbow bursitis aka popeye elbow, but I saw this happen the day of my mammo, and I know better. Drs have me scheduled for bloodwork in April due to osteoporosis too ( UGH) and the foot is out. I have an appt. MON to check for a clot there.NOT " Why me' , but really, just:" WHY?"
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Purple. . .you are so right. It's hard not to say Why? And we do have to exercise as much as we can. Hope you get some relief.
I have to have surgery again in a week and still have LE. So as I recover, I will start again at point zero and slowly work my way up. Grrrr I hate Cancer and LE.
Scottie
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I hear you, scottie. Losing the ability to exercise ( first, bad knees and then 2 broken ankles with a broken arm) impacted my life in many ways.
For those who can, DO!
I have no business asking " Why". I bought an Alex and Ani bracelet ( actually told my husband it would be his Christmas gift to me :>) in November when my husband was gravely ill. It says" Everything happens for a reason". It was to remind myself when the days were difficult as caretaker of a loved one. And while that was an extraordinarily painful time that I have not yet recovered from ( He died Jan. 26th) , I need to remind myself that MY issues are happening for a reason too! So much easier to be poetic when it is someone else...even your beloved!
Best of luck with your surgery - sure looks like you have been through a LOT. You take care.
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I've mostly been lurking. I only had my LE evaluation earlier this week and ordered a sleeve and glove today.
Purple, I feel so bad for you reading about your injuries on top of joint issues and LE. If I'm being too snoopy, tell me to mind my own business, but I can't help but wonder what type of accident caused both upper and lower body fractures. I'm sorry that you've endured so much physically while dealing with the emotional pain of losing your husband.
Lyn
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I had my first personal trainer session today (I am a fitness trainwreck) and wore my sleeve & gauntlet throughout. The trainer took my measurements after I was done and took off my compression—and my R bicep was a mm smaller than at my last LE doctor visit. I explained that with LE (even stage 0), larger biceps are NOT a good thing—he said firmness beneath the fat, with no pitting or feeling of tightness, will be a good sign of muscle-building or at least toning.
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Hi there, has anyone burnt their LE arm? I managed to pour boiling sugar syrup on my arm last week and ended up with an area about 4" x 3" of second degree burns. I am on antibiotics and covering the area with moist dressings, changed twice a day. It is still an oozing messy thing, no sign of infection, just ugly.
Just wondering about blisters healing time? I have had a slight increase in arm size (1cm) and it has stabilised there. I'm ok with that, as I expected worse and have not worn a sleeve since burning it.
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Oh ouch Freya. You sure didn't need this. Glad you got on antibiotics right away. Sorry I don't know about blister healing.
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I think before you said you live far from doctor. You may need to get proper prescription burn cream such as flamazine. I had blisters and le therapist put flamazine on hand then wrapped in guaze just like you would do finger wrapping. (Pic of hand wrap but not taken when I burnt hand) she changed every couple days.It kept fluid out during that timeframe and did miracles. I wish you could see a le therapist or at least call one. I would hate for it to get infected. Good your on atibiotics. Blister healing depends on each person. You should see it improving by now, if not I would seek immediate attention now. Cellulitis won't be fun if you get it.
Keep us posted. Drink lots off water deepbelly breath to help fluid build up. I believe my burn set off my path to le although I'm not swollen in hand but a bit.
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Chi. If your starting out then start out with the silly little one pound weights for a base line that way if you get a flare you will know what did you in. once you master this move up another pound building gently. Of course if your already built up to more weight,then proceed slowly.
After a year and a half I'm up to no more than 7 pounds at my level. I had to back off and start with way less due to tendinitis a couple months ago. This is the PAL program for le exercise for lifting weight with LE. Its a university study for le exercisors.so far no flares for me! I play safe.
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Thank you so much hugz, I have seen my doctor since the burn and had it dressed by the nurses there, and I have a prescription burn cream. I keep antibiotics on hand mainly due to cellulitis. It was the bane of my life for so long, it didn't help that I was neutropenic. I ended up on antibiotics daily for nearly 2 years.
I was told it would take longer to heal because it's on that arm, and I am on chemo. I shall learn to be patient
Minus, I've given up canning pears, it's far too dangerous lol.
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Ok sounds like you know the drill and will watch for cellulitis beast. Good your le educated!
Yes burns are bad and to top it off your on chemo. Awe I'm sending you cyber hugs and huge chocolate bar!
In case you didn't know us girls here treat our le woes with chocolate. It's the best medicine and a pick me up for sure!
Btw I'm prediabetic so it takes forever for me to heal. I use a fabulous diabetic healing cream called Amerigel made from oakin tree. Its phenomenal wonderful for ulcerated diabetic legs etc or cuts scrapes etc. It's good for burns. order online. They claim it's an antibiotic to! I talked to the scientist at the compsny and am convinced this stuff is tops
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Oh yes, chocolate fixes everything!!
I found some Amerigel on Amazon, would that be the best place to order it from? $16.99 for a 1oz tube, that is not very big. Do you use much at a time? Wondering if I should order a double lot. Sorry for all the questions, it does have great reviews, so I am very interested.
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