GRRRRRRRRR I HATE LE..........
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Jo, the caffeine link to LE is really interesting. I don't know if I have the strength to give up my morning cup, but that's all the cafeine I have. I do notice that with all the holiday food, it's been hard on my LE. (Just because it's there, doesn't mean I have to eat it.... but I do!)
Kira
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heyKira; here's the deal..i have pitting edema at the ankles.. managed somewhat by wearing diabetic socks. can't bear muscle cramps in legs from MS if i wear compression hose; so GP said diuretics, but he doesn't BELIEVE in LE what a jerk!! so, take diuretics"it can't hurt you".. what should i do? what do you think ? thanks 3jays my computers getting wonky, will have new one up 2morrow!!0
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Thanks Binney, hoping things continue to clear up. Thanks for cheering me up! NJ
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I'm so glad all this holiday food is coming to an end!!!! Today I went to watch football at a friend's house, and he had a 10 lb spiral ham because his family had canceled when it snowed the other day. I was all excited, when it suddenly dawned on me: I can't eat freakin' ham because of the salt!
So, I stop and get a sandwich to take with me. Then, another friend brought leftover chocolate mousse, which I decided I couldn't do without. I eat that, only to discover that besides chocolate and raspberry liquor, it also contains coffee. I had already had a rum and coke . . I normally only have one cup of tea in the morning because I think caffeine affects me. There were chips, chocolates, cookies, and other candies that I refrained from eating. I can't wait to get back to a normal diet! I'll be okay for the next couple of days, but New Years Eve will be dinner out, and within reason, I will allow myself to splurge. But that's it!!!I hope everyone is starting to feel better - nasty cellulitis go away!!!
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Thanks all again for the advice I was given when I thought I had hit the bottom. After two days, docs finally found that I have two blood clots in my left arm (the port side - I sound like a boat). One clot was in the auxillary and the other in the basilic vein. I get a shot of a blood thinner every day this week in the stomach and was also prescribed warfarin. I'm feeling much better, in time for another AC treatment on Thursday.
Could anyone please suggest links for more info on MLD? Thanks! Sara
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Sara, I'm so glad that they found what was causing you problems, but geez, you deserve a break already!!!!
I have several books that have some good info. on MLD - let me go look. Okay - my favorite is:
"Lymphedema, a breast cancer patient's guide to prevention and healing" by Jeannie Burt and Gwen White. This book also has a great section on kinesio taping.
The other book I have (I actually have multiple books on LE but most of them suck) that is pretty good is "Living well with Lymphedema" by Ann Ehrlich, Alma her last name is too hard for me to type, and Elizabeth McMahon, PHD. Info is a bit dated, but still a good book.
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Sara, I'm glad you got checked out, but wow--you do deserve a break (if it's on the port side, do you get right of way? Nautical joke--lame.)
I agree with Suzy--as always--I like the Burt and White book--and find the videos at the Northwest lymphedema center helpful
http://www.nwlymphedemacenter.org/
Hope you're feeling better--did they pull the port?
Kira
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Jo, what will it take to get Dr. Denial to acknowledge your reality???? Yeah, I'm sure he's seen extreme cases of elephantiasis and you don't have it--I hate absolutel certainity--especially when the person is dead wrong!
How frustrating, and unfortunately--how common. I know you don't discuss it any more, but it would be interesting to know exactly what education he's received about LE.
Thank goodness you got the help you need.
3JaysMom--that's a tough situation, I'll bet the pitting edema is due to not moving the legs and the neurologic issues. I really doubt you're fluid overloaded. I can understand how compression hose won't work for you--have you discussed it with an LE therapist?
Kira
Kira
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Third day wrap. Only 18 more days to go. grrrrrrrr but my arm felt better today when she unwrapped it.
I have learned some more things that I was doing wrong. You can't move fluid through scar tissue. I wasn't going high enough over my radiated skin. Gee I am beginning to think I caused my big fat arm.
I also got my tribute back today. If I want to, they will allow me to sleep in it and wrap during the day. My skills are improving in that department.
Hope everybody had a good Christmas. I am warn out but had a great time. We actualy got snow the day after Christmas. Very rare in SC.
Think we will break out that easy bake oven and make those brownies.
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KittyDog, we all learn things about LE along our way. (Sheesh, it ain't like the Drs. tell us anything.) Good for you for persevering through the wrapping. And you did NOT cause the LE. Don't ever think that. I spent so much time beating myself up over it. I guess sometimes I still do.
Gentle hugs and good luck with the wrapping. Your arm feeling better is such a good sign.
Gentle hugs and pass the brownies.
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thanks for the input ladies. couldn't get back, cause computers been acting up.. i did give in one night, and took the herbs. by morning, i was all swollen again, and i won't take them long term.. i'm sure it's also the lack of excersize, too, like you said, Kira.. its' a balancing act, for sure. i don't know WHERE i would do MLD on my ankle, what direction, etc. etc. am amking appt with LE therapist: and she's a dear.. i have her e mial, so i'll shoot one off to her. she usually tells me what to do till i see her. i owe her a plate of brownies for the holidays, anyway. {{{Binney4}}} 3jays0
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WOW: to the ladies whose drs "don't believe in lymph edema", but thank God (JO) that he is giving you scripts. Lymph edema damage can be irreversible. And remember its OK to have different Drs for different things. I go to an infectious disease Dr, cause he treats my cellulitis, the other Drs didn't do anything about my lymph edema (it really wasn't too bad), and once I made the connection between my lymph edema and cellulitis, he ordered the therapy and sleeve for me. KIRA: WHY are we giving up chocolate? I have some everyday and my lymph edema is manageable with exercise and massage. WELL WELL WELL...I have spots again, no fever yet. I am TOTALLY
P-O-ed! UNBELIEVABLE! I was on antibiotics since May. I just went off 2 weeks ago, because I was feeling so sick. (Yeast and bladder infection, stomach pains, headaches). I had almost 120 days clear...
My usual cellulitis out break looks like this: spots that turn to welts and then to sunburn. Hot to touch with a fever that peaks at 103.5, Flu like symptoms, swelling arm, bloated stomach, and tenderness of spotted area. The fever usually dissipates in 24 hours or so. I have had this over 30 times! When they finally started treating me it was anywhere between 3-20 days of IV antibiotic followed by oral antibiotics.
I never consented with my Dr about going off the antibiotic this time, I owe so much money, and I felt like after so long, I NEEDED to see if it was gone...I was feeling so sick form the antibiotic.
If the fever comes, I am not going to the ER (they cant access a port to save their life), I am just showing up at the infusion center and see if the Dr will call in a script for the antibiotic once I am there. I feel like a brat, but the ER is a 50 copay and the Dr is another 30, etc etc etc...
Anyways, no fever yet, will probably hit me like a hammer tomorrow afternoon. I JUST PRAY for a repreive. I can't stay on this med forever...argh!!!!!!!!!
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Terri--how are you doing today? I can understand how many months of antibiotics can beat you up physicically, and there is a condition, more in the breast, where it stays red, but is not infected.
HOW ARE YOU??
I didn't give up chocolate, but I do get a bit worse with all this holiday food to tempt me.
Kira
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Well, 2011 is starting off great! spots are faded, there is a sunburn area that is small, not hot to touch and not spreading. no spots on chest stomach or back, still feeling a bit lousy, will stay on oral antibiotic and resume compression garment tomorrow after burn spot fades. YAY!
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Dear TerriD, Your post sounded so positive, but I think that you are a pretty darn positive person with what you have been through. Thank you for all your advice and great information. I hope you have many blessings in 2011. God bless you, Kathy
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Pri, Thanks I needed ot hear that. My boss is starting to pressure me at work (he wants me to work more hours, come in earlier and work later). He has other people to do this, but I am the least paid, so he is coming down on me like a hammer. I am not protected by any laws, becasue we only have 10 employees. I just gave him a note that said, "no" yesterday to his requests, so now comes the threats (i can get someone else in a heartbeat) and "punishments" (like stupid assignments and denial of vacation days etc). whatever. I know I am a good worker, but he feels like my illness has an expriation date (I have been sick for 2 years). I have always been parttime, my production has never suffered, in fact it has excelled. But he is a business man, and I am a work horse, and although he can be great sometimes, he can also be an a** too. Anyways, I was feeling really really down today, almost weepy, so thanks fopr the compliment. hugs terri
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Terri--I work for a boss like yours--they just took away my vacation time, because I obviously broke my LE hand out of spite and to make their lives harder.
For those of us--and you--"the work horse"--who have strong work ethics, it's really, really hard to cut ourselves a break and realize we are doing the best we can do, and taking care of ourselves is very important. It's even harder when you get all that external pressure.
I know how stressful it can be. Plus the stress of being sick for years.
How about both a raise and back off the work pressure?
You are a mountain of strength, but even mountains need a break.
And--Kathy is an absolute angel--so kind and thoughtful.
What can we/I do to help?
Kira
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Dear TerriD and Kira, I can not believe that on top of your health situations that you have to deal with stressful work situations, unbelievable!!!! I am so sorry that you have had to put up with these situations. Prayers are coming for you both. I retired from teaching a few years ago, but I still help at our church preschool, fortunately no pressure there. Hang in there, good things come to good people like you both!!! Kathy
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glad your'efeeling better today, Terri. I thought about the excersize thing, Kira.. i've been in bed a lot. Depressed, and not feeling well with my ms. so, now, im more concous of keeping my feet up, and today, a small walk.. it's a start.. for the new year. happy new yyears; dear ladies.. 3jays0
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This looks like an ongoing board on LE, I was reading prior posts and was shocked when I read about diuretics and LE? No one has ever said a thing about them to me in any of my appointments. I take diuretics for high BP and have wondered why I seem to have such chronic truncal LE. It seems to be moving down my arm as of late which really scares me. I have had good results with MLD & acupuncture but they always are just temporary fixes. I cleaned on New Years day and have paid the price all day today. My chest just freaking aches today.
I need to worry about caffeine too! Since it's a new year...I guess I'll try that too. Maybe I'm delusional, but I hope one day things will truly be better.
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I too take HZT for my blood pressure. It is the smallest dose they make but It makes me wonder now!
Wrapping is working. Two more weeks to go.
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remember, tea has a lot of caffeine also. i switched coffe and tea to decaf; which still has a little.. but only when i gotta do i give it up totally... 3jays0
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I tried to find the thread where diuretics were discussed but can't. I take them for bp too. I really feel they are contraindicated when I have LE however I sure don't want to have a stroke either. I drink LOTS! Even arimidex (which I take as well) may exacerbate LE issues. Go figure!!
Kittydog. What great news about the wrapping! You must be so pleased.
Betsy, for the days where I am going to clean (a lot) I wrap my arm and then get at it. I figure the wrapping gives my arm the best protection for bigger jobs. (Btw, cleaning a lot seldom happens in this house.
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Betsy--MLD and accupuncture aren't enough to treat LE--you need compression garments for truncal and arm and to learn how to wrap.
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
http://www.stepup-speakout.org/treatments_for_lymphedema.htm
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
Sharon--Diuretics are not good for treating LE--but they are good for blood pressure, and as we often have a couple of things going on at once, you need to look at the whole picture. There are other drugs for blood pressure, and you can discuss it with your doctor.
Kira
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I'm already on 2 meds for bp. It shot up quite high after starting arimidex. It's such a vicious cycle. I'd love to go off the diuretics but can't seem to find a combo that works as well for the bp as the one I'm on. It worries me though, the effect it may be having on my LE.
Kira, how is your wrist/hand feeling?
P.S. I just wrapped my arm. I guess that means I should do some cleaning.
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Sharon I am pleased that it has gone down with wrapping. I will also admit that the wrapping hasn't been that bad this time. I guess the reality of my new problem is setting into my stubborn brain more.
I will stick with my diuretic BP for now. I have also had allergic reaction to two of those meds. My allergies sure do make life harder.
Hope everybody has a great day. I am off to my massage and to get my arm wrapped by the master.
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Sharon--my hand is slowly improving, thanks for asking, I have a great OT who is Norton trained, and we started strength work last week. I still hold some fluid up by the knuckles, and it bugs me. I am also wrapping a lot--take a shower when I get home from work, and wrap, with all sorts of foam inserts and "carrots" to deal with the swelling between the knuckles.
I'm lifting 1 lb weights for strengthening and keeping an eye on my arm.
I know I should be realistic, but it's hard to take a step back. But all in all, it could have been a lot worse, now it's just a bit depressing.
I'm out of the splint a fair amount and that helps move things--as I'm using my muscles.
Hope you're not cleaning too much.
Kitty--so much of this is adjusting to it. Glad you're seeing results.
Kira
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Happy New Years Sisters!!!!
I have been offline for about a week I think.. doing the Christmas thing... I am reading and reading to catch up....LOL.....
I want to say something.
I started this thread 'cause I was so MAD at LE... and KNEW there were others like me...LOL. So I wanted to create a venting place....
What happened was an AMAZING lady named KIRA... and another named BINNY.... saw this thread and immediately jumped on board to help those LE suffers. I am always humbled when I see others ...... out of their hearts.... just come to help.
THANK YOU LADIES.... you are doing SUCH an amazing thing on this site.. not to mention this thread. It seems to be getting attention... and your helping everyone here is just inspiring to me.
Laura
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Laura, all the thanks go to you for creating a thread that allows women to gather, to vent, to share and to help.
I hate LE, but I am so thankful for the wonderful women on this board.
No other thread has touched so many women, made it safe, made it okay to be mad and made it be okay to ask for advice.
Hey, we're the sisterhood you never wanted to join--and you've taken the stigma and shame away, and let us, as ticked off as we are to be in the club, figure our way to live well and not let LE rule our lives.
Thank you.
Kira
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Laura, thank you for the kind words. And thanks to all the brave women who post here -- LE is not easy to admit, much less get diagnosed and treated, and then constantly cope with the dismal day-to-day of it. But all of us together are strong and wise -- and even funny!
Together, we're outright HEALTHY!
Big hugs,
Binney0
