GRRRRRRRRR I HATE LE..........
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It's much the same here cookie. You could wring moisture out of the air today. Blech and may I add a patooie.
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Insect bites and LE - okay, I know you are supposed to avoid them. I never used to get many insect bites before BC and LE. Maybe a few on my legs. Now the darn insects are just gravitating to my LE arm. It's crazy. Went on vacation last week. Had first insect bite on LE arm, then got bit by a spider on the neck on LE side, then I would see mosquitoes hanging on my sleeve! Thankfully, I kept putting hand sanitizer on them and had no troubles with any infections. But still, just needed to rant about pesky bugs...they sense it!
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Jeannie,sorry to hear about your foot IV trouble. My onc told me not to do any foot iv because of the risk for blood clots. I don't remember if she felt that way in general or because specifically just me, although I never had clotting. Hwever, I do have vein trouble and I guess I will rely on her. BP I will do on my leg only.
Musical, re coconut oil. Just be aware that coconut and palm oil are very bad for cholesterol, organic not withstanding. I actually visited a place where they make olive oil last Wednesday. The color of oil is affected by how it is pressed. I don't remember the technical details (I'm sure you can google that) but the cold press extra virgin is greenish in color. Good olive oil undergoes chemical testing before it is put out on the market. At least this is true for Israeli olve oil. They do import a lot of Spanish oil etc as well. Italian oil is also supposed to be good. Maybe Good Housekeeping has information what to look out for. I definitely recommend olive oil over coconut oil. Canola oil is also good. (especially when you do not want the heavy taste of olive like in cakes)
Yes, I also love grilled veggies and summer is such a good time for salads and vegetables. (That doesn't mean I gave up on cake and chocolate...)
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Dassi, I "inherited" some organic coconut oil and I take it putting it on our skin wouldn't affect our cholestrol anywhere like cooking with it? Anyway thx for the headsup, I wont be using it for cooking. I must get my bloods done again and see what this reading is. SO far Ive been OK with cholestrol but Arimidex reportedly can make it elevated for some. Oh yes I forget to mention pressing. Apparently anything but cold pressed is not good.
I think the trouble with canola oil is by far the majority of it is GE.... Oh I love chocolate so long as its not overpoweringly sweet if you know what I mean. We have a chocolate icecream here and Awwwww it is sooo yummy but I stopped eating it because they put soy in it.
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Denise thats annoying and crazy about the bugs gravitating to you! I wonder if theyre maybe attracted to a new moisturizer or something that youre using? Uggghh spiderbites...we have an import from Aussie probably a century ago called Whitetails and eeewww theyre gross and VERY nasty. A bite from onew of those on a good day on a healthy person can cause serious issues with infection. I shudder to think what would happen if one of us got a bite from one.
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Sheesh, all I need is a blood clot to kill me! I stopped Tamoxifen a month before surgery for that reason. I'll have to ask about foot IV's again. A neck IV sounds very bad. Maybe I should just let them use my hand.
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Dassi, do you have LE in one arm or both?
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Jeannie, a neck IV isn't as bad as you're thinking it is.
Binney0 -
neck iv...binney is right...not as bad as you dream it up to be...a mind over matter if you will. Foot ones hurt more than neck to me. Had to get a central line with one of my surgeries but they did that while I was looped
Maggie
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Hi Jeannie57. I just finished Stage 1 at NOLA and requested a central line (the neck IV) because chemo messed up most of my veins. I have LE in my right arm and trunk so only the left arm has been used in the past for IVs. Every time they had to flush the line it would blow the vein and they would be on the search for a new place to stick. It was more painful and stressful than the surgical incisions and I cried the whole 4 days until they took me off the IV.
This time I asked for the central line, explaining what I had gone thru before, and Dr. M agreed. It was not painful at all because it is placed during surgery, and the procedure for cleaning the site is sterile. I didn't keep snagging it on things like I would have in my arm or hand or foot.
I hope you'll talk it over with your Dr and anesthesiologist. Good luck!
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Jeannie,
I have had bilateral MX. (But at 2 different times). My LE hand (hand only, not arm) was on the side when they still took lots of lymph nodes before sentinel was discovered. Even so it took 22 years and an ace bandage on my wrist to cause hand LE. I never did BP on that side in any case. The other side had sentinel, so there is still a risk of LE although less so than the LE side. Till the onset of LE a year ago I had BP and bloodwork on that side as well as chemo. Since my onc warned me not to draw blood from the foot, I tell the nurse to be super careful when drawing blood and make sure to clean well before and put on antibiotic cream after, and she did it w/o protesting. So far so good.
I don't think my MD has taken BP reading since LE but I have always had good BP so will tell her to do it on my leg or calf or whatever on the non-LE side.
What is interesting is that I found (possibly because AL (Anastrazole) - now done with - that my circulation in my LE side leg was worse. i have had a bad case of varicose veins since my last pregnancy (30 yrs ago...) but it got much more painful and swollen. If it was just a SE of AL, it will hopefully decrease now I stopped but my right foot/ankle (the LE side) is visibly swollen most of the time although I am convinced it is not LE, just vein issues. So no blood draw at all on that side of my body and not in a foot or leg altogether.
I hope that I will continue w/o LE on the side where I do blood work. It's just one of these things where neither of the choices is clearcut. There are always risks, but I had to make a decision. I'd recommend you discuss it with an MD who you respect and who takes you seriously. It is an individual decision and not necessarily an easy one.
Hoping you will find the best solution quickly!
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Really frustrated. Whole family is outside having a cookout and the humidity has me inside. Was out in the heat today and LE arm is not happy. I'm not happy either.
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Really frustrated. Whole family is outside having a cookout and the humidity has me inside. Was out in the heat today and LE arm is not happy. I'm not happy either.
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Lol. Didn't mean to post twice. Just not a good day.
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Ohio, it's time to run (well, walk) through the sprinkler like when you were a kid! Get some evaporative cooling going for you. I find that works really well. No, I don't actually run through the sprinkler, but I've been known to moisten my sleeve. If it's too awfully humid, evaporation may not work well outdoors, but if the humidity drops and it's still hot, give it a try.
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Years ago I saw a fan with a mist spray. I should have bought it - bet something like that would work well. It was like the mist at the Las Vegas hotels - you know it's there, you don't really feel it, but it is cooling.
I do the like the idea of the sprinkler - all the great nieces and nephews sure would enjoy seeing Great Aunt Diane getting wet - it would be LE relief and comic relief all in one. I should have jumped in the pool yesterday but there were so many little ones and I was the spotter on the outside.
Still achey this morning with swelling in my upper arm and hand. Better than yesterday but need to get busy on Little Martha and make her happy today.
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Should I wait until the bug bite is completely going before putting back on my sleeve and doing MLD?
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I hate summer.
Thanks lymphedema.
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With recurrence and mets this spring, I agreed to further treatment with the hope that I would have just one good summer. All I wanted to do was sit by the pool, enjoy the warm moist summer air with minimal clothing. I didn't get it. I am a bit peeved. And I am to go to the beach with the family this week, something I have loved more than anything in the past, and don't even want to go this year. So, Carol, thanks for the tip on keeping sleeves wet - I think I can manage a walk on the beach at sunrise without risking too much, I hope. I hate the idea of spending my beach vacation in the air conditioning. I should be heat-acclimated by now with all the gorgeoous warm weather and sunshine we have had, yet I am pale, easily tired, hate it when I have hot flashes that get my bandages damp. I have yet to get a workable sleeve/glove combo .... maybe it will arrive today .... Ohio4me, I completely empathize.
Sending kind and cool thoughts out to all of you today.0 -
Let me tell a story about foot IVs and blood draws.
I went in for a routine coloscopy. I mentioned about the IV being in the foot only. They said if it was a problem, they'd let me know. So I'm thinking, "It better not be a problem." So, they called again and said an actual anestheiologist would do the IV in the foot. So, procedure day, and I ask the nurse, "Ok, are you the head nurse? Is everybody on the same page over this IV in the foot and do you understand why?" Yes, she says, everybody is on the same page, no one will touch my arms.
Here's the clincher. Anestheiosologist come in for the foot IV. He asks the nurse if they get many requests for the foot. Nurse kind of hems and haws then says, "Well, we don't really want to." (Ahhhh, the truth comes out!) I then pipe up and say, "You know, you should practice because you'll never know when you'll get a breast cancer survivor here."
So, that's the key. Communicate your needs ahead of time. When you're laying on the table it may be too late, and you may end up in a big argument, or getting it in the arm anyway.
On the blood clot issues, I've had blood draws on my feet until I was limping, but never had a problem.
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nibbana. Good for you!!! Yours scenario is everything mine should have been. This is another "iv in the foot post " I could almost write verbatim. Your story runslike mine with ONE exception. Yours had a happy ending mine didnt, but you even got it right (in my case) for when things go wrong.
I would definitely say COMMUNICATE BEFORE HAND and I would remind remind remind them X4. I did this 3 times and it still turned pair shaped!
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Nibbana, what a great report! Lots of lessons learned there.
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Hi there ladies,
I have a question for you flyers... It looks like the meeting I have in late August is going to happen and I have to fly... I just want to make sure I get everything on the list that I need to bring..
My brain is fried and I know I forgot some things on my list : night garment, sleeves, gloves, wraps just in case... what am I missing???
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Hi, Gma,
How about a mini-first aid kit: antiseptic wipes, topical antibiotic, bandaids. And, if it's okay with one of your docs, a filled prescription for an oral antibiotic in case of infection. If you use a special soap for washing out your day garments, take that along. Lotion, sun screen, LE bracelet, printed info about LE in case you need to educate anyone. Chocolate, of course
.Happy travels!
Binney0 -
I was a bad, bad, bad LE girl today.
Can't find sleeves small enough to fit...in my quest to find something that will work, I wore old sleeves doubled up on each arm (no wrinkles) and my gloves. On my way to church, the sleeves on the right side slipped down almost to my elbow. #sigh# that wasn't going to work...so in the parking lot I took off the double sleeves on my right arm, left on my right glove, left on the double sleeves on my left arm and my left glove. (Can you see it? Wacky, for sure). 1/4 through the service, I said "forget it" and took everything off. Ran errands after church, all without my garments. Haven't done that in over a year. Way later this evening, I drove to the gym..wearing my bi-lateral silverwave sleeve that goes across the shoulder...at least that one can't slip down...got to the gym and lo and behold...I forgot my gloves.
Left them at church... #sigh again# ...so I went into the dressing room, slipped off my silverwave sleeve and did my workout without glove or sleeve. I know, not a wise move....but grrrrrrrrrrrrr....I was good in the respect that I only did cardio and lower body and I felt like quite the rebel going to the gym without my garments ...and it did feel good...almost like my body is 'normal' again. I hope I don't pay for it tomorrow...lots of water and mld tonight.
Did I say grrrrrrrrrrr I hate LE?0 -
Okay. Today I started using a tennis elbow support on my non-LE arm. My elbow is inflamed from the repetitive action of MLD. Self diagnosed but the support helped so I am sure I`m right. So now I have two bum knees from meds and two bum arms from LE.
Just another day.0 -
Since Im having a time of it trying to control intermitent flares for months and NOT making any overall progress I'm in the same boat Ohio. Part of that is that my "lesser" affected arm is doing "overtime" trying to manage this STUPID LE. Grrrrr.
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ohio. Good thing you dont have 3 arms and three legs as by the sound of it you for sure would have 3 bummed up everything.
I am so sorry for your pain and frustration. My non le arm gets sore when I do self massage and that is why I don't always do it. I do lebeds instead but am rebellious right now.Musical. Dang flares anyway, Sucks doesn't it? phooey. Going to send the non LE fairy girl your way and have her wave her wand at you. Hope this will work.
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Got a big fat grrrrr today.
I can't get MLD done as a service outside of regular (or non-regular) therapy. I was willing to private pay for this service and was told to seek services elsewhere. Does anyone see a massage therapist for just MLD?
I'm trying to get vocational assistance because my work requires lots of heavy lifting and working with box cutters and tape guns. I have to show that lymphedema is causing limitations on my job. (Do they think I'm wearing compression garments for fun?) Google is pretty skimpy on LE and on the job. Does anyone out there know of any resources?
Then, reviewing all the can'ts and don'ts, and restrictions, and feeling like a leper, I'm so sick of this! I'm tired of not being able to live life. Well, heck with it, I"m going to do what I'm going to do, and I whatever happens with my arm, so be it. I don't care anymore. I don't care if my arms rot off.
Oh, and grrrrrrrrrrrr!!!!
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Nibbana I so understand!! I was stupid tonight and now I wish I didnt do it. I had my sleeves in the wash, and went outside and pruned the whisteria without them and had something salty for dinner. Now I'm suffering yet again. You are damned if you do and frustrated if you don't.
If you find a rehab that is related to a Catholic hospital, they can't turn you down and they will set up a payment plan. My LE therapist is an OT with the rehab center.0
