GRRRRRRRRR I HATE LE..........
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Unfortunately I am too old for flu mist.
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Outfield,
Spray hairspray on the ink and then wash your sleeve asap. The ink will come right out.
I used to wait tables and would end up with ink all over my white cotton shirts.This is a "no-fail". (could it be the alcohol?) I never use hairspray but keep a small bottle in the laundry room just for ink!
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BTW folks...yesterday was my two year NED. I was so excited about this in the beginning of the month but as time drew near I was just more saddened. I think it is the constant reminder; LE. GRRRRRRRRRRRRR
However I do need to thank you ladies for getting me through these last few years. I truely appreciate your time here. You have taught me so much. THANK YOU.
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BarbaraJo. congrats on 2 yr ned!! you are the same stage as me, that makes me feel good. I agree, don't let LE rob you of the joy. Congrats again!
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BarbaraJo, congratulations!
LE does keep it a constant reminder, and makes it harder to put it behind us, but being NED is something to celebrate!
I never know when to date the anniversary--surgery? rads?--I guess end of active intensive treatment. Great milestone.
Kira
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Congratulations Barbara Jo. Being same as you that is good to hear. I celebrate mine date of surgery because it was the following month that my MO said he considered me NED.
I had my LE support meeting this week and it was an uplifting experience. She had us wrap a family member or her just so they could see how it felt. lol She should have had us do this before we ate so they really got an idea.
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BarbaraJo, hearty congrat!
Brownies all around, and we'll all share the joy that belongs to that milestone! (And yes, I hear you on the sadness that LE brings with it. Brownies are good for that part too!)Happy hugs,
Binney0 -
Kitty, what a hoot! I agree it would have been better to wrap them before eating. Give them the whole experience. As Marie Antoinette famously said, "Let them eat cake wrapped!"
Or something like that....
Binney0 -
Congrats to you Barbra Jo
That IS a capitol IDEA to let our fam/ friends get a taste of what we do live.I was in the kitchen making a big batch of chicken tortilli soup.....hours! wearing what I write further down. I am poooooooped beyond words. First time I have done 3 hours in the kitchen compressssseeddd.
Have any of you found yourselves TIRED AS ALL, going thru LE/ PT....I am week 5 now. The Medi550 Shirt was too much torture. I felt like I was in an upper body splint.
I do need some of your thoughts as far as my next option: I go flat 99 most of the time...so any compression bras's won't work for me.......?
for now I am doing....
a sports compression bra/ wear with serratus jovi paks/ compression underarmour/ sleeve/ glove all day.
I dont think a compression vest would work as I swell too much under my pits and flank....and plus the whole lack of ffoobage?
Its a day!
Catch you later for brownies with mild.
xo
brazos
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Oh well this is how my life rolls. lol I had to cancel my appointment for tomorrow in the LE Clinic. I am sitting in a hospital room with my mom. She has a bad kidney infection and being 79 years old she is really sick. Gave me a big scare this morning. She seems some better tonight. Me tired and have a slight cough.ugg yeah trying to get a sinus infection on top of everything going on. When it rains it pours.
Blown my diet to pieces needless to say. Fingers crossed my swelling stays down. Put a very loose bra on tonight, will try to do some MLD later tonight.
Serving hot brownies now.
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Awwwww.......Kitty, I hope your mom feels better. Sorry you have to miss your appointment. I am appointment free with therapist. Last appt. was Thurs, am not going back until he calls that sleeve is in. That was the plan for a while, then on Thurs he said maybe I should come in so he can wrap me. He is apparently afraid I will not do it well enough and when the sleeve comes in, it will be too small. I think I can do a good enough job.
Any way, if I don't, I will just have to wait a few days for him to do it for the sleeve to fit. It will be good to find out if I can do it well enough any way. And I can save my $30 copay.0 -
Kitty--I am so sorry you are having to deal with LE yourself and with your Mom ill. It is enough to just have to take care of oneself but to have to do it for two......Sending deluxe brownies your way. Becky
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BarbraJo, congrats to you!!! A round of brownies and warm wishes to you.
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Aww, Kitty, so sorry that you've been dealt such a challenging hand right now. I hope your mom is doing better and you are able to get some rest yourself. I know how it sucks to flare on top of already feeling like $3@:$:
Another batch of warm brownies and maybe a little something stronger to go wash it down.
Kay, sounds like you have found a really good therapist. Here's wishing you a perfectly wrapped arm.0 -
Well I had some good news today ..............my LE specialist said my arm looked fantastic "to use her words", and she is so proud of how I have done eveyrthing right to get it to where it is..............she ordered me 2 new compression garments...............we are not going with the "custom" since no one seems to be able to get that right...............after wearing a non-custom one that she gave me, she thinks I will do fine with that type..............she also said "no glove" because my hand looks great..................claims the swollen hand came from the bad fitting custom garment.
At least I got all the money back for the "custom" screwups, and now we are starting over........feeling a lot better about the LE now............
After taking measurements she said I you are fractions from back to normal.............she asked me if I was wrapping at night, and wearing the garment she gave me during the day...............I lied, and told her yes..................I don't wrap at night, however if I get a night garment (which she is going to get for me from a garment maker who is coming to the hospital to see her) and she wants me to go there when he is there................she called me her "star" pupil and wants me to be mesured by this guy ...............I agreed...................feeling pretty good today, about the "whole" cancer thing.........................but then again..............there is always tomorrow............one day good, the next day not so good............like we say............a roller coaster ride, that none of us enjoy..................hugs.
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(( Hi Everyone ))
I posted a few days ago. Been reading all your updates. I am in the sinking ship mode tonite.
Today i was discharged by LE/ PT.... my arms are back to normal. Just some upper chest fullness when doing heavIER activities. I still feel like I am only 50-60% back to normal pre BMX.
Also I would really appreciate if you can direct this next question..... the lymph node I found on my good side while doing MLD.....ended up taking me to a supraclavicular/ behind collar bone US. Has LE/Truncal EVER BEEN LINKED TO ENLARGED CERVICAL aka NECK Lymphnodes??????? I had a few deep ones show up on US as a surprize ~ 2cm near my carotid artery and others deeper in my neck.
This just has me sick. I am still on my butt from getting up from this Le/ Truncal Flare.
Thanks everyone, even just for reading.
Blessings and Brownies
brazos
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I don't have an answer Brazos, but ((((((hugs)))))))
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((((Brazos)))) no answer here either but wanted to bump the thread up for you!
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I don't have an answer either, Brazos, but I am sure someone will come along that does. I remember when I was first discharged from my LE therapy - I felt a little lost and frightened. I wasn't functioning anywhere near my pre-surgery level. It took a while, but I eventually became more comfortable with the self care. Here's a big hug, and I'm passing the brownies back your way.
Tina0 -
Brazos, palpable adenopathy is not related to LE--that I know of--but I would recommend that you have one of your doctors check it out, so you can not worry about it.
I think, due to MLD, that we're very aware of our bodies, and anything that is of concern deserves an evaluation.
Please let us know how you're doing.
Kira
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Brazo, my inguinal nodes on my LE side are now very prominent (you can see them), and there is a lymph node on my side that gets bigger and smaller depending on how my LE is doing. (It is always palpable, but it is noticeably smaller in the AM and when I do MLD/deep breathing.) This LN was biopsied and was benign. OK, I just felt my supraclavicular fossa and there are two small, but palpable, LNs on my LE side. (I had a negative PET/CT less than 2 months ago so I am not worried.)
How big are the LNs you are feeling? Do they get bigger and smaller? Are you very thin? KS1
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Hi ladies! Just checking in. It took me a while to catch up! I found some of the blood draw posts a little funny... Here's the thing. I 'm a nurse and we were taught to do shots in all areas depending on where the pt. needed it. In fact, we were told to RARELY use the arm, that the butt and thigh are the best places for shots. I find that so strange that everyone gave you a hard time. And I never had to draw blood out of a foot, but if the person didn't have diabetes, then I would do it. Craziness!...reminds me that I need my flu shot. I hate needles...lol. You think I'd be used it them but now, but I still hate them.
My LE is doing pretty well I think. I actually have only been wrapping about 3 times a week just to continue to do it. I wear my sleeve when doing anything strenuous but have also not worn it all the time. Is that bad? I have some slight puffiness in my had, but it's been the same for at least a month now. I was released for PT so I dunno if my MLD is working. My hand finally doesn't hurt.
I have a question though relating to rads. I finished in August, but I still have quite a bit of pain in my chest and back. I'm not sure if this is from LE or rads? Anyone have any insight on how long pain with rads lasted? I can tell I"m a little swollen in my back but it doesnt hurt where that swelling is. The most pain is around my clavical and scapula.
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an update to my rant on the flushot:
I called my local health department and talked to an R.N. and she was fabulous! She told me that they were having another flu shot clinic today and I went. She was awesome! She listened, and was compassionate. She even asked me if I wanted a preservative free shot. I looked at her and said, "You have those?" And she said, "Yes. I thought you might want one of those." Very, very cool. She gave me the shot in my thigh. It was strange ... I thought the 'thigh' was the side of your leg but it was straight in my quad. I told her, "This is going to hurt later" and she smiled and said, "Yes, it is." It was the first shot that I've ever had that didn't hurt at all going in. I made myself go to the gym to work the muscle and it doesn't hurt at all right now.
She told me for next year to make sure I call ahead and give them a head's up. Now I know. Thank you all for your helpful advice and a listening ear.
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yeah Dawn Hope, glad you found a solution!!!!...3jays0
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I woke up Tuesday morning with a swollen forearm. 3 years after mx, 2 1/2 after rads. LE therapist wrapped it today and its back to LE pt next week. I had a small spot on my hand swell up after rads, but that was my only run-in with LE. So I guess we are never out of the woods! It can literally occur overnight!!
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Kjbell that is great that you were able to get to a therapist so quickly. I wonder if hadn't had to wait a couple of weeks for an appointmentc, if I wouldn't have gotten as swollen as I did.
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Fronts coming through . . Feel like a human barometer. :-/
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Kjbell, so sorry you joined the "swell sorority", but it sounds like you're right on top of it--the earlier you get treatment, the easier it is to treat.
Any information you need from us?
LE stinks, and there is a new risk predictor calculator that includes early swelling as a risk.
Really hope it settles down and stays settled.
Tina: low pressure, restaurant food, tamoxifen--an old cord rearing it's ugly head--I'm totlaly sick of it, but have stepped up the MLD. Grrr. My amazing LE therapist measured me millimeters larger on the upper arm and I broke out into a cold sweat...
Kira
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Thanks Dawn Hope for your comments on the other thread. Six+ wks out from bi-lateral exchange & still lots of pain/swelling/discomfort on the left side - underarm & breast & around to back. Finally got off my duff & made an appointment for LE consultation next week to see if that's part of the problem. I'm slotted to see a doc who is "Medical Director of Lymphedema Mgt Center", Memorial Herman Hospital, Houston. Don't see LANA listing for him but I was told they are all "trained". He's also a wound care specialist & teaches at both Baylor & UT. This is the clinic my MO said to go to, so... Anyone have any Houston experience - pro or con?
I've been following you lovely ladies all year and trying to be pro-active. I only had 2 SNB on each side & all docs said "you never have to worry". Your experiences tell a different story. Keep your fingers crossed.
BTW - I had flu shot in my thigh at work & no one argued.
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Had my bilateral implant exchange yesterday and I'm happy to report the nurses and anesthesia team could not have been nicer about using my foot for iv and calf for BP. Didn't even phase them. I was so prepared for a big fight and it wasn't necessary. Wore my sleeves into surgery and my big pink LE Id bands and no problems. So far no swelling but also not able to lift my arm and really do MLD so just hoping things stay stable for next few days. At least I can say those horrific TEs are out. My hand hurts though, it's like a weather barometer. We've got snow here today and I can really feel it. Gosh, now I have an arm barometer to back up my curly hair barometer. Ugh.
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