GRRRRRRRRR I HATE LE..........
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LE info sheet, what a great idea! Last time I was hospitalized I was showing everyone that pic of cellulitis on a breast cancer survivor, because no one could see the whole effect on my body cause parts of my rash fades pretty quickly and I had been so undiagnosed for so long, I wanted everyone to see and hear what it looked like and fet like. I used to keep a bag packed too when my outbreaks were more frequent, it was easier for me, cause when my celly flares my BP goes way high and I cant think straight. Thats a sign to check for spots for me, when I start pacing or I feel like I am so aggatated to the point of almost not being able to breathe, then I check my arm, argh! and the fever starts pretty soon after...108 days clear! ... hugs terri
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KansasKay: sorry I didn't check in earlier: you need a referral for the lymphedema PT, and I get them from my primary--go with the doctor who is the easiest to deal with.
Terri: so sorry about the flare, they suck
lmc: get better soon.
Kira
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GRRRRRRRR Well I am not getting a refresh course after all. Instead I have to go back to the clinic for three weeks and they will wrap me once again. If my night time sleeve comes back then I can unwrap and sleep in it. I was up 80ml if I remember that correctly. Anyway my arm is bigger than when I started the first time. She agreed that I should quit with the sleeve for now. At the end of the three weeks, they will measure me again for a new sleeve and we will try the silicone band this time. yeah. I get to enjoy Christmas and then it is back to the wrapping.
She did remind me of things to look out for and she went over MLD with me. Yep I was doing it to hard! So lighter it is and may this work better before I go back.
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Kittydog, we all do MLD too hard--especially when we're frustrated.
Enjoy the holidays, and this LE is sure persistant.
Kira
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Well KittyDog, rats!
I SO UNDERSTAND about doing the MLD too hard. I get in a hurry, or frustrated, or it's flaring and I'm determined to shove that stupid fluid right out of there. If it's any comfort, when our therapists renew their training every two years that's one of the things that the instructors usually have to correct for them too -- too much pressure!
One thing that helps me is to set myself up to relax and go slow. Sometimes quiet music helps, or low lights and a candle (a pine-scented one is my favorite). I just have to carve out a chunk of time and determine to devote myself to it. Then I start out with deep breathing, which is good for the lymph system and the relaxation both. Just -- it's so hard to be calm and gentle when I'm doing something like this that I'd rather not do anyway.
Think: kitten-petting gentle!
Hugs!
Binney0 -
oh mannnnnnnnnnnnnn how I HATE LE and that cellulitis that has to be part of all this.
Last week Saturday - I went to the Urgent care hoping to catch a potential celluliti flare-up and just do oral meds............. BUT OH NOOOOOOOOO it had to turn into cellulitis fast and grow like wildfire. The ER doc made a comment like I don't think it is celluilits ... but after drawing for blood cultures, and sitting with a 102.8 temp - and IV being started with markings on my arm showing where the red was ... after an HOUR - then red blothces grew further up past the marker markings. Lo and behold - the young ER DOC says -- I'm calling the oncall admitting doctor as you will be admitted tonight.
Three days later - I'm released from hsp. Doing oral meds for 10 days. Will see the primary doc this wednesday and get the orders written for LE massage therapy sessions. I also have already called the Therapy department since I'm a past patient of theirs when I had my first bout with celluilits in Oct 2008.
I am unable to get in til Wed January 5th ... but luckily I have the skills to get started now - with the wrapping and kinesio taping ( glad I still had some on hand
-- My symptoms and causes this time around ..... thress days prior to the celluilits starting I had 3 bothersome hangnails on my LE arm... should have started the oral meds that I keep on hand on that day. Saturday morning my arm was real achy feeling - but figured it was due to the extra work I did the prior day. Soon I returned home that day to rest elevate my arm - and thought I would put my sleeve and glove on to help move the fluid -- glad I didn't bc soon I was having the CHILLS .. then a fever around 101.... and a couple warm, (non-red) spots... so off to the hosp urgent care before the midwest ice and snowstorm.
Cellulitis Sat Dec 11 - discharged from hsp Tue Dec 16..... what a learning curve ... now I know to just pop those on-hand pill bottle of antibiotics when I start having issues with my nails.
The summer 2009 - I was lucki to get to the ER before anything major occurred. Had a couple warm spots that night also -- but I was able to turn it around with just augmentin 875 mg, twice a day.
So I am anxiously waiting for Jan 5th to come around to start the MLD and guidance for the pros to get this extra fluid out of my arm ...
WATER ??????????? that is important right ????????? I need to drink water, not much of a water drinker.
Happy Holidays ............
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Unlimited, that really stinks! So glad you got yourself to the ER asap. I'm sure the more experienced women here can advise on what to do while waiting for your appt. Water, as far as I know, is always a good thing. It's difficult during the holidays, but I'd also try to watch my salt intake. Sorry you have to wait until the 5th to start treatment.
I'm so afraid of getting cellulitis. To think how quickly it progresses blows my mind. I recently got a prescription for antibiotics to have on hand in such cases. Sometimes I think I'm being paranoid, but experiences such as yours confirms it's the right thing to do.
KittyDog, I definitely catch myself at times doing MLD too fast. When I start flaring, I get all emotional and panicky and lose concentration and control of the movements. I once asked my LE therapist how fast a stroke should be, and she told me about one second. So it helps me when I count 1001, 1002, 1003 . . . which seems to keep me from speeding up or pressing too hard.
I've been meaning to tell you gals how I have adapted my method for doing MLD and wondered if anyone else does this. I was having trouble with my fingers not being tacky enough and sliding across my skin, esp. in the winter. I also have difficulty doing the side of my trunk where it feels numb and "gross" - I can't explain this but touching that area kind of skeeves me or gives me the willies. Anyway, last summer when I had these medium (orange) foam inserts I wore in my camisole at night, it got me thinking about using a piece of that foam to do the MLD. I told my therapist about it, and she cut me a small sponge-sized block. It has just enough tackiness and helps keep me from pressing too hard. I also don't get skeeved touching the side of my trunk when I use the foam. I reported back to my therapist it worked well, and she thought that was great.
Okay, I have one more stupid, and hopefully final, addition to my list of crappy experiences for 2010 - another reason why I deserve a damn break in 2011!! This afternoon at a friend's house while watching a football game, everyone got all crazy and started yelling insanely at points, myself included. They have a dog that has been known to nip people at times like this. Well, I guess you can tell what's coming. During one moment when we all stood up and were yelling, the dog bit me in my thigh. It took me a moment to realize what had happened and I looked and saw teeth marks in my jeans. I went to the bathroom immediately to see what had happened and to wash. I was very lucky, as there was only a small area that was abraded, no puncture. There was already severe bruising and some swelling. I applied neosporin after washing. I actually felt like I was in shock for a while afterward. My friends were horrified and concerned, as the dog hasn't done that in a while. I really like this dog, too, and was surprised he had bit me, but I think he just got agitated and I happened to be there. Dog's had his rabies shots, so I think I'm fine. I did do a cold compress to help control the bruising, but it's really quite sensitive. I swear, only me . . .
Otherwise, I haven't been around much because I'm trying to follow up on legal and financial paperwork on behalf of my elderly mother. Hoping to get back to "normal" soon and talk with you ladies more.
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oh, now, we add truncal le to my hands, which are driving me crazy!! now, numbness under the arm right wear the swinging fat is.. all related to the PS for dog ears, im sure. im wearing that lite compression vest thingy i got, that helps a bit.. but, i am getting prickly heat rahs all over my le spots. is that something le does? ive never heard anyone saying that!?! im making an appt. w./ therapist to learn MLD there, and have her ck the spots, also. anyone else know anything about that? thanks. 3jays0
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Dear Tina, Oh, my!!! You poor thing, but hey you did the right thing by cleaning it right away and applying an antibiotic cream, from my experience it is important just to keep an eye on the abrasion and call doc right away if you get a fever or abrasion starts to look infected. I also keep a bottle of antibiotics on hand. Don't worry, I am sure you will be just fine. Yes, in the meantime drink tons of water, get those toxins out of your system. God bless you, prayers are coming your way. Kathy
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Dear Unlimited, Wow, this cellulitis thing is becoming such a nuisance. I am glad that you are out of the hospital and hope your holidays are non stressful. I, too, spent Thanksgiving in the hospital with cellulitis and now know this is definitely a complication of LE and also keep a bottle of oral anitbiotics on hand. Yes, my infectious disease doc says water is a must, 10-12 glasses a day and eating a very healthy diet. I am also pre-diabetic which lowere my immune system. I can't get in to see my new onc in Chicago until Jan. 4th. I sure hope that you are feeling better and prayers are coming your way. All the ladies on this board are just wonderful and so knowledgeable. God bless you, Kathy
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(( Everyone Here ))
Wanted to ask you what antibiotics/ oral you keep on hand in case.....
I too have a dog ears/ galore...." SWINGY FAT" I have not a clue what I will do with it.
Any thots of this would be appreciated..... I just exchanged my Jobst glove for the Large as with the medium my thumb was getting cold and turning purple..... it was fine just wearing it at the Fitter. I wore the medium sleeve with it on Friday to houseclean and it did it again!
Ya all get better and take care with the Cellulitis.... very scary stuff.
(( Blessings))
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Unlimited, yikes! Sneaks up so fast, and stumps the ER doctors too. Bleeeeah!
Awfully glad you're home now and feeling better. Take it easy, rest up, drink plenty, elevate, lots of deep abdominal breathing. And know we're all thinking of you! Hard to remember to drink enough in winter, but especially important since it's so dry. Do keep us posted. Tina, thank you for the foam massage tip -- great idea! I use a lightweight, unsoaped washcloth in the shower for daily mini-massages under the water -- yum! That's awful about your friend's dog -- definitely not a football fan, obviously, or maybe he was rooting for the other team.
Maybe insist on crating him while you're watching next time, yes? 
Be well!
Binney0 -
Brazos, My doc prescribed Clindamycin. It is good stuff, it is currently sitting in my cupboard. Hopefully I won't need it. Have a great Christmas, God bless you, Kathy
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Cellulits sure is a tough bunny-my first lot of antibiotics didn't work....grrrrrrrrr probably means I can't have chemo today....double grrrrrrrrr
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Finally some good news! I say my onc today and after a quick review of the MRI scans he thought it looked like cancer. He sent me to the radiation onc who organised an appointment for radiation....on the way home he rang and said the actual report was in and it is just a cluster of blood vessels (there is a name for it but I forgot lol). How good is that????
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What great news!!
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Oh, Imc, I am so grateful for this great news! You must have been so bummed (that horrible lead-in-your-belly, can't-draw-a-breath feeling
) leaving his office, and then to get that call
-- I've got goose bumps just thinking about it!Gee, the sky even looks brighter now!
Sooooo...what gosh-awful thing do they do about blood vessel clusters?
Nothing, I hope! Let the poor abused vessels cluster in peace, for Pete's sake. Do keep us posted!
Binney, doing a happy dance0 -
yes, it certainly was one of the best phone calls I have ever received! I have what is called an hemangioma. I'm not sure what they are going to do about it-as long as it is not cancer I don't care!
My cellulitis isn't clearing up so that is a bit disappointing as it probably means a stay in the hospital-arghhh!
I am making brownies to celebrate! So nice to have some good news for a change!
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yeah good news. I'll have sugar cookies tonight for you! lol My diet starts next week. Enjoying while I can. Also going to be bad while I am at it and have Fried ham and rice from a local Chinese place.
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Brownies, huh? Good choice -- and these are the Above-Bed Brownies too!
Now onward to the cellulitis -- hopefully you're on a roll and all will soon be well with that too.
Hugs, prayers,
Binney0 -
Oh girls.... I hate LE... and I am so sorry for all your issues with it... or complications from it.
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR..... it is not FAIR!
Ok.. so.... we tell ourselves when dealing with our Cancer DX....." why not me... if not me.. someone else.... so what makes me different.... why not me???" OK.... I GET THAT RIGHT??
Now, with LE........... if we had not had BC we would not have LE. Not all of us get LE. ..my point??????
LE is NOT freakin' fair.... the " why not me crap " just does not fit here. NOT AT ALL!
Screw LE I say............. SCREW IT! ( can you tell I am having a swell)...
GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR
I will add some sort of good note..... After doing some PR on LE......... I stopped wearing a bra at all, about a month ago. Well, my findings are that of the research I did. I did not have any signs of LE.
I just dumped the bra! That has worked the best for me.... AMAZING! I wanted to share this.
I have small swell now due to WAY OVERDOING the lifting of grandkids....
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Imc, so glad your results are good! I hope you kick the cellulitis quickly and don't require much of a hospital stay. Please pass the brownies!
I'm always saying it's so unfair to have LE after dealing with cancer. I probably think that every day. Even though I do what I need to, I wish so much I hadn't been saddled with this.
Laura, I had to ditch the bra right after my first big flare. A light compression tank - one of the brands listed on SUSO or "slimmers" found at Target, etc. were a great improvement for me. I did those 24/7 for 7 mths, with foam inserts at night. With the MF implants (excuse my French) it was difficult to find tanks with something that resembled a cup that fit me. I found myself getting claustrophobic and feeling on the verge of hysteria. Having smooshed implants all the time became painful. Eventually, last October, my LE physiatrist and I did an experiment and I wore nothing while I started with the myofascial therapy. Within one week of wearing nothing, I went down 2 cm! So I've been the braless wonder since. Unfortunately, with the capsular contracture and bun shaped implants, getting dressed has required some creative thinking. However, I feel so, so much better and the LE has remained stable. If I have a slight flare, I'll wear the tank and "swell spots" for relief at night for a couple days. It feels good and helps hasten the recovery.
Hope your small swell subsides and you feel better for Christmas. It's hard not to overdo during the holidays.
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imc on your good news!! 0 -
Funny I come on to read about the bra post. That's my latest GGGRRRRRRRRRRRRRRRR! I was SO SO SO super excited about wearing sexy bras again after my reconstruction redo. Now I can't wear an underwire bra for more than a few hours without having a horrible flare. BLEH!
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AMEN Tricia... I was mad too... I have these great implants and I so wanted to be able to wear the push up bra with a strappy dress or tank.... NOPE........ the boobs still look good.... and I am thankful to have them........... but I wish I could dress them up once in awhile....
TINA.............girl... you have CC and the hamburger buns????????? I feel bad I even complained about LE .... Share with me/us what your PS is doing for this? Where are you at in the " fix it" phase.? ((bless you))
Hey ladies.... I wanna say Happy Christmas and New Year....... it make me feel good to know that we are all seeing another year ahead.... very good! Bless you !
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I tried wearing a pretty bra today, my first attempt in 6 months. I just received my optimal lympha press pump a few weeks ago and was feeling cocky because my LE in my back and chest was well managed...big mistake!!! I hurt and ache and even after the pump I am still puffy...
GRRRRRRRRRRRRR I HATE LE...
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SS Michelle........ SS !
Can anyone share with me, if insurance pays for those pumps at home I hear many of you speak of... the one Michelle just spoke of...
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United Healthcare covered my pump - it was $10,000
We ordered it in October and I just received it two weeks ago. Apparently the only place to manufacture this particular pump is Isreal. The company that assisted me was out of network but the provider I worked with was able to get in-network coverage for me. Of course I had burst into tears in their office when I discovered they were out of network, the fifth place I had tried to get help at. Apparently the woman I met with took pity and went to her manager and billing department to see what they could do for me. I had all but lost faith in the medical community...
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Thanks for all your well wishes and kind words ladies. As always I know I can count on you for support. Still trying to put off the hospital visit until tomorrow morning. I feel like crap at night and I am sure they will just leave me there in the waiting room for ages.
I had a chuckle at the thought of not wearing a bra-my boobs are massive and I think I would just shock the heck out of all I meet if I went bra-less. I shall not wear it so much in my bedroom though and see if it helps with the LE.
My above-bed brownies will have to wait-haven't been well enough to make them...grrrr...I am half way through my chemo though thank goodness!!
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1/2 way home girlfriend.. we're here cheering you on!! i don't wear a bra, lest i have to. my belly is still HUGE with GI problems, and chemo bloat.. so i have to use foobs, but only if i don't wear a jacket.. im hating le right now. took a bad tumble last nite, hit the side where le is truncal; and im so swollen.. just in time for Christmas.. good thing it doesn't snow here.. i can't seem to stay upright for sh***!! its the ms being naughty again... sigh..... 3jays0
