GRRRRRRRRR I HATE LE..........

Healing thoughts to kmmd who is having surgery today.

Kira

kmmd--I am thinking about you. 

Hugs--Becky

Kate, wonderful! Rest up, get better, be well!
Binney

Kate, you trooper, home already. Rest up and take care of yourself. I'm glad it went well.

Kira

im glad she finally got it sorted out. things will get better from here..

  my hand is in a bit of a flare, today, but i've discovered, if im careful, i CAN type with my Gottfried gloves on...   3jays

Hi Ladies what would I do without you...............I'm going to try to type with both hands so forgive my errors..........................My LE was caught early, in fact I was the one w;ho asked about it....I knew something didn't look right and I had read up on everything about breast cancer once I knew I had it........LE was something I was scared of getting...........

Oh yes, my wraps went rolling across the floor more then once, and thank God the windows were closed........My language would have scared a truck driver............

My LE person is Board Certified, and my daughter thought she was wonderful, and so very thorough, and that is coming from  the most  "anal" person I know........Fought the insurance company like hell to get her....she was not covered by them, but I insisted and they allowed it.

LE specialist says mine is mild, and I may only be in the wraps for about 3 weeks, or until the swelling goes from 12% down to 5%.  So I guess it is up to the body to take care of that.

I was also upset cause they added 3 more boosts to my Rads............not welcome news, but was told yesterday.............

I will have to ask about the pool crap.  I have a pool at my home down the shore, and staying out of the sun is bad enough, now "no pool"......................does it get any better......what a bunch of shit...............Again thanks ladies hoping to get the courage you all have to handle this LE crap..............have a great weekend

Thank you all for your kind words and advice, and I apologize to those who found what I wrote discouraging.  To the credit of the "LE gets worse" therapist, she and the garment fitter were taken aback when I said that, given what she had told me, why bother doing anything for LE.  She did say if I did nothing, my LE might get really bad, and the fitter said that I should continue wearing a Tribute at night.  I didn't "fire" her, but I have canceled my appointments with her.  If she isn't going to wrap me or teach me how to wrap or do anything different, what's the point of seeing her?  Also, I find her Eeyore-esque proclamations very discouraging.

Anyways, on Thursday I saw a 2nd LE therapist for the third time.  This 2nd therapist is much more upbeat.  She says my hand looks a lot better than at the beginning of the flare and she thinks it can get even better than it is now.  She did MLD concentrating on the wrist where she says there is some fibrosis and the ulnar side of the forearm where there is pitting edema.  (For what it is worth, the first LE therapist says I don't have any fibrosis or pitting edema in my forearm or wrist.)

After MLD, she wrapped me.  When I took the bandages off 24 hours later, my hand looked fantastic, although it did increase in size within an hour.  But, I find it encouraging that it was smaller initially, especially given that I saw the 2nd therapist immediately after having received zometa and lupron, both of which make me swell.  Also, the 2nd therapist only directed LE fluid toward my groin and not my non-LE arm because the arm was swollen from 3 infiltrated IVs.

So, despite the fact that it takes me 5 hours RT to get to the 2nd LE therapist and I have to pay the full amount out of pocket, I think I will continue seeing her every couple of weeks.  I think in another 3 or 4 sessions, I may be reasonably competent at wrapping.  - KS1

PS In the past, I have always been a very easy "stick," but two nurses who tried to start the IV for zometa said that the skin in my non-LE arm was strangely tough and it was hard to puncture the skin.  Has anyone heard of this? I don't have LE in that arm and I didn't have any nodes removed on that side, but I did have a partial mastectomy (at the 3 to 5 o'clock region of the breast).

Ducky, good for you for typing! You ARE brave -- courage doesn't mean you have to like it, just that you keep on slogging through it. None of us like it one bit. If you look through the archives here you'll find any number of good, healthy rants like yours. We get it!

The extra rads stinks too. My rads onc came in on my last day and said he'd miscalculated and I still had a week of rads to go. I could hardly breathe with the shock of it. Then he started laughing and said he was joking. Not real amusing.... So I know how you must feel, and I'm hoping the days pass super-fast.

KS, I am SO RELIEVED that you have a different therapist, only I'm sorry she isn't a whole lot closer. You might try an appeal to your insurance -- the other therapist shouldn't happen to anybody! Keep us posted on your progress. 

Hugs,
Binney

Well, Ducky I sure hope that's what happens with the lottery tickets!

I got good news at the LE PT on Weds. I had last been there about 6 weeks ago, control seemed good then so continued with MLD, exercises and sleeve. I didn't seem to need nighttime wrapping. Well, she measured me and my numbers were DOWN! It's working!!!

And for an added bonus - I told her I was probably having recon (DIEP) and she asked me if the PS told me to GAIN weight. I should have had a recording of that...

Binney, at least you got a joke (a lousy one, but something) on your last day of rads. All I got were the techs telling me to make sure I went to the office for the forms for my HMO to get money for the transportation. No "best of luck", no "hope things go well", nothing.

Leah

So...haven't been to this board for a while but had a major melt down today. I was working in my yard the first day of decent weather in ages...anyway, I had gloves on but reached over and got snagged by a rose bush on my LE arm. Went into my house to find some topical antibiotics...of course there was none to be found. So I cleaned the puncture with Hydrogen Peroxide. Can anyone tell me why rose bushes are suppose to be so bad? I'm so pissed at myself for being stupid. My arm was just finally starting to get better after months of babying, now I'm nervous that I'm going to slide backwards again. I hate this soo much.

I can totally relate to all the posts about right arm (rt. handed) difficulties. Add tendonitis to LE and that's my curse. It has made even the simpliest of things difficult,  life is so frustrating. GRRRRRRRRRRRR

Rennasus - the thing with "risk factors" is that each person develops differently in spite of the risk factors.  Some have more nodes taken and get no LE, other have no nodes taken and do develop LE.  The higher risk individuals are not necessarily the ones who get it.  If you are one who flies, it is highly recommended that you get sleeves and gauntlets for your travels. Flying is a significant risk factor over time which you do have some control over in wearing compression.  I understand your feeling rather skittish and very concerned.  There is a lot to deal with at once, none of it makes sense nor is it comfortable.  It sounds as though you do not have LE at this point, is that true?  It never hurts to get an assessment, and at the least get measured as a baseline for the future.  I hope your visit here on this line is short and that you do not develop LE, but either way you are welcome and it's great that you are asking questions.

I use Dreft.

I use the grocery store brand too.  So far, so good.

BTW, I've been chewing and spitting out nails all day today.  It's a wrap day, good for my arm, not so good for my mood.  Poor DH and DD (darling dog) have run for cover.

GRRRRRRRRRRR I HATE LE.......

Sharon, can understand completely.........my out is............shut the windows when I do my wrap, cause sure as hell the wraps are going to fall, roll across the floor, and I will have to chase them.............I say words that would only be rated XXX anywhere......................and I was told the other day by my   LE specialist I will be doing this for at least 3 weeks, 2 times a day..............now I have to buy another set of this shit, and they charge $12.00 to ship it.......................God I hate this .............and I will do this till I get from 12% swelling down to 5%...........I already did it once this morning, and when I was done , realized I forgot to put the "stocking on first"................guess who did without the stocking...............then I was working around, and the tape came off, and the wrap was unrolling off my arm as I was doing laundry...................so I understand why your spitting nails after chewing them..........have a great day ...............yea right.........going to put my wrap back on, now, so everyone " hold your ears" ,  and put your kids inside the house.......................

Ducky, Sharon--I am with you!  I just spent an hour getting mine on today.  It was so easy last week when my sister was here. And tomorrow my therapist will probably laugh at the way I have my hand. Why can't some sort of automatic wrap be invented?  Many inventions are borne out of frustration.  Becky