GRRRRRRRRR I HATE LE..........
Comments
-
This person doesn't deserve to call herself a THERAPIST. What rot. Obviously doesn't know what she's doing and is blaming you for her lack of ability. My therapist told me that if I took care of myself, did what I was taught to do, that although I may have occasional flares, my LE could be controlled. I believe her. Don't believe yours. Fire her. I have a little piece of fudge I was saving for later...you may have it.
0 -
KS1--When I read your post, I'm assuming the specialist is a LE doctor, and from your location, I wonder if her initials are KF?
There are few LE physicians in the US, and there is no board certification for lymphology, and sometimes these people are just plain wrong.
Yes, the biggest risk factor for severe LE is mild LE, but if you treat it, it SHOULD respond.
Hands are tricky things, and sometimes "less is more"--and poorly fitting compression can make LE worse, but to tell you to accept progression as your new normal, I don't think that's acceptable, on many, many levels.
Did I read it right? Is this the physician who told you this?
Kira
0 -
Geez Louise, KS-1, you've got to be kidding me. This is a rule of thumb I live by, if they tell you it is in your head, run to another provider, if they tell you you'll have to learn to live with it, and don't give you tools to cope with it, then 95% of the time you need to run to another doctor.
0 -
KS-1. I talked with my LE therapist today about your therapist and she said run, don't walk away from them! She suggested you turn her into the NLN and showed me countless pictures of before and after pictures of how much LMD can help! I was pretty amazed and very hopeful. Hang in there!
0 -
I so freakin hated LE today.
It is exceptionally hot where I am today. I admire those of you who can keep your sleeve on when you get overheated.
I had a work event outside. I decided I did not love what I had to wear and made a quick shopping trip. I am down about a size...so I got shorts and this cute white eyelet jacket...with 3/4 sleeves.
I couldn't find anything presentable and structured with long sleeves, so I said to myself, I can go with no sleeve for a few hours. At least my arm will be covered from the sun. I slept in compression last night. I thought I was such a hot shot getting away with something. I felt so good about myself in that outfit.
Within 20 minutes my arm was the biggest it's been. Thankfully it still stays to the upper arm, but I started to get the red and white bubble thing that last summer we were so sure was cellulitis. (A white bubble with a red outline.)
I just went into the ladies room at work and sobbed.
I switched back to my coverup and sleeve, and I was so miserably hot I only made it about an hour at the event. I was so relieved when an emergency at work gave me an excuse to leave.
I just have no idea how I can attend anything outside in the heat where I have to look good.
It's so freakin fickle...just a few days ago my arm looked so good I half way believed I was in "remission". I just feel like the wind has been knocked out of me.
Thank goodness it's cooler tonight.
0 -
Ladies, I'm scared. I haven't been able to get out of my head what KS1's therapist told her. I have to know it isn't just a downhill slide into puffiness ... I'm 41 and want to LIVE and not dread 'the inevitable.' GRRRR!
Drove 5 hours today ... hot, humid ... then sat in meetings for a couple of hours. I drank 3 liters of water today but when I took my sleeve off ... there are red welts in the shape of the silicone dots on the top of my sleeve. WTH? Sweat? I have started washing them in another detergent and that may be the problem ... but has anyone else suddenly developed an allergy to the silicone of arm sleeves in the summer? I'm just so scared....
0 -
Dawne-Hope, I don't know about an allergy but I know that sometimes I also get red welts in the shape of the silicone dots and sometimes I don't. There doesn't seem to be any rhyme or reason to when I get them so I don't think it's something to be scared of.
Cookie, I'm so sorry you're having so much difficulty with this now. I have no words of wisdom for you but I can send love.
Leah
0 -
hi guys, we've had a death in the family, so i'm not on as much as uusual.. quickly, i clean my garments ONLY in woolite cold wash, 'cause i found others DID irritate my skin. the outside garment i was referring to has more compression, cause im working in the garden. i find LESS compression to be better for me, tha
i went to my GP today, who believes i will die from bc; bcecause i can't take ALS.. im doing natural, which he doesn't agree with, nor help.. first thing he does, is tell me "take those things off!!"suppossedly, he thinkks they will cause a fungal infection... no way, not with the care i take with my skin, and how careful to infection i am.. i just can't believe theyre dinasors like him left.
thank goodness , i have a wonderful le therapist, so i pay him no mind.
KShes has proven to me, that with wrapping, garments, and careful care, it may flare, but she has trained me so well im in much better shape, than when i started, over 2 yrs ago.. it is chronic, but progressive, i think not. the problem is, its a long, hard road to education, and then constant vigalance. i hate having it, but i have MS; which is another chronic ilnees, and i've learned to control IT, and "accomodate" it... i think that le is the same. i have to make more accomadations when i have a flare, but can'tlet up, even when its' "behaving" just my IMHO....3jays
0 -
cookie, I'm sorry for what you're going through, hugs
0 -
Oh yeah, that's the lesson I learned the hard way with this latest flare. As we entered the spring season I started getting REALLY sloppy with my care. I wore my compression garments during the day, but kept giving myself breaks from my night sleeve. And then, when I felt the creeping bog instead of wrapping right away, I'd look in the mirror throughout the day holding both arms this way and that saying "Am I swelling? Am I swelling?" Like a mantra. When my husband noticed it, I got scared, cause he NEVER notices, but still didn't wrap. Golly gee (not what I really want to say) am I stupid or what, So now after three weeks of treatment, wrapping, etc. I'm back to where I was and I'll never do that again.
To those of you who are having trouble with the H & H (heat and humidity), Columbia puts out a not too expensive sun protective shirt, It has snaps that allow you to roll up the sleeves or not, it's extremely light weight with lots of air pockets to whisk away the sweat. And you can wear it tucked in or not. Either way it's attractive. Might help some of you like it did me,
Jaysmom, all of my compression garments say NOT to use Woolite, I use Dreft which is for baby's stuff and I've never had a problem. I get the supermarket product of it which is lots cheaper.
Don't kill me for saying this, but I can't WAIT for winter!!!!
0 -
Hi All, I have not written lately but lurking as I am wrapped 24/7 and it is hard to type. I have been so discouraged due to poor therapy. I was referred to a place near me that said they were LE trained (one weekend). Said I had Stage 1 LE and three weeks of wrapping should do it. Threw a sheet of exercises at me, wrapped me. I kept having to ask about MLD. They did about two-three minutes of it each time and rewrapped me quickly. Nine weeks later no change. The MLD was alway in the affected quadrant and with clothes on. I realized what was not being done from all of the info under this forum but could not get to the LANA certified due to distance and my work. Now that the school year is over I got an appt at the distant one two weeks ago. She measured my left arm against my affected right arm. My left arm had never been measured. I had only been wrapped an inch past my elbow as they said I did not have LE in my upper arm. My upper arm is the most affected now and I am being wrapped to my armpit. She carefully went over exercises and determined at least that I was doing them correctly thanks to Healthy Steps and a Steve Norton demo I bought(and input from you great people). She is doing MLD on me for 45 minutes!! and in all four quadrants. She also had me demonstrate how I do MLD and I was never asked to do that before. I had a session on skin care--never before. She also had me show her how I wrapped myself. In four days I had a 21% reduction in swelling! I am going to be measured again tomorrow (day 12) and may be able to be measured for a sleeve. Most discouraging is that she says I am in Stage 2. Oh, the other place told me to find my own fitter. I have a lot of loose skin in my upper arm from losing 100 lbs and they said they did not get into custom fitting. This therapist has someone who will come to the center and both will help me with fitting for a custom garment and night sleeve. After just five sessions since May 23 I feel so much more hopeful. I wrapped myself this Sunday due to the holiday and felt more in control of what I was doing with her help. She now does only LE all of the time. I also have fibrosis in my upper arm (the other place said I had none) and she is now putting foam chips over it. She also massages it differently. I now feel like maybe I will not be wrapped for life! So KS1--yes please find a different therapist. It makes all of the difference in the world. I pay the same copay for 1 1/2 hours as I paid for 30 minutes before. Plus she is very interested in what I have learned from this site, NLN, etc. I am not sure if it is LE or tamoxifen making me so down (or 95+ heat) but I am finally thinking I may be able to get more control over it. I will say LE has made me forget I had bc. Oh well, I have vented and will now do my Healthy Steps. It always makes me feel better. I may soon be asking about garment questions. Oh yes, she helped me find a compression camisole that is really helping my truncal LE. Life is looking better. I would probably still be at the old place if not for Binney, Kira and all of you other great people sharing information. Thanks! Becky
0 -
Wow, Becky, it's so wonderful to read your inspiring story. Bless you for fighting for yourself and winning a battle or two. I never know whether to refer to LE as a disease or a condition or.... Whatever it is, if there is anything good to be said about it, it's that WE can control it once we are shown the steps to do so. It's just so darned hard to do it ALL THE TIME, EVERY SINGLE DAY. Anyway, happy your spirits have lifted. Keep fighting!
0 -
Cookie, Dawn-Hope, 3jaysmom--hugs to all.
Cookie, when the ##$ LE acts up, just when you think it's under control, it's so disheartening--and the emotional reaction tends to be one of utter desolation. Binney and I say we're inconsolable when we flare. We think there's a biological reason it's so powerful of a reaction--like we're scientists, or something.
Kira
0 -
Ladies: Do not panic. I have one word for you: Binney.
Binney has managed to keep her LE manageable - she is not sliding downhill into LE oblivion with big, puffy, painful arms. She is keeping it manageable and in check.
I use Binney as my little ray of hope when I feel myself starting to panic about where I'll be in 3 years...or 20. I have to tell myself, "If Binney can keep hers in check, I can do it too."
Seriously. Don't panic.
And I will join the chorus of voices demanding that the stupid moron be fired.
I have to tell you guys a funny - I used to work with this idiot who would constantly misuse words. My ALL TIME FAVE which is now a family classic, is this - he said, one day in a meeting, that he was going to have to 'throw down the gondola.' I use this constantly now, because after all, a gondola is even heavier and harder to throw than a gauntlet, and I can use it to paddle around in when I need transport across waterways, etc.
Throw down the gondola and fire the idiot.
0 -
Cookie, that makes my stomach hurt to hear.
Been there, done that. Still do it sometimes, and it's such a hit every time. Good control means I start thinkiing I'm "in the clear," and "just this once" will work -- and then, BAM! Right back in the hole. Please know you're not alone, at least. Time to break out the brownies!Dawne-Hope, I'm so sorry for the fear this stirs. It's going to be hard to shake, too, because every time you have a flare -- or even when you're just depressed -- it'll be zinging around inside your head, ready to discourage you. If it's any help I've had LE for almost eight years now and I'm still fighting with medical people who don't believe I have it because my arms are the same as they always were. (Duh!
) As a reality check, there ARE some things that can lead to progression. Infections, for instance. Which is why we're all working hard at keeping the fluid moving and the skin protected. Maybe KS's therapist has never seen patients who actually take care of their LE, and that's why she's saying that -- it's a possibility, unfortunately, since without support it's mighty hard to manage LE over the long haul and plenty of people don't do anything about it. But for those of us working at it, we can definitely look forward to the future.
In fact, we're in the midst of a "Renaissance of LE research," and I'm even hoping for some break-throughs in the near future that will make this all much easier to handle. Andrew Stanton in the UK and Stanley Rockson at Stanford are both working in very promising directions that should produce some new ideas for diagnosis, prevention, and even cure.
And they have good support from the Lymphatic Research Foundation. (A pause, please, in our regular programming while we take a moment to cheer for our research heroes!
)3Jays, your GP sounds toxic. Can you ditch him in favor of someone with at least a modicum of compassion?!
So -- lots to look forward to, D-H, and in the meantime take heart!
We've got the tools we need to keep ourselves well, and we've got each other to make the path a whole lot more pleasant.Gentle hugs,
BinneyWait a minute -- I just need to edit this for those women here who haven't kept everything in control, and they're already dealing with stubborn fibrosis and repeated infections (which can even happen with good control
). DON'T DESPAIR! With the help of a good therapist fibrosis can be reduced and your arm function and range of motion improved, and if you start now to do your best with self-care it will brighten your future and keep further complications at bay. And don't waste any energy beating yourself up, either -- we do what we can, that's all. Be well! 0 -
Becky- sounds a lot like my experience. I feel as if I've made no progress in about 8 weeks now. I just called today to make an appt with a new therapist. I have an appt. on the 14th. Can't wait!
0 -
This is for KS1 - My LE is in my hands, not my arms. You therapist is wrong. When I treat it with wrapping at night with short stretch and wearing the gloves, it is BETTER not worse.
I'll say up front that I am NOT a good example of how to treat b/c my job involves lots of computer work and I simply can't type well with the gloves (and I can't quit work). So, I've figured out how manage it myself wrapping at night and taking gloves off just for work (also, interspersing easy tasks in between typing so it gives my fingers a rest), making sure I hydrate and keeping in a cool environment and I think it has helped me. The biggest help to me also is that I had a good therapist who gave me a weight and stretching routine with the sleeves and gloves which I do 3 times a week religiously. It's rare that I slack off of my exercises. I also found that regular physical exercise helps me (maybe stimulates the system?).
But I sooooooo relate to the originator of this post - it stinks worse than BC or chemo and I'd love to know why there's so much publicity about mammograms, BC, etc. but no one ever tells you (in fact I didn't know it was a risk until after I had surgery and prior I had had 6 or 7 opinions) that your life, ability to use your hands/arms can be changed forever. Why don't they tell you? And then, they've developed hundreds of treatments for BC which we can be thankful for, but then they can't develop a drug for this? So thanks, Ladies for articulating what I think many days!
0 -
I do have a question- I have the hardest time getting the swelling out from between my knuckles. Does anyone else have this problem and have you been successful in getting it out of there? It's really sore.
0 -
Binney...thanks for the good words.
When it's cool and I am indoors I can get away with a "cheat"....but when I need it most...in the heat..outside....no I can not get away without a sleeve.
I have a co worker who is muslim and expecting so she is covered in a lot of fabric right now...so we are not totally alone....
0 -
Melanie Ann- I do hope you find the next therapist to be what you need. Mine new one was so booked that she asked if I could come in at 7:00 am for a few weeks even though they do not open until 8:00! She arrives and unlocks the center and we are alone until 8:00. I really appreciate her consideration. I do not have it in my hand or fingers (hopefully never) but I am sure someone will give you some advice about the swelling between your knuckles. I bought a DVD on MLD from the Joann Rovig site and it talked and showed how to do MLD on swelling between fingers and hand. It cost $50 though. It also showed one how to wrap, do MLD, etc. I now understand what MLD is--I fell so much better after the 45 min MLD by her. Keep me posted.
Cookiegal-Bummer about the heat. I have visions of being inside all summer as heat hates me and mosquitoes love me! I thought about moving to Alaska but my therapist said extreme cold can trigger flares also. Maybe we should move to a cave where it is the same temp all year round!
0 -
Awwww Becky, you blew me away with the extreme cold comment. Here I was soooo looking forward to Winter's blast!
0 -
I'll take winter over summer any day - and I was never of that mind-set before LE. It's 101 degrees here today, my A/C went out, (just got it fixed) and we were DYING.
0 -
Suzybelle, If my air goes out I am off to a hotel!
0 -
I am so bummed today. went to the board certified specialist today. I am so f---ing wrapped up i can't do shit. Can barely type. Not sure if I can do this. This is worse then the biopsy, surgery and radiation combined. its my right hand and I am right handed. she is good but I can't deal with this. My whole hand is wrapped down to the tops of my fingers and then up to my armpit. she said I will be like this for a minimum of 2 weeks' 0r more depending on how fast the swelling goes from 12% down to 5%. once there I can get a garment' but not before. It has to be reweapped 2 times a day' and I suck at doing it'. can't hold a friggin pencil or pen. tried left handed well forget that. not to mention the bandages are tight' but necessary. right now I hate everyone but hate the node removal that caused this shit' and my friggin 1/2 ass system which didn't work right after surgery. like cancer isn't enough. if I say this to anyone else they will tell me to be glad I'm alive. you guys understand. sorry for bitching.
0 -
duckyb1--Hang in there. You get used to it. I am also right handed and my right arm has been wrapped for 10 weeks. Hopefully a reprieve soon. I have only wrapped myself a few times but it does get easier. I have gotten used to doing a lot of things I thought I could not wrapped. If you need any tips, PM me. Becky
0 -
Cookie I so understand the heat thing. I stupidly volunteered to help at our schools field day. They had it two different days and I just wasn't thinking about the heat. They put me watching the sprinkler and they provided me with a chair under a nice tree. Day one wasn't so bad until I got in the car to come home. I thought I might pass out before I made it home. Get home and got a quick shower to cool off and the power went off for two hours. uggg 98 outside and 80 in my house.
I wore my sleeve both days and that swelling is not to bad. It's the truncal that is acting up and I really should put on that cami but I don't think I could handle how hot it will make me. I too have been given myself time every night with out the sleeve on. I do usually elevate my arm. However it is the oven mitt I have been having the problem with. I just haven't been able to sleep with it on and the house so hot. I give it till 3am and then take the jacket off...another hour and the sleeve rest comes off. I know it is bad for me but isn't not sleeping just as bad on the body too. My joy of sleeping in is over. School got out today. Now back to training by girl to stay up late so Mommy can get at least 6 hours of sleep.
0 -
Ducky- so sorry about your hand/arm. I know exactly how you feel. Mine is mainly in my right hand and I'm right handed as well. I hate the comments I get when I'm not wearing my wrap..."It doesn't look that bad." Ugh...yea I know it doesn't but it FEELS bad and that to me is just as bad. I can barely lift my parking break. In fact, I reach over now to do it with my left hand. =( And not to mention the hours we spend every day to make it "not look so bad." It's probably not productive to a good mood, but I sit there and think of all the other things I could/would like to be doing with my time,and that just makes me feel worse.
0 -
i can't go back & check, but thanks whoever told me not to use woolite. here i thought i was doin good!!! im so grateful to yall that we can always find an answer, or rig something up till we do! thsnks so for your comments, both Kira, and Binney.. the 2 of you have been my heroes, and mentors for almost what 2 1/2 years now!!! time flies when your havina good time, hahaha 3jays
0 -
Melanie-Ann, I started to write to you about fluid around the knuckles and lost the post
I hold fluid there also. What I do is to put foam "carrots" in the web spaces when I wrap: I actually have a bunch of gray foam that I put on my hand, forearm that was created by a PT a couple years back. There's something called the "Law of LaPlace" that if you create more of a circle you will put more force on the front/back of the hand, rather than the sides.
When I do MLD, I work those spots with both fingers, with stationary circles and thumb circles.
There is one spot, between my index and middle finger that is STUBBORN.
I do find there's some fluid in the palm as well and I try and bring that through the web spaces.
I hope this makes sense.
I used to do a lot a gauze hand wraps when I was hanging around in the evening, but now I tend to get home from work, take a shower and wrap. Ever since the hand fracture.
Kira
0 -
duckyb--I hope you are doing better today. I have been thinking about you. I remember my first day of shock when I was wrapped and had so much trouble with the computer and grading papers at work. Really you do get used to it.
I am off my tamox (or LE) low from yesterday because I got measured for a sleeve and glove today!!! 10 1/2 wks of wrapping and I now see a light at the end of the tunnel. My therapist uses a fitter that often gets the garments in 2 wks--occasionally in 5 days. But I am going to think it will take four so I won't get too discouraged continuing to wrap. What a difference a competent therapist makes. I even get to rewrap myself tomorrow and Sunday to gain more confidence. As i said doing Lebed Healthy Steps always makes me feel better and I haven't even done them yet today. Going to be a good day. (Sounds as if I am becoming bipolar when I have always been an even laid back person). A good Friday to all. Becky
0
