GRRRRRRRRR I HATE LE..........
Comments
-
Rockym I too have trigger fingers in both hands. Both thumbs and both middle fingers. The best thing I did was has trigger release surgery for the LE side. Intially I had swelling in the hand. I got it back to normal and it acted up this past week. I still have some pain with over use but nothing like it was before surgery and the left hand settled down. I think because when both locked so much I used the left hand even more. The right side was much worse. When it locked it had to be pried open. Hope you find some relief. I waited to long but they can give cortisone injections if it isn't too bad.
0 -
THX Rocky- I'm on my 2nd therapist.
Be careful of that injury., Clean it SCRUPULOUSLY and give it the triple antibiotic ointment---heavily overnight.
Do you have keflex on hand- just in case ?
Hope it turns out to be ok.Good Luck.
0 -
Went and saw doc today - it was a NEW doc in the office - awesome doc... My chest is so tight and coughing... I do have the beginnings bronchitis.. She gave me a new antibiotic just incase it gets worse. She is one that doesn't think you need to spend more money by coming back if you get worse.
We started talking to get to know each other and went over my apnea results
. I definitely need it - 46% of the time I am not breathing. Finally someone explained it to me! She says after I get used to the CPAP, they need to do another oximetry test because she thinks, I will need oxygen..but it is kinda spendy. She said if I had good insurance she would send me for a sleep study because it would narrow down when I have the problem the most.Note to self - put on sleeves and gloves if you are going to put clean sheets on a king size bed... I have been bad all day no sleeves gloves - the little rebel I am... hopefully, I won't be in trouble.....MLD and water tonight
0 -
GmaFoley - It was the little things at first that caused the most swelling for me ... cleaning out my cat's litter boxes, changing sheets, taking out the trash, vacuuming, cleaning the toilet ... all of that really made me swell at first ... I know now that when I do those things ... that I can't work out that day ... I have to stretch it all out, pace myself ... or I get a big time flare. This whole LE thing is a huge learning curve ... but we live and learn. Take care.
0 -
GmaFoley, my left arm has had bug bites and all kinds of trauma, including this gash in the hand. I'm surprised it's only my breast that has the LE.
KittyDog, sounds like it was painful :-(. So far mine is an annoyance. It started with swelling in the middle finger and then went to the ring finger too. After that, it became the trigger finger thing. I will get the injections if it doesn't go away or if it becomes too painful. I'm hoping for the "go away."
0 -
gma - I do feel claustrophobic sometimes, those are the times I feel like "ripping" off the LE garments. Also, it makes sense that changes in the barometric pressure would cause some issues - and we did have a big storm come in.
Purple - I think you need a new LE T, mine ALWAYS does hands on, she does a CDT type massage, and, in the beginning had me go through the instruction she gave me, and made corrections. She's also added to my MLD over the last couple of years as I've had changes to the swelling. Is you LE T certified? Not sure what the point is if there is no hands on, mine says you shouldn't wrap without massage first.
I told you guys how my bunch biopsies on my MX site, close to the sternum, caused a lot of swelling in my arm, all the way to the tips of the fingers. I've managed to stab, cut, etc.... my hand several times, and haven't had near the swelling that the punch biopsies caused. My LE T said a lot of times small injuries (punch biopsy, bug bites, etc..) on the chest can cause a lot more trouble then injuries to the hand. Crazy - don't you think?
My son is an ER tech in a really busy ER, he said that Bacitracin Zinc works way better than triple antibiotic, and that's all they use at their ER, just thought I'd pass it on!
0 -
you shouldn't wrap without massage first.
No wrapping involved here at all. Wearing the sleeve and glove all day though. I posted on the exercise thread about wondering if the sleeve is bothering my wrist more and wondering why I should not possibly be using it only for exercise in my case. Very unsure.
I do plan to ask her to do hands on next time I go in. Thanks for the tip on the bacitracin zinc- I had it in my hand yesterday and put it back in favor of triple anti B!
0 -
I am so sad...disappointed and a little depressed.
I had my first LE consult at Mayo today and it did not go well...i had expectations (silly me) that were not met.
I have been managing my LE for over two years...I was really hoping to get a refresher, see what garment recommendations they might have and order some new garments.
I knew from the beginning that we would not see eye to eye...she started off by denying my reality in saying how 'rare' it is to develop LE with only SNB and how 'uncommon' it is to develop in the trunc and non-cancer side...She acted like I was a whiner since LE really shouldn't hurt all the time and with 'proper' exercise i should be back to normal pre BC activities. WTH!!!!! Who is this woman! I let her speak, asked about ordering garments and was told that they don't deal with garments...I then asked what kind of operation were they running and told her I do not agree with her assessment since someone can develop LE without ANY nodes being removed...it can be genetic, I could have had a weak system to begin with and my cancer tx could have put me over the edge...I was so upset my hubby had to take me for a drive before we met with my onc (who was awesome and very sympathetic, she was actually willing try to find me a fitter but I have to travel 2 hours to see her and I cannot afford to take more time off from work, especially since I still need a bone scan and consult with a pulminologist for possible biopsy of enlarged lymph nodes in my chest
GRRRRRRRRRRRRRRRR
0 -
o2b - grrrrrr I guess - what the heck, is she certified, not just by a weekend or one week class, but truly certified by LANA or NLN or something? I have to go 4 hours to my fitter, but it's worth it to get a good one - sometimes they work on Saturday's, or even if they don't if you have to come from a distance they may be willing to come in on a Saturday to fit you. My LE T keeps up on the garments, and even has fitter certifications, but where she works does not sell DME's so she can't sell them and has to send you elsewhere.
hope tomorrow is better!0 -
o2bhealthy,
Sounds like you were talking to my ex-LET. That's exactly what she says! Glad you stood up to her though.
Now, this is just me, but I was a LET, I would know those garments, they're part of the job. In fact, I would vountarily wear a sleeve and glove for 30 days so I would know what my patients went through!
What is with these charlatrans????
0 -
Thanks Linda and nibanna! It just makes me sad...all i kept thinking was 'if I was a new patient, unsure about LE I would have felt like an idot and walked not getting the help I need or even understanding my risks'. The therapist kept stressing her 10 years of experience and that I was spending too much time managing my LE...I should increase my exercise and I will be all better...I was too upset to even ask where she got her 'experience'
I will eventually find a fitter and will even ask for help from my oncologist and other ladies in my local BCO group...I am just overwhelmed with the upcoming appointments and trying to make sure it all gets done before the end of the the year and keep my job...
Tomorrow is another day :~)
0 -
O2bhealthy. What a crying shame that your expectations were no even 10 percent met.
I am glad you stood your ground though. Still don't beat yourself up for what you should have said. When we are in these emotional states we just don't seem to say the right things at the time. Save your energy for healing and moving forward.
Your therapist needs a bout of LE and then we will see if she gets on the LE bandwagon and manages her LE. Maybe she will just watch it rot off her arm. No let's throw her on a treadmill seeing that she advocates exercise so much. I'll let you choose the speed! That girl needs a new job! Grrrr. I'm mad.
Stick with us girl!
Here is a big sloppy kiss for you girl and a batch of my soft cake like chocolate chip cookies.0 -
Who is this woman!
My last therapist! ( and a close second to my current one )I was totally new to this o2b and my first therapist actually said I didnt even have LE! Second one calls me stage 1 but hasnt laid a finger on me. Not once.
VERY frustrating. I feel for you. Dont they realize we are already at a high stress level after cancer and then LE and working and yadyadyadyada ????
DONT GIVE UP or " they win". Keep trying, and thank goodness you have one good dr. and all the online support and the knowledge you do have . I hate to make it sound like a war with therapists being the enemy , but I'll be damned if it doesnt feel that way after reading so many similar stories- why should we deny the truth of what we have been through, It adds insult to injury.
It makes me feel better/ NO, stronger to acknowledge how bad so many of them are . Sometimes getting angry is just the fuel we need to keep moving in the right direction.
Dont get stuck.
Look elsewhere for help ... you do deserve it.
0 -
I'm down for the count - Just as I started feeling like maybe I can start getting this weight off my dear grandson shared a flu bug with me... bronchitis and sinus infection from this virus... Ladies, flu shots sound good in retrospect... I can't even do my deep breathing, starting to swell - it hurts to wear sleeves... I'm kinda stuck between a rock and a hard place and have no clue what to do -except water and rest ... BTW I am now on antibiotics.
0 -
o2b, sorry that happened to you. It totally sucks when you go to someone new hoping for a home run and you end up striking out. It is good you know about LE and if this one wasn't sympathetic and helpful, may the "Lords of LE" send a few swellings her way! Okay, on another note, how far are you from Phoenix? I see you have Northern AZ in your profile. PM me if you wish.
0 -
O2b - Just don't understand where some of these therapists come from?? I hear and feel your frustration... On the other hand, when I first went in to my LET, he made me feel validated because my doctors kept telling me I didn't have it because - my hands and arms aren't swollen... Now the surgeon keeps saying that I couldn't have LE on my good side, that isn't possible and that HE only took out on SN... I told him that it wasn't that, it was the heavy radiation that caused the compromise.. but I still get very frustrated with my docs. My LET tells me, "One fight at a time, you need to pick your battles" - I used to hear that when I was raising KIDS not DOCS...
0 -
...I used to hear that when I raised KIDS not DOCS.
Good one G!
0 -
O2B, I'm with you. There ought to be some kind of professional profile for those kind of "therapists", with us patients giving them starred ratings. (She'd get minus starts I think)That woman has not the faintest idea what she is talking about. I remember reading an interview with the breast surgeon Dr. Love who said that after she herself got BC, she finally understood what it was to be a patient. We must demand LPTs that know what they are talking about, know what they are doing and have empathy. The problem is that reality is so different. Wishing you lots of success in finding the right person to treat you!
0 -
You could see if you could find her on one of the national certification sites and send them a letter of complaint about her.
Why do we have to learn so much about all these things, doesn't it seem that the people that treat us every day, should know the issues and send us in the right direction - it's like they each have this little peep hole that they look through only at the part they deal with, and, as for the rest, "NOT THEIR JOB"
0 -
I knew I could count on this group to understand
GmaFoley - I hope you feel better soon!
My therapist was from India...maybe it is a cultural thing?
0 -
Poletely tell them you would rather not discuss it and if they are interested in learning go look up lymphedema following bc.You have the poweer to control some things in your life and it is helpful to do so when there are just some things we cannot control. God bless you.
0 -
Looks like I'm on my own.
LE therapist dismissed me. ( I knew this would be my last PT visit/ 3rd)
I point blank told her I am not comfortable with the MLD unless she showed me hands-on and did it TO me, and she said I didnt have enough confidence in myself! I insisted I had more confidence in HER abilities and felt it was best for my LE if SHE did it. She said my swelling was not so appreciable that she felt it would make a significant difference. (then WTH am I bothering to do it and wearing a sleeve and glove all damn day ?!!!!)
I will say she spent a good 35 mins going over every step with me, but I really feel like a leper...this girl just has not laid a finger on me at all.I just put in a call to my former massage therapist. I am going to ask her if she is willing to learn MLD. ( she cant be any worse at it than I ) IF she says yes, I'll be going to her and also doing it here 2x a day in between.
If not, I'm on my own . Oh,with you ladies :>)
PS She is from the good ole' USA.
0 -
YIKES purple - where do you live (PM me), also her name, I'll see if I can find you a "real" LE T!!! Doesn't sound like there was much point in even going to her - my LE T does the hands on massage every time I see her, even if my swelling is minor, and it helps every time!
0 -
purple, I'm being blunt here. Dump that broad! Find a real LE therapist.
0 -
Thanks, Linda but I am in MA. I cant picture driving to Oregon!
I have 2 hospitals nearby. Went to both LE therapists . Wondering if maybe it didnt help that they knew each other and the second knew that I dropped the first .In any case, I am not driving any further. I have to work all day. I'll get thru this though.
THX
0 -
purple, sounds like you're better on your own then with a loser of a PT. Even my 2nd PT did MLD on me and was able to do some without touching my breast. He used a towel to move fluid, but on the first visit, he had his assistant (female) do my breast. It was good since I didn't realize how light the tough was suppose to be. My previous PT didn't really show me and I wasn't that in tune with what she was doing at that time anyway. The 2nd guy, with his assistant, made it much more clear with touch. Of course, my biggest issue is that the breast just doesn't want to go down and stay down so MLD doesn't make a big difference.
For now, I just protect my arm and hand big time. As for a massage therapist... I think that's a great idea. I had a lady who wasn't certified, but did understand breast cancer and the lymph system well. She worked my arm and hand a couple of months ago and it was great. Come to think of it, I should go back :-).
0 -
I didn't mean to come to Oregon, but maybe between my therapist and the internet we can find a good one where you live. There's a new guy here in Oregon that came from the East Coast and was one of those in the forefront of LE therapy - My LE can ask him too :-)
But if you did come to Oregon I could get you in with mine.
0 -
Purple - I am so sorry you are having such bad experiences so early in your battle!
I was lucky to find a willing PT who knew enough about LE to help me and show my hubby and I how to do MLD. Most of the stuff I have learned was through the awesome women on this website and http://www.stepup-speakout.org/
Don't give up! It might take a lot of trial and error but we will eventually find a keeper.
0 -
Rocky
Yeah, it isnt a breat issue anyway. This was tx for arm and hand . whatever- I know only one thing for sure, I am better off on my own than I am with her.
Linda KR, I would love to come to Orgeon and go to LE therapist appts together with you- sounds like fun actually . Thanks for putting a smile on my face !
0 -
Purple, You better go check the mirror because you must have leprosy in order for that girl not to lay a hand on you. When I can't go to my regular LET she recommends me to another and says "she has good hands" Yah...... that means she touches me and doesn't treat me like I have cooties or something else. For heavens sake.......MLD treatment is hand based......unless you can practice magic the fluid is not going to move out without hands on MLD.! What is wrong with her. I am agast!
Your girl saying that you must not have confidence repells me. She is the one with no confidence and that is why she is deflecting and diverting from your requests so she doesn't have to demonstrate or treat you....... Because she doesn't have a clue how to do MLD. Shame on her for putting up her shingle and then not treat you properly! grrrrrrrrr. There goes some more of your hard earned money down the toilet. Please print my comment off and send it to her. She needs to go back to school.
As to her saying that your swelling was not enough to be appreciable to have MLD, she is totally unaware that new pathways can be made with MLD, my LET said so and that was when I was a early stage.
I am in complete....... SHOCK!
0
