GRRRRRRRRR I HATE LE..........
Comments
-
I just spent $288 in supplies. For the first time I am depressed over LE. I hate it and I am really not sure I can handle anymore. I had my appointment Tuesday. The darn NP only asked that the right leg to be checked. Anyway since I went back to old place because I can't afford another bill and this place will throw it on my hospital bill I had no choice. So she had to measure both legs since they didn't see me to start with the leg LE. I now have a swell spot in my thigh in two place and it's on the left leg. In January I mention that my left leg liked to swell just above the knee but at the time it was fine. Now it's not and most likely stopping the compression at the knee has cause this.
So on August 6 I get to have both legs wrapped all the way up and then I will have to wear compression all the way up. !%!&*(@)(*&(&^^%^% is how I feel. 4- 6 weeks of it. I guess once we get done with that if they think they need to look at my arm then they will send me back to the Dr. The only good thing in this is that I get to put off have my EGD and Colonoscopy until they are done with me.
Passing brownies tonight.
0 -
[[[[[[[[[[KittyDog]]]]]]]]]]
0 -
Oh, Kitty, I don't know what to say to help you feel better. Lousy, lousy LE. I find spending that kind of money on LE supplies depressing, too. Just isn't right. More hugs here to you. Taking a brownie and passing along . .
0 -
Aw, Kitty, that just rots!
We'll all gear up with you for your Aug. 6 wrap start. Four to six weeks, huh? We'll be rooting for four.
Or actually, three-and-a-half.
You can do this!!! Tell us how we can help.
Extra hugs,
Binney0 -
oh Kittydog...so so sorry. I am making you my special pan of homemade brownies with Ghirdellie dark choc chips--they are loaded baby and can make anything better...HUGS to you! Le just sux! and we understand just how you feel right now.
Maggie
0 -
thanks everbody. It's just depressing. The more I think about it the madder I get. I can't help but wonder had they had me do MLD on the left leg, maybe it would not have developed. She like me thinks I probably had it before cancer but like most overweight people it gets blamed on being fat.
Let's just make my day worse. My puppy just bit me on my LE hand in two spots. Broke skin too. I have applied meds. and bandaids will check it good tomorrow. I was trying to put her ear drops in and she decided she didn't want them in the other ear. How can something so little and so sweet be so mean so quick. She is so darn cute..now 2 pounds.
The sun will come out tomorrow. Today I am allowed to be beyond frustrated with LE.
0 -
Awe KittyDog, I feel for you!! I will pray that things get better... I am trying not to let LE rule my life, I have a mild case, but things keep on popping up - I get one place better and then the swelling goes another.. When all the fluid flows where its suppose to go - I lose 3 lbs.. when its not I gain.. Wish the doctors would understand this instead of insisting I lose more weight or threaten me with cholesterol meds (which I refuse btw).
Today will be better and your little puppy bite, I hope, is fine this morning!
Ok back to my editing press releases - I'm behind this morning -better get my rear in gear!
0 -
Having a ShihTzu puppy is what has seen me and my husband through this ordeal...........the little guy is 6months old and such s JOY!!! Liz
0 -
Ah KittyDog--What a bummer! And in the summer too. Will be thinking about you as you are wrapped. As Binney says let's hope it goes down fast. Hang in there.
0 -
(KittyDog) hang in there.
0 -
KittyDog, lower extremity LE sucks SO much. You are allowed to feel depressed. Now is when it would be neat if we could all get together physically. Real hugs and real brownies might not help but sure wouldn't hurt. ((((KittyDog))))
Do yourself a favour and get a soft muzzle for the little sweetie. Or at least have someone hold her head. I have to ear-drop a large Labrador (frequently) and although he's never laid a tooth on me I sometimes have to hold him in place with my knee so he doesn't move his head and make me skewer his ear. He knows what's coming and ain't that keen on it. Go figure.
0 -
I am wrapped for the first time. Not pleasant. The finger wraps are especially fragile. She wanted me to come home, unwrap and do it again?! Are you kidding me?
It does kind of hurt, especially in my elbow area. I have two cats and they could have a heyday with all these wraps. Going to have to shut them out of the room when I try to do it myself. I think I understand the how to in the arm...totally confused with the fingers, though. And I know that thinking I know how and then actually trying to do it myself are two entirely different things. Thank you, Kira for the visual on the finger wrap. Scared to death to try to do this myself. I feel really nauseous. Seems weird that being wrapped could make you sick a. I felt fine before...now I feel like I could vomit. Yuck.0 -
I unwrapped myself. The nausea went away pretty quickly.
The swelling is worse in my fingers and hand than before I was wrapped. My thumb is also swollen, which it never has been before. What do I do now? I am going to try MLD and see if I can get it back down. Worse off now than I was.
0 -
Dawn-Hope, you aren't the first to experience nausea. I don't know how common it is but it certainly can happen. As for your thumb, if you are able, do some deep breathing, elevate your hand/arm, drink lots of water and hopefully the LE queens will be here soon to advise you further. And yes, try the MLD.
0 -
Hi KittyDog,
Sounds like a really bad day! I hope that the wrapping reduces your legs quickly, and you are in day garments soon. After years of my hematologist bugging me to wear compression thigh highs instead of knee highs, I finally gave in and bought some. I usually get juzo soft stockings, but I sprung for the extra cost of juzo soft silver on the hopes that they would be cooler. They really are! -- KS1
0 -
Dawne; Your wraps sound like they were too tight if you had swelling start in fingers. My le girl said they should be comfy and they were when she wrapped me. In fact I felt more comfy in my wraps than my sleeves. I think it was wise to take them off. Too bad, after all you paid to get them wrapped.
There goes a few bucks down the drain and I bet it's not the first time we wasted money on this dang LE stuff!Kitty, Oh my, I just want to hug you and be your personal slave until you are unwrapped. LE sucks so much. But we gotta do what we gotta do. Hang in there girl. Keep us updated and we will be there for you. Sending a huge Hershey chocolate kiss
!0 -
Better today and thanks everybody. I will get through it.
KS1 mine have to be custom. She went with a cotton one and they really aren't that hot unless you are out in the heat. Then you notice you get hotter quicker than anybody else.
Never did the brownies or chocolate but I am indulging on a fresh strawberry slush from sonic. Man these things could be addicting they are so good. The fresh pineapple is good to but it has too many chunks that want go through the straw.
0 -
Anyone who lives in New Jersey.....could you please say what LE Therapist you have had success with.....I did go to one last Summer BUT they kept me coming and going.....I have had success on my own...Liz
0 -
have you been in touch with the folks at Centra States in Freehold? Have not been there but know someone who is very happy with them (Grannydukes)
I used someone at HackensackUMC but have not been back for a time
0 -
Thank You for your input.......I did go to Wyatt Rehab in Long Branch Last Summer....just was not a great experience.....they would give you an appointment for 1:00 then call you and ask if you could come at 2:00 and it went on and on......I thought the therapist I started with, would be the one I would be seeing...but No that did not happen......I just ordered a gauntlet from LymphaDivia's for when I go to the gym.....so far I have been doing well without a sleeve....but may persue this when I see how the gauntlet works....Liz
0 -
wow, then do check the folks at centra states as I know that Grannydukes is happy, so far!
gees, been thinking about taking a training season so learn this and really want to see if I can do it
0 -
I am 4 days post prophy MX and feeling good. I have been very careful about arm movement but wondering how long I need to take precautions to reduce risk of LE (no nodes removed). Had lymph drainage (by LMT) twice this week and no swelling is present.
Someone (here) said I should not raise my arm above shoulder height for 7-10 days (I think). Just need to confirm the time and the whys so I do this right. I need to get moving on some exercise on the LE side and just wondering when I can add exercise on the prophy surgical side and if there are restrictions on what I should add.
This surgery is my cut-off point to get on the nutrition/exercise band wagon. Getting my plan in order so I lose some pounds, increase my strength and reduce LE severity/recurrence (whatever). I promised myself I would really try and learn to live nicely with Little Martha (LE arm) and that starts now.
Info is appreciated.
0 -
well grannydukes just fired the centra state PT.....that is #2....I was happy till i ran into a problem with the bras....then i remembered she didnt even measure me.so i called back today to cancel my tues apt.cause i couldnt get any bras and she was supposed to call me back and never did...SEE YA.....
No I called my BS who works out of Riverview and she now wants me to go to their PT.LANA and all the other good stuff....im sick and tired of all this crap.Im doin my exercises,drinkin plenty of water and sleeping with my expensive sports bra....even the Kiniseo tape didnt work...maybe its just me but im fed up with all of this....
have i told you lately how much i hate LE?
Sandcastle---I feel your pain....Not all LE PT are created equal...im not gonna stop till i get what the hell I want...Took me 4 BS to be satisfied....Dont give up.never give up.We can do this.I say it over and over again.
0 -
Ohio, it's good to hear you are doing well and not experiencing any swelling. I believe two weeks is the time the lymphatics need to heal, and not raising arms above shoulder height minimizes stress to this area. I didn't know at the time of my bilateral mast, but even with a prophylactic mast or no sentinel node biopsy, when they remove the breast tissue that goes up into the axilla area, the tail of spence is removed, which includes several lower axillary nodes. So, any mastectomy should allow two weeks healing of the lymphatics. Limited arm raising will not prevent you from walking and moving around more as you feel able. I wasn't allowed to raise my arms above shoulder height at the time of my mast because the PS had inserted tissue expanders and didn't want the pockets damaged. I started stretching immediately after that period and didn't have any range of motion problems.
0 -
Granny.......I have kind of come to this conclusion about LE....We are on our OWN.....and we can do this well......just keep researching.....all the time....a lot of trial and error...I know the place I went to Use to be Norton's in fact the BS and his office did not know they changed......but I have to say a lot of this seemed HokusPokus to me......I did ask after MLD...How do you know the Lymphatic system is Open and the LE Therapist answered WE DON'T KNOW! I did go a whole year without this group.....I do the deep breathing and that seems to help me....so I will just Truck on......Somtimes it seems too many Doctors involved can just be so Depressing.....Inner Peace is more important....Liz
0 -
Can I just say GRRRRRRRRRRRRRRRRRRRRRR.. Good news is I got the swelling in my good and bad arm down a bit - not sure if it is bad news or just LE LIFE but now my bad breast hurts something fierce this morning.. Is LE a life of YO-YO - Back and Forth - Never everything better at the same time??? Frustrated - just wanted to take sleeve and swell pads off today.. I have all my computer work to catch up on because of the time I took off for the grandkids :-P
Edit: I must still be going through the realization stage of this... I think I accepted this lot in life, then I get scared.. and cry..
0 -
GmaFoley, good to hear your arms are feeling better. I think it was Kira's therapist who once said that dealing with LE was like playing whack a mole. Sometimes it moves around without any reason or predictability. Since I have truncal LE and now my arm and hand are somewhat involved at a low level, I am experiencing much of what you just described. Rarely is everything behaving all at the same time, and it is very frustrating. I keep reminding myself that it is summer, and one's first summer with LE is, in my experience, the worst. It gets better further out as long as you stay with the MLD and compression. You are training your body to reroute lymph fluid around the compromised areas, and it does take a while for it to learn the new pattern. The fact that the body can be retrained in how to move the fluid is really amazing. Perhaps Kira or Binney can jump in here to clarify, but I think it takes about two years for this retraining, which is why it does seem to stabilize and feel better the further out. It's the best reason (I have been telling myself this about my arm) to be consistent with the self care routines, the MLD and compression.
It is not unusual to have the feelings you are experiencing. The unpredictability and element of the unknown is frightening. There definitely is a period of adapting to all the self care routines, learning about LE, and a mourning that goes along with it. And I do think in the beginning there can be some back and forth with denial, acceptance, frustration, anger and sadness. We have also talked here about how flares seem to bring on some kind of physiological changes that can make folks irritable and weepy. The main thing is that it does get better. Binney and Kira always always say that there is a steep learning curve for LE, but once you get a grasp of the info and you develop a routine that works for your LE, you do feel more in control, which tends to boost one's outlook. It is doable, and you will get there - you have our support. And no matter how long one has had LE, it can make one emotional at times, because, well, LE does suck. I had an anxiety attack and emotional meltdown a few weeks ago before a vacation, and I was amazed at how everyone here really got how I felt. Their sharing and compassion lifted me out of a dark hole. You are not alone in how you feel. Let us know how we can help.0 -
I don't have a routine that works. We had to reroute things because of the axillaries were toast.. He showed me how to move it down but, excuse my language, I cant get around my damn boobs, to move things down - I'm just very uncomfortable... I do my best, but my time with getting the LE therapy is coming to a close - its $300/ visit...
Then there is the night garments - I don't want to wear my sports bra with swell pads to bed, and every compression shirt I have seems to not fit - either the arms are too big or the torso is too small - I'm feeling very fat!!!!
0 -
JO-5 - Oh yes, the worst my LE has ever hurt is when we've had big storms. Mine is affected big time by pressure/weather changes.
0 -
Jo-5 Now that I think about it - it is overcast, cold and cloudy today - yesterday it was high 80s and I have lots of pain in the breast and axillaries today.
0
