GRRRRRRRRR I HATE LE..........
Comments
-
I just received my Healthy Steps DVD as recommended by some of you above. After doing it I think I have been doing the exercises given to me by my PT way too fast.
Suzy-My choir director (if I had one) would have gladly let me go as I would ruin any song with my out of tune singing.
I wish I could put all of you above in a room for an hour and interrogate you. You have so many great suggestions. It sounds as if many of you have worked out some of the kinks through trial and error. If we could pull out the things that did not work for us that are in our drawers and had a lymphedema garage sale to see if some of the items could be used for others--we might make enough to cure cancer!
I had already given up salt/sodium as much as possible years ago due to high blood pressure. Now I have had to give up my precious morning cup of joe. There is a product call teeccino (honest) recommended by Mayo that tastes like coffee but no caffene. I have tried it and it is good. You just don't get the caffene high. Go to teeccino.com
Good weekend to all. Back to Healthy Steps!
0 -
thank you Dawn! I must have missed Binney's post. I only post on here for my LE. Under Armor, that's it! I do not have an awful lot of swelling most of the time, but when I do, I want something that fits all around my shoulder, back and arm, thank you again.
0 -
Kelban - fyi - I also suggest the Under Armor for trunkal LE. I bought a brand called bcg, and the sleeves on the short sleeve are just too short and keep creeping up into my armpit - the Under Armor does a little bit, but not as bad. For long sleeve wear, the best I have found is called Zoot compression recovery - it's made for runners and athletes, but helps a lot. It is expensive, though. I haven't tried their short sleeve - again, expensive. http://zootsports.com/womens/compression
0 -
thanks alot bookart, these look like they would be just what I need... I'm thinking about when the spring finally does come and I'm out raking up and working in the yard, they look like they would be better at controlling lymph buildup.
thanks again.
0 -
Lymphatic Research Foundation.
Found this link on facebook ... first thing I've ever seen where doctors admit they don't know enough and more research needs to be done. Found the video very touching and rather encouraging ... is it for real? Kira? Binney? Have you heard of this foundation and if so, is it legit?
0 -
arrrggg!! went to a buffet with my GS tonite. we pigged out on virginia ham.. i forgot its' full of salt. tonites a biatch with swelling! 3jays
0 -
D-H, it's for real!
Go ahead and join the registry. They're an extremely well-respected group, started by the mom of a youngster with LE, so they're completely serious about finding out everything they can about the lymph system with the aim of curing lymph disorders, both primary (in-born) and secondary (like us -- caused by trauma to the lymph system). The reason we don't hear much about them is that they're not a patient-information organization, they're strictly focused on research. Among the LE professional community, they're revered. 3Jays, phooey! Hope you enjoyed the heck out of the ham dinner -- do keep that pleasure in mind even while you're doing the MLD and wrapping to get everything back in control. We get to enjoy life too -- and deal with the regrets later. Just don't let the regrets cancel out the pleasure.
Be well!
Binney0 -
Cutting back on salt was (is) hard for me. Given a choice between a piece of candy and something salty, I would go with the salty. What I have discovered is that there is a surprising amount of salt hidden in strange places -- like Cheerios and bread (even most homemade). The thing that I have discovered that satisfies my salty/greasy craving is "Touch of Salt" Triscuits. Six crackers has only 2% of recommended max sodium but they taste salty. You can eat the WHOLE box and still only get 20% of recommended max sodium. And yes, I have been known to eat a whole box.
0 -
KS1, LOL!!! Eating the whole box!
I am starting to experiment with less salt. Not sure yet if it matters for me, but I bet it will.0 -
ritz crackers are now coming out with a low sodium cracker, and its taste is exactly the same. good for them, good for me.. today is better, but just unwrapped to type. gotta wrap when im done. ham isn't worth it for me, i'll save it for better thins!!they're getting fewer and fewer, the things i'll eat to be this uncomfortable.. good thing sweets doesn't swell me up, cause id be in a pickle then..lol 3jays
0 -
I am so bugged that my finally going on vacation has to be so complicated! I've had to make an appt with my allergist to discuss bringing along an antibiotic - and I'm allergic to all the ones I've tried so far, so this will be tricky. Of course, you all know of the paraphernalia which must come along - my stuff practically needs its own suitcase. And we will be heading toward the heat, which means increased discomfort and increased crabbiness. I'm dreading it rather than looking forward to it, and yet I so need to get away. This is my first real getaway since LE dx 15 months ago. And so bugged that I can't look forward to it.
0 -
KC--I'm on vacation right now (I know, what kind of loser still posts on vacation....) and it's been good--the hassle factor was wrapping and having the plane delayed due to a diaper in the toilet, then diverted, so I was wrapped all day and had to to deal with TSA. But overall, it's great to be away, and we need--IMO--a break.
I haven't been a carefree traveler since my teens, and LE adds exponential hassle, but getting away from my routine is good in so many ways.
We hiked in the mountains today, and it was gorgeous. And yes, I wore my glove....
Kira
0 -
have a great vacation, Kira. Im so glad this crap hasn't stopped you, maybe just slowed you down with preperations. i always try to keep up, even when im doing a little travelling.. its' not far, but i still like to keep up! go to the Le therapist today for all of it: truncal, arm, hand, and MS.. we'll see what it'll all entail! if im careful with what i at, and pace myself, im kinda keeping it under control. but, with summer coming, who knows! 3jays
0 -
My doctor said he knew the condition but did not know how to treat it. The End. After I went back with more swelling a resident doctor working with him at the time got me referred to the only lymphedema massage specialist in my province. I have since had many treatments and am still wrapping as I await my custom made sleeve but no change. Actually there is more swelling in the hand area which just seems to get worse. I am very frustrated with the whole scene.
0 -
jminru, hello and welcome!
Are you sure this is the only lymphedema therapist in your province? Have you checked out the Lymphovenus Canada site:
http://www.lymphovenous-canada.ca/
Or Canadian Partners in Lymphedema:
http://lymphontario.orgEven if you're not in Ontario, that second site may be able to help.
The Therapist Finder also lists Canadian therapists:
http://www.mylymphedema.com/therapist.htmHope your situation improves soon -- it's so incredibly stressful when we can't seem to make progress!
Gentle hugs,
Binney0 -
OMG.....I just read the first 15 pages of this thread
0 -
good morning ladies:
I just had a left hip replacement last friday. I totally blame taxol.drs. aren't convinced but I am. Anyhow was tons worried about LE and anesthesia but I did just fine. I brought my sleeve and wrapping with me just in case it swelled out of porportion. I watched it each and every day and trained with my pt on staff at hospital to use a cane rather than a walker. I did not want to put any pressure on my left arm. I had them mark my bad arm and put a band on it just to be sure. So far so good. FUnny I am doing arm excercises each day as well as leg excercises. Hopefully be back to work in 4 weeks. Have good weekend
0 -
Wonderful news, nj! You're really on top of everything -- brava! Do keep us posted on your progress. Wishing you smooth sailing, quick healing and -- chocolate!
Hugs,
Binney0 -
First off....... COOKIE........LOL LOL LOL LOL..............LOL.............
Your last post made me giggle.... ' cause I understood it......HEHE......15 pages....ROFLOL........ still smiling!Second: jminru....... Honey...... you should be pissed and irritated and TIRED ALREADY! We ALL ARE..... you are NOT NOT NOT ALONE........ no way sister................. you just vent vent vent vent vent all you need to here....... SO many ladys can help you here ( Binney... Kira... and everyone else but I...lol... I just learn learn learn here).... and EVERYONE gets you.. and gets that your are soooooooooooooooo DONE DONE with LE..... that you just wanna SCREAM!!!!!!! That is why I titled this thread GRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRR
'cause each and every one of us seem to feel the same....no matter the level of knowledge... we all get so darn tired and fed up with our LE.......... some days good.......... some days bad.............. so vent here all you want... and ask questions... So much help here.
XXXOOO
Laura
0 -
Just a shout out...
Binny and Kira......
You ladies are such kind and amazing souls to be here all these years... HELPING STRANGERS!
THANK YOU! I will always appreciate you. Really!
0 -
Kindergarten, I have had reflexology before bc and it is amazing how they can tell you are having a problem in one area from your feet. It really seem to help. My massage therapists doesn't do reflexology but she is good. The next best thing. NJ
0 -
Dear NJ, Thank you for your input. Yes, I love reflexology. I have never felt better since starting it and I believe it is keeping my Lymphedema under control along with my arm massages and wearing my sleeve. Have a great Sunday!!!! Kathy
0 -
Dear Esteppe!!! I just read your comment about Binney and Kira and I so agree. You are all wonderful and so willing to listen, read and help!!! Have a great day, Kathy
0 -
Thanks for the kind words--for me, I'm just repaying the debt of gratitude that Binney and the others did for me when I first got LE and was clueless, scared, horrified--still have those feelings, but they're much better now.
This forum is a lifesaver for me.
We feel so alone: yesterday--flying home from meeting up with Binney and going to a vendor conference (that is an odd experience, a whole world of people who make money on breast cancer products, but are deeply kind and understanding--and they all knew Binney on sight! Go figure) I saw the woman in the row ahead of me had a compression sleeve and glove on and I immediately felt better, and not so alone--I restrained my self from going up and yelling "LE sistah!"
Laura--just look at what you've done here, you started a thread that has deeply touched so many women. Just flat out amazing.
Trying to get back on east coast time, and emotionally get ready for work tomorrow--do I have to go in???
Kira
0 -
Laura, goodness, thank you for your kind words!
But we're not all strangers -- we KNOW each other, as this thread proves over and over.Have to admit, though, it was great fun to meet Kira "for real" last week and actually spend time together doing something other than keyboarding. Wish we could ALL get together and talk, talk, talk. There'd be tears and laughter both, you can just bet. Short of that, this "meeting place" is the best!
Kira, I wouldn't have had the good sense you had where that Sistah was concerned -- how rare is that! I couldn't have resisted saying something to her, or at least making a point of a big, wrapped "queen wave" when I caught her eye.
HUGS!
Binney0 -
wow!! my 2 heroes finally meet each other!!
i am constantly amazed that we can form such bonnds here, w/out ever meeting each other IRL!! im so glad you two got together..
i guess Kira has more self control than me. i ALWAYS "flash" my sleeves, mor gloves, when i see someone elase wearing LE gear.. cause i know we ALL feel the same way about having to...GRRRRRRRRRRR happy sunday! 3jays
0 -
While we waited to board, it was a line of people needing assistance--the man next to me, leaning on his cane said "We should all be going to Lourdes" and the LE sistah was boarding with a family member who needed assistance, and I didn't notice her sleeve/glove until we were leaving and she reached up--with her compressed arm--for her carry on. I have to think she saw my wrapped arm as we waited in the Lourdes line....
We do know each other. It's an internet knowing, but it's real.
I'm so thrilled to actually have gotten to spend face to face time with Binney:it's been a process-- we first "met" and got to know each other here. And who knew we'd end up at a vendor fair chatting up the product manufacturers.
At this convention, somehow we ended up at this fashion show: no kidding here, of intimate products for breast cancer patients, and it was like "Project Runway" only with real women, with real cellulite, wearing the scanty garments. Surreal. But I sure learned a lot.
I live in a small state and I've looked for support groups, and there just aren't any I'd feel comfortable with--tried to join Livestrong and YMCA lady told my patients all about my medical history--after I just made a call to her to ask when the class met--so this is my support and I know it's the internet, but it sure is real to me.
Kira
0 -
Kira and I have no clue how we ended up at that luncheon/fashion show, but it was a bit surreal.
Fortunately we were easily distracted from the cellulite by the tender chicken with artichoke hearts and the lushy raspberry dessert (not to mention the complimentary dark chocolate bar
). We did you all proud!The conference was fascinating, actually. We've all given a lot of thought (and ranting
) to educating our doctors and nurses about LE, and we keep working out ways to find well-trained and competent LE therapists, but we just haven't given much thought to the HUGE problem of how to find a knowledgeable fitter. And it's SO important to all of us!So it was really interesting to sit in the lectures they listened to and then stroll the trade show booths and see the approach the garment makers take to selling to fitters and boutique owners.
One session we sat in on was about truncal LE, and the speaker asked first how many of them had had BC themselves. Lots of hands went up. Later on in the lecture she asked how many knew what certain words meant: fibrosis, seroma, and cording were some of them. VERY few of them raised their hands. That was a real surprise to me. I guess I had assumed they had more medical education than that, at least specific to the conditions they were fitting for, but they don't. They're kind, concerned, and interested, but their opportunities to learn about LE are limited.
My own take-away message was: we can all help by bringing our own learning to our fitters. That goes for new products we hear about too. We can steer them to websites of new companies, share what we hear here and elsewhere about customer satisfaction, and even help them understand what we go through personally in dealing with LE. The women we saw there were eager for information and open to learning.
Go for it!
The world needs lots more great garment fitters!
Binney0 -
thats great to hear...you go girls!
0 -
I have a general LE question. I have been wrapped 24/7 for three weeks. I go to therapy three days a week. I do the exercises three times a day. I do MLD twice. I am probably overhydrated. I keep my arm elevated a lot. I can barely tell my arm is swollen. I thought it seemed better today when I was unwrapped. But for about 20 minutes after being wnwrapped there are little lines (look like ropes) across my arm. Not up and down. They are up my forearm about every two inches to my elbow. My therapist says the day there are none after unwrapping is when my swelling is gone. I had surgery 2/14, mammosite radiation 2/21 and my arm felt achey two weeks later. I cannot tell the difference except a little puffiness below my elbow. Today it seemed gone. When you all wrap, do you have the lines? How long did you have to stay wrapped the first time? I am getting discouraged and want to move onto a sleeve and wrap only at night. I had a tour planned for early June in which I would fly but I see now that I need to cancel. Thanks for any input as to experiences. Becky
0
