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

FireKracker

I missed your great news Leah BUT what ever it is congrats.....count me in for the dance sista....ALL NITE LONG.

kira

Leah, I'm so glad--you are very special, and I'm so happy for you.

Kira

lvtwoqlt

I'm dancing too for Leah's good report and Kira being a new advocate for us.

I have been involved in a 3 month Quest4Survivors exercise program at the local Quest4Life gym. We have been doing some fun stuff, silversneaker aerobics (chair aerobic class), gentle stretching yoga, treadmill, exercise bike, track, and water aerobics classes. I haven't lost any weight yet.

I saw my mom tonight at church and she had her arm wrapped. She asked me how did I manage to do anything with my arm wrapped. I told her I was only wrapped to my elbow, she is wrapped all the way to her shoulder. They said that her sleeve should be here Friday and she will not have to wear it all the time, only when she is going to do any strenuous exercise.

Sheila 

sundermom

Well ladies, it's official . . . I'm off to a LE specialist. I started experiencing some pretty severe pain in my upper arm and numbness in my hand the last week or so. Being 8 weeks out of rads and several months past BMX I was starting to think I may be out-of-the-woods. My MO was so concerned about the pain I was describing that he sent me for a STAT ultrasound to rule out a blood clot this afternoon. Thankfully, there was no clot. He prescribed some pain medication - Tramadol. I've never taken that one before and am so hoping it works. I need to sleep. What should I expect at my first LE appointment next week?

3jaysmom

kira:  congrats on the new position, and probable new wardrobe  haha leah, congrats on the clrear scans. your one lovely lady.

   i have 2 count em 2 lovely ladies from BCO coming to visit me this weekend.. i sure am one, happy, and lucky woman!!   love to you all swell sistahs.......3jays

kira

Sundermom: Glad you getting treatment, but sorry you are potentially joining the club.

Best to go armed with information, as various therapists will approach treatment differently:

Here is a page on treatment from stepupspeak out, and there's a link to a pdf overview in the second paragraph

http://www.stepup-speakout.org/treatments_for_lymphedema.htm 

And, here is a link to the National Lymphedema Position Papers, and you may want to print up the one on treatment and review it with the therapist:

http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm 

One last thing is to check the qualifications of the therapist--they're no guarantee, but the ideal is at least 135 hours of training--there are weekend courses out there, or therapists who call themselves LE therapists with no additional training--there's no requirement either by licensure boards or insurance to demand adequate training.

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm 

So, what you should expect is to be measured, examined, hopefully educated re: self-care and depending on what the therapist finds, you should receive some MLD--lymphedema massage--and potentially some bandaging. It will depend on what the therapist finds on her/his exam.

Please let us know how you're doing.

Kira 

KS1

Kira -- it's terrific about getting onto the board.  Mega-congratulations!  KS1

3jaysmom

ok, so i've done it to myself again... my vanity has gotten thre best of me. i wore a strapless, underwire  bra for the last 2 days.. "just for a little while " is what i told myself.. its' hot and humid, and it hurt!!!

   yup; the truncal is way flaring where it cut in..some of us NEVER learn!!! so, tommorrow, its' back using the cami... hope all is well with everyone.......3jays

NatsFan

Kira - congratulations!!!  It's a well-deserved honor for you, and it's wonderful for us swell gals to have one of us in the "inside".  Fabulous, fabulous news!

3Jays - it's live and learn with LE, isn't it? 

olearca

Binney and Kira,

I came here a few weeks ago devastated by newly diagnosed LE. I just wanted to say thank you, thank you for all that you do here - and all the other wonderful posters. I read every thread and I have pulled myself out of the dark place I had fallen into and I am now educating myself. I will continue to look to you for help and guidance but please just know that you really saved me. I have a wonderful PT and now don my lovely jobst sleeve (thank goodness for fall weather) - and I know I wll be back here with questions soon enough. But in the meantime, I am forever grateful.

Love Catherine

binney4

Catherine, hey! We've all been to that dark place with this diagnosis, and I'm really glad to hear you're emerging and moving forward. I still have my moments, especially when it's flaring, or when I'd like to do something simple and it's complicated by all the LE paraphernalia. So it sure does help to have this Sisterhood of Swell to turn to and remind ourselves we're not alone. Can't say it enough: I absolutely LOVE all these good ladies here!
Binney

binney4

3jays, it's not vanity, it's just a perfectly understandable longing to be feminine and free of the restrictions that come with LE. Like, free to wear what we please! Shoot, we've been doing that all our lives -- these new limits don't come easy! Nasty learning curve. Next time you cave to that urge, limit it to an hour or two for some special occasion and see if that works.

Meanwhile <sigh!!>, back to the self-MLD, the hydration, the deep breathing, some Lebed exercises -- and the cami. Hope you're soon back on top of this bugger LE!
Binney

kira

Catherine, we've all been in the dark place, and sometimes the resentment of LE just flares up, just like the condition.

I wake up wrapped and think: do I HAVE TO??? Yes, at this point I do. Doesn't mean I don't resent it.

When my next door neighbhor asks if I can join the tennis game I used to be a member of, I've reluctantly said no, and resented it, but I'm left handed, my LE is in my left hand. Maybe I can work up to it.

3jaysmom--we always test the limits---how else would we figure them out?

Kira

Tina337

Kira, I just read your announcement! Congratulations! That is such wonderful news, and you are certainly deserving of the appointment! Hey, I love the image of a butterfly with an outstretched swollen fist! I want a tee shirt with that!!! Well, maybe my butterfly should have a swollen thorax! 

Leah, congrats on your stable scans! I need to catch up on the happenings here! Love all you ladies. Even when I'm not here, I think of you every day. Really! 

lvtwoqlt

Mom went back to the therapist today and she said that she had good results with the wrapping. Unfortunately, the sleeve they ordered Wednesday didn't come in today, so she is wrapped again this weekend. They wanted her to come in Monday to get checked out, but my dad is having surgery on Monday in the larger hospital in the next city, so mom will be tied up all day. They told her she could come in on Tuesday.

Sheila 

duckyb1

Well, I bit the bullet today out of sheer disgust................I called the Fitter, and told her I am sending back the 2nd sleeve, and she is to credit my Visa for the charge.................I am fed up to my ears with all this bullshit, and plan to end it here and now.

Went to the LE specialist 2 days this week and she is massaging the hell out of the LE, and the scar tissue..............she said the sleeve was made wrong both times, and to give itup........she had a couple of Juvo sleeves there, and I tried them on...........both fit well, and she sent me home with one.

by the way the glove I ordered from the company never came either.......turns out the only reason I needed the glove was the sleeve was such a poor fit, it drove all the fluid down to my hand..............my hand does not swell at all  without the custom sleeve.

My LE person was so embarrassed because she recommended this lady, but in the woman's defense..............she was diagnosed with BC right before she got me for a client............I came into the picture after she was done all her treatments, but then developed an infection in her implant.......................I can sympathize with her situation, but my therapist who also is a BC patient of 25 years..........says..............then she should not be fitting people, and should get another person to to it, till she is capable.......................she is probably right, and honestly I can't deal with the bullshit anymore.

I will wear the sleeve the therapist gave me..............it fits, looks like it does the job, and with the massage, and all the exercise I'm hoping for the best...........................2 mistakes were 2 to many for me...........................I just hope I get the $150.00 back for the sleeves.............

PearlGirl

Good evening, Ladies. I am new to this board and to the issue of lymphedema. Terrified that this swelling in my hand, wrist and forearm are just that. Two days ago I experienced severe burning pain under my arm at the lymph node disection site that lasted all day. Then yesterday it was just mild pins and needles on and off. Today there is slight swelling and my hand and wrist are almost numb. But my fingers are not swollen at all. And if you look carefully you can see swelling in my upper arm and shoulder. Trying not to panic and wondering what brought this on. Am 17 months post surgery. Why now? And what is your recommendation for self treatment for the rest of the weekend until I can talk to a doc on Monday? Any suggestions you have will be appreciated.

kira

Bon, it's wise to get checked out, and if there is any indication of an infection--redness, warmth, flu like symptoms--don't wait until Monday. If this is lymphedema, often there is no identifiable trigger. The pain is concerning--so you may want to check in with your doctor sooner rather than later.

Here are a couple of links:

What to do while waiting for a lymphedema therapy session--there are links on the page--

http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting

What to do While Waiting for Your First Appointment with a Qualified Lymphedema Therapist

DO NOT try and treat this yourself!!! Proper professional treatment is essential to getting control of lymphedema and preventing its progression. Treatment can be expensive and inconvenient, but this condition is life long, potentially disfiguring, disabling and possibly life-threatening (if you get an infection known as cellulitis) so professional evaluation and treatment as soon as possible is essential.

1) Get evaluated promptly by your doctor to rule out other causes for the swelling in your hand/arm, and get a referral to see a well-trained lymphedema therapist;

2) Drink plenty of fluids -- staying well hydrated helps dilute lymph fluid and keep it moving freely;

3) Elevate the swollen arm or hand as much as possible during the day and on pillows at night; support the arm well so that it doesn't tire;

4) Several times a day pause and do some deep breathing -- this helps stimulate the largest lymph vessels in your body;

5) Raise hands over head as high as is comfortable for you, three times a day, and pump fists 20 times;

6) Call for medical help immediately if you have severe pain, redness, fever or feel ill;

7) You can try mild compression gloves by either Sammons Preston or Isotoner® Fingerless Therapeutic Gloves if your hands and/or fingers are swollen until your appointment with your lymphedema therapist. Be sure to bring them along to your appointment;

8) Do NOT use ACE wraps or any other wraps without the advice of your lymphedema therapist after your evaluation and your treatment plan is scheduled.

Here's a link for the future about how to find a lymphedema therapist:

http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

Please let us know how you're doing, or if you need more information. 

Kira

3jaysmom

thanks for all the imut ladies, live and learn.. i wrapped my truncal today, and taped the  "foobs" in a cami... well, that didnt work. they ended up round my neck..so, tommorrow, i gotta sew in the pockets.. im always looking for an easier way grrrrr. i need to uuse the tried and true way...

   the swellings' MUCH better, since i got the truncal wrapped. it swells right where the dog ears were.. a perfect place for fluid to build up... so, thanks again. still living to learn to learn to live.........3jays

lvtwoqlt

Today at church I noticed that my mom's wraps were getting loose (she kept pulling on it), but I didn't say anything. She called me tonight at 6 to see if I could go to her house (5 miles away) to help her 're-wrap' her arm. She won't be going to the therapist until Tues because of Dad's operation tomorrow and she didn't want to go to the hospital with it looking as bad as it did. I went over with my little bag of supplies and didn't completly unwrap the arm. I only removed the outer sleeve, unwrapped one bandage all the way (from the arm to the wrist), partially unwrapped the next bandage to the same spot, unwrapped the cotton and rewrapped everything to make it look smooth and a little tighter. Mom thanked me so much for making it look nicer and feeling tighter than it was. When she went to the therapist on Friday, her total measurements were down 9 cm from Monday's measurements.

Sheila 

3jaysmom

oh, sheila, it sounds like its' helping your mum.. i'm so happy for her! she's lucky to have you there... i'll be checking to hear the progress. hope your dad does well with his surgery.....3jays

binney4

Sheila, however hard this learning curve has been, it's just plain gratifying to have the skills to help your mom like that. Not many women could do that. A moment's pause to pat yourself heartily on the back for a job well done.

Loosening is a good thing -- sounds like she's really responding well to therapy, so a hearty pat on the back for her too!

Prayers for a safe and smooth day tomorrow for all three of you. Hugs,
Binney

BeckySharp

Sheila--Hope all goes well tomorrow for your Dad.  Your Mom is so lucky to have you to help her.  Becky

lvtwoqlt

My mom has done so much for me, I feel special that I was able to help her. I would pat myself on the back but I can't reach it  and I will give mom a pat on the back when I see her at the hospital today.

The clinic has two therapists in the office and one of them made the comment 'I'm not used to skinny arms' when she saw mom. She has some minor swelling around her elbow but she is responding well to the treatment so far. Her hand wrapping still looked good, that's why I didn't touch that part of the wrapping. She will be going back to the therapist on Tuesday. She told me that she would admit to them that I re-wrapped her arm.

Sheila

ktym

Kira and Binney, so happy you stay around, have no idea where I'd be without you.

Yep, new therapist (that was a good move) and much better fitting sleeve and a new glove.  I hate how it takes away all help in the neuropathy hand, but, it works. 

lvtwoqlt

Well, dad's surgery for today was postponed due to him being anemic. He went to his primary dr office on Thursday for another problem and had blood work done, saw his surgeon on Friday and no-one said anything about it being postponed. He got to the hospital at 5:30 this am when they couldn't find his chart they had to wait until the surgeon's office opened at 8:30 to find out that the procedure was cancelled.

kira

KMMD, it's such a juggling act---you need the compression, but you have to work and feel your hands also. 

To quote Binney: "Have I told you how much I hate LE???"

I'm glad you have a new therapist.

Sheila: that was crazy, to cancel the surgery and NOT call--and you're dealing with your mom in bandages also. Hope it all gets straightened out soon.

Kira 

mrsnjband

Sheila

Geees, they would have never done anything with me ever.  I've been anemic since chemo just until recently when I finally broke over the 12.1 mark. Hope everything works out for you & your dad. NJ

cookiegal

Kira that's FABULOUS!

3jaysmom

sheila: i can't believe the surgeons ofice didn't call to tell you before hand! im always wondering these days "what WERE they thinking?""!!! i hope they can get your dads #s up so he can have the surgey he needs..  sounds like your mom is doing well. and , what a full plate YOU have.. you are an extrodinary daughter.........3jays