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  #1  
Old Sep 5, 2005, 08:50 PM
walko walko is offline
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Location: australia
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Working with lymphedema

Hello I am fairly new to lymphedema and have been trying to find solutions to living with this condition.

I have searched the threads but have been unable to find any information on how people manage to hold down a fulltime job and still undertake the necessary treatments of massage and exercise as well as having time with the family.

If anyone has any suggestions I would be grateful as I am at wits end trying to fit it all in ( well basically things are not being fitted in)

Thanks in advance

Michael
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  #2  
Old Sep 6, 2005, 06:32 PM
jlk1973 jlk1973 is offline
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I totally understand where you are coming from. The month that I had to do the daily therapy I felt like I was never at work! You definately have to do some rearranging! And I have two small children that didn't really "get it." My son's question was why there wasn't a shot that would make it go away! Even though it's only been 2 months since I started the therapy, I have mananged, as you will. Which I'm sure you've heard before....

After I finished the daily therapy then I had to figure out how do get everything done at home and still find time to wrap nightly. I am not an organized person, but I had to be, kinda... I'm not the best at it, but I know that I have to wrap nightly.. no matter how much I hate it and no matter how every night it depresses me greatly!

I guess you just have to hang in there and keep rearranging until you are satisfied!

Best of luck!
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  #3  
Old Sep 7, 2005, 05:37 AM
pernille pernille is offline
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Working and all the rest

Hi
I have a full-time job, a house, a 2year old son and a husband (who is also timeconsuming;-). I try to do the breathing and excersices on the sofa while watching tv at night. I then might just do it again in the bed before I sleep. But I have not had time yet (or not prioritised it) to go and get the massage which I would really like. I can flex from work but prefer to get my son early from nursery. I have neither come around to get back doing any exersise (like bycycling, swimming etc) after I had cellulities in April as I have been a little lazy to get up in the morning to do it before work.

I think it all comes down to your priorities - and then you either live with it or change it. And I think I don't have mine straight yet.....
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  #4  
Old Sep 7, 2005, 10:52 AM
shantebailey shantebailey is offline
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Join Date: Aug 2005
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I am 26 years old and I too don't know how I am going to find time to get the MLD done, but I know I have too. Fortunately I have found a place close to my job that I hope my insurance company approves. The said the can take me during my luch break. My initial treatments probably will last for 6- 8 weeks instead of the 4 week, 2 sessions a day route.
I know that nothing is more important than my health, because if I am not well, I can't be here to take care of my family and be here to see my children grow up. Fortunately my Lymphedema isn't that bad that I can't go to work. I guess I was diagnosed early, it only took 4 years.

shante
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  #5  
Old Sep 7, 2005, 09:44 PM
Cassie Cassie is offline
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Hi, Michael,

I wasn't sure from your post if you meant you were having trouble with the initial therapy or with the on-going self-care demands.

If it's the initial therapy, maybe you could think of it this way: if this were a better known disease, one that everyone knew about and feared--like cancer, say, or a heart attack--you wouldn't think twice about taking the time off work to get treated for it and do the follow-up therapy as well. You might even go on temporary disability to do it. Lymphedema therapy is not anywhere near that demanding (an hour a day for a limited number of weeks), but somehow trying to explain that need to an employer seems like a major hurdle. It's not. Take it seriously, inform your employer about it (maybe give him a copy of some of the articles on this site for information), and then go ahead and take good care of your health.

If it's the on-going daily care that's a problem, then one thing that's helped me is to time each task first. How long does a full massage take? A careful bandaging job? Rolling up bandages? Hand washing compression garments? An exercise routine? Once I knew that I could see more easily where in my day each task might fit. Also, we have a daughter who's had diabetes since infancy and, while her care is ultimately her decision, still a chronic disease or condition really is a family affair. Everybody has to be on board, they have to know what's needed and why, and they also have all responded well to taking on some responsibilities themselves. So with my lymphedema we already had a "battle plan" in place, where every family member knows he or she is affected by my condition and can also help make it more managable. One son is learning to roll bandages neatly, a daughter helps with the hand washing (she also makes chocolate cookies for me when I'm feeling down about the whole thing!) My husband knows the whole massage routine and does the parts that are hard for me to reach, as well as simply pitching in when I'm tired or discouraged. He also knows the wrapping steps and when to help by holding an end of the bandage, etc. Because they all feel a part of my struggle, they actually help keep me motivated. It's not easy to give up a sense of my own total control over what I do and when I do it, but it's not realistic to think my lymphedema doesn't affect all of them.

Beyond those simple steps I've found it's helpful to avoid doing things that I know will aggrevate my LE (like not wearing my compression garments) because getting it back in control takes longer than simply keeping it that way.

I hope some of this helps. It sure is a juggling act, isn't it! Let us know what you come up with, because this is one problem we all share.
Cassie
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  #6  
Old Sep 22, 2005, 04:10 PM
walko walko is offline
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Thanks for all your input I have only just come back to work after two weeks off since the Professor (Dr) thought I had recurrent melanoma. Good news I don't.

Back to the lymphedema issue I understand that it is hard to keep up with the excerise and compression bandaging. I am finding that as most of the sufferers in Australia seem to be a) women b) more elderly the doctors do not want to recommend time off work for treatment of the condition.

It seems to me that when anything is published about lymphedema in the main stream media it is always focussing on a) Breast cancer as the cause
b) swollen arms not legs
Whilst we are aweare of the issues with living with this condition there has to be a far more practical solution then wrapping legs or arms every day.

I recently worked out that this condition casues a financial drain on our household budget in excess of $100 per week. none of which is recoverable form a health fund.


Any thouhgts.

Michael
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  #7  
Old Mar 8, 2006, 06:41 AM
fineline888 fineline888 is offline
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Wish there was.....

I maintained there must be a better solution than wrapping and bandaging everyday...but so far I was wrong. The bandages give me good support and they seem to have some expand/contract thing going on that actually makes me feel more invigorated for the first few hours. So immediately after bandaging is the best time for me to get erands done and also the best time to exercise...the bad news is that's sweaty business....so for a time I was bandaging TWICE a day until I exhausted myself emotionally....not recommended. I like the circaid garments with velcro....but I would like them to come out with one that has velcro on front/back alternatively....my garment now only has velcro on the front (toe to hip) but I do love having it available whenever I need to take off bandages early or for bed. My skin has also been healthier since using it.....I think because it gives me a break and gets me back to bandaging quicker...if you come up with a better solution.... WRITE ME! and I'm sure you will also make a million dollars...we are all searching.....someday maybe we will post about our foibles...I have taped, wrapped and compressed in all sorts of created and failed attempts to avoid these dammm bandages..... All the best to you. Lynne
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  #8  
Old Mar 8, 2006, 07:43 AM
Cassie Cassie is offline
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Join Date: Oct 2004
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Hi again, Lynne and all,

Here's something I've discovered that has helped me TREMENDOUSLY, though my problem has been chest (and both arms) LE rather than leg (think: breathing and eating while compressed to within an inch of your life--we won't even mention exercising in that state!) I started talking to the companies who make our garments. With one I talked to their sales rep (not my fitter, mind you, but an actual company rep). With another I simply emailed them from their web site's "contact us" page. These are creative people who really are trying to make us garments we can thrive in, they're not just faceless companies. It's even to their benefit commercially to please us, so we need to be right upfront about telling asking them to change things to work better for us.

Of course there are a couple of companies I've talked to whose ideas are set in concrete, but so far I've moved three separate companies to make fundamental changes that have made my life SO MUCH easier. Some changes were tiny (I asked my glove/sleeve company (Bio-Concepts) to sew their tag on an inside seam instead of on the glove hem so it doesn't stick out and show all the time -- small matter, sure, but anything that makes me feel more confident in public is no small matter to me.) A German company compped me a LE vest to try that they don't even market in this country -- the rep actually stood on her head to solve my problem for me. And then there's the YUMMY vest designed just to my specifications by an American night-garment company (Solaris) -- only this one is their first-ever day vest. I can breathe, I'm having to watch my weight again because I can eat again, and best of all I got the Lebed exercise tape and I'm MOVING again.

So I guess I'm saying this: we're not in a position to engineer our own garments, and we're not in a position to DEMAND certain improvements, but we can be voices to let them know what's working wonderfully and what's not working at all, and hopefully we can cooperate with the creative and compassionate folks out there to improve our lives. Worth a try, anyway.

Onward!
Cassie
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  #9  
Old Dec 22, 2007, 02:23 AM
nancycels nancycels is offline
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RE: Lower Extremity LE and Wrapping

I have bilateral lower extremity LE that goes to above my knees. I use long Farrow wraps but had a problem with them slipping due to folds in my thighs. Solved this problem by foaming under the Farrow wrap. Not only does this seem to solve the problem of it falling down but it seems to make the compression work better! So hopefully if anyone else is facing a similar problem, they can benefit from this tip. Thank goodness for a receptive therapist who's willing to work with me to problem solve!!!!
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  #10  
Old Feb 1, 2008, 10:23 AM
jgrease jgrease is offline
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Quick summary of my work and LE

I was diagnosed with LE in my right arm after a year of other diagnoses, and I faced the prospect of being medically discharged from my job (I was a police officer). I chose to return to work (from a medical standpoint a REALLY bad choice) because I had to support my family. I had one of my uniform shirts altered to give my right arm the space it needed, and in the summer I just dealt with the short-sleeve shirt. I always wear my sleeve and glove, and those I worked with knew why I wore them, so it wasn't a problem. I would only remove my sleeve when working outside of my precinct area in the warm weather so that I wouldn't have to answer questions. I have been introduced to the Reid Sleeve, which has become a great substitute for night-time bandaging. I have since retired on my terms with a regular pension, and I am very grateful that I was able to manage my LE for that long.
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  #11  
Old Mar 25, 2008, 10:29 AM
TiredOFthePain TiredOFthePain is offline
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Michael,

I have been out on short term disablility due to an unrelated problem. I can't imagine going through the weekly doctor visits and wraps, pain and depression while working at the same time.

Someone said it above, but I will say it again. If this was a more common disease we would have many more treatment options, bandage/stocking types and the option for short term disability.

Best of luck to you.
Gina
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  #12  
Old Mar 31, 2008, 06:37 PM
livewell23 livewell23 is offline
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Hello Michael,
I work fulltime and tend to sit at my computer for too long. The management of LE is difficult and I have tried different protocols over the last four years. I do not perform MLD daily though I do try to stimulate my lymph-nodes whenever possible. At work, I will go to the bathroom and stretch as much as possible as well as do leg raises and stretches at my desk. I have LE in my left leg. At home, I try to walk everynight and try to exercise a couple times a week. In the morning and at night I apply almond oil on my leg and perform some stretches to get the lymph moving. I lay on my back and pump my legs into the air and gently move the fluid up over my hip and then work around the knee. I am having good results with the almond oil. My leg stays softer for longer periods of time. I wear a Tribute sleeve at night and a compression hose during the day. I have to wear an extra lower hose to really minimize the swelling in my lower leg. I feel extremely fortunate that on most days I can hide my LE. Thank goodness for wide legged pants. The management of LE really requires a lot of discipline as you know. I've learned that I first have to take care of myself. My goal is to work on building muscle in my legs. I wear Earth shoes to help with my posture and the shoes help with muscle development. Best of luck to you.
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