Dealing w/ LE & living alone

michellemarie
on 5/25/08 4:37 am - Cheektowaga, NY
I am trying my best to deal with this disease, but it is so hard to do it alone.  Just trying to get compression wraps on evenly and effectively is bad enough, but now one leg is leaking again, but my doc (dermatologist) says it is not an ulcer, but whatever it is it stil hurts and needs cleaning and what if I am doing that wrong???  I am sorry this is coming out as a rant, but I am so fed up with this and all the docs I see saying the same damn thing..."have surgery...it will all be better after surgery...blah blah"  Yeah, sure...but who's going to pay for it?  I am already in 1000 dollars of medical debt and that's AFTER medicare paid it's part for all the care.  Anyway, I am looking into options where the weight loss is concerned...but for now does anyone have any tips about taking care of the legs alone in the most healthy way possible???  Whatever support or guidance you may offer is greatly appreciated, thank you. 
jdruski
on 6/5/08 2:54 am, edited 6/5/08 2:54 am - Philadelphia, PA
Dear Michelle, My heart goes out to you.  I can't help you with your question as I don't do the compression garments.  I do know that they are difficult to work with.  I at one time weighed in at 450 lbs. and have had lymphedma for over 10 years.    After I had the GBS I thought that my breakouts of celulitus would be gone forever, but I started to get injections in my knees to help the arthritis and each time I would get a breakout.    After losing 200 lbs. and having a panni. again I thought no more breakouts, and 2 wks after I was off of the antibiotics for the surgery I broke out again.  It is a fickle disorder (or disease).  The only thing that I can say is to ask your doc. to show how to do the wrappings and what is best way to clean it.   Like you I live alone and it is difficult to have to do everything for yourself. You take care and keep your chin up.  Your legs will get better. Jeanne
Garys
on 6/13/08 3:07 pm - Mesa, AZ
I have LE in both legs. I had the manual lymph drainage treaments and have graduated to compression stockings. I use alot of water therapy to control the swelling in my legs when they start to swell.  The websight I hang out on to get questions answered about Lymphedema is: http://www.lymphnotes.com/article.php/id/229/ They have forums that directly address LE issues instead of the tiny one on this board.
michellemarie
on 6/20/08 1:07 pm - Cheektowaga, NY
Thank you for your support.  Sorry I have not been around to read your messages until now, but I really appreciate that you read and replied to my plea.  Bless you, and hope you are having a nice first day of summer.  :)
Batwingsman
on 10/15/08 3:51 am - Garland, TX
First of all, are you sure you are receiving massage therapy by a certified MLDT therapist?   That is essential PRIOR to compression wrapping.   Then, be sure they compression wraps are being put on properly afterward (again, by a MLDT-trained therapist) ..   You should let a therapist do this for you for at least a month or so ..   This should stop the "weeping"  that is occuring ..   After that, you should learn to do you own MLDT therapy and wrapping from your therapist, if you are physically able to do so and reach the affected areas ..   Even if not, you can have custom "Ferra Wraps" measured and made for you, to help out ..  After your legs have been reduced by the compression wrappings, just make sure to keep the Ferras on 23/7 to keep the swelling down ..  They slip on and off easily and are held in place by several Velcro fasteners ..   Eventually you may be able to use just compression stockings ..

  Good luck!

Frank talk about the DS / "All I ever wanted to be was thin, like that Rolling Stones dude ... "

HW/461 LW/251 GW/189 CW/274 (yep, a DS semi-failure - it happens :-( )

maris_38
on 1/4/09 1:47 pm - Orlando, FL
I too live alone - and due to my weight was not going to be able to manage applying compression bandages.  Since I was about to have WLS I figured custom compression stockings would be a waste since I expect my leg size to reduce. 

My PT helped me find a compression device made by a company called "Circaid" - called the "Ready-fit".  Now this is for lower leg only, but I believe they made some similar items if your issue is with the upper leg as well.  Not only am I able to get them on and off by myself (they are pretty easy) but compared to custom compression garments and Reid sleeves etc they are "cheap" (about $150-$200 per leg - compared to $1000+ for the other items).

Best thing I did was seeing a Physical Therapist who is certified for Lymphedema and manual lymph drainage - she was awesome.

One other thing - not sure if this will help you but might be worth a try.  My PT reccomended using Eucerin 'original formula' lotion 2x daily.  She said that particular lotion has a PH balance that helps inhibit bacteria and helps (along with the regular moisturizing) inhibit ulcers.
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