Lymphedema garments in the heat grrrr

Sending lots of positive thoughts for tomorrow Paula xx

Paula @mum2jj, just wondering how you went with your measurements on Tuesday?

Thankyou to all you lovely ladies for your beautiful comments.  Have barely had time to scratch myself these past couple of days.  My measures are the same in some places but much improved in others.  My "aldex" measure... I think it's called that was upto 14 last year from a usual negative measure. By the time I had my new garments last time and after lots of hard work with massage and wearing long garment again it was down to 5,  Well oon Tuesday it was negative 0.5.  I am taking this as a big win.  Still in long garment but can alternate with shorter one that I used to wear which I have slowly been doing this last month.  Still massaging daily... It's really a long term thing, but happy with the 1 1/2 cm loss in my arm and the low aldex reading.  You  ladies are awesome xxx
Paula :)

Paula, that is excellent!! Xx

Sheryl
What a bummer! People always think I am weird when I say I'd rather have got lymphoedema soon after surgery (as I did) rather than years later, but I still think I was better prepared for impacts and outcomes than I might have been when I reasonably could expect it was all in the past.

Best of luck with your new garment. The all in one is supposed to give best results although I had a bad experience (partly through a local supplier who couldn't fit properly) so my excellent therapist has settled for an arm and glove that keeps us both happy. I wear them daily (occasionally skip but only if it's cool) and also keep up daily exercises. My swelling is much less though and I manage well with monthly massage (self massage and elevation when I remember). I hope you get some improvement very soon.

Hi Ladies this was on my facebook this morning thought I would share it .... 
http://www.mylifehouse.org.au/teach-patients-self-manage-lymphoedema/

@Share My lymphedema therapist told me that you can develop it at anytime after treatment, but I guess by 13 years you would have thought you were not going to, so I feel your pain.  I had initial diagnosis 2009 and had 7 nodes removed and went on to have lumpectomy, chemo and rads.  No lymphedema and thought I was sweet.  I had developed a pesky infection around my fingernail and never once thought of lymphedema.  I unfortunately at around the same time (18mths after all treatment finished) had a recurrence.  This time I had a mastectomy and another 6 nodes removed and more chemo.  I had to fly every 3 weeks for chemo and that probably didn't help.  It was about half way through that treatment that I developed my lymphedema.  My problem area was my hand.  I initially saw a private therapist and because at the initial stages my problem area was my wrist and I balked at a glove she only put me in a sleeve.  Of course the fluid was pushed straight into my hand!!! So I then managed to get into the public system and had an amazing therapist who told me to grow up and I needed a full sleeve.  I hated it and it caused all sorts of problems at work as I am a nurse.  I managed to find a good two piece for at work that I could slip the hand on and off quickly.  I persevered with the long garments for a couple of years but as my problem was mainly my hand I was able to swap between a long and a short (only to my elbow) garment.  I would self massage in a very particular way as shown by my therapist for a good 20 mins each night.  Eventually I was able to go glove free at work and only wear a short glove the rest of the time.  This was great for about three years and then wammo I had a bit of a blow out just below my elbow last year.  So was back into garments at work, and the long garment.  I have no idea what caused it to flare up again .  I am now self massaging daily for longer (had probably dropped down to 5 mins before flare up).  The hard work is paying off.  I feel for you with a 50cm difference.  Keep up the daily massage, has someone shown you the correct way to do it?  Let me know if you want a description.  Sending you a huge hug.
Paula xxxx

@"Soldier Crab" thanks for sharing, what an amazing place that lifehouse must be. A great legacy to Dr Chris O'Brien RIP.
She is so right in that lymphedema is only just being realised and treated in the way it should and people are still often getting referred too late.
Paula xx

@socoda xxxxxxxxxxxxxxxx