What causes your LE flares?

Tina, besides really hurting my feelings, I am pretty sure a muffin top  limits lymphatic flow.

I cannot stand for my clothes to touch me.  I have some jeans that create the muffin top and they make me nuts, which is why I'm trying to get some weight off.

Grrrrrrrrr.

Kira, if the guidelines say to avoid placing your arm in a tub over 102* and your husband keeps the hot tub at 100* - well, go for it!

OK, OK, maybe close but also maybe worth a try.

I LOVE hot baths but since LE I don't make them as hot as I used to. Instead of getting in a very hot tub, murder mystery at my side, and soaking for an hour I get into a very warm tub, murder mystery at my side, and add hot water during my hour-long soak as it cools down.

Leah

What a helpful thread!

Mine flared after my final reconstruction surgery.  Scared me straight, for sure.

Temps in the 100's always make that arm feel heavier, as does direct hot sun.  I keep a couple of bandannas in the car and one in my purse, and if I feel like I'm getting in a jam I'll soak the bandannas in cold water and wrap the arm -- it's a stop-gap measure.  I also use the bandannas to shield my arm from direct sun, especially in the car or at my son's ballgames.  (I lay the bandanna on my arm with one corner pointing toward my shoulder and the opposite corner pointing toward my hand, and then I tie the other two corners under my arm -- it makes a sleeve to cover the arm.)

Sleeping on the wrong side can make that arm feel sluggish, too... ugg, I get so tired of sleeping on my right side!  I have a Homedics Sqush pillow to hug to my chest which supports my upper arm when I'm lying on my side, and that seems to help a lot.  I never leave home without a Sqush in the car or in my suitcase. I get them at Bed Bath & Beyond:  

http://www.bedbathandbeyond.com/product.asp?SKU=124823

I have a lymphatic massage every month or two just to get things moving freely again, and I always feel so light and free afterward.  I wish I could afford to do that more.  Unfortunately, we have to buy groceries.  :-P

Judith, thanks for the suggestions: the women on this thread already have lymphedema, so odds are, they wouldn't look to avoidance to treat their lymphedema.

I know we always sound like a bunch of complainers, but we'd sure like to see the bc.org lymphedema web pages updated.

The women on these forums are incredibly knowledgable and advocate greatly and the threads are a great resource.

As someone with lymphedema: I wouldn't look at an avoidance thread to help me manage the chronic condition I deal with every day.

But thanks for reading! And supporting us.

Kira

Hi All--I have been in Indianapolis visiting my cousin (who is like one of my sisters).  She had a double lung transplant due to pulmonary fibrosis on Nov. 8.  I spent several days with her.  It sure put my LE in perspective.  She is still so swollen all over that I did not recognize her.  She was still on a ventilator and could not talk but now has a trach.  Anyway...I drove up alone.  This was my first trip alone.  I was worried about my arm with all of the driving.  It did become tired and heavy but no difference in measurements.  I pumped like mad at each stop.  I drank so much water it made for a lot of stops which made for more pumping.  Many deep breaths while driving.  I faithfully did my MLD and MLD exercises morning and evening before visiting.  I am still afraid to fly as I used to swell before LE when flying.  I am putting that off for awhile.  But now I feel I can hit the road more often alone.  It does take an extra suitcase to take all of the LE stuff with me.  I am not ready for a hot bath either!  Glad to be back on.  Happy Thanksgiving to all! Becky

Oh I forgot to add.  I had to gown up and put on a mask to visit.  The nurse at first said I had to take off my sleeve and glove.  I was afraid it was going to be a short visit as I am supposed to wear them all of the time.  When she learned I was to wear it all day she relented and let me keep it on.  You have to constantly purell your hands and my hand was raw from taking glove on and off all day. 

Barbe--I was surprised too.  I did tell her I had washed the glove the night before.  I had driven over with a gauntlet and changed to clean glove.  I only  held her hand with my glove free hand. I always feel like my glove or gauntlet are contaminated.  Wish there was a way to purell them!  Yes,  more road trips.  It felt great to be free on the road again.  Eventually flying again to go further distances.  Becky

I am not positive, but I think that the Twilight saga, Justin Bieber, and all things Kardashian make me flare.

 As well as Gerardo Rivera and bananas.  Just sayin'.

Suzy... I totally stood in the rain for an hour and a half for the midnight showing on Thursday... LOL. Oh, yes, guilty as charged. Do I think the movies are fabulous? No... but I go with extremely low expectations (expecting them to completely suck) so that when they only kind of suck, I can be pleasantly surprised!

Kira & Suzy... The Justin Bieber comments... LOLOLOL

Yes, I agree - Becky - did they not have you gown up? If you have to take off your sleeve, then you should also have to take off your clothes. Isolation gowns work both ways - to protect the patient (in a case such as your cousin) and to protect the health care worker or visitor (in the case of highly infectious pathogen) - and there are different types of isolation protocol (air, droplet, contact). Did you ask the nurse if she was wearing sterile clothes in the room? If she bothered to change her clothes as she comes in and out of other patients' rooms? And her shoes? And is she doing her handwashing like she/he is supposed to? Sorry! I am probably sounding on a rant - but I am sitting here with absolutely zero malice, I am chuckling and just kind of think it is comical because I worked in a hospital for many, many, years... And I can totally see how your scenario played out! And yes, you could have totally asked for a pair of sterile gloves... although I would bet that they are using "clean" gloves from the box, not sterile ones that are completely wrapped separately and require the use of sterile technique to put them on. (It is pointless to put on a sterile glove if you have not been instructed in sterile technique as once you touch the outside of them, they are no longer sterile). Yes, I agree about removal of the glove - because your hands are touching everything and the glove can't really be washed like your hands with regular hand washing. The sleeve however, I think is so silly. People wear clothes with long sleeves - they don't make them remove their shirts, and yes, that is what the yellow gown is for - to provide a barrier between you/your clothes and the patient. I hope your cousin does well. I am glad you got to see her and proud of you that you made the trip alone and have been able to overcome that hurdle! You are a great cousin and she is so lucky to have you by her side.