and then came...lymphedema.

[vlcarr]

I so feel your pain. I've been living with lymphedema since radiation. I'm back with my therapists twice a week now. I wish I knew why it flared up this time, but have no clue. I will not lie. I hate it. It's a daily reminder & just prevents me from moving on. Mine is worse in the heat, used to love summer, now I dread it. It has changed who I was much more than the cancer itself. Don't mean to be negative, but honest. I can only speak for myself. Then I feel guilty for feeling this way, because I "should" be happy I'm alive. I saw something recently that called lymphedema breast cancer's dirty little secret.

With all that out of the way.....I wear a compression sleeve all day, every day & have since I developed it during radiation, I wear a sleeve at night & I have a Flexitouch machine that I use pretty much every day. My arm size is not bigger but I have no doubt it would if I did not constantly stay on top of it. I am a good patient even if I hate it. I work on a computer all day. This last flare is the worst I've had. I have to take frequent breaks due to the pain. I am going to look into a program the Y has for bc survivors & try to get a more formalized exercise program to see if that will help. I do exercise the arm but not as regularly as I should. With a full time job and an hour a day in the machine it's a time thing. I feel like my life is consumed by trying to manage it & I resent not having time for a life, so yeah, I fall down with the exercises & admit that. I spoke to my boss on Friday about taking leave to do some of this during the day but I don't know how long I can keep that if it doesn't get better. There are VERY good therapists out there but do shop around. I switched from the ones I had originally. The hospital that treated my bc is the best here, but their lymphedema program is not. I've also found where you get your garments & bras is also very critical. I also have it in my chest & side as well so I also use swell spot. Sorry to go on & on but your post hit at such a frustrating time for me. I know more about lymphedema than I care to but please feel free to IM me if you ever feel the need.

I also travel from time to time & wear a gauntlet when I do that. I so hope you get good results with your therapy.

[Jackie07]

I developed lympedema after getting some very tiny bug bites while picking figs in the back yard. The redness crept toward my elbow before I went to the doctor and was put on antibiotic/IV immediately for cellulitis. After the swelling was down and the inflammation was gone, I was fitted with compression sleeve and glove. I've been wearing it faithfully everyday until earlier this year when I felt everything's pretty much back to 'normal'. So I only wear them when I'm out in the yard (for protection) and/or when I'm doing 'heavy' lifting such as carrying a barrel of water to the backyard.

[KsGal]

I have an appointment with the lymphedema specialist on the 25th. Mine is still pretty much confined to my index finger thumb and palm of my left hand. Im am so sorry to hear how hard lymphedema has been for you all. UGH! I had an appointment with my oncologist, where I told him I was developing lymphdema, and he looked at me and said "That is not lymphedema." So I asked what it was, and he said "Its some swelling. We do not see a puddle and call it an ocean." What?? Im doing the lymphdema massage and exercises I learned by watching youtube, and it doesn't seem a lot better, but it has not progressed either. I wake up with a regular size hand, but any activity at all just sets it off. I had this bizarre concept that women that got lymphedema where the ones who had many nodes removed, so of course I was wrong about that one and now I am feeling pretty whiney about the whole darned thing.