Arm like an elephant's rear but not as pretty!

[greenwytch]

Hi everyone,

I'm a newbie here but really do identify with so many of your stories - in 2002 I went back to University to get the BA I junked as a cocky teen. Just as I was due to sit my first year exams I was diagnosed with breast cancer (an extreme way to avoid the papers!) and so was under the knife (mastectomy and full axial clearance) instead of in the examination hall. I was lucky all the more unpleasant treatment took place in the summer break, because come October I was back (me and my wiggy) and although radiotherapy made me feel rough it was soon all over and my friends and tutors were great. So great I graduated with a 2.1 and went on to take my MA. However, during the last year of my BA I developed lymphoedema in my left arm. The treatment has been (until now, because I moved to Cornwall and discovered a really brilliant therapy clinic here) less than useful, because the therapist seemed offended by the allergy I threw out to the stocking and foam used in the bandaging process. My arm has been out of control - it is huge, and mis-shapen and can't be encased in hosiery because the shape of the limb forces the cuff to pleat around my wrist, thus forming a tourniquet. Now, I am using a circ-aid cuff, which is helping. But it is so tiring, carring this limb around, and with the cuff on I can't even make a mug of coffee or a vegetable bake (can't hold the veg so I can scrape it, managed to pour the jar of cheese sauce down inside the cuff instead of into the dish and scooped my fresh ground coffee onto the floor with the edge of the cuff instead of into the filter, to name but three disasters!) I can't work properly (I'm a features journalist - agents don't like to send me out to do interviews all strapped up, and my keyboard speeds are pathetic now - and they don't like waiting)
Still, maybe its a blessing in disguise. It'll give me time to write that book....!
(Always look for the silver lining, or so my Gramps said!)

[Charlotte]

I also experience arm lymphodema after my mystectomy ( both arms ).
Start phisioTherapy and for me it helps a lot.
I love my bath never thought it will be difficult to get out of the bath,because of the swelling.(arms) Now i take showers and do self massage with soap in the morning no swelling.

[greenwytch]

Hmm, I discovered the hard way about swollen arms and getting out of the bath! Like you, I massage in the shower (neck, etc.,) and use a soft loofah to massage my back but I still can't wear a compression cuff without my fingers turning blue.

Maybe I should design my own garment - now there's an idea!

All best wishes from the Green (occasionally blue)wytch

[renita]

I was hospitalized in 2005 with Lymphedema and weighed in at 653 lbs. I also had the worst case of Cellulitis this Dr. had seen. After the proper treatment and therapy,and pulling 130lbs.off of me in the hospital for one month it all subsided and healed the best it could. I continued to lose weight when I came home, but then I climbed back up to a 90 lb. gain, due to just not being careful, not eating a massive amount, just not careing to watch every morsel I put in my mouth. I then contracted Cellulitis again about 2 yrs. later, again treated with an antibiotic and went away.Now, I was recently put into ICU for A-Fibb, I also have CHF and HBP. Due to all of this I have been on High Blood Pressure medicine, Lasix, Potassium,Ranitidine, Baby asprin all daily .Now they have me on Blood Thinners and Carvedilol to slow the heart (a beta blocker). This has been in the past month. I have to have blood draws weekly to measure my INR# due to the Blood Thinners. I am not sure how good these blood draws are for my Lymphedema. I joined WW about 3 months ago and began losing weight again and I am weighing around 467 now. I had been as low as 459, but the carvedilol I believe now is keeping me from losing. I know if I could get the weight off it would help me, but the meds really are preventing me. Since going into A-Fibb, I am not able to swim my laps as I was nor exercise as I was. I was swimming around 25 Laps in 50 min. and for me that was great and I was feeling great and felt like I was on my way. Now, the most recent situation has been that I contracted Cellulitis again and because I had some trauma to my leg. I ran into the car door with my scooter, because the throttle on the tiller, got locked down and it literally ran me into the door and when I naturally put my leg out to stop the thing, it smashed my leg between the car door and the scooter. HUGE bruising from the incident and have a huge knot on my leg. It is better since the antibiotic, (cellulitis,bruise),but I still can't help but wonder if the blood draws are what I should be doing . And considering the weight loss, what about meds.that are keeping me from losing. I am just maintaining for the past 5 weeks and I was losing,losing,losing. ???????????

[HerDotness]

It's difficult indeed, I've discovered, to figure out when you must become more realistic and cope as best you can rather than continuing to expect that you can make things much better by doing this or that.

I'm not sure that a person can know when you've reached that point except by discovering that your best efforts don't seem to be helping as much as you want. But then, we're always encouraged to keep a positive, can-do attitude, too. When to stop pushing quite so hard and adopt a doing-what-I-can attitude to keep you going day-to-day is a heckuva challenge.

[renita]

I'm dealing with the Lymphedema and have lost a total of 233 lbs. Still have quite a bit to go, but am currently on Weight Watchers. I started WW after struggling with the Consistent Carbohydrate Diet and FIL passing away. I lost around 30 lbs. on WW in the middle of 2010 and all of a sudden went into Atrial Fibrillation and due to many other issues they have chosen to try to bring me out of it by meds. The meds slowed down my Weight loss and it took about a year for my body to lose again. I continued to exercise the best I could and even was swimming laps. I had swam 30 laps the night I went into A-Fib and it just continued to get worse, so I was in ICU for a couple of days, with them trying to straighten it all out. I went home, on meds and have my good days and not so good of days, but I am losing again and that makes me glad. I have had a couple more incidents with my legs and the Cellulitis also, but nothing that the antibiotics couldn't take care of, so that also makes me glad.
I still suffer with all the emotional stuff with Lymphedema, but the exercise seems to really help me in that area too. I bought myself a swiss ball and do what I can on that and I also use my resistance tubes and also am swimming laps and water aerobics, so I am active for a person of my size.
The lymphedema does seem to get better as the weight comes off, but it's always there. I'm still doing my Manual Lymph Drainage Massage daily, or I definitely notice, especially in my stomach.
To the one who just posted, I wanted to say, I am still learning about what is too much. I'm trying to listen to my body and push it, but not push it too much and yes, that is a heckuva thing to try to figure out. LOL I guess the important thing is even in this, just as my Weight Loss, I press forward>>>>>
Wishing you all, the very best in your journey with this sickness.

[HerDotness]

A person never knows when replying to an aged thread if those on it previously are still active on the site, so it's really great to learn you've managed to lose that much weight, Renita. Mega-GOOD FOR YOU!

If you've not seen the book Overcoming the Emotional Challenges of Lymphedema by Elizabeth McMahon, maybe you'll find that as helpful as I am. It's an "official LymphNotes" book, too. < grin > I like that it peptalks you as well as giving warnings about what kinds of emotional reactions are more serious and likely require support or even professional help. There are worksheets, too, where you can write out what you feel and what you've accomplished as well as what more you think you could be doing. I just got it, mostly to help me quit blaming myself for my first infection. My surgeon told me that no matter how careful we are, sometimes you just get an infection anyway through a tiny opening in your skin that you can't even see, and I know that's true. Even so, it's still been difficult not to keep wondering what I did or didn't do that got me so infected.

I'm recovering well at last thanks to two weeks of an antibiotic and a yukky little tube called a Penrose drain sticking out of me which my surgeon advised instead of having to get aspirated by needle as often as I needed that. She had no choice but to stick the needle where it hurt lots, and even though the drain is as not-fun as drains typically are, it reduced the redness and accumulation notably within 12 hours. Looks like I'll get it out as predicted this Friday. I sure HOPE, because it's a juggling act to keep a gauze pad held over the tube while trying to get a bra or compression garment on to hold multiple pads in place. Shouldn't use any kind of tape, my surgeon advised, because the skin was likely to be too fragile as badly as it had been infected.

Oh, well...I rarely do things halfway, so why would this be any different? < big grin >

[renita]

You are not alone with feeling like there's something we didn't do or did do that caused the infection. I've ran my scooter into the car a couple of times, not on purpose, but my throttle got stuck on my purse and before I could get it moved, it crashed and it always hits my leg. I've hit my leg a couple of times on the seats at the movie theatre's also and got another case of the cellulitis. It's just the way it is. I try to be very careful, but it can still happen. A Dr. once told me, as she took both of my hands in hers, that having Lymphedema is a journey. One that is for the rest of your life and you have to be patient with it and yourself. For some reason, that gave me a little comfort knowing she understood. Not everyone does, but it is real and it does change our lives. Learning to just roll with it, is the key. Be glad for the good days and pray on those bad days.

Thank you for replying. It's always nice to hear from someone who can relate, but it's also a bitter sweet thing, because I'm so very sorry that you suffer with it too. I hope things get better for you soon.