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Jun 17, 2006 07:00AM
Yes, I well remember the fat-fingered typing I did when I had to wear those bulky bandages 23 hours a day. You will learn to wrap yourself - I can now do it in the waiting lounge in an airport. But, there might be a bit of frustration at first. My husband heard bad words he didn't even think I knew. Patient fellow that he is, he would reroll the bandages after I flung them across the room. When your PT is going to teach you to wrap, take a friend and a video camera. It's nice to have something to review when you are trying to do it yourself. A tip - have the videographer stand behind you, so you get the perspective you will have when you are bandaging yourself. My husband videoed standing behind the PT, and I had to reverse all the left/right stuff.
If you have mild lymphedema, there is hope that you will be able to go without the sleeve/glove and bandaging routine some of the time. For me, it took about 18 months of faithful compliance. Then, I began to experiment. At first, I would feel my arm swelling after a very brief time. But now, I go days at a time without my lovely fashion statement. For me, it happened in stages. I was discharged from therapy when the swelling was down by 50%. Then, I didn't make any forward progress, and in fact, regressed and had to go back to the therapist a few months later (we think it was because I seriously bruised my arm doing something un-coordinated). Got the swelling down to the 50% mark again, was discharged again, and figured this was my new normal. That summer, I started swimming every day, and the swelling went down to the point where my hand and arm looked normal. But, everytime I tried to go without sleeve/glove or skip bandaging even one night, I felt the difference. Continued with walking and yoga for exercise during the winter, and discovered, finally, during the spring, that I could actually go out for an evening without the sleeve and feel ok. Now, as I said above, I go for days without bandaging - I do wear the sleeve and glove whenever I walk/treadmill/yoga, and any other time I'm doing anything deemed "risky", I bandage whenever I fly (about once every two weeks for work), and I make sure I bandage about once a week otherwise. Until about six months ago, I did the full massage routine every morning. Now, some days I just do trunk massage (neck, underarm, groin, chest) skipping the full arm stuff. To look at me, you wouldn't know I had lymphedema, but last week I participated in a clinical trial of a new measuring device, and they definitely saw a difference in my two arms.
As to the comments you'll get about bandaging and the sleeve. Whenever I fly, my seatmate always asks how I broke my arm. Many folks think the sleeve/glove is due to burns. Others ask me if it's because of carpal tunnel (I'm in a high tech profession). Sometimes I explain about lymphedema, sometimes I just say I have a chronic condition, sometimes I just grin and say "you should see the other guy". I know I should always try to educate folks, but often I just don't want to go into it. Oh, and if you get a really horrified reaction when you tell someone it's because of lymphedema, they may think that you have lymphoma. I know my neighbors had that rumor going around for a while.
Well, that's the story of my life with lymphedema. Sorry I was so long-winded. Good luck with your progress in therapy and in treating this monster.