One thing I've found helpful in my 43 years of managing my own primary lymphedema (mostly in my left and now entering right leg) is associating changes in my condition to changes in my lifestyle or activities. I often ask myself, and frequently see similar questions on lymphedema web sites, "Why is my leg larger today?" "Why isn't the swelling going down like usual?" "Why is my foot still swelling?", and the kicker question for me last year was "Why am I swelling THERE! - in my private places - That's never happened before?!"
I took a hint from my many years managing computer systems and their implementations, now at the fourth busiest airport in the country (Denver). When computer systems fail, over 80% of the time it's because of a change that was made. So we started managing our changes better by defining the change and advertising the change to everybody including the service desk that gets the customer help calls. Then if somebody calls the next day with a problem in their Email account, and the service desk knew that a new Email patch was installed the prior night (the change factor), it's much easier to resolve the problem.
When it comes to managing our own lymphedema, which we all have to do, we are our own "service desk". Right? We know when something is not "runninng right". And if we also are a little more aware of what "changes" have taken place recently then it will be easier to step back and help solve our own problems.
Example: garment fit. Last year when I got that very scary swelling "down there" (think Pillsbury Dough Boy?) I was at first very perplexed as it seemed to have come from out of nowhere. So I did my computer guy thing and asked myself what changes had taken place. The week before I had received a new custom Medi 550 garment (that's the fabric that feels like a bullet proof vest). But I'd been wearing a Medi for several months, still looking for a right fit, without this nasty problem. Aha, but THIS Medi had a different issue: it was too tall in the waist. And that week I was working on building a straw bale house in Missoula. And I was doing a lot of bending over and other body-contortion construction stuff. The garment ended up rolling down in the front. All I could guess was that it was blocking or trapping lymph flow and pushing it into those places we never want to see it go. When I changed back to the older garment that had other fit issues, the swelling went away. Put on the tall garment that rolled down, swelling came back. Well, you can guess how long I wore that new garment: no more. So I had the problem come up, thought back to what had changed, removed the change component and the problem went away. That's not always possible to so easily remove what has just changed, but it's still good to know and discuss with your PT or doctor if possible.
Example: exercise. Garment mis-fit was pretty easy to detect. What has taken me more time to figure out is the affect of exercise on my lymphedema. I eventually learned that it takes about 48 hours to be noticed in my leg(s). But after a good bike ride (like 55 miles to and from work yesterday - yes!) or a long hike I swell up more. Of course we've all been told this happens with lymphedema. And of course we all wear our garments during exercise (right?). But I think it's important to notice, in your own body, how long it takes your lymphedema to react to something like exercise. Then if you know it's going to happen, you can take steps to avoid the swelling before it happens. For me, that means wearing a garment on my (once good) right leg for a couple of days after a long bike ride. Then the swelling doesn't occur at all in that leg because I anticipated it's onset from the exercise. And if the left leg, which has had lymphedema for 43 years, needs a little help (I always, always wear my garment on that leg) I give it some compression wrapping - like I'm doing today and tomorrow after my bike ride to work and back.
Example: humidity. This one drove me crazy. I'd go visit my parents on Hilton Head Island off the SC coast. Compared to Denver it was like stepping into a sauna. My leg survived the flight well enough. I wore a garment on my once good right leg. But after about three days, maybe four, the leg would just balloon. Massage was no help. Elevation of the bed at night had little affect. It got very uncomfortable. The only way to bring it back down was to do the whole compression wrap thing; very uncomfortable in humid, hot weather (I have no idea how you all manage that). Then on a longer stay I realized that the leg would eventually "even out" or somehow begin to adjust to the different climate. I helped it with wrapping and massage, and it got better. Change: humidity. Resolution: massage, elevate, wrap, let it stabilize in time.
Example: diet. I haven't noticed any specific association between diet and my own lymphedema. But a dietician who addressed our South Metro Lymphedema Support Group (find us in NLN) a few months ago said we should all be aware that diet does affect lymphedema. Particularly our intake of fluids, alcohol (but I do like my single malt whiskey!), and the big demon, salt, should be at least tracked even casually so if changes occur in your lymphedema you could make the association. Like if you binge on salt and cracked pepper crinkle potato chips from that Kettle company and then swell up you know what to blame. Cut back on the salt; take in more water; add some massage or wrapping or elevation of the bed at night, and you're helping yourself. Change: diet. Resolution: correct the diet, take the usual massage/wrap/elevate measures.
Maybe this is interesting to some of you. I hope I didn't bore you. There is so much to share that each of us has learned about treating ourselves, and this is a great place to do that.
