Hey, lymphies!
I’ve just spent the last couple days in Northampton, Massachusetts, and the weather is gorgeous. It is finally beginning to feel like spring! :)
The impending warm weather has me feeling a little torn, though.. On one hand, I am so happy to see the sun come out! It instantly brings up my mood. On the other hand, however, it means discomfort is on the horizon. With warm weather comes more swelling, shorter hemlines, and sandals – the trifecta of frustration. It means that I’m about to enter yet another season of worry and embarrassment about my leg, and I’m not sure I’m ready for that yet.
What do you think? How do you feel about this sunny weather? Is it a cause of celebration, or panic? Leave a comment and let us know!
So what were you doing in Northampton without me?! I lived there for three of my four years at Smith (spent my junior year in France) and would move back there in a heartbeat if I could afford it (and if I could get all my medical problems properly treated in the area). It’s a wonderful place, very friendly and relaxed. As for your lymphedema, I have a couple of suggestions, based on a great many years with bilateral lower-extremity lymphedema (OK, fifty in the right leg, about 42 in both, but who’s counting…hey, I just turned 60, on the 4th, and guess what, I feel the same as I did on March 3!), and also on advice from doctors and therapists: (1) don’t wear short skirts or shorts much–they give the sun, the bugs, the twigs and thorns (etc.) opportunities to break your skin and let bacteria in, raise the temperature in your skin (and the temp and number of capillaries) too much, and when you sit, whatever the chair is made of or covered with will press into your skin and stick to it, neither of which helps; (2) if you want to wear sandals, don’t wear them much, and do wear the kind that are closed at the heels and buckle or lace enough to stay on and give your feet support; (3) wear socks or stockings over your compression stockings…that’ll protect them from wear and damage and extend their life expectancy, a good thing given their cost! Also–while you may well end up with lymphedema in both legs, and may not be able to prevent that from happening no matter how good your professional care is (and let’s face it, no one’s is good enough; if it were we’d all be getting a full remission or even a cure), it’s a good idea to elevate your legs whenever possible and ALWAYS wear whatever compression garments are prescribed. Air conditioning is very important in hot, humid areas; don’t spend more time than you have to in such environments. If you’re on a beach, keep your feet covered (especially when walking and swimming–they make things called Water Walkers and I found that I should have gotten them at least a full size smaller than my shoe size, since mine felt horrible when they filled up with water) and wrap something around your legs (they make really pretty sarongs that match swimsuits); don’t fall asleep with your legs exposed to the sun (I did that once…very bad move!).
I guess all of the above is kind of scary or at least disheartening…does your doctor know how you feel about having lymphedema? Have you gotten any good advice on how to deal with seasonal changes or the different aspects of your life? Like most Baby Boomers with primary lymphedema, and I admit there are few of us, I got no good advice at all and a great deal of very bad advice and treatment, including soaking my feet in piping hot water for as long as I could tolerate it. No one in the US knew anything at all about lymphedema; even in Europe they must not have known much, or someone would have done the work that would have led to more effective and more cost-effective treatment than CDT! Now we have the technology and much of the scientific and medical knowledge needed to take those last steps towards a fully effective treatment and a cure…but the money to do the research keeps getting cut off!
Barbara and Alexa – you two are remarkable examples. Thank you for these great posts. Barb, I have had very similar experiences with the medical community giving me so much bad advice. We become our own best doctors in the end – Alexa, you will learn to advocate for yourself (but I guess based on these posts, you already have!).
And I have to agree that Barbara’s advice about outdoor wear and sun and bugs is correct. But I haven’t followed it very often throughout my life with lymphedema. I, too, am 60-something and have had primary in my left leg for 45 years. It just started showing up in the right leg about two years ago as I began CDT, manual lymph drainage and new compression garments. Yes, it brought me to tears as that was always my “good leg”. Gunter Klose from his lymphedema clinic here in Lafayette, CO said I was lucky to get so many good years out of that leg. All I could think was, “Gee, that sure makes me feel great!”).
I can’t deal with humid weather either; don’t know how you all do it. When I travel to visit family back in the humid states, my legs give me terrible problems and don’t settle down till I get back home to Colorado.
I do wear shorts a lot in the summer – even those black Lycra cycling shorts. But for the first 17 years I hid this swelling and my old Jobst garments even from college roommates as much as possible. But when I turned 30 and moved to Durango, in southern Colorado, I decided I needed to live my own life and it didn’t matter what people thought or said about my swollen leg. So, yes, I do get too much sun on that leg (especially when cycling or hiking in the Colorado mountains). And it is exposed to more bug bites. And it has suffered in a big cycling crash on the way down a mountain nearly 3 years ago. But I have had little trouble with it, all things considered. My advice would be to stay active, don’t hide it, be sensible as Barb says, but most important get out there and live the life you want. In the end, people will admire you for your courage and self-confidence. And even if you don’t have the self-confidence right away, do what my yoga teacher says when she introduces a tough pose: “Fake it till you make it”.
Good luck. This is a great site.
Hey Jim…I think maybe I should move to Colorado! Actually, most of the year the climate in Northampton (MA) is great for my legs: cool or cold, and dry. You were lucky to get any help at all when you were younger; I got nothing worth the name until after I had cellulitis in August 2002 and demanded a diagnosis and treatment. My goal now is to fight for (1) a truly medical treatment, one that will take advantage of the technological and other resources that exist today and give us a real–full–remission without the need for hypervigilance, lots of work, lots of money going out, and lots of sleep deprivation because of the time CDT takes; and (2) a cure. There are experts out there, trying to work in the fields of genetics, chemistry, biology and physics, and their funding gets cut cut cut. (That’s been happening even since before this horrible “recession” that seems more like a depression!) I donate to the Lymphatic Research Fund annually, and until this year it was whatever I could give; this time I decided to set it up as a recurring, automatic annual $60 contribution. Their website makes that very easy and it’s at http://www.lymphaticresearch.org.