I have a rare genetic condition, called lymphedema distichiasis syndrome (LDS), which means I not only have lymphedema of my lower limbs, but I was also born with an extra row of eyelashes. Lucky me, you say? Not quite. As much as I would love to have an extra row of lush, beautiful lashes defining my eyes (let's face it, who wouldn't?) this is only desirable if those lashes are growing away from your eyeballs, not towards them as in my case. Needless to say, I've long since had them removed via electrolysis. My memories of having this done are not my happiest. It's not that the procedure was painful, it was more the way I looked each and every time (was it six?) I had to have it done...swollen tissue, bruises and goop, oh my! It was quite a sight, but more on this in another post.
Now to the lymphedema aspect of LDS and what this means for me. There is certainly a lot to cover regarding lymphedema and I will eventually get to it all, but it's going to take some time. For the purposes of this post, I will just give a brief overview.
The onset of my symptoms was so gradual over so many years that I wasn't diagnosed until I was 27 years old, despite having signs of the disease first developing in my early twenties. My earliest symptoms included mild swelling of my ankles which was always alleviated by elevating my legs; this mostly involved the simple act of going to bed at night. By the time I awoke the next morning, the swelling would be gone only to return again in the evening. Over time the swelling got worse, but like I said it was so gradual over so many years that I thought it was normal. It became my normal. In fact, for the longest time I simply thought that I had "thick" ankles, which have come to be not-so-affectionately known as cankles.
I eventually developed other symptoms, which were more bothersome, such as intense aching and throbbing in my legs after standing for long periods of time. As it turns out, I also have something called venous insufficiency, which is often, but not always, associated with certain types of lymphedema. They are, in fact, two separate diseases, diagnosed in two very different ways.
Dealing with my venous insufficiency had it's own set of hurdles ranging from trouble getting diagnosed to having a handful of not-so-fun outpatient procedures and minor surgeries. At at later date I plan on outlining all of this in order to help others that may be experiencing similar frustrations getting diagnosed and letting them know what exactly to expect if they decide to seek treatment. But for now, I think I've provided enough of a brief history, so now onto the main point of this post. Why, exactly, did I start this website?
The long and short of it is this: Lymphedema doesn't have a cure, but with a little bit of effort (okay, maybe a smidgen more than a little bit) it can be well managed. I'd like to share my experiences and the tips and tricks I've stumbled upon to manage this disease. Particularly, the consistent use of compression stockings.
I know, I know...ugh, compression stockings!? The mere mention of these words conjures up images of little old ladies in beige stockings so thick that even if they hadn't shaved their legs in five years it would impossible for anyone to know. They actually have gotten better over the years but are still far from being sexy. Despite this, they continue to be the best tool available for managing lymphedema and because of this, I have developed a love/hate relationship with these woven garments of nylon, spandex and elastic. That being said, the love I have for them for making my legs feel fabulous and keeping the fluid out (or in, where it belongs), definitely out ways my desire to rip them to shreds for defiling my fashion sensibilities. This is why I started this site: I have decided to embrace them whole-heartedly. Gone are the days of not wearing shorts, skirts and capris. I've had enough! I am done trying to hide the fact that I wear compression stockings. I am done wearing pants year round even in the dead heat of summer. I am done wearing the same few outfits over and over again because they disguise the fact that I wear these stockings. Not wearing them is not an option, and so the only thing left to do is to take the advice of fashion guru Tim Gunn and "make it work". I've realized that you don't have to hate your compression stockings and you certainly don't have to hide them, you just have to learn how to incorporate them into your wardrobe.
Join me on this journey as I scrutinize my wardrobe and my lifestyle and find a way to merge these two seemingly opposing worlds of fashion and compression. And who knows? Maybe you, too, will be inspired and dare to expose your hose!