Memorial Day in America is a solemn occasion, but it marks the unofficial start to summer in the United States. As most Americans shed heavy clothes and head for the beach with their family and friends, those of us with lymphedema brace ourselves…and feel isolated.
Our enemy – heat – has arrived. We scour the stores (unsuccessfully) for summer pants that aren’t cropped or in some other way designed to reveal our compression stockings and swollen legs. We seek shelter in air-conditioned rooms. We hope and pray that our “summer swelling” will go back down when the cooler temps return in the fall.
Lymphedema can make us feel like a prisoner in our own bodies. Especially in the warmer temps. This summer – try not to let it.
It’s hard to believe that growing up (pre-lymphedema), summer was my favorite season. But I didn’t love summer because of the heat. I loved it because summer was freedom. I could do what I wanted with my time. Be with my friends. Practice with my synchronized swimming team. Go out on dates. Go to the movies.
Getting lymphedema feels like your GPS has led you to a dead end in front of a precipice that drops ten thousand feet. There’s nowhere to go. No way out. And there’s no way to get back home.
You’re suddenly stuck in a body that won’t work the way it used to. You can’t do the things you used to be able to do. And you wonder how many other things you eventually won’t be able to do.
Having lived with lymphedema for 17 out of my 40 years, I have come to a decision: There is nothing I can’t do.
I have busted through my dead end. Jumped off the cliff. And I encourage you to jump with me.
There are so many things I thought I’d never be able to do when I got lymphedema, and yet I have done them.
Why didn’t I think I could do these things? Sometimes I let doctors and medical professionals put up the walls. Sometimes I built the barriers myself.
The fact that I have accomplished these things has given me hope.
Here are the Top 5 Things I Never Thought I’d Do with Lymphedema…But Did. If I did them, so can YOU: Continue reading
(Click below to watch the video for a demonstration – or read the transcript that follows – to see how snowshoeing is a perfect lymph fluid-moving wintertime activity.)
Special thanks go to my mother and brother, who gave me the snowshoes and poles as a Christmas present this year. My family has always encouraged me to try new things as I cope with lymphedema. You never know what new activity, product or routine could make an impact in the successful management of this condition. I am very lucky to have cheerleaders to keep pushing me past my comfort zone, and to make sure I never lose hope that we all can find a better way to live with lymphedema.
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Meet Kimber Strong. Kimber and I have much in common. She is in her late thirties, has a home in Maryland not far from where I was raised, and lives with primary-onset lymphedema.
But, while I was trying on prom dresses and running lines for the school plays (unaware of the ticking time bomb in my lymphatic system), Kimber was wearing hospital gowns and enduring a steady diet of antibiotics and bad medical advice.
Kimber Strong has had lymphedema since she was six years old, barely out of kindergarten.
She is indeed “strong.” Despite her rough road, she remains optimistic and has enthusiastically embraced a recent, cutting edge medical procedure. The procedure involves transplanting lymph nodes from one area of the body to compensate for malfunctioning nodes in another. Kimber has since had this procedure, called lymph node transfer, and reports progress in her condition. Ironically, Kimber was made aware of this procedure, not through the medical community, but through a blog written by a fellow “lymphie.”
Kimber’s story reaffirms for me that maintaining our LE network is critical. We are our own best hope.
Caring for lymphedema can feel like a full-time job. But it’s a position that doesn’t pay a salary or come with benefits.
So, to help pay the bills in my household, I work for an elected official in New York. I do anything and everything I can to help my boss communicate with the public and the press in a positive and straightforward manner. It’s a 24/7 job. That’s not a complaint, just a fact.
My philosophy is: keep the mind engaged and you will forget about the uncooperative body.
I owe my lymphedema an apology. Over the past 60 days I have put it through the wringer. I’ve done just about everything we are told not to do as lymphedema sufferers. Work 12 hour days, 7 days a week? Check. Subsist on pizza, coffee and Halloween candy? You bet. Exercise? Nope. Meditate? Nah-uh. Wrap? Not a chance.
Why did I put my lymphedema though this abuse? My chosen profession is politics, which means that every September and October is a test of endurance. The last two months before election day are a sprint with much at stake. This year, the future of the county in which I live (as well as my own immediate financial well being) hung in the balance.
Thankfully, this time we came out on top. My boss handily won re-election, and I still have a job. My lymphedema, on the other hand, came in dead last. My body had been so neglected that my lymphatic fluid felt more like lymphatic solid. I was so stiff, I made the Tin Man seem like Stretch Armstrong.
Subsequently, my immune system surrendered to a cold that had been lying in wait for weeks. Getting my body moving and whole again would take more than an oil can.
The first time my husband Luke and I became intimate, he didn’t know I had lymphedema. Since the swelling in my legs is mild, it’s not something he would have easily noticed (especially since he was quite distracted!).
Funny, it wasn’t the lymphedema as much as the compression stockings that I wasn’t ready to share with him. Laying naked in bed baring your body’s imperfections, even if it is a foot or arm that is fatter than the other, is beautiful – that’s what intimacy is all about. But for someone with lymphedema, getting to that state can feel less than sexy. There was no Dance of the Seven Veils for Luke.
In the movies, when they get hot and heavy, they don’t do a closeup to reveal the ingenue’s compression garments and watch while she takes a time-out to strenuously remove them. And that’s not a scene I wanted to play out either. At some point when we were getting close, I excused myself to the bathroom, yanked off my stockings, put my clothes back on and rejoined Luke.
From the time my alarm clock goes off in the morning to the moment I shut my eyes at night, I am constantly reminded that I have lymphedema in my legs. When my bare feet touch the plush rug on my bedroom floor and I sleepily stagger to the bathroom to brush my teeth, I savor every step. I think to myself, “God, this feels good.” Spreading my toes a little wider as I stride back across the hard wood floor in the hallway, I try to push out of my mind the thought that within minutes I will once again be encased from my toes up to my waist in compression stockings. My iron legs, as I call them.
When the medical professionals say that lymphedema is a progressive disease, they aren’t kidding. In the 15 years that I’ve had the condition, the development of my lymphedema can be tracked by the compression garments I have worn to manage it.
Compression garments are stockings or sleeves or some other type of clothing that provide gradual compression that pushes the lymphatic fluid towards the heart (meaning the garment is tightest at the bottom of the limb, i.e. the ankle or wrist,and loosest at the top of the limb).
Some lymphedema patients can’t fit into compression stockings due to the severity of their swelling. I don’t know how they can function or bear the pain. For myself, I cannot remain in a standing position for more than a few minutes without my stockings on before I start feeling discomfort. Within a matter of hours swelling would follow and my legs would be back to day one of my onset. Without stockings, I could not function day-to-day. I could not go to work, go for a walk, or do any of the necessary and normal activities of life. These stockings do the work that my lymphatic system is incapable of doing.
So over the past 15 years, I’ve gone from a school-girl knee-high stocking, to a sexy thigh-high length, to a full pantyhose style that extends past my belly button that I have dubbed “The Grandma.”