Today is Memorial Day in the United States, a day in which we remember those who made the ultimate sacrifice for our country. Visiting the graves of some of these brave men and women at Arlington National Cemetery this weekend put my daily battle with lymphedema into perspective.
They paid the price. And so did their families.
This image shows the back side of the headstones where the name of the soldier’s spouse is engraved. I noticed that often, several decades separated the two before they were re-joined in this final resting place.Continue reading “Their sacrifice, our duty.”→
A major hurdle for anyone with lymphedema is figuring out that you have lymphedema. Diagnosis can take months, even years, due to a lack of knowledge, research and awareness in the medical community. It took entirely too long for me to get an accurate diagnosis, and it might have taken a lot longer without the help of my dad.
Although I was a grown adult at the time and living in New York City (hours away from my parents), mom and dad were both actively involved in my life and in trying to solve the mystery behind the sudden swelling in my leg.
When I came home for Christmas, four months after my leg first ballooned I still had no diagnosis, no treatment, no plan. My Dad, however, had not been idle. He had researched my symptoms through his own channels and online. During my visit, he unceremoniously handed me a medical newsletter he had discovered. In it was a description that matched my symptoms – “a feeling of heaviness and tightness in the affected limb accompanied by achiness.” I had used similar words to describe how I had felt! For the first time, these words were coupled with a name – lymphedema. And another word: incurable.
The greatest wish of every mom is for their child to grow up healthy. When my older siblings and me were born, my dad counted our fingers and toes, and my parents breathed a sigh of relief.
My Mom enjoyed a blessed 23 years before “her baby” came down with lymphedema. The diagnosis was probably as hard on my mother as it was on me. I know that she would take my pain and frustration on herself, if she could. Continue reading “Moms and Lymphedema”→
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.
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.”
My brother, mother and I set out on the sizzling summer morning of August 9, 1998 for a jog across the Brooklyn Bridge. Mom had always wanted to do that. She was visiting from Maryland that weekend. I remember the date, because we were anxiously awaiting the arrival of my nephew who came into the world later that afternoon.
Despite the warm weather, we stopped in at our local gym for a quick sauna afterwards. Then it was back home for a hot shower before heading into the city to show Mom some of the sites.
We capped off our sun-soaked march around Manhattan by cooling off in a Greenwich Village movie theater to take in Saving Private Ryan. By the end of the movie my left knee was aching badly. When the lights came back on, I could see my leg was swollen from the knee down into a column shape – couldn’t make out my calf, couldn’t see my ankle.