Happy Anniversary to My Lymphedema

9 Aug

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.

The weather, jog, sauna, hot shower, walking around the city all day in the heat….it was the perfect storm that set in motion the onset of my primary lymphedema.  Unbeknownst to me my lymphatic system was not formed right from birth, and my body was like a ticking time bomb waiting for a trigger like the extreme conditions of that day to set it off.

~

A toast to 15 years of coping with lymphedema!

A toast to 15 years of coping with lymphedema!

My name is Britta Vander Linden and I came down with primary lymphedema on that day 15 years ago when I was 23 years old.  Since then, I’ve learned a thing or two about coping with the limitations put on my body by this condition, which has required my attention every day.  I think it is time I share my experience with others like me who struggle with lymphedema every day.  If even one tip or word of advice results in making life a little bit easier for someone else living with lymphedema, then the effort I have put into creating this blog will have been well worth it.

I encourage readers not to be shy.  Please comment and share your experiences too.  As I quickly learned after that fateful summer day in 1998, resources are too few for people like us.  We must help each other by sharing our knowledge and experience on this blog, its companion Facebook and Twitter pages – and other forums and websites like it.  Nobody – not doctors, not our friends, not our family (as much as they may try) – really understands what it is like to walk a mile in our swollen shoes.  Until they find a cure, we are our own best hope.

Enjoy my Lymphedema Diary.

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6 Responses to “Happy Anniversary to My Lymphedema”

  1. brooke coneys August 9, 2013 at 10:41 am #

    Very moving, and generous of you to do this. Good luck, Britta!

  2. Anand Gandhi August 18, 2013 at 12:40 pm #

    Thank you for sharing your experience as I can firmly relate. For me it was 1984 that my parents noticed my lymphedema. Since then and and through numerous Manual lymph drainages, I understand how you are feeling. Its amazing no cure has been offered. I think the only option is to do more indepzndent research.

    Anand,
    Dallas Texas

    • brittavl August 22, 2013 at 10:29 pm #

      Thanks for following, Anand, You have been coping for quite a long time. Please keep sharing your thoughts and experiences as well!

  3. Tee Tee January 2, 2014 at 7:55 am #

    Hi Britta
    You may be miles away but you are surely making a difference to many!
    I got lymphedema at the age of 17 in 2009 and its still an ongoing battle. Only thing that I was advised to do was “get compression stalkings and keep your feet elevated at all times”. I have not tried anything else but have been reading a lot about MLD and physio in South Africa.
    I am currently studying pharmacy and hope one day we can find a cure for lymphedema.
    Thank you so much for your blog!

    • brittavl January 4, 2014 at 4:52 pm #

      It’s great to connect with you, Tee Tee! Glad to hear that you are in the medical field. You are so young and driven – perhaps you will be part of finding the cure we need or even a new treatment. Be well.

  4. Cheryl Carney March 26, 2015 at 5:08 pm #

    It is so good to hear from other people who suffer on a daily basics mine started in 2011 after having 26 lymph nodes surgically removed.

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