Saturday, December 24, 2005

Lymphedema 2005 - Remembrance

It's Christmas Eve and 2005 has only a week before it passes into history, gone forever. The year has been a very mixed experience for me.

In so many ways, it has been a blessing as I have been able to establish new support groups, filling a void and reaching out to many many more people.

Lymphedema People has continued to grow and expand around the world. We now regularly have around 36,000 to 38,000 visitors per month from around 150 countries. Early in the year we moved to website to a new professional host site and secured the domain names.

This past Fall, I began eleven medical blogs on related disorders. Since they are new, readership is small, but steadily growing.

I have also been active in the Lighthouse Lymphedema Network and in that wonderful group have met new friends and together we are trying to get treatment legislation passed in Georgia.

For me personally, the year has been one of continued struggle with my health. Continued bouts of cellulitis, under going five sessions of chemotherapy for the lymphoma, continuing problems with things like my lungs filling with fluids.

Sometimes, it even becomes a struggle to want to continue to struggle. By the grace of God, life does go on.

It also has been a year of pain as I was so crudely stripped of my innocence about the lymphedema world. I was harshly awakened to the reality that just because one has lymphedema, it does not necessarily a nice person make you. It's sad in many ways, because you would hope a serious illness or disability would deepen your spirit and soften your heart.

The lymphedema "establishment" continues to either ignore me or sometimes act as if they wish I would just go away. So many of the organizations seem to have forgotten the reason they exist and have lost touch with the reality and hearts of those they claim to help.

I am first and foremost a survivor of 53 years of lymphedema and 10 years of lymphoma. To me it's not about the glory of your organization, how much money you can rake in or your image.

It is about the people...the everyday "common" folk who struggle to cope with this dreadful condition, to survive the many complications and frustrations. We are almost a forgotten people even by those who would claim they are helping us.

But, to all those wonderful everyday the many new friends and family I have found, I just want to say "Thank You!!" You are the reason I continue, you bring joy to my life and I am blessed by your presence in my life.

I wish and pray for each of you that 2006 is a better year...a year of rediscovered joy and purpose...a year when treatment and research takes many steps forward. I pray and long for the time when lymphedema, itself exists only in the medical history books.

My Best to Everyone

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