Tuesday, December 21, 2010
A great piece in the Roanoke Times
This picture is of a fierce attorney and her husband (also an attorney) assisting his extremely ill wife with IV treatments for her late-stage Lyme Disease.
My friend sent me an excellent series of articles done in the Roanoke Times (Virginia) on the harrowing stories of many Lyme Patients in Virginia as well as the massive controversy that follows the disease, the patients, and especially the doctors who treat us (LLMDs, "Lyme-literate medical doctors"). See http://blogs.roanoke.com/lyme/2010/12/17/salvos-launched-in-lyme-dispute/#comment-152.
The stories of these Lyme patients are detailed, and bring to life the painful reality of this disease. The stories are almost identical to mine and thousands of others, years of misdiagnoses, hundreds of thousands of dollars of medical debt, searching for someone to treat your Lyme for a long period, painful treatments.
Despite what some doctors say, the disease is growing to epidemic proportions. And I'm not about to stand by and watch it ravage thousands of more people when it can be prevented with education of the masses, but especially MAINSTREAM doctors.
The story in the series above about Taylor Albright, a young attorney who has been completely side-lined by Lyme for years, had a really deep impact on me. She is (well, was) a lawyer as well. "Her husband called her The Tiger. Their colleagues did too." I felt an immediate cyber-connection to this woman I have never met in the article written about her. Although we differ in that she has a husband and three children, I could tell she was a fighter. A real fighter. Someone who doesn't back down, and who will prevail.
And I hope when (not if) she and I get back to being attorneys, she might join me in the fight against the IDSA to get this disease the medical recognition it deserves, and the insurance coverage it requires. As I've said before, I find it no accident that this disease fell into my lap. Some days like the last week, I feel awful, and don't know why. Nothing changed, and I feel hopeless again. Not as hopeless as I used to feel, but despondent and robbed of my life. Especially when I hear of friends having happy hour jaunts, going skiing in Lake Tahoe, traveling the world, even just going to holiday parties. I feel lost when I hear about all the wonderful things my friends are doing with their careers. But I don't scream at the world, "Why me?" anymore. I know why me. I just, well, I am just fucking pissed off some days that it is me. I know my purpose. I do. But, you know, it gets fucking old after 3 or 4 years working towards that purpose when I feel I have nothing to show for it and I just want to go for a hike or even a walk longer than 15 minutes! Or work a full day or be able to make dinner for my friends or get my errands done all on my own.
I cannot even imagine how difficult it is for the Lyme patients I know that have been going through this for 10 or 20 years.
I know to be grateful for everything I have. I do.
Alright, Ms. Taylor Albright, I hope you get to read this and I hope we can work together one day in fighting for the rights of Lyme patients who are too sick to fight for themselves.
Posted by MM at 11:31 PM