March 28, 2012

• Once again redefining my identity

     Once again, I find myself investigating and refining my limited knowledge of who I am. For years I have had the diagnosis of Fibromyalgia and have accepted certain things ( fatigue, daily pain) as part of my life and something with which to work.  I remember when Fibromyalgia was a bit of a controversial diagnosis because it was best defined by the things it was not. The tests that denied the existence of other things defined the presence of Fibromyalgia. My doc trialed me through some tricyclic antidepressants and I found a way to live with the pain and discomfort. I worked, raised me kids and tried to be the best me I could be. That meant a responsible nurse, a loving mother who worked through her abuse issues and sought not to subject my children to the same treatment. That I lived with pain and tiredness was just a given.

     So here I am twenty years later. I still have pain and fatigue, though it feels as if the intensity has increased. I have been diagnosed with Chronic Lyme Disease, which according to the CDC and other medical authorities, does not exist. It, too, has been diagnosed by the tests that named what it is not.   Except there is one test that is felt to confirm Lyme. That is the Western Blot. According to the CDC criteria because I had an indeterminate Western blot, I do not have Lyme disease.  According to The Lyme Whisperer, a Lyme Literate MD ( LLMD), the symptoms I have and the number of positive bands on my Western Blot confirm that I have Chronic Lyme Disease. There are two incidents of Herxe reactions in my past with Rifampin and Doxycycline that also seem to verify the diagnosis of Chronic Lyme Disease.  I have been told by Lyme Whisperer that he can help me. That there are yeast in my digestive tract that must be dealt with and little spirochetes penetrating the tissues of my body that can be dealt with successfully. That it could take years, but that life could be better. 

     So who am I if I am not Fibromyalgia and instead Chronic Lyme?

     Here is who I am not:

     I am not the diseases themselves. Fibromyalgia and Chronic Lyme Disease are names for a collection of symptoms that describe how my body is. They do not define the kindness in my person, my abruptness with others when they challenge me or the wonder I feel at things in nature. Fibromyalgia and Chronic Lyme Disease are not the person who spends time on the phone with a frightened elder and then her daughter trying to make for a safer home and better health for the elder. They are not the person who longs for skin to skin cuddling with the man I love and who loves me, who has taught me that not all touch is sexual touch.  Those diagnoses are not the woman who tries to better understand how to be compassionate, how to not take things personally when dealing with folks on the phone less than satisfied with what I can offer them. It is not the little girl who is afraid that by embracing treatment for a controversial diagnosis, she will lose her supportive physician. It is not the woman who wants to know what it would be like to live without chronic pain. She is the one who is willing to follow the diet, make the changes and take the low dose antibiotics that can mean the difference between get-up-go-to-work-go-home-eat-go to-bed-get-up-go-to-work and get-up-go-to-work-have-some-fun-see-some-beauty-go-to-bed. Maybe even give me the chance to experience some things I can't even imagine. 

    I realize that I have my flaws, but I am still a loving, giving person who tries really hard to be a better person. Maybe being sick has contributed to my feelings of not being enough. Maybe that will still be there after treatment but the only way to find out is to trust I am doing the right thing and continue on this path before me. I am strong, I have support, I can do this. 

  Blessings abound

  • 4:17 pm
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