Last night I watched a video of a reality TV star giving a speech at a Lyme benefit. It was comforting and heartbreaking to watch. With limitless money, support and doctors at her disposal she still went years without a diagnosis. Even after 3 months of intensive treatment, she continues on this twisty road of unknowns when one is attempting to heal from Lyme Disease.
What struck me most about the video, oddly enough, was when she talked about her head pain and the feeling of swelling in her frontal lobe. Each time she described it, I almost wanted to scream, "That is what mine is like!" It was comforting in some way to hear someone use words to describe a pain that I call, "Aliens trying to get in or out of my skull," and what for me is really indescribable.
Lately I have been doubting my instincts and wondering if "something else" could be causing this two year debilitating head pain and feeling of brain swelling. I have been going through the Mayo clinic headache list with my regular doctor and trying "this and that" without any change. A referral to a neurologist is in the works just to make sure there is not something else causing this head pain. And, with the referral come all the doubts. Will he believe me? Will he understand? Can he help? Blah blah blah.
My angel of a Chinese medicine practitioner, aka Quinn, who for whatever reason I trust implicitly, was so gentle with this little doubting one when I saw him over the weekend. He thought seeing a neurologist just to rule out any other cause was reasonable, but reminded me that all of my symptoms and history all point to tick borne illness (Lyme and co-infections). "Looking at the whole picture," he said, "I can't imagine what else it could be." Oh Quinn, I love how he looks at the whole picture, but wonder why it is so hard for all docs to do that. I feel so grateful for him.
I may be on the slow track when it comes to healing from this disease because my body can tolerate so little treatment at a time, but I know I have someone by my side that has run this race before with others. That image reminds me of a friend's post this morning. She is recovering from a foot injury and about to run her first marathon. She mentioned how she is connected with a pacer and will be in the 12 minute mile group to make it a 26 mile stroll. That's what I am doing with Quinn, the long stroll (likely 3-5 years) toward wellness. I WILL get there!
What struck me most about the video, oddly enough, was when she talked about her head pain and the feeling of swelling in her frontal lobe. Each time she described it, I almost wanted to scream, "That is what mine is like!" It was comforting in some way to hear someone use words to describe a pain that I call, "Aliens trying to get in or out of my skull," and what for me is really indescribable.
Lately I have been doubting my instincts and wondering if "something else" could be causing this two year debilitating head pain and feeling of brain swelling. I have been going through the Mayo clinic headache list with my regular doctor and trying "this and that" without any change. A referral to a neurologist is in the works just to make sure there is not something else causing this head pain. And, with the referral come all the doubts. Will he believe me? Will he understand? Can he help? Blah blah blah.
My angel of a Chinese medicine practitioner, aka Quinn, who for whatever reason I trust implicitly, was so gentle with this little doubting one when I saw him over the weekend. He thought seeing a neurologist just to rule out any other cause was reasonable, but reminded me that all of my symptoms and history all point to tick borne illness (Lyme and co-infections). "Looking at the whole picture," he said, "I can't imagine what else it could be." Oh Quinn, I love how he looks at the whole picture, but wonder why it is so hard for all docs to do that. I feel so grateful for him.
I may be on the slow track when it comes to healing from this disease because my body can tolerate so little treatment at a time, but I know I have someone by my side that has run this race before with others. That image reminds me of a friend's post this morning. She is recovering from a foot injury and about to run her first marathon. She mentioned how she is connected with a pacer and will be in the 12 minute mile group to make it a 26 mile stroll. That's what I am doing with Quinn, the long stroll (likely 3-5 years) toward wellness. I WILL get there!
