I've been putting off writing this entry. I've been putting it off so much, I did not even send out my newsletter last month. I needed some time to process what I was feeling and how I was going to talk about it. As I write this sentence, I still don't really know what I am going to say.
Last month I was finally diagnosed with Lupus. I say "finally" because I've been dealing with mysterious symptoms for years now. I've been going to doctors, having them run tests to explain things like hair loss, dizzy spells, heart palpitations, digestive distress, numbness and burning in my legs and feet, and massive fatigue, among other things.
About a year ago, my symptoms got worse. After a very busy April full of several gigs, I ended up in bed for an entire weekend, frightened. I had sharp stabbing pains in my stomach, heart palpitations, leg weakness, nausea, dizziness, and a fever. I went to the doctor later that week, feeling horrible, and had all sorts of tests run. Everything came back normal. I was told it was "just stress".
By Thanksgiving, I couldn't empty my bladder. After some testing, it was decided I would need physical therapy to regain proper function of my bladder. It seemed unrelated to all the other symptoms, that my dancing was responsible, but now my team of medical practitioners seem to agree that the Lupus may have something to do with why my therapy is taking longer than predicted. Forgive me if it seems crude, but to put it quite simply, I haven't fully emptied my bladder since last Fall.
Anyway, after another busy April this year, I ended up with massive fatigue again. After another round of "normal" test results, I begged my doctor. I said, "Look at my face". By now, I had developed a strange rash across my cheekbones, nose, and forehead, and cystic acne all over the rest of my face. He decided to run some other tests. A week later he called me into his office. "I think you have Lupus". Two weeks after that, a Rheumatologist confirmed the diagnosis. Besides positive lab results, I now learned there was evidence of arthritis in my joints and that mysterious rash on my face turned out to be the classic Lupus symptom.
I left that Rheumatology appointment and went straight to a gig. I danced that gig with a new awareness of my body and my life thus far. When you first start learning Flamenco, you are inundated with all of these new rhythms, each with different names, percussive accents, and melodic tones, even if the counts are similar. The nuances are subtle enough that it can take a few years before a student can correctly identify what palo, or rhythm, they are listening to. Then one day it clicks. You hear the opening chords on the guitar, the first couple of accents, and right away you know that it's a Tientos, or it's a Tarantos. It's a Solea or it's a Solea por Buleria.
This is how I feel about my Lupus. I've been dancing with Lupus for years now, but not knowing it. You can only improvise, adjust, or choreograph so much if you don't know the nuances of what you're working with. Now I know that I've been dancing with Lupus. Now I know what to adjust for. Now I know how to improvise around it. Now I know how to choreograph with it. Now I know.
There is such relief in knowing. There is also wisdom to be gained from this point forward. Just like in Flamenco, where there's a whole new level of learning once you've learned the basics, I am now looking forward to getting to know and understand this new rhythm of Lupus. I'll keep you posted on what I learn.
Was this useful information? Did you like what you learned? If so, please feel free to Like and Share this article.
Last month I was finally diagnosed with Lupus. I say "finally" because I've been dealing with mysterious symptoms for years now. I've been going to doctors, having them run tests to explain things like hair loss, dizzy spells, heart palpitations, digestive distress, numbness and burning in my legs and feet, and massive fatigue, among other things.
About a year ago, my symptoms got worse. After a very busy April full of several gigs, I ended up in bed for an entire weekend, frightened. I had sharp stabbing pains in my stomach, heart palpitations, leg weakness, nausea, dizziness, and a fever. I went to the doctor later that week, feeling horrible, and had all sorts of tests run. Everything came back normal. I was told it was "just stress".
By Thanksgiving, I couldn't empty my bladder. After some testing, it was decided I would need physical therapy to regain proper function of my bladder. It seemed unrelated to all the other symptoms, that my dancing was responsible, but now my team of medical practitioners seem to agree that the Lupus may have something to do with why my therapy is taking longer than predicted. Forgive me if it seems crude, but to put it quite simply, I haven't fully emptied my bladder since last Fall.
Anyway, after another busy April this year, I ended up with massive fatigue again. After another round of "normal" test results, I begged my doctor. I said, "Look at my face". By now, I had developed a strange rash across my cheekbones, nose, and forehead, and cystic acne all over the rest of my face. He decided to run some other tests. A week later he called me into his office. "I think you have Lupus". Two weeks after that, a Rheumatologist confirmed the diagnosis. Besides positive lab results, I now learned there was evidence of arthritis in my joints and that mysterious rash on my face turned out to be the classic Lupus symptom.
I left that Rheumatology appointment and went straight to a gig. I danced that gig with a new awareness of my body and my life thus far. When you first start learning Flamenco, you are inundated with all of these new rhythms, each with different names, percussive accents, and melodic tones, even if the counts are similar. The nuances are subtle enough that it can take a few years before a student can correctly identify what palo, or rhythm, they are listening to. Then one day it clicks. You hear the opening chords on the guitar, the first couple of accents, and right away you know that it's a Tientos, or it's a Tarantos. It's a Solea or it's a Solea por Buleria.
This is how I feel about my Lupus. I've been dancing with Lupus for years now, but not knowing it. You can only improvise, adjust, or choreograph so much if you don't know the nuances of what you're working with. Now I know that I've been dancing with Lupus. Now I know what to adjust for. Now I know how to improvise around it. Now I know how to choreograph with it. Now I know.
There is such relief in knowing. There is also wisdom to be gained from this point forward. Just like in Flamenco, where there's a whole new level of learning once you've learned the basics, I am now looking forward to getting to know and understand this new rhythm of Lupus. I'll keep you posted on what I learn.
Was this useful information? Did you like what you learned? If so, please feel free to Like and Share this article.
If you have any questions or would like to share some thoughts on your health journey with me, feel free to leave a comment below. Thanks!
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