Buenos Aires, Treatment, and Gratitude

I'm going to Buenos Aires in May.

The words don't feel real yet, but I am definitely going. I'm excited and terrified at the same time. This is one of many times that I'm completely in awe of my mom. She went to Brazil on her own, at 19 years old, during the military dictatorship, and without knowing a single complete sentence in Portuguese. Damn. I've never travelled anywhere outside the US.

My practical reason is that I have enough points to convert to Delta Skymiles to pay for the round trip flight, and that was the biggest obstacle. Now I just have to come up with the money to pay for everything else.

The emotional reason is quite a bit different. It's not intellectual, not practical, almost not rational. It's visceral. Or, lately as I talk about it more, it's a feverish infection taking over my higher reasoning.  I try very hard not to let fear guide any decision I make, but while fear may not be in the driver's seat right now, it is almost certainly in the passenger side pushing, cajoling . . .

whispering . . . 

'drive faster.'

I'm afraid I will run out of time to travel to Buenos Aires - at least as a dancer. 

My doctor has given me three diagnoses and, maybe it is my upbringing showing through, but to have the names of these things gives me some measure of  power over them.  I have autoimmune polymyositis (my immune system is attacking my muscles/connective tissue) and that has given me a sort of road map. I can make a plan. I can learn. I didn't, however, expect that the diagnosis would be just the beginning. As my muscles have weakened, I've learned that the strength I had built in my muscles had actually been masking other problems. Once my muscles began weakening, some even deteriorating, other problems were revealed. Can't it ever just be one thing at a time?

Still, it's amazing how the body compensates for things, how it picks up the slack when and where it can.  The muscles around my knees and ankles had been picking up the slack (almost literally) for ligamentous laxity (loose ligaments from years of abusing my lower joints).  The upside is that I have great range of motion in my ankles - the bad news is, as the muscle supporting my ankles have weakened, the stability and strength in my ankles, and my balance generally, has suffered.

I also have chondralmalacia in both knees which is a fairly common condition but complicates how I treat the instability caused by the ligaments being weak. I support my ankles and knees with braces - both because of the laxity and the muscle pain. However, when my joints swell from overuse or whatever, I can't brace them because it worsens the pain from the chondralmalacia by compressing my joints and making them feel like sandpaper rubbing against sandpaper.  I can take anti-inflammatories and a very few muscle relaxers, but not narcotic pain killers due to allergic reactions, so my options are further limited. I feel like I'm living in the middle of a Venn diagram of ouch.

The most immediate problem is preserving muscle and halting any further deterioration. I have physical therapy, weight training, and a combination of pilates and yoga regimen that I now have to follow. I work on the 3rd floor of my building and, while it takes awhile, I take the stairs four times a day. Sometimes I get to my desk panting a bit, but I can still do it.

I skip the two campus shuttles that would take me from my commuter stop to my building, and walk the mile and a half to and from my building at least half the days I work (that's about 3 miles a day).  Walking as fast as I can, it still takes me half an hour to walk a mile and a half. I used to walk more than twice that fast. I meditate. I read up on mindfulness. I keep a log of my muscle measurements every week. If I continue to lose muscle, we have to take the next step - high dose steroids.  My doctor and I are trying to avoid that for as long as possible.

The pain attacks still come every couple of days, but that's down from 2 or 3 times every day. I still don't know the mechanism that causes the pain attacks. There seems to be no particular food, drug or environmental factor that my doctor and I can find. They come when they come and I wait them out. I breathe through them. I try to listen for the message, look for a pattern.

And I still dance.

I asked my doctor if I was making any of my conditions worse by dancing and he said the benefits outweighed the risks of further damage, for now.

"Keep dancing. Whenever and however you can."  So I do.










In this season of gratitude, I am grateful, so incredibly grateful, for the leaders who dance with me. They have been patient and generous. Warm, soothing and kind. Saturday night I felt like I was passed from one protective, almost cocooned embrace to another, all night long. Even a shy, newer leader I had never danced with, held me as though I was the most precious thing he could hold in his arms. Please tell me the teacher who is teaching him that!  I will send everyone to them.

Meanwhile, I try not to apologize or focus on what I can't do, and focus on what I can give in the moment.  With Fandango starting on Wednesday, I have those little fears in my gut - what if something happens? What if I can't dance? What if I'm terrible? Festivals don't seem to bring out the most helpful self-talk. I'm working on that.

One thing at a time. Fandango this week. Austin Tango Festival in March/April. And then, Buenos Aires in May.


I'm ready.