Small Victories

In the short time of a weekend I managed to feel both well and amazing and high, and gross and nauseous and low.  For some reason I’ve felt sick the past couple of days, not sure why.  Then again, we never really know why.  It could always be a plethora of possibilities so I just try to deal and not think to much about it.

But let’s talk about the good part.  For the first time in over two years I went and took a yoga class this past Friday.  My body was feeling able and  ready. I felt so incredibly proud of myself afterward I couldn’t stop smiling.  It’s been a long time since I’ve felt that way and I’ve missed it.

Let me explain why this is such a big deal.  The first reason being the background fear I live with every day that my heart may go cookoo bananas  and set my defibrillator off.  My fear increases at the thought of doing something athletic, aerobic, or exerting.  This fear stems from a few things but mainly from the fact that I am told by cardiologists I cannot do any aerobic working out –cardio in particular.  Swimming is ok but let’s get real, I live in NYC.  I am also “allowed” to bike but only if I keep a close watch on my heart rate and keep it under 125.  No thanks… too much to think about at a time when you’re supposed to be clearing your mind.

So, in the past I’ve done yoga.  Stretchy sleepy slow restorative yoga.  For a while I had a lovely yoga teacher who came to my house once a week and did restorative poses with me for an hour and a half.  The restorative yoga worked magic over one year as it got me from a very frail, weak body to one that I felt strong and more comfortable in. It also helped me adjust to the metal box protruding from my bony chest and re-introduced me to my body after all the trauma it had been through. The breathing and stretching was so healing, and although I had to stop the one-on-one lessons (muy expensivo) I still practice what I learned on my own.

Yet lately I’ve been looking for that yummy physical outlet.  Somewhere I can go and move my body for a long period of time.  I had been thinking about a class for some time now and always let my nerves get the best of me.  I was a wreck to go on my own … what if I collapsed in this place filled with strangers?  What if I feel faint and can’t get home quick enough?  How will I feel when I see that I cannot keep up? Completely messing with my own mind.

Finally I kicked the “what-ifs” and got my butt to a class near to my apartment.  I felt so anxious and thought about turning around twice but trooped on.

It was a beginner class.  The second I stood there I had to face a lot of “Lauren” stuff.  Like, who I am at the very core.  I felt crazy competitive.  I wanted to be the best in the class, do everything perfect and hold every pose super long and hear “great job Lauren!”  But, chill out L , this class isn’t about that.  It’s about small victories and only looking inside myself, not around the room.  I decided to just close my eyes for most of it and concentrate.

I was only physically capable of doing a little less than 1/3 of the hour and fifteen minute class.  For the poses I couldn’t maintain, and the repetitions I couldn’t endure I just sat on my mat in a comfortable pose, a stretch, or quietly meditated on my breath. It was a tough realization to see that my body wasn’t capable of so much in comparison to others my age (and much older) .  Each time I couldn’t do something I thought about rolling up my mat and leaving. I had that moment of feeling lame,  but I would immediately change the Debbie Downer attitude and something would make me stay.

I am so happy I did stay.  The end of the class brought a huge sense of accomplishment.  The teacher was cool, I told her a little bit about my situation at the start.  She said she was so so glad I stayed, and that it was a great thing to come and be in a class environment –that I would feed off the energy in the room.  I do agree and I am attempting my second class today.   I still get anxious but now I’m determined to keep going until I can do the entire class.

I love a goal.

Disturbing

This is sick.

I thought my imagination was running crazy wild when I first thought about this. It sounds like a movie. I have actually been paranoid about this in the past. Ugh, gives me the chills

http://blogs.discovermagazine.com/80beats/2009/11/11/how-to-prevent-heart-hackers-from-turning-off-pacemakers/

Bigger than my body

Spent the morning facing reality. It’s the thing I hate most about hospital visits.

I spend 100% of my days facing my brain in the direction of hopeful positive thinking.  I’m not gonna lie, it’s so very hard especially when things are happening in my body that scare me all the time.  I choose to do this because it’s the only way.  Because I HAVE TO.  Because I really truly believe I have a healthy body somewhere underneath all the scar tissue and difficulties.  I have to chisel it all away with love.

It’s especially hard on days like today when I am faced with my body’s limitations.  I watched the barium go down through the xray of my chest and fight it’s way down my esophagus.  I wasn’t surprised when the doctor told me it isn’t working.  In fact, there is no peristalsis happening.  My esophagus doesn’t contract and that’s why it hurts to swallow anything.  The Scleroderma attacks connective tissue.  I’ve been like this for quite a while now, and I knew all of this already.  So why is it so hard to hear it for real from the whitecoats?

I was shaking inside the room.  Partly from the sub-degree temperatures in the hospital but also because I was nervous and uncomfortable.  It blows my mind when I look at these tests… this physical evidence that my body is ravaged from the Scleroderma.  But I don’t feel as ravaged and broken as the tests say I am.  I refuse to feel it.  Can that make it not true?

My sister came with me today.  It felt good to have someone waiting for me outside of this room of truths, a nightmarish funhouse of weird machinery and whitecoats.  I left it all behind in there, put on a smile, and couldn’t wait to get outside and live my life, MY TRUTH with someone I love.  I won’t let any test result take that away from me.

What happens next I don’t know but I wish that I never have to feel this way again.  It doesn’t get easier with practice.

I will find that healthy whole me.  No matter how long it takes.  I don’t believe the doctors when they say there is no way to fix an esophagus that’s lost its motility —or no cure for Scleroderma — or no way to live with a scarred heart for very long.  That’s just not my style.