Friday, July 3, 2015

The ride getting smoother

My driver was super nice yesterday, waiting for me with no complaint even though once again the ECP ran longer than expected.

When the nurse tells me I am in photoactivate, it's a sign that I'm near the end, kind of like when you are approaching the Palmer exit on the MassPike on the ride west from Boston and you know you're near to home. Photoactivate – the part where my while cells get a sunburn – comes after six cycles of removing and returning blood and collecting white cells each time. It's not quite over then because they still have to take your blood pressure and remove the needle and wrap your arm up.

In any case, the nice driver took me to Brighton to a great tapas restaurant, Tasca, making me feel like we were back in Spain, except that the hour, around 7 p.m., would have been unheard of in Spain, where if you got to a restaurant before 9 it was unfashionably early.

By now you have guessed that the driver was Katie, and I am so glad she's back in Massachusetts. She took me to Diane and David's house, where I spent the night and then got picked up by The Ride to go to Dana-Farber so the prescription transport car service could take me back home, a little hop  skipping and jumping because they will only deliver me to and pick me up from Dana-Farber.

I was afraid it was going to be another case of a no-show because at 9:30 a.m. the service that was supposed to pick me up was nowhere to be seen. Every time I called the main office I pressed everything they said only to get disconnected at the end. About 10 a.m. the driver finally arrived,  saying he was lost because many of them from the various services can't figure out that the entrance to 450 Brookline Ave. is actually on Jimmy Fund Way even though the signs point that way. Also he said he called me about 10 times, but he had called my home number even though I told them repeatedly told them to use my cell. I need to take the home number off. As some people in the younger generation might say, "Serves you right for keeping your landline."

Things are moving along well in several directions. I was waiting to hear from The Ride eligibility center to see if I could continue using its services even though standing up and sitting down, turning in a circle and walking across the parking lot was so easy I feared they would kick me off. When I got the large envelope I knew it was good news, just as it is in college admissions. They cleared me through 2018. I hope I don't have to use it that long.

I am only scheduled for procedures through the end of July. At that point Dr. Alyea will re-evaluate my skin to determine if I can decrease my visits. I am happy to report that I have noticed some changes. I saw the areas of hardened and thickened skin and the swelling in my hands, but I didn't feel any impediment to movement until I saw the improvement and realized the effects in hindsight.

I have mostly seen this in yoga. Sometimes I feel so inflexible that I want to say, "Oil me." It is mostly my joints, but I see now that my skin has played a role. I told my yoga teacher, Justine, that my movements feel more fluid, and she said she noticed right away that when she did an adjustment to a posture my arms and shoulders had much more give.

Despite all the hassles, something that I didn't want to do has turned out to be for the best.

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