Sunday, July 12, 2009

Lots of activity

Sorry for being gone for awhile--my computer is in the shop and I've been borrowing Julie's, which she "borrowed" back from me some time on Friday and which I didn't get back till this morning. I'm not sure I would have had much time to write in any case, since we've been really busy, which is great.

On Friday morning, during Lauren's regular visit, she agreed that the best thing to do for my leg pain was to go ahead and call the pain clinic, which I did. I spoke with one of the nurses, who said she would speak to the doctor and call me back, and I was pleasantly surprised that when she did she said he had reviewed my records and was ready to repeat the radio frequency ablation procedure, and that they had an opening on Monday morning! We have to be there at eight thirty, which means leaving the house at a quarter to eight (it would be only about a twenty minute drive at another time, but that's rush hour). Poor Marty--he's not a morning person. I'm not nervous, as I was the last time, as I know exactly what to expect, and I think I'm prepared. I remember that the first thing that happened was sitting in a big, comfortable recliner while a nurse started an IV, and after awhile being brought into the procedure room and getting onto a table. Then they injected the anesthetic into the IV line, and after that it all gets a bit hazy. It seemed like only a few minutes passed, and I remember saying "Ow!" a couple of times with no great conviction, and no real pain, and then being told it was over! And I know that when we got home, I slept for basically twenty-four hours until all the medication was out of my system.

Even the pain clinic people were surprised that the relief I got was instantaneous and total; they told me that even when the procedure is successful, it usually takes a few days to kick in, but for me it was just like someone had turned the pain switch to "Off," and it's been that way until the last few weeks. Because I expect to be drowsy and out of it all day on Monday, I've told Marty that it's important that I not be alone at all; if I need to go to the bathroom, for instance, I need someone to walk with me. He expects to be at home all day; he's been very busy with a lot of his own stuff, which is important as he really needs his "real life," aside from being my caretaker. In fact, it's because of his work that we've gotten to do some interesting things.

One of his organizations has been involved in bringing a theater and dance troupe of teenagers from a refugee camp in Bethlehem to the U.S. The group is under the auspices of a cultural center ( whose brochure says they are "a grassroots organization run by and for the community to combat violence among children, teaching them to be promoters of peace." So for the past week Marty has been really busy helping with the logistics of the visit. They arrived on Thursday (they are staying with a number of host families), and on Friday they all went to a Red Sox game, in a donated luxury box, and since there were a couple of extra tickets, Marty and I got to go, too.

We debated whether to get there by car, and attempt to find handicapped parking, or take the T (Bostonian for "subway"). I know that the station near us, which is relatively new, is fully accessible, and the station nearest Fenway Park has just been renovated, but there's always the danger of ending up in one of those "can't get there from here" situations, and Marty is inclined toward driving in any case. I looked at the Red Sox Website under "accessibility," and also called their office, but they have no special handicapped parking; only the normal limited number of handicapped parking spaces on the street. Of course, those were all full, and in the course of driving around we saw several "No Parking During Red Sox Games" areas that seemed to be logical potential handicapped parking. We ended up having to pay for parking, but at least that was in a lot directly across from the stadium, and since we had a handicapped placard were able to park in the part of the lot closest to the street.

We then faced having to get into the stadium itself. The street was jammed with food vendors and people, and we were unable to get through the crowd to a curb cut that we needed to get to the entrance that led to the elevators. At one point, a very nice and helpful security guard tried to get us through, but she finally gave up. We were right near an entrance that had one step up, and Marty asked her if, having negotiated that, we would be able to get to the elevators, and she said we would, so I got out of the scooter and two guys materialized from the crowd and lifted it up, and then everything was fine. But of course one step is the same as a flight of stairs as far as accessibility is concerned!

It was a perfect night for baseball. After all the awful weather we've been having, the sun had come out, and it was mild and breezy. Sundown was approaching, and of course at this time of year there was a long, lingering twilight, eventually giving way to night. I had brought along a little blanket for my knees, but didn't actually use it until we were ready to leave. The box itself was a bit of a disappointment, after all I've been reading about these luxury suites--the nicest feature was a large, flat screen TV (being up that high, there was actually a better view of the action on the TV). It was an exciting game, tied until the eighth inning, when the Red Sox got a run, and then holding the lead in the ninth with a quick three outs, and it was great being outdoors, being with Marty, relaxing, and enjoying feeling strong. Once the game was over, we decided to wait till the crowd thinned out considerably before leaving. Marty had located a handicapped bathroom practically right outside the suite, and I decided to walk to it rather than take the scooter. Walking back, though, I ran out of breath, and just made it back to a chair just inside the box, which I flopped onto, unable to go any further, and reminding myself, once again, just how limited my energy is.

We had decided to take the new portable concentrator and its back-up battery, both of which are rechargeable, and since there was electricity in the suite, that worked fine, although it is still somewhat discouraging what a short battery life the main unit has. I think we would have been better off taking the small refillable liquid oxygen tank, which lasts for six to eight hours, but Marty was worried about running out and having no back-up at all. So we still don't have a good, reliable way of being outside for extended periods.

Once I was breathing well again, we were able to get out of the stadium without difficulty; the curb cut we needed was no longer blocked and the car was conveniently close. Since the kids had eaten directly before coming to the game, and since food at the stadium was so ridiculously expensive, we were hungry when we left, and although it was late decided to stop for pizza at a place near Boston University that had been one of Marty's favorites back when we was a student (and which I had eaten at frequently when the Center for Psychiatric Rehabilitation was located directly across the street--it has since moved several times to other locations on the B.U. campus). He had hoped to park conveniently near (he definitely did not want to deal with assembling and disassembling the scooter again), but finally ended up dropping me off while he went to look for parking (happily, when he came around the block again he was able to park directly in front). We devoured most of a pizza (I had a slice for lunch yesterday and will probably have the remainder for lunch today), so it was quite late when we got home and we went to sleep pretty quickly. Although for most of my life part of my bad sleeping pattern has been that the later I went to sleep the earlier I woke up, my being so weak actually works in my favor in the sleep department, and I slept till close to nine (very late for me).

Yesterday was another lovely day and I sat outside for a lot of it. I needed to rest because we were going out again to see the performance by the Palestinian kids, which was held at the Palestinian Cultural Center in Brighton (a Boston neighborhood). This center was once obviously church, and it is an old building with accessibility problems, but given the wealth differential between them and the Red Sox, I think they did a whole lot better! From the parking lot there's a paved path to a stairway, on which they had set out a portable ramp that is probably a little steeper than ADA standards, but which the scooter made it up fine on high speed.

First there was a dinner, and then we moved into the main part of the church for the performance. I was very tired, it was hot, and I fell asleep on Marty's shoulder for awhile. I'm still trying to process what I saw of the performance, which I got only in fragments, although eventually I woke up completely. It was somewhat distressing, after the emphasis on peace in the brochure, to hear how much anger and violence the kids were expressing, but I know this is a reflection of their lives and what they see around them. In the psychiatric survivor movement, we have recognized that people need time (sometimes a lot of time) to work through their anger and frustration before they can do meaningful advocacy work, and I certainly can't hold another movement to higher standards. But I am looking forward to discussing it with Marty and hearing his reactions.

We left during the intermission, as I was quite tired, and so didn't get to see the dance part of the performance. I was really nervous about trying to take the scooter down that steep ramp, as it led not just to the sidewalk (on which one had to make a ninety degree turn), but also to a set of concrete steps leading down to street level, and I was afraid that, even on the lowest speed, I might overshoot the sidewalk. After giving it some thought, we asked two of the guys from the Center to roll the scooter down the ramp, which I walked down, holding onto Marty. Although the scooter has excellent braking power, especially at low speed, I realized I had only one chance, and I'm definitely not Evel Kneivel!

When we finally got home, we were hoping that Gilbert had come out from wherever he had been hiding himself most of the day, but he was still nowhere to be found, and when we woke up this morning he was still missing. We were beginning to think (as we often do when we can't find him for this length of time) that he had somehow gotten out the kitchen door and into the basement, but suddenly I heard Marty say, "Oh, my god!" and he had the experience, as I did last week, of seeing Gilbert suddenly materialize, seemingly out of thin air (that space/time thing again). Gilbert may be feeling somewhat traumatized from his visit to the vet last week. The vet called yesterday to say that all Gilbert's blood tests were normal, but she wants to further investigate the heart murmur she heard when she examined him, which means an ultrasound. I asked her whether there were potential treatments for any conditions that might show up on the ultrasound, and she said that there were, so I've decided to go ahead with it. Poor Marty--it's another morning thing; he has to be there at seven thirty on Thursday, although at least it's right in Arlington Center, just a few minutes drive away. As I told the vet, right now my main concern is that both of my cats outlive me if at all possible, as I would have a very hard time with losing either of them.

Right now I'm sitting out on my porch again. It's another lovely day, Marty is out (Judy was here earlier, and now Diana is with me), and I'm thinking about possibly taking a nap.

1 comment:

  1. Well, I was glad to read your blog entry today. I was getting worried about you