Wednesday, September 16, 2009

Many changes

To start with, Sunday was a glorious day. Because Marty had a meeting in the morning, we knew we were going to miss part of the concert, but decided that it was still worth going. On our way to Plymouth, we stopped to pick up Donna, and then continued south toward Plymouth. The concert was held in an upscale development, on what they call the Village Green. We tried to get to the handicapped parking area, but were told by a guy directing traffic that it was full. But then another guy came over and said we could squeeze in behind the last car, right on one side of the Green. There were lots of people, but from the car even I was able to walk to an open space where we set up our chairs (two of those great collapsible canvas chairs that we borrowed from Julie and Jim, and Donna in her wheelchair). We couldn't see the stage, but we could hear the music. We had missed the first two groups, but heard the last two, a jazz combo and then Deborah Henson-Conant, who plays electric harp and who is a particular favorite of Marty's and Donna's, and whom I have been to see twice before. She opened with a hilarious semi-spoken, semi-sung account of hearing someone play "blues harp" and falling in love with it, asking her parents for a blues harp for her birthday, and being presented with a harp, which was not at all what she was expecting!

All this time I was glorying at sitting outside in the sunshine, letting music wash over me, enjoying being outside after so many days in the house, and feeling better than I had in days. I was weak and tired (it took all my energy to get from the car to where we set up our chairs), but once I was there I was able to relax and feel as good as I've felt in a long time. Being in the sun is so important to me, so I am so especially glad to have had this opportunity.

The concert ended promptly at five, and there were some dark, threatening clouds, so we decided to get back to the car, rather than sitting and waiting for the crowds to thin (our first plan). I had to go to the bathroom pretty badly and was trying to do it without having Marty set up the scooter, which is getting harder and harder for him. So we stopped at rather pretentiously named The Market. Marty went in and came out riding in a motorized cart, which I got into and drove through the store to the bathrooms, which were way in the back. On the way out, I managed to get the cart wedged in (it was a narrow place with a big cart and minimal turning room), so Marty had to direct me and I proved not very good at taking directions! As it turned out, it didn't rain, and the black clouds soon subsided.

We decided to stop for dinner in Plymouth. My stomach was feeling a bit iffy, so I had a bowl of clam chowder (I always crave creamy things when my stomach is upset), and then some crab cakes which weren't very good, so I just picked at them. Oddly, this may turn out to be my last meal.

Monday was a pretty horrible day. I was expecting to be exhausted, but I wasn't expecting things to get as awful as they got, with an anxiety attack and episodes of horrible pain. I've had this pain before--a sudden onset of intense pain in my jaw, which quickly moves into my upper chest and feels like an elephant standing on it. Because it is so intense and it's been several months since my last episode, we all forgot that it is actually a very unusual presentation of gas! So I was taking morphine, and a gel that is rubbed into my arm that is supposed to relieve anxiety, and eventually I drifted into a half-awake reverie state that was far superior to being in pain, but still very strange.

The badness actually started at two A.M. We didn't get to sleep until after midnight, so when I woke at two with a horrible anxiety attack I didn't want to wake Marty. I've never had one before but I knew exactly what it was--that it wasn't anything physical, but just total, overwhelming dread. I sat on the edge of the bed for awhile, and then eventually sat up against some pillows and watched TV (which I know doesn't wake Marty). I think I slept a little, but at five I decided I probably could sleep for real, so turned off the TV and lay down. It lasted for about thirty seconds, and the dread hit again, hard. At that point I did wake Marty, and he worked on calming me down. Memories are a bit foggy, but at some point I did make it into the living room and into my chair, and it was there that the pain hit, so that I was screaming in pain just as Laurel arrived, who quickly sized up the situation and told Marty to give me more pain medicine, even though it was "too soon" according to the dosage schedules.

Eventually, in the evening, I did fall asleep in the chair, trying to watch TV, but not able to stay awake. I was trying to watch the Patriots' game (football, for you non-sports fans), but was mostly asleep, despite the fact that it was a very exciting game and I was trying my best to stay awake at that point (near the end, where it got very exciting). I called for Marty, who was in the bedroom, and asked him to help me get back to bed. I tried to stand up, but the chair was stuck to my bottom so I had to sit down again. Maybe I tried to stand up too fast the second time, but for whatever reason, I suddenly found myself sitting on the floor with no idea how I had gotten there, and no idea of how I was going to get up again. Marty called Julie and Jim, who came downstairs, but I didn't want anyone to try lifting me (my body just telling me it was a bad idea). Marty put a dining room chair next to me and eventually I was able to pull myself into it. I sat for awhile and then walked, holding onto Julie, back to bed.

Earlier, when I was dealing with that horrible pain, I did finally remember that what I needed was gas medicine, which, miraculously, after all the heavy duty painkillers, was what did the trick. This was actually put to the test the next day, when I began to have the pain again and short-circuited it by chewing a few Gas-X tablets!

It was wonderful that I slept soundly through the night. I had been scared of another anxiety attack, but instead had the best, most sound sleep I'd had in awhile. So Tuesday was a pretty good day--I was very tired, but not hurting anywhere and not in pain, except for a few onsets of the gas pain, which never developed into anything because now we know what they are and how to deal with them. We were talking about the conference in New York, and Marty was determined to get me there. So a lot of Tuesday was taken up with figuring out all the things we needed. I called Lauren, who spent a few hours locating a nearby hospice (in Kingston, New York) that could follow me while I was away, plus lots of other logistical things. Laurel and Judy packed my suitcase, and there was a hilarious episode of finding someone who could iron a blouse for me (I have very few things that need to be ironed, but this blouse is one, and it's one of the few pieces of clothing I have that fit my expanded size). Judy finally said she could do it (Laurel has only one usable hand since her auto accident), and she discovered she hadn't lost a skill she'd learned in childhood!

The one thing that had really changed is that I have totally lost my appetite. All I wanted was liquid (to moisten my mouth, which stayed dry no matter how much I drank), and mango bars, and ice chips. At one point, I think Sunday night, I said wistfully that the one good thing about the hospital is that they have ice chips, Julie said that she had ice chips, and so she's been bringing down a steady supply. But the thought of eating has become totally repugnant. I don't even want to drink, so I've been keeping my mouth moist with the ice chips, mango bars, and Life Savers. Lauren has ordered some mouth swabs for me.

We woke up this morning still planning to try to go on the trip, but when I realized I wasn't hungry at all (and my blood pressure was a ridiculously low 76 over something), I decided I was too weak, and was just going to keep getting weaker if I wasn't eating. I talked a lot with Julie and Marty, not just about cancelling the trip, but about whether this was really the beginning of the end. It seems to me that if I don't want to eat, it may be a sign of systems shutting down, and my feeling is that right now my stomach is just going to fight any attempt to put food into it. I'm going to listen to my body and will certainly eat if I feel hunger, but right now I just want to keep my mouth moist, and be comfortable.

The important thing is that I feel totally at peace. I've had long talks with Julie and Marty, and Lauren was here and we talked some more, and we are all focused on making sure that my wishes are followed, and that I remain comfortable. I will try to write more if I can, but may dictate an entry to Marty if I can't.

This blog continues to be important to me, and I value all my wonderful readers.


  1. Hi Judi,
    Thinking of you all the time.

  2. Yes. Like Herrad said, you are often on my mind. Be Well and at peace.

  3. Judi -- While I rarely write, I enjoy starting my day by checking in with you (via your blog) -- well, enjoy it when your posting starts something like "Sunday was a glorious day..." Hope there keep being more.



  4. Judi, your blog is remarkable. The tone is so entirely open and positive, open to all of us. I am reading and thinking of you every day.

  5. I love you and appreciate all that you have done for me. I am thinking of you and sending you love and good vibes. Thanks for the loveliest party I have ever experienced. What a high! We loved it and my husband, who lived in Iceland for three years, was very excited to read the entries about your influence there. We even had a great discussion that night with his friend of 56 years about my work in the mental patient liberation movement and the civil rights issues and the oppression which still exists today. MUCH LOVE from Vermont, Dayna