Monday, February 16, 2009

My weekend away (Part 1)

I was nervous about traveling but decided it was worth the risks, and although there were some scary moments, it was definitely worth it (although I'm not sure I would have said that by the time we got home last night). I'll probably be writing about it in installments since so much happened and I have limited stamina for sitting at the computer.

On Friday morning, Kathy, my hospice nurse, came f0r her regular twice-weekly visit, and was very supportive of our going away. One of many things I love about hospice is how they fit everything into what I want to do, rather than trying to fit me into some prescribed role. I'm sure some medical professionals might have been all focused on the risks, but with hospice it's about making sure I can do the things I think are important.

We left on Friday afternoon, several hours later (of course) than we had figured on, and although Providence is just an hour away, it probably took us most of another hour to find the hotel, since the Googlemaps directions set us off on a wild goose chase. We have to travel with lots of paraphernalia--my scooter (which lives in the trunk of the car, so at least didn't have to be loaded on this end), my portable oxygen machine, both Marty's and my C-Pap machines, and assorted other junk. I thought to take 25 feet of tubing for the oxygen, but when we were finally getting set up in the hotel, realized I'd forgotten the little plastic connectors to connect the end of the tubing to the nasal cannula--a little piece of plastic the size of a fingernail, but being without it created problems, since the cannula tubing is only about six feet long. I called the oxygen company on Friday evening, and by Saturday afternoon they had delivered several of them to the hotel (along with lots more tubing), so at least I could move around the hotel room without having to drag the machine around (it's on wheels, but still...).

By the time we were settled in the room I was exhausted, so we decided to call room service and just call it a night. The room was big, handicapped-accessible (which meant it had a huge walk-in shower with a seat--really wonderful), and had a big flat screen TV. It felt good just being away, and both Marty and I felt happy and romantic. I suggested opening our Valentine's Day presents that evening, but he said we had to wait for it to be Valentine's Day for real.

We were planning on doing a bit of exploring in Providence on Saturday with some friends, but I woke up really tired, so we changed our plans to just meet our friends for dinner, and I actually slept much of the morning. Marty went out to the mall that was connected to the hotel, mainly to see if he could find some inexpensive shoe inserts since he'd somehow managed, in changing shoes for the trip, to put in only one of his custom-made inserts. His foot was really bothering him when he got back, but the inserts I think prevented things from getting any worse.

When he got back I was feeling a bit more rested and alert. Marty spent about an hour figuring out how to attach the oxygen machine to the back of the scooter, since otherwise he had to wheel it around while I drove the scooter, which was more difficult than it sounds. Once he had succeeded at that we exchanged our presents--I got him a book I was sure he would like, and he gave me a book as well, along with a box of chocolates that had a little bear attached to it. The bears are becoming quite a tradition--on our first Valentine's Day, two years ago, he got me a bear which has become quite an important part of my life--when I was going in and out of the hospital a lot (thank goodness that's over!), the bear, whose name, for reasons I am totally unable to explain, is Pinkypine, always came with me, and every time I got a needle, he got a squeeze. Needless to say, he got a lot of squeezes! A few months ago, he got me another bear, Bo-Bo, and now we have added this tiny new one, who I have named Elbee (for L.B.--Little Bear). We have a lot of fun playing with the bears and giving them voices and personalities--one of the great things about our relationship is how much we can enjoy being silly together.

Providence has wonderful restaurants, and we met our friends at one they recommended, and had a lovely evening. When we got back to the hotel, we opened a bottle of champagne that we'd brought along, and just enjoyed being together and able to focus on all the good things.

On the next installment I'll write about Sunday, when things didn't go nearly as well, but right now I'm getting tired and need to get back in bed for awhile.


  1. I'm glad to hear you had a good Saturday (at least). You deserve it.

    Thank you for your thoughts in this post on Hospice. It got me thinking about mental health recovery model vs medical model. What a shame that it can sometimes be so difficult to keep the focus on what a person wants to do, instead of what someone else thinks they should do. Why is it so difficult to honor an individual's values sometimes.

    Thank you for your blog.

  2. Hi-
    You should feel much better "dead" when you get to the Astral plane and return to the way you looked at 25. Caution, however, depending on where you are because some hospices in hospitals locate hospice wards near to pregnancy wards and use secret technology to force the Soul of the newly dead into the new babies of the pregnant girls. All diseases now have cures and "important" people now live physically and have been since the technology was worked out by experiments on the Vietnamese during the long war. However, ordinary people are not allowed to use this technology so they really die. I think you will be a lot happier once you are away from this place. In case you don't know anything about all this, you might want to read the "Tibetan Book of the Dead" and other books written by WY Evans-Wentz.

  3. I’m glad you’re interested in The Tibetan Book of the Dead. Here’s a link to a Guide that covers this book and other books of the Oxford Tibetan Series.
    If you find this useful, please mention it on your blog.