Today has been like something resembling the stateroom scene from "A Night At The Opera." Within a short period of time (although I don't think everyone was actually here at the same time) we had Laurel, Tim, two visitors (my friends Can and John), three plumbers, and three house cleaners. Can was trying to interview me on video for some training materials he's putting together on recovery and the consumer movement, the plumbers were coming in and out (today is the day my dishwasher decided to die--another visit of the gremlins, I guess!), so they were dealing with that and a recalcitrant toilet, and meanwhile Laurel and Tim were trying to figure out how to get a copy of the invitation to my "celebration" onto this blog (without success so far). All this time, I was reclining comfortably in my chair watching things unfold, and Oliver was wandering around getting people to tickle him (Gilbert, the shy cat, had the good sense to stay out of the maelstrom). To add to the confusion, the phone must have rung at least ten times.
Earlier, Lauren had been here with one of the other hospice nurses, and was glad to see that I was feeling much better than I had on Saturday. It really does seem, though, that I have taken another downward step in terms of energy levels and breathing capacity, as the short walk from the bed to the bathroom, for instance, now leaves me feeling totally winded. Once I get settled down somewhere, particularly in the lounge chair, which I find the most comfortable place, it doesn't take that long for my breathing to return to normal, and I feel that I could get up if I needed to and take care of whatever needs doing, but of course when I try I am very quickly reminded of how weak I am.
My spirits remain high, and I continue to be able to extract pleasurable things out of nearly every day. Marty and I can almost always make each other laugh, and being silly together is very important for both of us. Getting out as much as we can is a big part of trying to lead as "normal" a life as possible, and we keep adding to the list of places we want to go (mostly day trips). Lauren has talked with the people at the oxygen company and we now have a plan for overnight trips--although the portable concentrator is not compatible with my bi-pap machine, they said they will deliver a full size concentrator to our destination and pick it up in the morning. They are also going to deliver a second supplementary power supply for the portable, which will extend battery life considerably.
Responses are beginning to come in to the invitation, and I am really happy that we decided to do this. When I first brought it up it seemed like it would be difficult to pull off, but with so many people working together we will make it happen.
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Judi, have you tried taking a picture of your invitation, saving it on your computer, then adding it with the add picture icon? That should work.
ReplyDeleteI'm not sure what things Laurel and Tim tried--they thought the problem might be incompatibility between the Mac (Marty's computer) and Julie's PC. I'm sure someone will figure out something, but not me (computer dummy).
ReplyDeleteThanks for writing this blog. In September I start a social work program and just found out my first internship will be with a hospice program. Your thoughts and feelings about hospice and end of life issues is very helpful to my learning curve. Thank you and peace.
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