Not So Good

Though yesterday I was feeling really good, delighting at the sunshine and the beauty of the world, interacting with those I met with a big smile, last night was a different story.

In the afternoon, I had consulted with a physical therapist. Now that I have so much more energy and so little chest pain and shortness of breath since beginning dialysis, I want to exercise to improve my blood circulation and heart function. But I have been doing as little exercise as possible for the last several years. So how am I to safely begin exercising again? I have been taking walks to the ocean, but wanted some guidance. The very friendly Alex gave me an exercise schedule and showed me how to lift weights. So yesterday evening I did as Alex had instructed and walked 48 minutes non-stop, no stairs. (He told me to build up to stairs.) That felt good, being out in the world, seeing the play of sunlight and shadows on buildings, the flowers, other walkers and their dogs, the wonder of the ocean.

Upon my return home, I had to hook up. This is when my mood changed. Aaron was having dinner with his dad and stayed overnight at his dad's. I was home alone with the dialysis machine, A.K.A. the cycler. As I have for thousands upon thousands of nights, I prepared to sleep alone. It's been almost 10 years since a man shared my bed. Not counting the Canadian who gave me a ride home when my van wasn't working and wouldn't leave my cabin in Nova Scotia until the morning, but I'm not counting him. Sure, there have been a few, a very few intrigues, but these have occurred in the daytime. Actually, I have only literally slept with four men in my entire life--Rod, though he always told me to get over on my side of the bed; Shizeng, though he was only with me a few weeks; Mark, a gay friend I visited for a week while he was a student in Texas, and this was simply sharing a bed, no touching; and Mike. And I was last with Mike in January of 2000.

Life is so difficult alone anyways, but add to this dialysis, and it's sometimes overwhelming. Last night I was overwhelmed. I cried myself to sleep, then woke up around 2, as I have been doing quite frequently since starting dialysis. I went through an hour-or-so round of crying, then dropped off again.

This morning I've been lethargic, still in my pajamas at 10 o'clock. I know this doesn't seem decadent to most people--lazing around on a Saturday--but I'm generally up and at 'em by 7 every day of the week. I took care of all the dialysis protocol--unhooking myself, putting a new iodine-laden mini-cap on my transfer set, draining the dialysis bag that still had some fluid in it, putting the used supplies in the garbage, carrying the collection jug to the toilet and dumping, weighing myself, taking my blood sugar and blood pressure, recording this data. Then I went back to bed and had another cry.

I know that when one is sad, one is supposed to isolate the problem, not allow a single event to spread out into everything wrong that's happened in one's life to date. That is, if your boss criticizes your work, you can be upset about her criticism, but don't start thinking about how your mother never thought you could do anything right and how your ex-husband was always nagging and on and on. Isolate the problem.

The problem is I have difficulty doing that. It all seems so inter-related. Mostly these cries have been about loneliness coupled with dialysis and the realization that now that I am not a kidney-pancreas transplant candidate, my wait time has more than doubled, provided I am approved for a kidney transplant. The wait for the former, as given at Thursday's orientation, is two to three years, since as long as a cadaver is giving up a kidney to a recipient, it makes sense to use the same cadaver's pancreas for the same recipient. But the wait for just a kidney for an O blood type, which I am, is seven to 10 years. (AB, four years; A, five to six; B, six to seven.) I've only been doing dialysis for two and a half months. Just the thought of a decade of doing this makes me numb.

All the kidney support materials speak of not giving up hope. As of now, here are the things I have to look forward to: 1) spending the rest of my life hooked up to the cycler every night and doing a mid-day exchange every day; or 2) waiting seven to 10 years for a cadaver, but probably dying before one becomes available, which means #2 is really #1. It seems as if my only real hope is to be run over by a bus as soon as possible.

But, of course, as always, I will eventually get dressed today and go out into the world smiling. Just as no one has ever seen me at my worst physically, no one sees me an my most anguished.