Day 37: The one long headache is diminishing

With that drop in the Neoral two evenings ago, I have instantly noticed that my headaches have gone down to a dull roar and that my sleeping is better (fewer night sweats) and my water-retention swelling is less. Next Thursday the Neoral will drop down even more - and, excitingly, also the Prednisone. That's the one that causes my blood sugar to rise. I will be excited to see how good I feel, because let me tell you, I'm on some kind of natural high at the moment.

Life is suddenly in 3D! I have a lot of giddy, giggly energy. I can dance around the room and make Gary laugh. I can be my goofy, silly, immature self and jump on the bed without that cumbersome P.D. catheter! I did some lovely yoga and breathing last night when Gary was out and I felt so liberated, so free from constraints, tiredness, apathy. I felt really connected to my breathing, to the stillness after the rain, to the candlelight in the room, to the gratitude of the passing moments of life.

My eyes are sparkly. When did this go away? It's such a gradual process, kidney disease. It's hard to notice the signs of deterioration. I now recall some specific times when some changes occurred. I'd put them down to being 40, to losing my father - both in the same year. This was the year I started napping every day before going to my evening job. This was the year when I told my mother that I didn't ever go out except for work and necessities. That I liked to stay in, sewing and creating, listening to music and reading, lots of sleeping. That I liked to close the curtains on the day. She told me I was too young for that kind of attitude. But I lived in LA..a hub of chaos which didn't agree with me. I wanted to close the curtains on the hot, smoggy day and be in my cave of creation. Now I wonder: was this part of the disease too? This cocooning? I noticed a lot of cocooning after the dialysis. And I thought I'd have the same desire after the transplant, but it just isn't so. Voracious is the new word. I just want to be sure to balance it with that yoga feeling I had last night.

Day 22: A good hospital visit, at last!

Oh, I had such a good visit at the hospital today. There's something so gratifying about seeing a doctor you've seen before. Until now, I've seen so many different doctors - each one of them looking only at my chart for information. It can be frustrating. But today was liberating.

It was great to have confirmation that, due to my being a relatively young kidney transplant recipient, I am on a higher regime of drugs and therefore subject to more side effects and a much more complex system of drug self-administration. I have been feeling overwhelmed. All I needed was the recognition that it is indeed difficult.

The fact that I am able to care for myself to a large extent has resulted in the hospital designating the insulin shots to me - whereas, he said, with people who can't or won't do it, the glucose is largely left to its own devices for the relatively short duration of the high steroids. But that's a month's worth of toxicity. After all I've strived for, I just don't want that. I'm glad I can do things myself and it made me really take pride in the whole situation - something that always saves me in these crazy times.

One of my prednisone tablets (a strong corticosteroid that makes my blood sugar levels really high) was dropped today. Now I'm on 10mg per day instead of 15mg yesterday and 20mg a week ago. It's already alleviated the blood sugar levels - I have given myself no insulin injections yet today and my glucose levels have been fairly stable. And after the 27th of January, I will go down again to 5mg per day. I think it might work out after all that I won't need insulin, only tablets to help. Very exciting!