I went to visit two of my mother’s sisters today. Aunt R lives nearby. She’s 95 years old. In the past week or two, she’s started using a wheel chair because of back pain. She sleeps a lot. She has no short term memory and has difficulty hearing. Yet she’s cheerful and friendly with me when I visit and with the women who take care of her. She’s cooperative and likes to tell stories about her teenage and young adult years.
Aunt M is 92 years old. She lives about an hour away. She spends a lot of time in bed. She sleeps a lot. She has very little short term memory. She’s always happy to see me. She’s cooperative and polite with the staff of her nursing home. But she gets grumpy if someone tries to get her out of bed for anything other than a meal. I often get the impression that she’s given up on living.
It’s painful to be around them at this stage of their lives. Aunt R is perpetually confused about what’s going on. She was once very sharp, detail-oriented and independent. Aunt M used to love to go out and do things with her family and my family. It’s hard to see the decline.
I watch them and I wonder what it was like for people to see me in the past few years. Last autumn, on the Rocephin, I was starting to improve in drastic and visible ways. I had setbacks when I stopped it. In the past few months, I’ve once again started to seem normal to people who see me for a short time. I don’t struggle all the time anymore and can hold my own for a few hours. But before that, I can’t imagine what it was like for my family, friends and coworkers to see how weak, dependent, tired, ill and disabled I’d become. Some days, I have the urge to visit them all again and say, “See how much better I’m doing!” They don’t judge me (I hope) based on my health. Plus, I’ve still got a long way to go.
I’m terrified that this is merely a temporary respite from the grueling illness that will become active again in September.
I had a lemon ice this evening. It was fantastic. There is a place near where I live called the Lemon Ice King of Corona. Amazing ices made on site. So refreshing. So wonderful for a Sunday night in the summer. Mom and I watched people playing Bacci in the park as we ate our ices. Sometimes life is good.
Sunshine in my eyes…
I’m thinking about getting new sunglasses. I was in the car today again with a lot of sunlight. I started getting a severe headache. I’m thinking of the wraparound glasses that reduce glare, the kind they suggest for people who just had eye surgery. Otherwise it’s too agonizing to be in the sun in the summer.
A little more baby love
I printed some pictures to take to my aunts. Here is one of my favorites of me with my nephew.
Tonight is a Lyme disease treatment session. I want to get one in before I start increasing Bartonella. I’m only coiling my lower spine, not adding anything. I’ve decided that as long as I keep the Lyme at bay for the summer, I can save the nasty Herxes for the fall when I’m killing a lot with each session.
- Lyme, lower back, 5 minutes
- Babesia, liver, 10 minutes; ilium, 1 minute each side; knees/elbows, 1 minute
- Candida, abdomen, 10 minutes; chest, 2 minutes
- homeopathic support
- skin brushing
I had a night sweat last night. I think it was the usual severity, based on how wet my hair was. But this whole idea of wearing a running shirt to bed is working out quite well. I still wake up, but not drenched. And I don’t always have to change my shirt to go back to sleep.
I was awake but slow this morning after 9 hours of sleep. My hands and forearms hurt a lot. So did my calves and feet. Once I got moving, the pain partially subsided and was tolerable.
I was okay during part of the day. In the late afternoon, there was the light sensitivity headache. Yuck. I’ve got floaters in my vision. Then there is a lot of joint pain starting to sprout up: hips and knees, shoulders, neck and jaw, lower spine, fingers and toes.
And I’m exhausted after a full day.