saturday
Saturday was a damp and dark day, a not ideal day for Jess and Todd’s visit. But hey, what can you do? This is the rain forest.
I slept poorly Friday night, and I was up early yesterday morning. I was up and about just before 5:00 am. I idled away a lot of time trying to figure out how to access the government of BC website. Safari kept telling me that it could not access the site, so I switched to Chrome. In the end, I discovered I must go to Nanaimo and to Services BC to get a device that acts as a security pass for accessing my medical records. I was trying to see the results for Special Authority applications. That’s where I might see my application for the biomed.
I spent time tidying in the morning, and then it was lunch time, so I did not set myself down with Margaret Visser until early afternoon. But I didn’t stick her. The rain stopped, so I went outside to add some Deer fencing to surround the new Skimmia that I planted. Skimmia is a treasure. The front of my house faces North, so it never gets a second of sunshine. However, I have a lovely border of Skimmia lining my front wall, facing the street, and it adds so, so much to the view of the house to have it bordered with lovely green luscious plants with bright red berries. Skimmia has no use for sunshine.
By 2:00 o’clock, I was getting antsy. I was so keen to see Jess and Todd, but they couldn’t leave Victoria until 1:00. Sahara, their daughter, is severely disabled and they must arrange for highly competent caregivers to look after her when they travel. Hence, the late delay in departure. I expected them around 4:00.
A new favourite ‘toy’ is ChatGPT. I used the AI program to create the image above of me as a doll in an ‘identity’ doll box. It’s so much fun to play on this site and create images. I used to ‘play’ in Photoshop all the time, but it’s too expensive to rent for just playing. I could afford it when I was working and using it for work all the time. Chat, though, is very satisfying to play with.
Jess and Todd arrived just past four. They came in, got settled, I served Prosecco and Beer to them (I had Diet Coke) and we talked till it was time to go to Woodfire for dinner. We had a ball! Sharon, the owner, came by for a lovely long chat and we ate a lot of food. Jess and Todd treated me.
We came home to eat the meringue cake I’d made, and it was a monster hit. Todds favourite flavour is lemon, and the cake was filled with lemon curd. As soon as he had eaten his cake, he went to bed just prior to 9:30, but Jess and I stayed up talking until midnight.
sunday
I was up at five to light the fire, feed the pets, and tidy up before they arose. When Todd got up, he came with me to walk Sheba so that I could leave her at home when we all left for the golf course for breakfast. I wanted them to experience true Gabriola life, so breakfast at the golf course was a treat and a hit. It is gloriously beautiful to look out on the lake and the greens as we ate, and there were lots if people there I knew.
They left to go home from the course, and I came home to take some of the remaining cake to Pete and Ali, and they gave me cuttings for my garden. When I got home, I put the cuttings in the shade, and Sheba and I went for a walk in the welcome warm sunshine of the afternoon. Sunday was a much nicer day than was Saturday.
We went to Ricki Ave. trail, but she refused to walk, so we went to Rollo Park where she was whining with excitement to play ball. So, we played fetch (which is far, far easier on prednisone) and we came home under spectacular skies for me to have a spa and then to plant some of the cuttings that Pete gave me earlier in the day. Once done, I was heaving, not breathing, and so I called it a day. After all, it was My Day!
One thing that came up, was big. Todd’s dad died about a month ago. He’d told me over the phone, and I expressed my condolences. But we started talking about his widow who has had to surrender her legal powers to Todd because she gave a scammer an awful lot of money and refused to believe it was a scam no matter what she was told—even by the police.
In the context of the conversation, it came up that Todd’s father died of pulmonary fibrosis. As with my friend Jay, a close buddy here on the island, he had idiopathic fibrosis—no cause could be identified. My case of fibrosis is due to asthma. My good friend Bruce had two nephews who were born with cystic fibrosis. I’m rather astonished to put all this together.
When I was back and forth with Sam, one thing that she said was that the key marker is ‘rate of decline.’ And mine, she said, has started to progress, so in a few more months-to-a-year, we’ll monitor your levels and get an idea of the rate of decline in data. And that information made me feel something I can’t name but it was a very strong feeling. Fear? Sadness? (I don’t think so. It’s a waste of time.) Sobriety, in the sense of ‘living to the fullest.’
It was sobering. I think it’s going to change how I think of myself. I’ve already been thinking about that because I’ve going through a stage of life, I think due to my problems with breathing. Plus, there’s my many neurological problems. I’m having to pour myself drinks, low in the glass, as I did once for years for a blind friend. Because I’m getting shaky.
I have a favourite cast iron frying pan, but the handle is short, and the pan is heavy, and I can barely use it. I have had two accidents with it now, so I am going to find someone to put a long sturdy wooden handle on it, into which can slip the old handle. A screw or bolt or whatever, can go through the wood passing through a large hole in the old handle.
I am starting to think of myself as elderly because for me, growing up around a lot of old people where Connie Tyrell went to live, I used the word ‘elderly’ for people who were old and incapacitated in some way, and/or weakness. That’s how I feel, and how I use words, but I don’t give a fuck what words apply, all that matters to me is keeping doing the things I do now: garden, walk Her Highness, have fires and good books/movies in the Winter.
I can do that.
But it feels like the fibrosis is a train ride, and I just got on. I drug for which Dr. Dorscheid is applying for funding slows the rate of decline. Dr. D. is activated (I love that he uses that word, instead of ‘worried’) by how suddenly and severely my disease came on. That’s a primary part of the pitch for funding of the biomed.
monday
Holiday day, and it’s very wet out there, but that’s fine with me. I think we’ll skip walking with our friends this morning. It’s just too dank. It’s going to be a slow, lovely day at Pinecone Park. A day to chill. No outside work, and all is in order inside.
I wrote a long conciliatory email to Chris and Frani, Jess’ parents. It was Frani who so viciously attacked me about FND being fake. I wrote it after a long talk with Jess and Todd about what happened. So far, no reply. I wonder if, and when, I’ll get one and what it might say. I suggested we have a chat to fix things up.
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