#WeekendCoffeeShare (April 10, 2022)

Posted on by Astrid

Hi everyone! I’m joining #WeekendCoffeeShare today. I just had a soft drink and a glass of water, but if you’d like a cup of coffee or tea, I’m pretty sure my staff can make you one too. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that a fellow client passed away on Wednesday. He had had COVID back in February, like most of us, but he didn’t fully recover. This client had been hospitalized several times during December and January because of seizures, but these finally seemed to be well under control. Unfortunately, COVID was the last straw. He had been on a feeding pump ever since he’d had COVID, but because he became increasingly uncomfortable and unresponsive, the doctor and staff decided to discontinue his feedings on Monday. I last saw him alive Monday evening. He actually lifted up his body, smiled and squealed with delight upon hearing my voice. I made the conscious decision, having already been informed that he’d be dying soon, to keep this memory as my last memory of him while alive.

If we were having coffee, I’d share that I finally managed to craft another butterfly with the silicone mold I’d gotten for Christmas last December. I badly wanted to create a butterfly to go with the fellow client’s coffin, but wasn’t sure whether I could use the mold. However, other tutorials seemed even more complicated, so I eventually decided to give it a try. I did the wings in Fimo Effect color blue ice quartz. The body is pacific blue and the antennae are black.

If we were having coffee, I would also tell you that I have finally given in to the polymer clay color mixing thing and bought a precision kitchen scale. That plus a collection of 60 Fimo soft color recipes. Of course, I haven’t tried Fimo professional yet, but if I have to believe my staff, the colors I’ve mixed so far turn out gorgeous despite not being done with the true primary colors.

If we were having coffee, I’d tell you about the nationwide cerebral palsy day I went to yesterday. Of course, because the ParaTransit taxi had arrived at 8AM and we didn’t have to pick up any other passengers along the way, I was in Apeldoorn, where the day would be held, by 9AM. Thankfully, I had called my mother-in-law when I entered the taxi and she’d made sure to be there on time too.

The day started with a live-streamed lecture by Erik Scherder, a neuroscientist from Amsterdam. The message was quite similar to the one he’d conveyed in 2018 when I’d attended the cerebral palsy day too: that exerting yourself physically is needed to stimulate your overall neurological wellbeing. In 2018, the lecture had mostly been geared towards (young) adults, while yesterday it was more focused on children and their parents.

I attended two workshops during the day. One was on aging with cerebral palsy, mostly geared towards those age 40+, so I was a little outside of the scope, but I could relate (sad as it may be) to some of the increasing discomfort that older adults with CP face. The other was a yoga class.

As regular readers of my blog might know, I am not 100% sure I even have cerebral palsy, in that my parents never told me and, by the time I was an adult, things got so overshadowed with other diagnoses it’s unclear. For this reason, I felt validated knowing that I appeared not to be the most mildly affected person, strange as this may seem. In fact, during the yoga class, we had to loosen up our muscles and my mother-in-law told me to loosen up. Someone else half-joked: “That’s about the hardest thing to tell a spastic.” That made me feel good.

How have you been?

Artistic As Always #WotW

Posted on by Astrid

Hi everyone this Christmas Eve. How are you all doing? I’m doing pretty well. I’m joining Word of the Week again with a phrase (as almost always) and (again as almost always) my phrase of the week is related to my creative endeavors. I’m trying to come up with original phrases to say I’ve been crafting and creating a lot again. Today my phrase of the week is: Artistic As Always.

Truly, I don’t think a single day went by that I didn’t do any creative activity. I mean, I haven’t been blogging as often as I’d like to, but I did a lot of polymer clay work. I created several charms, including a planet, a flower and a rainbow, which is currently in the oven.

I also created my first polymer clay cane. A cane is a log of clay with a design on the inside, which you can then cut into slices to use as beads or to decorate a vase or whatever. I decided to do a flower cane and to make the slices into beads.

I will combine them, some yellow beads I made today that are also in the oven and a flower charm I made last week into a necklace for a woman who lives in the care home downstairs from mine, who is obsessed with necklaces. I still need to create lots of yellow beads, but the woman won’t have her birthday till the end of January.

I also got some crafty supplies in my Christmas hamper from the day center. They are two silicone molds. When I saw them, I did worry they’re a bit too shallow and detailed to use with polymer clay, as they’re officially for chocolate I think. I created a butterfly with one of the molds, which is now in the oven too.

I do worry that the butterfly will be some kind of omen though. You see, a fellow client went into hospital with recurring seizures yesterday and I’m worried sick that he’ll die. Please all pray that he’ll recover.

In addition to creating art itself, I’ve also been busy exploring the artistic community online. I joined several Facebook groups for neurodivergent creators and artists. For those not aware, the term “neurodivergent” refers to people with a neurological or mental health condition, such as autism, ADHD, bipolar disorder, etc. I initially worried the term “artist” or even “creative” was meant to include those creating visual artworks such as paintings or drawings only. Thankfully, I quickly found out the groups I am part of are inclusive of all creative outlets.

Lastly, inspired by a conversation in one of the FB groups, I decided to buy the books The Artist’s Way and The Artist’s Way Workbook. I haven’t yet been able to do anything in them, because I read books on my iPhone and using my Braille display only and, since the latest iOS update, these don’t work well together. That is, several times a day, seemingly at random, my Braille display will get stuck and the only way to get it unstuck is to reboot my iPhone. Not ideal when in the middle of a sentence in a book.

Overall, I’ve been really artistic over the past week. It’s been an intense week on other fronts too, but I may share more about that in a separate post.

Word of the Week linky

A Few Really Intense Days

Posted on by Astrid

Last Thursday was a weird day. I had to have my mammogram at 11:45AM at the hospital in the nearest city, which is half an hour’s drive away. We arrived about fifteen minutes early, which was good, since I still needed to get an ID label. Normally, the hospital give you an ID card with your first visit, but the receptionist said I should already have one since my ID was in their system. It probably was from when I had my abdominal X-ray at the outpatient clinic here in town, where apparently they don’t do ID cards. Oh well, he printed off a label and sent me on my way.

The mammogram people were running a bit late, so I got a little stressed. As it turned out, the person doing my mammogram was also a guy, which made me feel slightly uncomfortable. I tried to reassure myself that it’s his job. The mammogram was painful but thankfully it was over with quickly and I knew that it being painful said nothing about possible results.

In the evening, a male I initially didn’t recognize was in the care home. As it turned out, he was our GP. I was already distresssed from my schedule going to pieces due to the mammogram. It was getting even worse, because it turned out a fellow client had to go to the hospital. She had Down Syndrome with severe heart complications and the doctor suspected her heart was acting up again.

Later, it turned out she had RSV, a type of pneumonia that normally only affects babies and small children. She was tested for COVID too but was negative. As she was moved from cardiac care to the lung unit, she seemed to improve over Friday and Saturday, but wouldn’t be discharged until Monday as there are no doctors to do that over the weekend.

Thursday night, I myself started experiencing nausea and bad stomach pain and could hardly sleep. I vomited a few times in the morning, then was exhausted and lay in bed most of the late morning and early afternoon Friday. Thankfully, by Saturday, most of my symptoms were gone.

Then on Sunday morning, I got the news that the fellow client who’d gone into hospital Thursday evening, had passed away after all. My first thought was: “This won’t affect staffing, will it?” I quickly silenced those thoughts, knowing they are selfish. When the manager came by to support the staff, she did pay a quick visit to my room though and I asked her whether the vacant room would be filled quickly now. She reassured me that the staff and clients will have time to process this loss first.

I have been busy all of yesterday evening and today thinking about how to make something for the client out of polymer clay to go with her to the funeral. Yesterday, I initially made a butterfly using a mold, but I did it all wrong and it turned out rather rubbish. Then I decided to create a multicolor flower. However, one of the staff who knows the family’s wishes about the funeral etc., told me a butterfly would be especially fitting. So I stressed all day about how to make a butterfly using my rather inflexible mold. I might’ve found a way. My nurse practitioner, with whom I had an appointment this morning, did reassure me that I am well-intentioned regardless and that’s what matters.

This afternoon, I got the results of the mammogram. Thankfully, there are no abnormalities! At least that’s something to be happy about.