2021: The Year in Review

Posted on by Astrid

Each year at the end of the year, I look back at the past year and do a review. Today, I’m doing one for 2021.

At the beginning of the year, we were all cautiously optimistic about the vaccine being the ticket out of the coronavirus pandemic. It wasn’t. I got my first shot in early February and my second shot a month later. In early December, I had my (first) booster shot. I’m pretty sure more are still to come.

At the end of 2020, I first had my one-on-one support approved. It took some time to figure out how the staff should best fill in the allocated hours. Initially, the manager wanted my husband to be clear on when he was going to have me home with him, so that my one-on-one hours could be canceled then. This wasn’t doable for my husband or me, so finally it was agreed that my hours would be filled in regardless.

For most of 2021, we had day activities at the home due to the pandemic. Thankfully, by September, the day center opened and the clients were mostly back to their pre-pandemic groups. I, however, was not. Thanks to my one-on-one, I was provided day activities in the home and this continues to be the case so far. There has been talk of me starting in a small group, but this isn’t doable for me right now or within the foreseeable future.

For the first half of the year, I struggled a lot with the battle inside my head between wanting to live more independently and wanting even more support. This led to a climax in mid-June, when the manager told me that more support is really not possible. I was in a crisis for about two weeks. Then I started my new medication, topiramate, which calmed some of the inner conflict. It, of course, helped that I was reassured that, regardless of my attempts to push staff away, I was going to keep my allocated one-on-one support hours at least until the end of December. And of course now they have been approved until December 2023.

Over the summer, when my topiramate started to kick in, I was able to be more creative than I’d been in a long while. I started polymer clay once again and have been able to enjoy this hobby ever since. Like I mentioned when I wrote down my hopes for 2021, I didn’t intend on doing it all independently and that’s still not one of my hopes.

Looking back at my hopes, I did pretty well on them for this year. See, I think it helps that I don’t call them resolutions or goals, ha.

Overall, this year was a pretty good one for me personally. Even in terms of COVID, it’s been as good as possible, in that I haven’t contracted the virus and neither has anyone else in my home. One of my staff tested positive recently and originally we were supposed to all get tested today. After conferring with the care agency’s pandemic team, this got canceled though. I may still get a lateral flow test later today just to be sure. Let’s hope I won’t end the year with COVID.

How has your 2021 been?

Superstitions

Posted on by Astrid

Today’s topic for Throwback Thursday is superstitions, amulets and charms. I had quite many growing up, but not most of the usual ones. Let me share.

My sister was born on Friday the 13th, so no-one in our family dare believe this to be an unlucky day. However, I had quite a few lucky and unlucky days particularly as a teen. Friday the 24th was unlucky, for example. The reason was the fact that on Friday, September 24, 1999, I had realized that I wasn’t going to fit in at mainstream high school and was most likely going to struggle through it all of the six years it lasted. I was determined to make school a success though, and indeed I graduated. I earned my diploma on another Friday the 24th, namely June 24, 2005. Maybe it wasn’t such an unlucky day after all.

Like I’ve said before, I believed particular dates to be lucky or unlucky too. November 2 was unlucky. Again, this was the date I landed in crisis, twice, both times on Fridays, in 2001 and 2007.

Like Friday the 13th, I didn’t hold any of the other usual superstitions either. I never struggled to walk under a ladder, to walk on cracks in the pavement and wasn’t worried when a black cat crossed my path. I did get an old horseshoe at a horse stable once and kept it. My father told me it was supposed to bring good luck, but I never hung it anywhere.

As a child, I did keep fortune-telling charms. I used to have a particular blue, glass stone with a flat and a curved side and used to ask it yes-or-no questions, then throw it. If it landed flat on its back, the answer was yes and if it landed curved side down, the answer was no. Of course, now I know it is far more likely to land flat on its back.

I also would make a wish if I was able to peel off a tangerine’s peel in one go. I know the traditional thing is about oranges, but I never ate those. Then when I’d pulled off the tangerine’s peel, the number of slices I would be able to keep together predicted how likely my wish was to come true.

Now that I’m an adult, I no longer hold many superstitions. I did have a long-standing belief for most of my adult life that I was in for bad luck eventually. This specifically involved the idea that, once I’d feel secure at a living place, I’d develop some serious illness and die. Over the past year, I’ve slowly been able to let go of this belief. My faith helps me in this respect too.

Are you superstitious?

A Productive Appointment With My Psychiatrist

Posted on by Astrid

I had an appointment with my psychiatrist today. Last week, I had already raised some issues relating to my medication with my nurse practitioner and asked to see the psychiatrist about them.

Among other things, I finally dared to ask for them to consider lowering my aripiprazole (Abilify) dose. I have been on this antipsychotic for nearly twelve years and on my current dose of 30mg, which is the max dose, for about five or six of those years. I have had the wish to lower my dosage for years, but was always asked to wait for a while to stabilize. Now that my one-on-one has been approved for the coming two years and I’m relatively stable, I thought further waiting would be senseless.

My psychiatrist today proposed to lower my dosage in steps of 5mg each, while remaining on a new dosage for three months. She claims that the first two weeks, I won’t see any effects of the lowering of my dosage so any change in behavior doesn’t count as a sign that my dose needs to be upped again. When I wrote in a Facebook group about my lowering my aripiprazole, I was met with surprise at the slow taper. Indeed, I’m not sure where my psychiatrist got the idea from that the first two weeks don’t count, since aripiprazole has a half-life of about 72 hours, not two weeks. However, since I don’t suffer with any major side effects, I don’t see why the slow taper would be bad.

My psychiatrist said that we won’t have a goal dosage in mind, so we’ll keep tapering until it’s no longer the right thing. Yes, even if this means I can do without aripiprazole altogether eventually. I was a little shocked when she mentioned the possibility that I might not need my aripiprazole at all at one point. Of course, given the slow taper, this will take like 18 months or so, but I don’t mind.

I won’t start my taper until next month, because first we decided to increase my topiramate (Topamax) by yet another 25mg in the evening. Then I’ll be taking 50mg in the evening and 25mg in the morning. This is still a pretty low dosage even for trauma-related symptoms. It is hoped that, by doing this, we’ll help reduce my night-time anxiety even more and I won’t need my PRN quetiapine (Seroquel) anymore. After all, that wasn’t helping with my anxiety really. I originally got my quetiapine when I was still experiencing a lot of overload-related irritability. Now it’s more anxiety and PTSD that’s causing me to feel strong distress, so topiramate may be a better fit. Of course, topiramate is a daily medication, but if it can prevent me experiencing significant distress, I’m willing to try it.

I do feel a little weird, in that I was always taught that medication isn’t a substitute for coping skills or support and at the same time that it’s either one or the other. I mean, even Dutch care funding regulations at least used to say that if someone was medicated for something, they no longer qualified for support in this particular area. My psychiatrist today called medication a “chemical nurse”, in that a nurse’s role is to help calm you down when in crisis and that’s what meds do too. Now that I have the best human support I can get, I think it’s time to figure out the best medication I can get too.

Lastly, we discussed my getting medication specifically in prep for dental treatment. I explained that, after getting seven cavities filled without anesthetic many years ago, I have pretty bad anxiety but it shows itself in freezing. We decided I could take lorazepam (Ativan) 2.5mg the morning before the procedure and then when leaving (the surgery is about a 45-minute drive away), I could take another 1mg. The psychiatrist said I could skip the 1mg if I was feeling really drowsy, but my staff said the dentist can deal with me even if I am.

Overall, I’m pretty satisfied with the results of this appointment. My nurse practitioner should have sent the prescription for the increased topiramate to the pharmacy and that should be filled next week.

Share Your World (December 27, 2021)

Posted on by Astrid

Oh my, can you believe we’ve officially started the last week of 2021? Not even the last full week? I seriously can’t believe how quickly time flies at the end of the year.

Today, I’m joining Share Your World or #SYW. I just discovered that Melanie ditched her domain, which was the reason I hadn’t seen her posts in over a month. Shame on me for not having found out before! This means I’m probably having to redo all my other links to her posts. However, now’s not the time to do this. Anyway, let’s get started. I don’t do #SYW that often, so for those who don’t know, it’s a meme where you get to ask four or five of Melanie’s weekly questions, plus share your gratitude. Here goes.

At 12 a.m. on December 31st/Jan 1st, what will you be doing? (use your own time zone please)
Probably sleep. I will be at the care facility for New Year’s and all celebrations here take place during the day or evening, including the (light) fireworks. There will not be any extra staff till 12AM. Of course, we do have two waking night staff, but it’s not like they’re going to party with me.

Is there a tradition you have for New Year’s Eve?
Usually we’ll eat “oliebollen”, which I was told last year are much like donuts but then the opposites, ie. the holes.

Do you have any hope or reason you find that next year will be better?
Yes. Like I said a couple of times before already, my one-on-one support got approved for the coming two years, so I won’t have to worry about losing my support for the entirety of 2022.

What’s the biggest personal lesson you learned during 2021?
To trust that, with God’s help, things will be okay in the end, I guess. I know COVID and many other of the world’s problems are likely here to stay for a while. I don’t want to dismiss other people’s problems by saying that for me, 2021 was a much better year than 2020. I however do trust that, ultimately, God will work things out for the better.

GRATITUDE SECTION

Describe in 1-3 words how you feel going into 2022
Hopeful, joyous, grateful.

Am I Good Enough for Jesus?

Posted on by Astrid

It’s the day after Christmas. Boxing day in the UK. Second Christmas in the Netherlands. I spent Christmas with my in-laws having a good time, then went to my and my husband’s house in Lobith. On our way from my in-laws to our house, my husband and I talked about faith. I noticed while talking with him that I’m still struggling with my faith. It isn’t so much that I don’t believe in God or that I, personally, don’t believe Jesus is my savior, but how can I be sure I’m saved if we’re saved by grace alone? How can anyone be sure?

Today, I decided to look up some Christian journaling prompts to get me started on my reflections on faith. The first one I came across asked us to write about our relationship with God. Is He a friend, a coach, a father or perhaps merely an acquaintance? I’d say, He’s a Father, but I’m not sure he’s the loving, caring father most children hopefully have.

It doesn’t help that I didn’t really grow up in a nurturing earthly family. I have hardly known love. Of course, I know rationally that my husband loves me, but when it comes to faith, I still sometimes believe that if he truly knew me, he’d believe I’d go to hell.

And God truly knows me. He knows I bought The Artist’s Way, which turns out to be pretty New Age’ish. He knows I used a censored swear word this afternoon, which no-one else knows because no-one was around. He knows I worried last Friday about the holiday money I usually get from my parents each year. God knows my heart, mind and soul. And I’m pretty sure that, like my earthly father, He’s going to judge me pretty harshly for it. And, whereas my earthly father could give me a beating and send me to my room for an hour or two, God could send me to hell for all of eternity.

And of course I do believe in Jesus. I admit I need him more than I need anything. But if faith doesn’t change me – and I’ve believed in Jesus for a year now -, isn’t it completely invalid? I do see a change in myself over the past year, but it’s so small I’m not sure it’s enough. Am I good enough for Jesus yet? I pray that I will be.

God, please show me Your will and help me be obedient to it. Help me let go of those things which are undesirable in Your view and to embrace those things that are desirable. Please help me move closer to You. In Jesus name, I pray, Amen.

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

My Plans for This Christmas

Posted on by Astrid

Hi everyone on this rainy Thursday evening, two days before Christmas. One of Mama Kat’s writing prompts for this week is to share your plans for this holiday season. For the first time ever, I’m not just dreading the fuss. I mean, last year, I’d just become a Christian and was kind of looking forward to the spiritual aspect of Christmas, but not really either, as I knew I still had a long walk to go in my faith. I’m about the same this year. That being said, with respect to the celebrations with family, I was still dreading those last year. This year, I’m more neutral about them, even slightly positive. Let me share my plans.

Tomorrow, we’re supposed to have day activities like normal. We had our Christmas lunch today and I got half of my Christmas hamper. The other half, my staff will bring tomorrow, as it hadn’t arrived when she left to bring the first half to me yet. The half that arrived today contained mostly treats. The other half, she said, are two silicone molds for my polymer clay. I’m really looking forward to receiving those.

Tomorrow evening, I initially thought we were going to get food delivered. Thankfully, though we entered full lockdown last week, restaurants are open for takeaway or delivery. I was not yet sure which restaurant or snack corner we would be ordering from. Then this evening I found out my staff had planned to prepare a cassrole. Not something I enjoy. I contemplated ordering delivery just for myself. Then after some texting between several staff, it was decided to change the dinner plans for Friday, Saturday and Sunday around and we’re going to have fries and chicken legs.

On Saturday at around 2PM, a ParaTransit taxi is going to arrive to take me to my in-laws. There, I, my husband and my oldest sister-in-law will have dinner. My husband teased me about the food we’d have, because I’m quite a picky eater. Really though, we’re going to have chicken roulade, which I love.

My husband is likely going to read from the Bible at dinnertime. Neither his parents nor his sister are religious, but they tolerate him reading the Bible. I loved him reading Isaiah’s prophecy of Jesus’ coming, as well as the Christmas story, last year.

I may stay at my in-laws for a while after dinner and then leave for my and my husband’s house in Lobith, where we will stay for the night.

Sunday morning, which is called Second Christmas here in the Netherlands, we may watch Hour of Power together. Thinking of which, I remember now there’ll be a show on Saturday too, but I don’t know whether it’ll be in the morning or evening.

I will go back to the care facility sometime Sunday afternoon. Sunday evening, we’re going to have Chinese takeaway. This was originally planned for Saturday, but it was my favorite out of the three Christmas meals for the weekend, so I’m so happy the meal plan got shifted.

We’ll likely have more than enough treats to last us through to February, honestly. At least, I got three packages of my favorite Christmas cookies from one of my staff yesterday and another one in my Christmas hamper. That plus chocolate, winegums and Pringles. Yum, but if I’m not careful, I’m going to weigh 200 pounds by the time I’m done with them. Then again, as they say, you don’t become fat between Christmas and New Year’s but between New Year’s and Christmas. In other words, it’s snacking all year round that really leads to lasting weight gain. This being the case, I am happy this holiday season, though it is indeed part about the food, is also about faith and family.

As for my own family, both my sister and her family and my parents sent me a Christmas card. However, I haven’t been at my parents’ house in years and they didn’t invite me. If they do want to see me, I think the spring is a more appropriate time.

What are your plans for the upcoming holidays?

Mama’s Losin’ It

Autism Diagnosis and Rediagnosis: Do Labels Matter?

Posted on by Astrid

Earlier today, I saw a blog post about adjusting to a late autism diagnosis. The author didn’t receive her diagnosis till her mature years, while I was 20 when first diagnosed as autistic. Still, I could relate to some of the things she discusses.

Particularly, I related to the fact that diagnosis changed my perspective in quite a radical way. I was no longer just a bad, difficult person. I was autistic. Always had been.

As regular readers of my blog might know, I have had multiple autism assessments since my first diagnosis in 2007. The reason for this is complicated and mostly related to the fact that professionals kept questioning my diagnosis and wanting further testing. At one point, the records of my most extensive assessment disappeared due to a change of electronic record keeping systems and this led to my then psychologist jumping at the opportunity and removing my diagnosis altogether.

Most autism support groups online are open to self-diagnosed individuals. The main one I was part of at the time, however, I found out, was not. I was heavily criticized and distrusted by the other members after I’d lost my diagnosis. They thought my psychologist had finally unmasked me as someone with a personality disorder rather than autism.

Of course, I also needed an autism diagnosis in order to get the right support. With just borderline and dependent personality disorder on my file, I would be treated much differently by the mental health agency than with autism as my diagnosis. I wouldn’t be able to get support from the intellectual disability services agency either. Thankfully, I got my autism diagnosis back.

Interestingly, the psychologist who removed my autism diagnosis, always said that diagnoses didn’t matter, yet she was the one constantly throwing around new diagnostic labels at me. In a sense, an official diagnosis doesn’t matter, in that self-diagnosis is valid too, at least outside of the need for services. For instance, I self-identify with a dissociative disorder even though I haven’t had this official diagnosis in over eight years. However, to say that labels don’t matter and that all that matters are the symptoms, as she said, is quite frankly wrong. Especially in the context of the need for services.

After all, I am the same person with the same symptoms whether I am diagnosed as autistic or as having borderline and dependent personality disorder. The treatment approach is quite different though. With autism, I need structure and a fair amount of support. With BPD and DPD, I mostly need to be taught to self-regulate by being made to take responsibility. Of course, in an ideal society, services aren’t rigidly based on someone’s diagnosis, but in our current healthcare system, they are. Because of this, I am so glad I currently have a well-established autism diagnosis and that my current support team at least don’t question it.

Christmas Crafting!

Posted on by Astrid

I have a confession to make: this is my first year ever actually doing Christmas decorations. I used to like them as a child. Particularly though, I liked fidgeting with the little wooden snowmen and angels and Santas in the Christmas tree.

When I left my parental home to go into independence training, it never occurred to me to decorate for the holidays. Besides, I was back with my parents over Christmas. I never celebrated Christmas in my independent living student accommodation and once in the mental hospital, I hated decorations with a passion. During my first year there, I even ripped them all off. I don’t think my husband cared much for decorations during the years I lived with him either. Then when I went into the care facility, for the first two years, apparently I wasn’t feeling stable enough to decorate my room. In fact, I never quite considered it “my room”. Now I sort of do. I consider that a major win, since it means I’m beginning to feel safe in the care facility. Maybe the fact that I started decorating for Christmas, has some symbolic meaning.

I don’t have a lot of decorations. I have a store-bought, simple, ready-made Christmas tree and a couple of smaller decorations here and there. The point is I have something though.

In addition, this is probably the first year I’ve genuinely crafted something for Christmas too. I mean, during the year I did card making (around eight to nine years ago), I did create Christmas cards too, but these were so ugly a five-year-old could have made them. This year, I actually added my very own home-crafted piece to my Christmas decor.

First, several weeks ago, I created a cookie cutter polymer clay Christmas tree charm. I fully intended on finishing it off with gold Fimo Liquid after adding the balls, but decided after it got out of the oven that I didn’t really like the way it turned out after all. I don’t have a picture for this reason.

Then, last week, I found out how to make an actual three-dimensional Christmas tree. I made it using the same color (Fimo soft Emerald) I’d used for the cookie cutter charm. It’s a shame Fimo doesn’t offer Christmas tree green! I added two colors of balls (Indian Red and Metallic Gold) and added a Metallic Gold star for its top.

Later that week, one of my staff told me about a project she’d been working on in which she’d used a metal ring, a part of a tree trunk, a string of lights and some washi tape to create a Christmas decoration. I thought to myself, how fun would it be to glue my polymer clay Christmas tree onto the tree trunk and work from there.

On Friday, fully having the tree trunk and metal ring project in mind, I created a polymer clay snowman too. That was a bit harder, because it had to be smaller than the Christmas tree and of course the snowman includes more intricate features.

On Saturday, when the staff who’d talked about the tree trunk project came by, she showed me the tree trunk. I think here’s where my concept development is a bit lacking, as I had absolutely no idea how huge a tree trunk would be. In my mind, I had imagined a small piece of wood, but it was the actual trunk of an actual, large tree. Yes, she’d said a tree trunk, right? Needless to say my Christmas tree, which isn’t even 10cm high or 5cm wide, would be invisible when used on this trunk.

Instead of the trunk, we decided to use a small piece of cardboard to stick the Christmas tree and snowman onto. I am not sure how well they will remain secured, as I’ve heard mixed messages about glue and polymer clay. The fake snow we used to spread around the tree and snowman, also hardly stuck at all, but for now, it’s in its place.

We decided to use a much smaller ring than the one my staff had had in mind, because of course the large ring would again drown out my polymer clay sculptures. Since the string of lights was meant for the large ring, we couldn’t use that, but we could use some mini Christmas balls and washi tape.

I couldn’t do much in creating this final project, as most of the parts had to be glued together using a glue gun, but I don’t mind. I like that I at least did the polymer clay crafting.

Do you usually do any Christmas-related crafting?

Linking up with Inspire Me Monday and #LifeThisWeek.

#WeekendCoffeeShare (December 18, 2021)

Posted on by Astrid

Hi everyone on this cloudy Saturday afternoon. It’s been a few weeks since I joined in with #WeekendCoffeeShare, so I thought I’d link up again. As I’m starting this post, I haven’t yet had my afternoon coffee. I’m going to take a break for that when I finish this paragraph, so if you’d like a cup yourself, I can get you one too. We have an assortment of cookies and may still have a few mini Mars candy bars left too. Let’s have a cup of coffee and let’s talk.

If we were having coffee, first I’d tell you I had a good talk with the behavior specialist on Monday. We discussed a few things, including my desire to be made aware of the contents of the paperwork that went to the authorities deciding on my one-on-one. Those visiting just for the Coffee Share won’t know this, but it got approved for two more years to come, yay! However, I’d still like to know what was said about me, just because it’s about me.

We also discussed my food issues, for which a referral has finally been made to the dietitian. I really hope the dietitian can help me get some clarity on what (not) to eat during the day, because currently every opportunity to eat is an opportunity for inner conflict and chaos. Finally, we discussed my wish for a physical day planner using Braille-labeled activity cards to choose from.

If we were having coffee, I’d tell you that the blindness agency came by on Thursday to lend us a Braille label writer and several pairs of colored NoIR filter glasses (special sunglasses for those with low vision). I will be trying out the sunglasses over the coming weeks and will be using the label writer to type up the aforementioned activity cards.

If we were having coffee, I’d moan about my adaptive footwear again. Shoe Guy finally decided my orthopedic shoes aren’t fitting and can’t be made fitting, so he’s going to make me new ones all over again. He finally brought back my new walking shoes, that my husband bought me a few months ago. Now though, my left arch support insole got a bump in it that I can’t get out of it. Bottom line: I still can’t walk comfortably! Ugh!

If we were having coffee, I’d end on a positive note by telling you about all the creative work I’ve been doing over the past couple of days. I made some lovely polymer clay charms on Thursday based on tutorials I saw on YouTube. Can you guess what the below charm is supposed to be? Facebook’s automatic alt text guessed it correctly!

I also made a Christmas tree and snowman out of polymer clay. This evening, I’m going to add both to a larger mixed media Christmas ornament. Lastly, I finally decided to save my scrap clay rather than throw it away. I made some randomly-colored beads out of it yesterday.

How have you been?