My Medication Musings: Topamax

Posted on by Astrid

Hi everyone. I had a med review today, which prompted me to write a post in my series discussing the various medications I’ve been prescribed. Today’s med review mostly concerned topiramate (Topamax), so I’ll write about that.

Topamax is an anticonvulsant usually prescribed for epilepsy. It has also shown effectiveness in treating migraines. How exactly it works is not known, but it does in these cases, although it’s not the first choice of treatment for either epilepsy or migraines.

I have neither epilepsy nor migraines. Besides, the highest dose of Topamax I ever took, 75mg/day, is far lower than the effective dose for these conditions. The reason I took Topamax is because it is also believed to help with PTSD-related nightmares and flashbacks. The way my psychiatrist explained it to me back in 2021, it might even lower my general distress level slightly. Well, it didn’t.

Topiramate can have significant side effects, including cognitive impairment, tingling in the hands and feet, and others. On 75mg, I experienced slight tingling, but I honestly don’t know whether I ever had any other side effects. I do have quite horrible tremors in my hands and legs, but these could be from any of my medications or from something unrelated altogether, although my doctor didn’t say what.

I, after some tweaking, eventually settled on a dose of 25mg twice daily. I never really questioned its effectiveness until I was wanting to taper another medication, Abilify, about two months ago and my prescribing physician and I reviewed all of my current psych meds. I said that none of my meds except for my antidepressant, Celexa, seemed particularly effective. The doctor then decided I could discontinue my morning dose of Topamax.

Today, I had a review. Though I have been a bit more distressed lately than usual, this could have many causes, including fellow clients being in distress more than usual too. Furthermore, I don’t experience an increase in nightmares or flashbacks. I admitted that most of my flashbacks are emotional, in the sense that I get dysregulated when triggered rather than having a visual reliving. I’m not sure whether these have increased.

When the doctor asked me what I wanted, I was clear: to discontinue my other 25mg of Topamax as soon as possible. This will happen in mid-August.

I am, honestly speaking, also guided by general principles in addition to personal experience: I learned about a year ago that a then recent systematic review had disproven the effectiveness of topiramate for PTSD-related symptoms.

Share Your World (July 22, 2024)

Posted on by Astrid

Hi everyone. I haven’t touched this blog in over a week, but thankfully have been doing okay. Today, I’m joining Share Your World. Here goes.

1. When you retire (or when you retired) do you have a picture of a small cottage with a white picket fence outside in a quiet village or something similar?
I honestly wasn’t fully sure at first what Di meant with this question. Do I have a picture? No. I have just one physical picture in my home and that one is of myself. Oh wait, she meant whether we envision ourselves living in a small cottage blah blah. Well, I for one don’t. I’m not technically retired, in that I’m not of retirement age and, since I never worked, I still consider that age (which by the time I reach it is probably mid-70s) the cut-off point for retirement. I don’t honestly envision myself ever living in a small cottage. In fact, I’m pretty sure I’ll live in a care home forever.

2. What do you associate with school dinners (apart from school of course)?
I envision another post in the making, as I can talk up a storm about school lunches. We didn’t get a cooked meal at my schools. Well, I did a few times when I’d be having after-school activities. I remember one such meal, a dish called “hete bliksem” in Dutch, which is basically a stew of mashed potatoes, apples and bacon. I detested it!

3. Can you play a musical instrument?
No, not at all. I took lessons learning to play keyboards at the training center for the blind when I was 19, but really didn’t get beyond the absolute basics. I have forgotten all of it since. Like I’ve also probably shared before, I took a few guitar lessons when at summer camp in Russia in 2000, but it took me the whole first lesson to figure out what the instructor, who spoke only English and Russian, meant by the “strings”.

4. What made you smile today?
My being able to teach one of the student staff here about care profiles and him appreciating my “lesson”. Care profiles are the care packages and associated budget each client in long-term care is allocated. I really loved perseverating on a topic I know a lot about without it personally affecting me at that very moment (because the student staff isn’t the one making decisions about my care).

Another thing that made me smile today is being able to describe the above image, which Di used for the optional gratitude section, directly from the web through my screen reader. I think I somewhat agree with the sentiment expressed in the quote too. At least, in my case, life may not always get better, but I do get to experience good days at every age.

#WeekendCoffeeShare (July 13, 2024)

Posted on by Astrid

Hi everyone. I’ve once again not been blogging, but this time it’s not because I’m struggling. Well, I still don’t feel the greatest, but the main reason I haven’t blogged is that something else has caught my attention. I’ll talk about it in a minute. Want a coffee? I’m joining #WeekendCoffeeShare once again. It’s past 10PM, so no coffee for me, but since this is a virtual get-together, you can have whatever you like. Let’s have a drink and let’s catch up.

First, if we were having coffee, I’d share about the weather. It’s been all over the place. On Tuesday, it was hot and humid with a daytime high of 30°C. Then we got this giant thunderstorm. Wednesday and Thursday were still okay with daytime temperatures of around 22°C. Yesterday though, it was not just raining all day, but it was freakin’ frigid with a daytime high of 16°C. Today is slightly better.

If we were having coffee, I’d tell you that, despite having my new Apple Watch wristband, I didn’t meet my movement goals each day this week. I blame the weather. I thankfully no longer care as much as I used to and can sit back and relax every now and again rather than having to keep up with my activity rings. I did try to walk each day (except for yesterday) and went swimming on Thursday too.

If we were having coffee, next I’d tell you that, yesterday, I went to an Eye Association meeting for young people who are blind or visually impaired (and a few who have an eye condition but can still see quite well). I originally thought I’d be too old to qualify as a “young person”, but the target age group is 18-45. I had a good time, but towards the end got quite overloaded. I had a near-meltdown when the taxi driver called me but I couldn’t hear him over the noise in the cafe in which the meeting was held. I for a bit thought I upset the entire group and wouldn’t be welcome anymore, but thankfully it wasn’t this bad according to several people.

If we were having coffee, lastly I’d tell you all about my latest obsession. I originally wanted to write a separate post about it on Thursday, but got distracted by the actual thing. It’s learning Spanish on Duolingo. I’m currently still at the early A1 level of proficiency. My spouse and mother-in-law have both been learning Spanish on this app for several months. What got me into it though was a conversation in a Facebook group about language learning. Some people said Duolingo isn’t always correct, but I’m not sure whether they were referring to a specific language. I can see why though in a way, as for example early on in the Spanish course, you’re learning the word “elegante”, which Duolingo claims translates to “elegant”. Now I’ve never heard an English-speaking person use the word “elegant” in everyday conversation. I honestly couldn’t care less though, as if I ever get to a point where I can actually talk in Spanish outside of the app, I’ll teach myself the finer details of conversation.

#WeekendCoffeeShare (July 6, 2024)

Posted on by Astrid

Hi everyone. Today, I’m joining #WeekendCoffeeShare. As I start typing my post, I’ve just had dinner, but I probably won’t be finished with my post until after my evening coffee, as I’ll take a break from writing for my evening activity time slot. In case I am able to offer you a virtual coffee – which I will anyway, since it’s virtual -, I will offer you a stroopwafel biscuit with it too. I bought those at the supermarket this afternoon, because the staff ordering groceries this week either forgot to order large cookies for the weekend or thought they’re bad for our health. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d moan about the weather. It’s been rainy and chilly most of the week with daytime temperatures barely reaching 20°C. On Wednesday, the daytime high in fact was as low as 16°C.

If we were having coffee, next I’d share that I tore my Apple Watch wristband in two last week. That is, I pulled a tear into it when putting it on once, then when trying to put it on once more thinking I could still use another hole, I tore the entire thing in two, thereby dropping my Apple Watch. Thankfully, it didn’t break, but I couldn’t use it for a couple of days because of having no wristband. I mean, the wristband that broke wasn’t the original one, but somehow I must’ve discarded part of the original, since I could only find half of it.

I initially tried to order a new wristband and screen protector online, but the Apple Store would only let me pay by credit card and, though I did manage to order a screen protector off Bol.com, it was delivered to my in-laws’ house and hadn’t been delivered there yet by the time my mother-in-law visited me on Tuesday. I finally decided to just give it a try and order a wristband at another store and have it delivered to the care home. Like I’ve said a few times, the care home does have its own postal code, but I was originally instructed to address mail to the main building and add my home as second address line. Bol.com won’t accept second address lines and so I always used to have them deliver to my in-laws. Not anymore, since the wristband, addressed to the care home, arrived promptly and so did the screen protector I ordered that evening. Now I’ll have two screen protectors once my spouse brings the one that’s lying around at my in-laws’, but who cares? I have a working Apple Watch at last!

If we were having coffee, I’d tell you that the fact that it was raining plus the fact that I didn’t have my Apple Watch meant I didn’t walk nearly as much over the past week as I usually do. On Monday, I got pretty frustrated, because a temp worker happened to be assigned my two-hour activity time slot three times this week. Granted, he’s a regular temp worker here, but I had not yet trusted him enough to do anything other than play games and go for medium-long walks. On Monday I was anticipating two hours of dice games because of the weather, but thankfully it stopped raining eventually and we could go for a short walk.

Then on Tuesday, he told one of my most trusted staff that he’d love to work with clay with me. On Monday, the way he’d suggested we work with clay, it sounded as though he was just rattling off my activity list and I don’t do clay with staff I don’t trust to show at least some interest in it. I mean, they don’t need to know anything about polymer clay or even crafts in general, but if they’re the type to just sit around playing on their phone, a complex activity like polymer clay isn’t for them and me to work on together.

So on Wednesday, I decided to take the plunge and make a unicorn with him. At first, I used Cernit, which was way too soft, so I eventually gave up and chose Fimo. He asked to take the finished unicorn home with him to show his children, which I was happy to allow him to after I’d taken a picture, since I have many unicorns anyway.

Polymer Clay Unicorn

If we were having coffee, I’d tell you I started tapering one of my medications yesterday. It’s not the medication I originally wanted to taper, which was my antipsychotic, aripiprazole (Abilify). Instead, the intellectual disability physician suggested I discontinue my morning dose of topiramate (Topamax), which was supposed to help against nightmares and flashbacks. So far, I’m not noticing any difference good or bad, but it’s still early days of course.

If we were having coffee, lastly I’d tell you all to come to my home tomorrow. No, not really, but we will have a barbecue here. The parents of one of my fellow clients organize it, so I decided to buy them some chocolate as a thank-you gift.

Parenting Advice From a Childfree Survivor of Childhood Trauma

Posted on by Astrid

Hi everyone. Today’s RagTag Daily Prompt is “parenting”. Since I’m currently recovering from meeting my parents for my birthday, I’m going to make a list of parenting advice my parents should’ve received. I realize their inability to love me unconditionally wasn’t unwillingness. In fact, the fear that I may have this same inability is one reason I’m childfree. This post is a random list and may come across a bit harsh, but so be it.

1. A family is not a business. It doesn’t have to be run efficiently. Yes, I understand you get impatient with your child’s struggles at times, but this isn’t their problem – it’s yours.

I was constantly shamed for needing too much help and my parents gave up on teaching me basic skills of daily living because I got frustrated and the task didn’t get done efficiently.

2. Challenging behavior does not make the child (especially young child) bad or manipulative. Behavior is communication, yes, but to search for hidden motives behind it, is actually quite arrogant.

I was told by my parents that, by age seven, I had come up with some idea to manipulate everyone into thinking I was different in all kinds of other ways besides blind because I didn’t accept my blindness. News flash: I am those other things.

3. Children are incredibly loyal to authority figures, be it their parents, teachers, or others. When you fight the school or healthcare system over something rather than trying to be cooperative, the child will experience a conflict of loyalty. This means that, just because they side with you eventually, it isn’t necessarily in their best interest.

My parents were constantly fighting the school over my needs, because the school denied my intelligence. Then again, my parents minimized my emotional difficulties. When an educational psychologist who saw both my intelligence and my emotional issues, nonetheless advised special education for me, my parents still weren’t happy even though they’d chosen this ed psych, because they were dead set on me being mainstreamed.

4. Your child is not an extension of your ego. For this reason, they do not have to follow an educational or career path you like. It isn’t their job to make up for your lost dreams.

See also above. From the time I was a young child on, it was clear that, by age eighteen, I’d live on my own and go to university. Interestingly, neither of my parents have a college degree and particularly my mother feels “dumb” for it even though she worked herself up to a management position that usually requires a college degree.

5. Your child doesn’t need to prove their value. They do not need to prove they were “worth raising” by being anything, be it independent, successful, or whatever. If you don’t want a disabled child, a child of a certain gender, or whatever, you shouldn’t have a child.

I have probably said this before, but my parents, particularly my father, seriously think that a child needs to prove they were worth raising by being successful in life as an adult. He didn’t mean me when he said this, “because you’re training for independent living”. Well, now that I’m in an institution with seven hours of one-on-one a day, he obviously does mean me, since the few times I’ve seen him since he’s barely acknowledged me.

6. Love your child unconditionally. This does not mean agreeing with every single decision they make, but it does mean being there for them when they need you. And this doesn’t end when they turn 21. With a few exceptions (an adult child becoming a criminal, for example), parenting is a lifelong commitment.

I am linking this post up with #WWWhimsy as well.

Gratitude List (June 30, 2024) #TToT

Posted on by Astrid

Hi everyone. Today, I’m doing a gratitude post. As usual, I’m linking it up with Ten Things of Thankful. I’m not in a good mood, but, as I usually say, that’s the best time to do gratitude posts, as it usually surprises me with how many things I can come up. Let’s go!

1. I am grateful for the weather. On Tuesday, Wednesday and Thursday, it was a little hot for my liking, but the temperatures setteld down eventually and today the daytime high was 23°C.

2. I am grateful I tolerate the heat pretty well. On those hotter days, when the daytime high was 30°C, everyone was complaining about being hot, but I handled it okay.

3. I am grateful the institution “townhouse” was finally opened last Tuesday. If I’m correct, construction finished over a year ago and I was half-joking that they’d built the thing without realizing budget cuts would mean there was no use for it. It will be used for leisure activities. I do wonder what will happen to the building these activities used to take place in, since that building too had extensive roof work done recently so I’m hoping they won’t just let that building rot.

4. I am grateful for cheesecake. I made it as a birthday treat for the entire home (both sides, so 20 clients plus staff) on Thursday. The staff I made it with, had never made a cake or pie before, but it was a definite success.

5. I am also grateful my order for buns at the local bakery went well. I was going to treat the entire home to hamburgers, but when I tried to order the buns online to be collected on Thursday, something on the payment website caused me to go paranoid and I canceled. My spouse calmed me down and I retried and was successful this time.

6. I am grateful the hamburgers were delicious! I had two of them.

7. Speaking of my birthday, I am grateful many of my fellow clients came by my room in the morning to wish me a happy birthday and to sing for me.

8. I am grateful for two cards from a former fellow client from the intensive support home. I by chance walked by there today and she called out to me and went inside to fetch the cards.

9. I am grateful for the gift voucher for one of my favorite clay stores I got from my sister. I am full of ideas of what to buy with it.

10. I am grateful for the music pillow I got from my spouse as a birthday present yesterday. It is connected to my iPhone via Bluetooth. After a bit of trial and error figuring out how it works, I slept like a log last night listening to one of my favorite calming music albums on Spotify.

What are you grateful for?

A Birthday Visit From My Sister and Her Family

Posted on by Astrid

Hi everyone. It’s really been forever since I last touched the blog. I won’t even promise I’ll try to make a habit out of posting more regularly, as I just don’t know when the motivation and inspiration strike again.

I originally wanted to link this post up to Leigha’s Sunny Sunday, then realized my post, though not overtly negative, wasn’t specifically positive either. I could say that yesterday was a literal sunny Sunday though, with lots of sunshine and daytime temps of 25°C. We’re supposed to get sunny weather at least up till this Thursday. I actually like it, but some people are already complaining that it’s too hot. Then last week they were complaining that we didn’t get a proper summer, as it was raining and the temperature usually didn’t get above 18°C.

Yesterday, my sister and her family (my brother-in-law and two nieces) came by for an early visit for my birthday. They arrived here shortly after 9AM, because they had wanted to visit the petting farm here on institution grounds and, according to the website, its opening hours were 9AM-10AM. When we arrived, we saw that it wouldn’t close till 11AM. Its size was a little disappointing to my sister and my nieces (particularly the older one) were tired so it was hard to keep their attention.

We also took a walk on grounds, during which my older niece went on the swings. I tried to push her, but just as my sister was about to take a picture, she jumped off. Both of my nieces also had a turn playing the outdoors xylophone. At one point, my youngest niece, who is two, played “Jingle Bells”. Couldn’t have been farther away from Christmas, but who cares?

The family gave me two unicorn-themed presents: a unicorn bag filled with shower products and a My Little Pony Unicorn which supposedly has candy-scented hair. I probably looked a bit disappointed when I opened the gifts and to be honest I was, but when I talked to my spouse later on I realized from my nieces’ perspectives these are really well thought out gifts. My sister also promised me a gift card for one of my favorite claying supplies stores, which will be really very much appreciated.

We had lunch in my room and backyard. I had ordered poppy seed and sesame seed buns, as well as muesli rolls, from the local bakery. These were delicious!

The family left at around 1PM. It was a good visit overall, although looking back I’m glad I didn’t have my spouse over as well, as that would’ve been too tiring.

Stabilize With Medicine

Posted on by Astrid

I talked to the support coordinator, the one who’s officially the other part of the home’s support coordinator but attends my meetings with the behavior specialist because I don’t get along with my support coordinator (my former male assigned staff). She had talked to the intellectual disability physician and I won’t have a meeting with her on tapering my medication until late September. The reason is the fact that there’s lots of temp workers at the care home during the summer months and they want me stable for now. Well guess what? If you want to wait for there to be few temp workers, you’d better wait for 2034, as I usually say. For those not aware, 2034 is my code word for never. It’s inspired by the book called 2034, which is about World War III.

I’m pretty angry about this whole thing, because well I already have mildly decreased kidney function as is. That is, I had mildly decreased kidney function a year ago at my last bloodwork, so who knows if it’s gotten worse now? And, as you might know, kidney disease doesn’t usually cause symptoms until it’s pretty advanced.

I don’t even mind waiting till September, except that this means seven months on my current med combo rather than the originally planned six weeks. And except that who knows what will get in the way in September? For all I know, the support coordinator might’ve gotten pregnant or sick or have left like the last one.

I honestly feel like they want to stabilize me with medicine rather than with the right support. And, for what it’s worth, I’m not very stable as is. Never was. Not with five different medications, many of which on high doses.

This post was written for John Holton’s Writer’s Workshop, for which one of the prompts is to pick a line from a song you like and use it as the title of your post. I picked the line “Stabilize with medicine”, which I’m not sure is a full line, from the song Serotonin by Girl in red. This song is rather explicit, so I hope John doesn’t mind me sharing it in his challenge.

My Current Night-Time Routine

Posted on by Astrid

Hi everyone. I totally forgot about Writer’s Workshop this week, even though there are several prompts that appeal to me. I might just write another post tomorrow about another prompt, but tonight, I’m talking about my bedtime routine. Oh wait, I wrote a post about that already in 2022. Reading it makes me miss Raalte so much… even my night-time routine was better. Oh well, here’s my current night-time routine.

My night-time routine starts at 8PM with my getting into my nightwear. Even though this is early, I’m the last of my care home to get dressed into my nightwear. I also get my last round of meds at 8PM, which thankfully doesn’t include sleeping pills. The one time I took a sleeping pill while here, I had to take it at 9PM, which is still very early for me.

At 8:45PM, I usually get a small snack or a bit of fruit, because like I said I go to bed late and I’d feel hungry if my last food of the day (except for a biscuit at evening coffee time) was dinner at 5PM. Then at 9:30PM I brush my teeth, my staff lock my door that leads to the backyard and turn off my lights. Since I’m blind, I can function without light and, if the staff don’t turn off the light for me, I might forget or be bothered by the light if it’s set really bright, and I don’t know how the switch works.

Once I’m ready for bed, I turn off my computer and check the battery status of my iPhone. I sometimes forget to charge my Apple Watch before bedtime and then I put it on the charger for a few minutes to at least get a bit of power to last it through the night. Depending on the battery status of my iPhone and my mood, I might turn on relaxing music either for an hour or throughout the night.

I take off my slippers and usually my socks (except in the freezing depth of winter, then I leave my socks on). I have a weighted blanket that I lie under year-round. And no, it isn’t exceptionally hot in summer. I also fetch two specific stuffed animals: the lemur will have its tail across my stomach and the dolphin I will hold in my arms. I have about five more soft toys in my bed, but these usually just lie around my pillow.

I can sleep in all kinds of positions depending on my mood, the temperature in my room, etc. I usually have the headboard of my bed turned up pretty high. When I can’t sleep, I also turn the other end up. Yes, I know, it sounds weird. I am so grateful for my adjustable bed though. It isn’t a given, since just after I’d gotten this one in like 2021, the higher-ups in my care agency decided that people who weren’t severely physically disabled, didn’t qualify for adjustable beds. They didn’t take away mine though, thank goodness.

Polymer Clay Makes Me Smile #WeeklySmile

Posted on by Astrid

Hi everyone. I’m still struggling with attachment issues and, to make matters worse, my assigned staff went on sick leave just after I told her how intensely I was struggling. I can’t shake the thought that it’s my fault, no matter how many times the other staff say that it isn’t. I do try to focus on the positive and stay as active as I can be though. Today, I’m participating in Trent’s #WeeklySmile. I’m also joining in, a day late, with Sunny Sunday. That way, I’m spreading the word about these two positive prompts while sharing things that made me smile.

Well, most of the things that made me smile over the weekend have to do with polymer clay. First, on Saturday, I started on a bunch of earrings that I am not 100% sure with what to do with them yet. Currently, they’re mostly just green cutter earrings (or really earrings-to-be, as I haven’t added the findings yet) with no design or whatever, but it was fun working with my cutters anyway.

One thing I did discover today while trying to finish one pair of earings, is that you can actually sand the top of earrings, that is, the side that will be visible when wearing them. I actually achieved great results sanding a pair of earrings with finer sandpaper (starting at 400 grit then 600 then 800 then 1000). Until now, I always thought that the side with the design on was pretty much as is, because you’d sand off the design. Granted, my trial pair were just green with no design, but my next pair will have a design on them.

The next thing that made me smile is discovering yet another great shop for clay cutters, texture rollers, silkscreens, etc. Another thing that made me smile was reading up on some simple earring projects on one shop’s website. I honestly think I’d love to try these out. It’s my birthday in a little over three weeks, so I really hope I’ll get some new things from one of those sites.

I really should get some display materials soon, as I don’t feel comfortable showing my earrings while wearing them myself and some of them are gifts too.

This new hyperfixation really makes me so excited. It’s part of polymer clay in general, of course, which I’m into already. This means I feel less like a failure if this thing doesn’t work out. At least it means only part of a hobby isn’t suitable for me. But I hope it is.