Moaning About My Meds

It’s 8:30PM and I’m probably going to bed before 10PM tonight. Since upping my topiramate (Topamax) a week ago, I’ve been more sleepy earlier at night and consequently going to bed sometimes by as early as 9PM or even earlier. Unfortunately, the quality of my sleep doesn’t seem to be better.

Last night, I had a horrible dream in which my staff were chattering among themselves and all the while I was trying to get their attention because I was anxious, but to no avail. That’s how I’ve been feeling ever since upping my medication: I am still anxious, but too drowsy to react to it. In fact, I’m not even 100% sure my experience last night was completely in my dreams, because, when I awoke, I couldn’t get to the level of alertness necessary to press the call button.

I don’t really mind the drowsiness as much. Or the tingling in my fingers and toes, which I’ve started to experience since increasing my topiramate dosage too. But the medication does have to work for my hypervigilance. And hypervigilance is not just an outer reactivity, or is it?

My assigned home staff did say yesterday that she judges from the staff’s reporting that I’m calmer, because I come calling out for help less at the times I’m not having my one-on-one. That comment triggered me intensely, because it made me think I’m supposed to take my topiramate so that I don’t ask for help outside of my assigned support hours. I’m reminded of my psychiatrist’s comment about meds as a “chemical nurse” again, something I now don’t see as quite as validating a statement.

This evening, I did E-mail my nurse practitioner my concerns. Of course, the topiramate’s positive effects might still need time to kick in, but if they don’t, I’d rather go back to my old dose. Which, of course, means we will need to find me a different PRN medication or something for when I go into crisis. It also means we’ll need to postpone my aripiprazole (Abilify) taper. Honestly though, I don’t really care about those.

#WeekendCoffeeShare (January 14, 2022)

Hi everyone on this Friday afternoon. I’m joining #WeekendCoffeeShare. I just had a glass of water and am going to have another one in half an hour or so. Maybe I’m going to ask for a Senseo or treat myself to a Dubbelfrisss, my favorite soft drink. I’m afraid we don’t have the diet variety though. Can I pour you a drink? Let’s have a cup of something and let’s chat.

If we were having coffee, first I’d share that it’s not as cold as it was last week, but it’s still too cold for my liking. Daytime temps rose to about 7°C most of this week. I did go on one longer walk yesterday, to the supermarket to buy a card for my father. He’ll celebrate his 73rd birthday tomorrow. We also bought some veggies. Oh, and a croissant, because I felt like treating myself. I had just one for lunch instead of bread though. I just looked up how many calories are in one croissant and that’s about as much as in two slices of bread without toppings. Of course, bread contains less fat and sugar and more fiber, but so what?

If we were having coffee, I would go on to share about my dietitian’s appt this morning. It went pretty well. She didn’t admonish me for not wanting to lose the 13kg I need to lose to be at a healthy BMI. I do want to lose the 1.5kg I need to lose to no longer be obese though. More importantly, I want to eat relatively healthily and hopefully quiet the inner conflict about food.

The dietitian gave me some recommendations for healthy meal choices for breakfast and lunch. For example, she said I can have salad for lunch with croutons and a little chicken, tuna or salmon (that last one I don’t really like) occasionally rather than bread. I do need to make sure the staff take care of portion sizes, of course, because I’m pretty sure they’d otherwise throw the entire can of tuna into my salad. For breakfast, I am still allowed yoghurt with muesli, just not the crunchy kind. And thankfully, the muesli doesn’t need to be plain, it can include nuts or raisins or the like.

I did share my disappointment with her at only having lost 0.5kg over the past week when I stepped on the scale yesterday. The dietitian said that this is a pretty great result though.

If we were having coffee, lastly I would tell you I got my benefits payment slip last Monday and am grateful to report I will still get enough money that I can still spend some on fun things like polymer clay supplies or the like. I don’t know whether I shared this in my coffee share posts before, but my long-term care copay will automatically be withheld from my benefits. The copay is income-dependent and, because I’m married, my husband’s income is counted too. Then again, because I’m married, I do get to pay the so-called “low” copay because the government does take into account the responsibility I have for contributing to his household expenses too.

The copay is calculated based on our combined income from two years back, so 2020 for this year. Because my husband earned more money in 2020 than in 2019 and had a lot of tax deductibles in 2019, I was expecting a higher copay by at least €100 a month, but fearing it might be as much as €200 a month. Then again, I was hoping my benefits would also be raised a little. Long story short, my net income was cut by €82 a month. That’s a lot. I realize some people won’t be able to handle this, particularly people on benefits. I am so intensely grateful that I am relatively well off.

How have you been?

#WeekendCoffeeShare (January 7, 2022)

Hi everyone on this first Friday of January, 2022. Today, I’m joining #WeekendCoffeeShare. I’m right between my dinner and my evening coffee, but if you’d like a drink, I’m sure my staff can make you a Senseo or a cup of tea, pour you a glass of juice or offer you a soft drink. Let’s catch up.

If we were having coffee, I’d start off by saying that the weather is all over the place right now. Sometimes, it’s raining or even snowing, while at other times, the sun is shining. It’s too cold for a walk though, so I’ve stayed indoors all day and most of the week. Last night, despite the heating being on and all windows being closed, I was feeling quite cold. Okay, I can feel cold in the middle of summer sometimes. That’s just me, I guess.

If we were having coffee, I’d also share about my new food plan. Like I shared before, my hope is to get to a healthier, less stress-inducing diet this year. The dietitian got back to my staff on Tuesday with a healthy food plan. It’s a standard basic food plan I’m sure, as for instance it allowed for an artificial sweetener in my coffee even though I’ve been drinking my coffee black for years.

I have been trying to stick to the food plan ever since. On Wednesday, I did have my crunchy muesli for breakfast, because my staff had already prepared it. Oh, I said this was something I wasn’t willing to give up, but I’m trying after all. Yesterday and today, I had two slices of bread with jam on them.

So far, it’s going okay, but I do find that I’m struggling to eat a variety of foods, as out of the healthy food choices, I only like a few things. Today, as an alternative to the bread with jam for lunch, I tried a toasted cheese and bell pepper sandwich. After all, the dietitian said that toasted sandwiches are a healthy choice as long as you don’t load them with more than one slice of cheese, ham or the like. You can, however, add veggies to taste.

If we were having coffee, I would share that, speaking of the food plan, I do look forward to getting chips this evening. I am so happy I am still allowed these on weekends.

If we were having coffee, I would tell you that I haven’t been too inspired on the crafty front lately. On Wednesday though, I did create a polymer clay dolphin charm. I used the Fimo soft color blue ice quartz for the body of the dolphin, white for its belly and black for its eyes.

Polymer Clay Dolphin Charm

If we were having coffee, lastly I would share that I did do a fair bit of reading lately. I started the latest Maggie Hartley foster care memoir, which came out as an eBook yesterday, right then. I’m now at 54% already. It doesn’t look like I’m going to finish any of the other books still on my currently-reading shelf on Goodreads though, but that’s okay.

How have you been?

A Productive Appointment With My Psychiatrist

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.

Artistic As Always #WotW

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

#WeekendCoffeeShare (December 18, 2021)

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?

Final Goodbyes

Yesterday, the fellow client who passed away was temporarily moved from the morgue into her room in the care home. I went to have a quick look yesterday evening. This morning, since I had finished my polymer clay butterfly and flower, I went back into her room and set them at her remembrance table next to her coffin. My assigned home staff was with me and asked me whether I wanted to touch her coffin, the things she had with her and even her hand. I did. Her hand was cold, which was the final reminder I needed that she’s really dead.

This afternoon, we went back into her room to pick a rose from her remembrance bouquet. We then went outside and stood in a circle with all other clients and staff who were close to this client and the family. Everyone laid a rose on the coffin. The client’s brother and our support coordinator spoke a few words and then the coffin was put into the funeral car and driven away. My assigned staff cried a few tears. I did feel sad too, but I couldn’t cry.

This is the first time I’ve ever been this close to a deceased person. I mean literally, as in touching her hand. When my maternal grandfather had died in 1995, I did pay him a quick visit at the funeral center, but was only able to have a quick look and with how little vision I had back then, I probably could hardly make out what he looked like. With my other grandparents, I didn’t ever get to see them while in their coffins. I had originally thought I wouldn’t benefit from visiting this client in her room because I couldn’t see her, but I actually did benefit. I was able to say my final goodbyes. Now I know she’s really gone.

Written for E.M.’s Random Word Prompt #7: “Remembrance”.

A Few Really Intense Days

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.

Polymer Clay #WotW

Hi all on this gloomy Saturday. I thought I’d join Word of the Week once again and my word for this week is “polymer clay”. After all, I’ve been working with this medium all week. Well, except for Thursday, when I had to get my mammogram and the whole day went chaotic as a result. And except for yesterday, when I was sick with some type of hopefully short-lived stomach bug.

Like I told you all already, I crafted a white polymer clay unicorn late last week. I don’t think I posted the picture to my blog so far yet, so here it is.

White Polymer Clay Unicorn

The creator whose YouTube tutorial I used, didn’t use a ball of tinfoil for the inside of the unicorn, so neither did I. This did mean I used up a lot of my white Fimo. Today, I wanted to make a snowman and didn’t have enough white clay even when using tinfoil for its insides.

Back to unicorns. I made another one on Monday, but threw it in the trash after baking because its horn drooped and it was cross-eyed. I did want to make another one though, so went back to the table on Tuesday to create one. This one, I did without even watching the YouTube video. This one’s made of Fimo in the colors Sunflower Yellow, Tangerine and Apple Green. I nicknamed it Sunnycorn even though its horn is green.

Sunnycorn

By late Tuesday, I was fully obsessed with creating polymer clay unicorns, but I had also thrown out most of my Fimo, because it was too crumbly to work with. The only colors suitable for a unicorn I had left, were Indian Red, Sunflower Yellow and Brilliant Blue. I don’t like the combination of red and blue, but red and yellow do look good together. I joked that they’re the colors of the nearest top league football club. Now it happens that one of my staff is a fan of that club and she had her birthday yesterday, so I decided to create a football unicorn in red and yellow for her.

Football Unicorn

For this one, I made use of some tips I’d gotten from people online and used a little wire to put in its horn to keep it from drooping. If you were to look at the unicorn from underneath it, you’d see that the wire stuck out a tiny bit. I guess I’ll have to figure out a way to prevent this, but for now, it’s okay.

On Wednesday, I finally gave in and ordered some new colors of Fimo Soft polymer clay. In fact, I ordered twelve (!) new colors, including four shades of blue. I already had Brilliant Blue and now I also have Pacific Blue, Blue Ice Quartz, Blue Agate and Pastel Aqua. I am tempted to create a completely blue unicorn now. Or a whale. I also ordered several shades of purple, Pastel Vanilla, Lime, Metallic Gold and Pastel Peach. My staff also went out to buy me some Fimo at the local craft store, where it’s more expensive but she saved on shipping. She bought me Emerald, Cherry Red and some new Tangerine, because I did know I’d almost used that one up. And now that I want to create a snowman, I realize I’m nearly out of white. Ugh.

I also ordered a mold for creating butterflies. This one is useful for both polymer clay and soap, though of course once I’ve used the mold for Fimo I can no longer use this exact one for soap.

Today, since I was out of white and couldn’t do a snowman, I decided to create a Christmas tree instead. I got cutters for St. Nicholas last week, so I cut out a Christmas tree out of Emerald Fimo and put little balls of Indian Red onto it. Then I had my staff put a hole into the top of the tree to put a ribbon through. Once it’s baked, I’m probably going to decorate the tree with gold Fimo Liquid.

This evening, I was originally going to try out the mold I’d ordered on Wednesday, but I got distressed over dinner and then didn’t want to do any more crafting. However, by 7PM, my distress had subsided and I did try a small butterfly in Brilliant Blue. I must say it turned out okay for my first attempt.

How was your week?

Word of the Week linky

An Unexpectedly Productive Monday

Today, I’m feeling better than I was expecting when I woke up this morning. I mean, I didn’t sleep well last night. I was ruminating a lot into the wee hours of the night and then kept being woken by a fellow client’s screams. This client can’t speak or use any form of alternative augmentative communication. The staff think he was in pain, but they couldn’t figure out what was bothering him. Thankfully, he seems calmer now. I hope he actually is.

I had a pretty productive day today. In the morning, I went to my GP. I had to discuss how I’m doing with respect to my abdominal discomfort now that I’m on one magnesium tablet a day. Together, we decided to leave it at this for now. I’m not totally well, but I’m as well as possible.

I also asked him to do a breast exam, because I’ve been feeling some discomfort. I felt okay with a male examining my breasts, after all he’s a doctor. Thankfully, he found no abnormalities, but he referred me for a mammogram just in case anyway. It’s been scheduled for this coming Thursday, which I consider really early given the state of healthcare and the pandemic and all.

In the afternoon, I decided to sort through my polymer clay stash to throw out the clay I can no longer work with. I mean, I know all clay can be made workable if conditioned enough, but I just feel that it’s too much work for me given how totally crumbly some of them are and how some of them literally get shredded by my pasta machine.

In the evening, I went for a walk, made another polymer clay unicorn and decorated my room for Christmas. Yes, I’m early for someone from the Netherlands, as most people don’t start decorating until after St. Nicholas, but I won’t be celebrating that anyway.

How was your day?