Moaning About My Meds

Posted on by Astrid

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.

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.

#WeekendCoffeeShare (October 9, 2021)

Posted on by Astrid

Hi everyone on this sunny Saturday. Well, it’s not sunny anymore, as the sun has just set, but it was sunny all afternoon. Today I’m joining #WeekendCoffeeShare again. I’m in Lobith and I usually have tea in the evenings here, but if you’d like a cup of coffee, I’m sure my husband can make you one too.

If we were having coffee, I’d share that this week was all quite meh. I’ve said this a couple of times already over the past week. It’s all just one endless stream of sadness, triggers and the resulting flashbacks.

I’m pretty sure I’ve decided I’m going to ask my nurse practitioner to up my topiramate on Monday. I hope this means I won’t have to wait for my next weekly med refill on Saturday to get the upped dose. Of course I know meds won’t solve everything, but I can’t think of anything else right now.

If we were having coffee, I would share that I did find some inspiration in the soaping and essential oil departments again. Yesterday, I even managed to make a simple butterfly melt and pour soap.

If we were having coffee, I would tell you that I also managed to get in more steps this week than last week and that’s not counting tomorrow yet. Okay, last week was quite a bad week in the walking department, but oh well, let’s be thankful for the little things.

If we were having coffee, I would tell you that my orthopedic footwear finally returned from whoever (Shoe or AFO Guy) was working on it earlier this week. It finally seems to be okay now. Not great, but okay. I have at least been able to walk some 25 minutes on the footwear without too much pain and am pretty sure it needs getting used to as well.

If we were having coffee, I would repeat how grateful I am for all the lovely comments on my blog. Like I mentioned last week, I’m participating in #Blogtober21, though my only goal right now is to publish a blog post everyday. I’m no longer going with prompts. Today, I almost wouldn’t have written a post, as I’m with my husband in Lobith like I said and this usually means I can’t concentrate. However, I didn’t want to break my streak.

If we were having coffee, lastly I would share my husband cooked me a delicious rice and meatballs meal this eveningn. Neither of us was full after it, so we ended up ordering something else afterwards. However, the meal was very tasty!

How have you been?

July 2021 Health and Wellness Update

Posted on by Astrid

Today, I’m not feeling too inspired to write. However, I said last month that I wanted to make health and wellness updates a monthly occurrence. Here goes.

Last month, I was worried about my kidney function. My nurse practitioner was since able to reassure me it was within the acceptable range. I since have stopped using the Water Reminder app, as it was being a bit of a nuisance having to fill out my fluid intake each time. However, I still make sure to drink plenty of water.

The fact that my kidney function is acceptable means I have been able to start the topiramate too. Thankfully, like I’ve said, I don’t experience any side effects.

I also found out last month that I don’t have a UTI. The doctor still isn’t sure what is causing my bladder pain. I for a while took the max dose of paracetamol plus naproxen twice daily. Thankfully, I have since been able to get the naproxen back to an as-needed prescription.

As of last Tuesday, my magnesium, which I’ve been taking for constipation for a few months now, has been upped. I myself thought I suffered with diarrhea, but my GP was able to see that it was a result of constipation really. I am really hoping this will work.

To be honest, with respect to lifestyle, I’m not too satisfied with how I’ve been doing over the past month. I am still struggling to make healthier breakfast and lunch choices. This week, I started having crackers for lunch, which I like far better than slices of bread. However, we didn’t have those until Wednesday and yesterday, we already had a special grill lunch.

I did make sure to eat some fruit at lunchtime each day as well as some slices of cucumber. Overall, combined with my relatively healthy choices from the meal delivery service menu, I did meet my five servings of fruit and veg each day.

I got weighed in again yesterday and, sadly, had gained 400 grams compared to last month. I am still within the acceptable to me weight range, but I do need to make sure I really watch my diet more carefully over the next month.

Exercise-wise, I’m not doing as well as I’d like to. I would really like to make it to 10K steps more regularly again. I do know the weather hasn’t been great, but I still have the elliptical and can dance in my room. I would also really like to make weight training a part of my routine again. That might take some more time though, as, well, I want so many things.

Overall, I feel okay about the things I can’t control, like the fact that my kidney function is within the acceptable range after all. However, I could really do better on things I can control, such as eating a healthier diet and exercising more.

Gratitude List (July 10, 2021) #TToT

Posted on by Astrid

It’s been a while since I last did a gratitude post. Today I feel pretty good. Not that I need to feel good in order to do a gratitude post – I’ve written them to cheer myself up on many occasions. However, feeling good is also a good time to express gratitude. Here goes. As usual, I’m joining Ten Things of Thankful or #TToT.

1. I am so grateful for no side effects from my topiramate. I am not yet sure whether this medication will be working, although my staff say I seem calmer than I was before. It’s only been a week though, so we’ll see. I am however so happy I at least tolerate the medication, since many people don’t.

2. I am so grateful for increased motivation and creativity. Although this has been going on for a few weeks already, I’m really hopeful it’ll not just be an episode and, if it is, will last longer than usual.

3. I am grateful for pretty good sleep particularly early in the week. During the first few days of the week, my sleep quality was truly amazing. Last night it was a lot poorer, but I’m still happy to report I don’t experience major effects today. And it may or may not be the topiramate already working, but I haven’t had nightmares at all.

4. I am grateful for a hair clip my sister gave me for my birthday. I wear it in my new profile pic and, although I still prefer my hair mostly loose with just one small clip at the front, I do like this new look.

5. I am grateful for warm and relatively rain-free days. We’ve had more rain than is usual for the summer here so far, but it’s still okay.

6. I’m grateful my mobility seems to be returning to some reasonably acceptable level. Up till a week or two ago, I could hardly walk a kilometer at a time or I’d feel my legs get tired. Now I can walk somewhat longer distances again. I managed to reach 10K steps several days this past week and almost got it on a few other days.

7. I am grateful for delicious treats for lunch several times this week. Like, today we got mini pizzas.

8. I am grateful for quick package delivery. I ordered several things online Thursday evening and yesterday and they all arrived today.

9. I am grateful I decided to finally order some relatively expensive essential oils. I ordered Roman chamomile, sandalwood and vetiver. I also ordered sweet orange, because I’d used up all of my oil already a month or so ago. I’m so excited about all the delicious essential oil blends I can now make.

10. I am so grateful my staff killed the fly that had been annoying me buzzing around my room all morning before her shift ended. I’m probably not supposed to take delight in animal death, but I’m glad to make an exception for a fly.

What are you grateful for?

#WeekendCoffeeShare (July 9, 2021)

Posted on by Astrid

Hi everyone on this partly sunny and warm Friday evening. I’m joining #WeekendCoffeeShare. I’m afraid it isn’t time for our evening coffee for another hour yet, but I can offer you a glass of water or of course make you a Senseo coffee in my own coffee maker. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d share about the topiramate. Yay, I finally started it and yay for no side effects! That being said, I’m not noticing any positive effects either as of yet and my nurse practitioner said it’ll be four to six weeks before we’ll increase my dosage. That disappointed me a bit, given that the max dosage for PTSD symptoms is six times what I take now, so it’ll take at least six months to get to that level and then if we decide this medication isn’t for me after all, six more months to get back off. Maybe I’m wrong here, since I’ve never had a medication not work on me at all before. I’ll discuss all this with my nurse practitioner when I next see him. Of course, here’s hoping the medication will start working in a few weeks.

Next, if we were having coffee, I’d share that I’ve experienced an increase in motivation lately. This has been going on for a few weeks already, but I’m noticing it might stick around longer now. Usually, it only lasts for a week or so and then diminishes again.

I have not been as crafty this past week as I was last week, but still I’ve not been disappointed with my level of activity.

If we were having coffee, I’d tell you that I talked with the care facility’s behavior specialist yesterday. We decided to let the moving care homes issue rest for a bit, but get back to it in about two months’ time. I really do hope we can work on making my life in my current care facility better, as she’s right that every place has its positive and negative sides.

If we were having coffee, I’d moan about the rapid increase in COVID cases here in the Netherlands. We’re due to get another press conference from the prime minister at 7PM. I’m not expecting any measures that will affect me directly, but still, it sucks.

If we were having coffee, I would share that I’ve been spending quite a bit of money on my hobbies lately. I ordered several new essential oils, including the Roman chamomile I mentioned on Wednesday, as well as a full liter bottle of sweet almond oil. I also ordered a kitchen scale. Not a talking one, as they’re too expensive for my liking. I’m hoping all my supplies will arrive either tomorrow or next Monday.

If we were having coffee, lastly I’d tell you I’m loving looking at sites for bath and body recipes. I already created a pink grapefruit and lemon massage oil. Since both essential oils are phototoxic, I took extra care to dilute them properly and so far, so good. I used the oil on my hands yesterday and am absolutely fine despite the sunshine now.

How have you been?

#WeekendCoffeeShare (July 2, 2021)

Posted on by Astrid

Hi everyone! Can you believe the first half of 2021 is over already? I certainly can’t. Today, I’m joining #WeekendCoffeeShare. I just had my afternoon soft drink. If you want one too, I bet there’s still some left in the fridge. I can also make you a Senseo coffee if you want it. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk a little about the weather. It’s okay. Most of the past week, it’s been raining, but I still got time to go outside inbetween rainfalls. It was a bit chilly for summer early in the week. Today and over the weekend, temperatures are supposed to rise to above 20°C.

If we were having coffee, I’d also tell you that most of the pandemic restrictions were lifted last week. They however had only been lifted a few days when news got out about the delta variant of the coronavirus soon becoming dominant. Thankfully, the Netherlands has quite a high vaccination rate, so I have my hopes up we won’t enter a full lockdown come September. After all, my husband and I celebrate our tenth wedding anniversary on September 19 and we really want to finally be able to do something fun.

If we were having coffee, I would share that this week was a truly mixed bag mental health-wise. I did enjoy some activities, like jewelry-making. Last week was my 35th birthday and I got a bunch of supplies as a present. When being engaged in creative activities, I do genuinely feel some level of contentment, if not happiness.

However, there have also been times when I felt incredibly left out and hopeless. Like I said two weeks ago, the manager indicated that I cannot get more support than I’m getting now. Sometimes, I’m okay with this, but at other times, it really frustrates me.

If we were having coffee, I would share that I’ll finally start my topiramate this coming Sunday. The longer it takes, the less hopeful I am that it will actually help. We’ll see though.

If we were having coffee, I’d tell you that, on Wednesday, some type of staff support person came to observe and help the staff with some situations with other clients and with me. She offered some ideas for easing transitions for me. When I’m doing okay or sort of okay, they help, but when I’m very distressed, they don’t. I’m still unsure as to how I can ease the many transitions I face during the day.

If we were having coffee, I’d update you all about my situation with the possible UTI I talked about two weeks ago. Well, it isn’t a UTI. What it is, no-one seems to know or care about. I was told to take naproxen and paracetamol and, when this week I reported that they helped some, was just told to continue taking them for another month. A month! I mean, seriously?! I feel quite frustrated about this.

If we were having coffee, lastly I’d tell you that my sister and her family are visiting me and my husband in Lobith tomorrow. My husband gave me the choice between taking a ParaTransit taxi and him picking me up at 10AM. Since my sister won’t visit till 3PM, I decided to take the taxi. I still have my entire kilometer allowance, since I haven’t felt comfortable yet using the taxi due to COVID-19. My taxi should arrive here in Raalte by 12:30PM. It’s normally a little under a ninety-minute drive to Lobith, but the taxi service might be late and/or combine my ride with someone else’s. However, if I schedule my ride earlier, I won’t be able to have lunch. Fingers crossed the taxi won’t be late.

How have you been?

Nurse Practitioner’s Appt This Afternoon

Posted on by Astrid

I had a brief meeting with my nurse practitioner this afternoon. Even though it was only half an hour, we discussed a lot of things. First we made concrete plans for me to start the topiramate. Like I said before, I would need to be on the injectible birth control for two weeks before I could start it. That would be next Thursday, but I proposed I won’t start with the topiramate until the Sunday after that, July 4. That way, I won’t be just starting out when I go to Lobith on July 3. This was okay with my nurse practitioner and he’d make sure the pharmacy would get it ready on time.

Next, we discussed my bloodwork results. In the part that measures metabolic health, nothing worrisome was found. I asked about my kidney function and first my nurse practitioner said that unless your estimated GFR is below 60, it’s no reason to worry yet. Mine was 81. He checked my previous lab results. My estimated GFR was 71 in 2019 and 82 in 2020, so there’s not a clear decrease either.

He also complimented me on my cholesterol level, which was completely normal. Of course, there is only so much you can do about high cholesterol, but apparently I’m doing what I need to. It probably helps that I don’t drink and try to eat a relatively healthy diet.

Then the other page showed my blood level for my antipsychotic aripiprazole and its active metabolite. These were quite high. This means that side effects may outweigh the effectivness of the medication. While I don’t experience any major side effects, we will try to lower my aripiprazole dose in the not-too-distant future. That’s been a long-time wish for me anyway.

Then we got to discuss my crisis last week and my conversations with my husband. My husband had suggested I might have dependent personality disorder and I eventually thought he was right. Of course, in my mind, this led to all kinds of additional conclusions that my husband hadn’t mentioned, like my not having trauma-related issues and my not even being autistic and my being one giant manipulator.

My nurse practitioner said that DPD rarely if ever goes alone and that he wonders whether it even is a valid diagnosis. It is according to DSM-5, of course. He added that this is one of the most negative diagnoses to give someone. My nurse practitioner obviously didn’t mean my husband, as he didn’t really try to diagnose me at all, just wanted to give me food for thought. We will further discuss my issues with dependency in the future.

Overall, it was a good appt. As my nurse practitioner hadn’t read the E-mails we (meaning my inner people) had sent him over the weekend, we didn’t go into those specifically. Those E-mails had included a lot of self-loathing and self-doubt, including about our possible DID. I did explain about the dependency issue, like I said above. He also made sure I’m no longer in actual crisis. I confirmed this. This means I no longer need more frequent contact with the mental health team than I normally have.

June 2021 Health and Wellness Update

Posted on by Astrid

I am feeling kind of worried about my health lately. To get myself a more realistic picture of how I’m doing, I thought I’d do a health and wellness check-in. I am hoping I can make this a monthly habit.

Firstly, the reason I am worried is one abnormal result on the annual bloodwork I had done last week. I get an annual blood test for fasting glucose, cholesterol and other indicators of metabolic syndrome. This is because I take psychiatric medications that can influence this. Last year, my mental health agency ordered it, but this year, my care facility’s physician did. This means I could see my results in the patient portal for my GP surgery that same evening.

The good news is my fasting glucose, cholesterol and triglycerides were all within the normal range. The one thing that wasn’t, is an estimate of kidney function. It should be above 90 and was 81. Because it is an estimate, one abnormal blood test doesn’t say anything. I may need to be retested in a few months.

I looked up what to do about decreased kidney function, hoping to find that if I drank plenty of water, I could get it back to normal. I’m still not sure that’s the case. I mean, I try to drink at least two liters of fluid each day, but can’t figure out whether that should be enough. Other than that, I do try to watch my salt intake more closely. That’s pretty hard, of course – harder than drinking more water.

I do worry that I might not be able to tolerate the topiramate though, because if I remember correctly, that medication is eliminated through the kidneys. I’m not sure though and will leave this to the doctors to decide.

Like I said though, all my other results were within the normal range. My fasting blood glucose was 4.3. It should be between 4 and 6 and was 4.2 the last time, but I’m not drawing conclusions about it increasing as of yet.

Today, I did send off a urine sample for checking for a UTI, because I’ve been having lower abdominal pain. It came back alright. My staff will likely call for an appointment for me to see the doctor, as the pain is still pretty intense.

As for some good news though, I stepped onto the scale this morning and am back at my average weight for the past six months or so. My weight usually goes up or down a few pounds. I’m now 72.1kg, which means 2kg to lose for a BMI under 30. I am unlikely to reach that goal, but it’s okay.

As my husband reminded me when I told him about the abnormal blood result, small steps go a long way. I am already trying to cut back on my snacking on the weekend. I also make sure to eat enough veg and fruit. I mean, the meal delivery company isn’t great on putting veg in its pasta and rice dishes, which I eat most days. However, I make sure to eat some cucumber, tomatoes or raw bell pepper with each lunch. For the upcoming month, I’ve also selected some potato dishes from the meal menu, since they usually are richer in veg.

My husband also pointed out that I get enough physical activity. I could go on the elliptical more often, but my walking is pretty good already.

I did feel a little depressed when my husband told me that it’s obvious that I’m not as healthy as the average woman in her thirties. Then again, he reminded me that I turned the tide on my weight gain in 2018 and am healthier in some ways than I was before. Besides, a century ago I wouldn’t have lived past infancy. That put things into perspective.

Just Rambling

Posted on by Astrid

IWSG

I really should be posting my Insecure Writer’s Support group post today, but I’m not fussed. I didn’t write as much over the past month as I’d liked to and the optional question doesn’t appeal to me. For this reason, I’m just going to ramble. I will post the #IWSG link and image on this post, but I won’t really be sharing much writing-related news.

I mean, the optional question is how long you let drafts sit there before redrafting. The short answer is that I don’t really do drafts. I write my pieces in one go usually and publish them onto my blog right away. Of course, I do have freewrites and some works-in-progress that I haven’t published anywhere, but even my one published piece that I wrote back in 2014, I wrote in one sitting.

Okay, now that we have this out of the way, let me ramble about other stuff. Today, like most of the past month, has been mixed. I was okay for most of the morning and afternoon, but in the evening, I’ve really been struggling. My feelings that, if I drop my mask (figuratively speaking), everyone will run from me and no-one will want to care for me anymore, are intense. For those who might be visiting from the IWSG: I live in a care facility due to my multiple disabilities, including challenging behavior. Lately, I’m spiraling more and more out of control and this seems to create a vicious cycle of anger, shame, self-hatred and more anger.

Yesterday, I had an appointment with my psychiatric nurse practitioner. We decided there that I won’t go the diagnosis route for dissociative disorders, but that off the record at least we agree that I have dissociative identity disorder (DID). We won’t do a whole lot of system mapping. Not only have I done this already, but it seems counterproductive to the idea of needing to practice being present.

Speaking of which, I looked up the learning to be present exercise in the first chapter of Coping with Trauma-Related Dissociation and had my staff write it down. The book is in English (at least, my edition is) and my native language is Dutch, so I translated the exercises and where appropriate, adapted them to suit my needs. After all, one of the exercises is naming three things you can see around you. As I am blind, this won’t work. I do find that other exercises do help me. One in particular is the butterfly hug.

Tomorrow, my GP will get back to me about my medication. I would’ve gotten topiramate prescribed to me for my PTSD symptoms, but found out last week that it’d block my birth control pill from working. My nurse practitioner would originally have prescribed the topiramate, but now I need to work something out about getting on a different contraceptive first. This will hopefully be sorted tomorrow or at least then I’ll know when I can come in to see my GP about it. I really hope this medication (the topiramate) will help, since I’m on quite an emotional rollercoaster.