Nurse Practitioner’s Appt This Afternoon

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.

#WeekendCoffeeShare (June 20, 2021)

Hi everyone on this sunny and comfortably warm Sunday. I didn’t join in with #WeekendCoffeeShare last week again. In fact, I haven’t been motivated to write much at all over the past week or so. Today though, I’m trying to get out of my rut and join the Coffee Share community again. I just had my afternoon coffee and will probably take a soft drink break midway through this post. If you’d like a drink, feel free to get one and let’s catch up.

If we were having coffee, I’d share that the weather over the past week has been beautiful. It was even a little too hot for my liking on Wednesday and Thursday and the nights were uncomfortably sweaty. However, I’m liking this much more than the rain we had over the month of May. We did get some thunderstorms during the night though, which scare me.

If we were having coffee, I’d share that I went to the doctor with my lower abdominal pain that I’ve had for about a week now. I wrote about this on Tuesday, but hadn’t been to the doctor at that point. I went on Thursday and, even though the urine sample I’d sent off for checking, didn’t show an obvious UTI, I did get antibiotics just in case while the sample is being further cultured. The doctor explained that it’s unlikely I’ll develop resistant bacteria, as I hardly ever take antibiotics. I am also to take paracetamol for the pain.

If we were having coffee, I would tell you that I’ve been in a bit of a crisis over the last few days. On Thursday, while I was still in quite a bit pain, my care facility’s manager came by to inform me that I cannot get more support than I get now. I realize it may seem silly to get into a crisis over this, but I’ve been struggling with major anxiety lately and was really hoping that more support could help me.

With respect to the anxiety, my husband tried to be supportive, but I ended up being triggered by some of his words. Like, he said he thinks I might have dependent personality disorder. This was the exact diagnosis I got in the psych hospital in 2016 and which was used as an excuse to kick me out. I don’t want to be kicked out of long-term care. I guess that proves I’m just being dependent though, as like I’ve mentioned before, I wasn’t dying living with my husband.

My husband tries to encourage me to do more things independently. While really I would like to be able to, the activities he mentioned (showering, for example) give me a ton of overload even now that my staff help me. Then again, who knows this isn’t just anxiety and dependency either? Apparently I’m not able, in my screwed mind, to make that judgment myself.

If we were having coffee, I’d share that I’m almost certainly going to start taking the topiramate in early July. I started the depo-Provera injectible birth control last Thursday and I will be able to start the topiramate once I’ve been on this one for two weeks. Now I’m only hoping the antibiotic won’t mess things up again.

If we were having coffee, lastly I would share that today, my one-on-one staff took me to visit her family’s horses. I loved petting the horses. One of them kept reaching for my lower abdomen. The family member whose horses these were, explained that she goes for the person’s body part with the most tension. I guess she’s right.

How have you been?

Disagree

Today’s prompt for Five Minute Friday (#FMF) is “disagree”. Initially, I was going to write a post about how (lack of) open disagreement with others was used against me. When my then psychologist diagnosed me with dependent personality disorder in 2016, she thought that my lack of open disagreement with many of her controversial opinions, proved I had this condition. It honestly to me proved that she was in authority even though she had no clue what she was doing.

I eventually deleted that draft and started over, but I still want to write along those lines.

In Christianity, we are often taught to not just respect, but obey authority. Children are expected to obey their parents in everything. Wives are expected to submit to their husbands.

As a survivor of childhood trauma as well as many abuses of power, I struggle with these commands.

That being said, the command to be obedient as a child and submissive as a wife, does come with its respective obligations on the part of the parents and husband. In Colossians 3:21, Paul writes for example: “Fathers, do not embitter your children, or they will become discouraged.” In other words, the Bible is not a reason for harsh treatment and abuses of power. Besides, of course the Bible does not say anything about people in modern-day, informal authority positions, such as the aforementioned psychologist.

Now, five years on, I am very happy that I eventually did stick up for myself and sought an independent second opinion on that diagnosis. Then I applied for long-term care. Now that I have the right people (loving, respectful people) around me, I no longer need to fear authority. I can respectfully disagree with people, whether Biblically I’m supposed to submit to them or not. I am still working on feeling confident in my role as a grown-up woman. God and His Word help me on this journey.

Okay, this post took me much longer than five minutes to write, as I had to look up what the Bible actually said and also because I got distracted several times. I hope that’s okay.

I’m Not Broken (And Neither Is Anyone Else)

A few days ago, I got a notification on WordPress that someone had liked a post of mine called “People Aren’t Broken”. It was probably on an old blog of mine and I can’t remember exactly what the post was about. From what I remember, it was written in response to a person being officially diagnosed as autistic and seeing this as a reason they weren’t “broken”.

Indeed, before my autism diagnosis in 2007, I always thought I was “broken”. Same once my autism diagnosis got taken away in 2016. I still had a personality disorder diagnosis (dependent personality disorder and borderline traits), but I believed strongly in the stigma attached to it. That wasn’t helped by the fact that my psychologist at the time used my diagnosis to “prove” that I was misusing care. I wasn’t.

Today, I found out people applying for benefits are completely screened by some kind of information gathering agency. It made me worry that the benefits authority or long-term care funding authority will do the same, even though I already have both.

It’s probably the same internalized ableism (discrimination against people with disabilities) speaking up that tells me that, if I don’t have a “legitimate” disability (like autism) that warrants me getting care, I’m just manipulative and attention-seeking and generally broken. I am not. And neither is anyone else. Including those who actually do have personality disorders.

This post was written for today’s Five Minute Friday, for which the prompt is “Broken”. Of course, I could have (should have?) written a more spiritual post and, from that perspective, everyone is in fact broken. What I mean with this post, though, is that there’s nothing that makes certain people broken based on disability or diagnosis.

If I Have a Good Day…: Ramblings on Fear of Joy

Today is a slightly better day than yesterday. I actually managed to make a soap for a staff and also go on walks. I even reached my daily step goal! In addition, I have been exploring my faith.

Still, fear of joy is haunting me. Until a few years ago, I never knew it was a thing. That is, I had read about it on a fellow trauma survivor’s website. That was many years ago already, but I never quite understood what it meant. I never realized I experience it. And yet I do.

I think this fear is intertwined with my core belief that, if people truly knew me, they’d abandon me. It is the exact opposite, in a way, and yet it’s similar too. I mean, if people abandon me regardless, why bother trying my best?

Deep down, I feel that people are going to abandon me if they find out how wicked I am. I also, conversely, feel that people are going to abandon me if they think I can cope fine on my own. And these different views are not mutually exclusive. After all, my psychologist at the mental hospital thought I was bad and manipulative, and yet she also thought I would cope fine on my own.

My belief that people don’t see the real me, the wicked, attention-seeking, manipulative me, makes me want to disappear. It makes me feel ashamed of my needs. But it also causes intense anger, because at the core maybe I want to prove myself right.

On the other hand, my belief that people don’t see my genuine need and think I can cope fine on my own, leads to actual care-seeking behavior. It’s not the same as attention-seeking, but maybe in my current context of a care facility, it’s worse.

I have a sense that both of these beliefs cause me to fear joy. On Sunday, I felt abandoned by the staff. Then on Monday, I was trying to “prove” that I’m more needy and hence more wicked than my staff believe. Today though, I’m feeling slightly better, but this scares me. It scares me because I’m convinced I’ll be expected to cope on my own if I’m managing.

Maybe that psychologist was right after all that I have dependency issues. I worry the staff will agree at some point and this in fact reinforces care-seeking behaviors. Which, of course, is counterproductive.

A Time I Decided to Speak Up for Myself

The weather has cooled off some, but I’m still somehow lacking motivation to do much. For this reason, I scrolled aimlessly through some journaling prompt books I have in my Kindle app. In one of them, one of the prompts that caught my eye was to recall a time when you spoke up for yourself.

I am usually not one to speak up for myself easily. Especially not when the person I’m needing to advocate to is an authority figure. The memory I’m going to describe involves my last psychologist at the psychiatric hospital.

She was somehow convinced that I have dependent personality disorder. There are good reasons to think so, but her reasons were not among those. To put it bluntly, she thought I misused care.

More importantly than her diagnosis of DPD though was her removing my autism diagnosis that I’d had for nine years. She believed that I could not possibly be autistic because I had a brain bleed as an infant and that instead my diagnosis should be some form of brain injury. She ended up putting hydrocephalus (which I’d developed as a result of the brain bleed) on axis III of the DSM-IV classification and that apparently should suffice in explaining my difficulties. That plus, of course, DPD. Well, it didn’t.

Like I said, I have trouble sticking up for myself. This is indeed a DPD criterion. Honestly I don’t even care whether I might have DPD actually. I can see how I have some traits. But DPD is different from care misuse. And that’s what my psychologist was accusing me of.

So I finally decided to stand up for my rights and demand an independent second opinion. This was extremely hard and my psychologist had been successfully trying to talk me out of it before. Not this time though. In February of 2017, I had an appointment with a clinical neuropsychologist at Radboud university medical center in Nijmegen. Three months later, on my would-be discharge date from the mental hospital, I got my autism diagnosis back.

Autism, of course, doesn’t explain everything I experience. I might have DPD too. And God knows what else. But I don’t misuse care.

My psychologist, interestingly, claimed that I spoke up for myself really well. That’s a rather contradictory statement to the DPD diagnosis. After all, dependents are often seen as passive. I still wonder why she didn’t have the balls to “diagnose” me as a malingerer.

Adult Separation Anxiety

One of the consultant’s comments in my emotional development assessment was that I have a lot of separation anxiety. The rest of my care plan is also full of how I’m afraid to be alone. A little over three years ago, my psychologist at the psych hospital said basically the same by diagnosing me with dependent personality disorder (DPD). Then, I vehemently disagreed. It wasn’t just out of anxiety that I needed lots of care, after all.

Another reason I was in denial of my separation anxiety/DPD, is the judgmental way in which my psychologist approached the matter. She felt I just needed a good kick in the behind and for this reason discharged me from the mental hospital almost with no after care.

Of course, that’s not the way to treat dependent personality disorder. Besides, one of the main features of DPD is not physical dependence, but unquestioning compliance, which I certainly don’t display. I don’t lack assertiveness at all.

I want to clarify here that, at least in my case, I’m not unwilling to be alone. I’m alone right now as I type this blog post. When I’m mentally well, I can be quite happy being alone, as long as I know there’s someone available if I need them.

It’s all too easy to judge people with adult separation anxiety disorder or DPD. Usually though, it’s much more helpful to approach them from an emotional development angle than from a character flaw angle. I again at least don’t want to ask for attention all the time. The things that I get help with from my staff, even though I can sometimes do them myself, I don’t ask for help with because I’m just lazy. In fact, it’s often easier to do some self-care tasks quickly by myself than to ask for help, but then the tasks don’t get done thoroughly.

I have for the majority of my life figured out how to care for myself alone. That’s because, despite all the independence training I got, no-one started with the very basics. Besides, like I said yesterday, I don’t usually distinguish between feelings of hunger, pain, etc. Isn’t it a bit odd then that you’d expect me to remember to do the day’s self-care tasks (which are many!) and actually do them all by myself?

I am so glad my current care facility isn’t as judgemental as my former psychologist was. My current staff don’t assume unwillingness, like she did. We may not find out soon yet what will turn out to have been the best approach. It will also probably depend on what measure of success you use for the outcome: independence, mental wellbeing, cost-effectiveness, etc.

I Am My Top Priority?

Today I decided to buy The Goddess Journaling Workbook by Beatrix Minevera Linden. This book of journaling prompts focuses on the Greek goddesses to explore yourself and keep a manifestation mindset all through the year. The first goddess to be explored is Persephone. She was led into the Underworld by Hades and ate a pomegranate there. This fruit was the fruit of the dead, so Hades could really keep her in the Underworld forever. Eventually, Hades and Persephone’s mother Demeter reached an agreement to keep Persephone in the Underworld half the year and in the upper realm the rest of the year.

Persephone’s story is used as a metaphor for our darker side and our mistakes that follow us throughout life (like Persephone’s eating the pomegranate did). The first prompt in Persephone’s chapter is titled “You are your top priority”. It asks us when we didn’t put ourself first.

Well, my first thought is: am I really supposed to be my own top priority? My husband often says he values me more than himself. I tend to reply that I value him more than myself too. Whenever I doubt that I value him more than myself, I feel guilty. But really, I currently choose myself over my husband whether that’s supposed to be so or not.

It wasn’t always this way. Until I made the decision to try to go into supported housing on September 20, 2018, I always put others first. Not just my husband, but literally almost everyone seemed more important than me.

I was diagnosed with dependent personality disorder in 2016. Though the diagnosis was made for all the wrong reasons, there is some truth to it. I remember my psychologist used my lack of resistance to her opinions against me and she was right. Until I decided to ask for a second opinion in November of that year, I never openly fought her list of ongoing misdiagnoses and mistreatments. It’s interesting that, later, she said I am very assertive but maintained that I have DPD nonetheless.

What also comes to mind, is that as a child and even as a teen, I always did what others wanted and put them before myself. I remember at one point using the Persephone myth to describe how I felt about my relationship to my classmates in high school. (Remember, I went to grammar school, so the classics were taught a lot.)

Still, I was thought of as self-centered or selfish even by my parents. This is probably because, in a materialistic way, I did put myself first. I was often jealous when my sister got gifts. Indeed, she did get more than I did, but I got more attention, albeit most negative.

Now I do generally put myyself first. I decided to go into long-term care despite no doubt disappointing my husband a bit. I mean, of course I struggled greatly living semi-independently, but it wasn’t like I was dying. Or maybe sometimes it was, because I did take two overdoses that could’ve killed me. Then again, wasn’t I selfish for doing this?

Linking up with Life This Week.

Friday Flashback: Diagnonsense, Oh Diagnonsense!

Today I’m joining in with Fandango’s Friday Flashback and sharing a post I wrote exactly three years ago on my old blog. I let my domain registration for the blog expire this week, but it’s still available on a WordPress subdomain. With this post, I have edited out typeos and am not going to keep all the internal links. I’ll provide a link to the original at the bottom of this post.

A few months ago, I wrote about my changing diagnosis. My autism diagnosis that’s been confirmed three times since 2007, was removed. That left me with just borderline personality disorder (BPD) as a diagnosis. If you thought I gracefully accepted this, you do not know me. I consulted with the patient liaison person at my institution, who recommended I seek a second opinion at another hospital. Now, three months on and we’re back at square one, and it’s not because an independent provider agreed with my psychologist.

On August 15, I talked to the patient liaison person, who on that same day E-mailed my psychologist asking her to make the necessary arrangements for me to get a second opinion. Instead, my psychologist told me she wanted to contact a psychiatrist at the brain injury unit first to inquire about the diagnosis of autism in people with brain injury. This doctor told her that indeed autism shouldn’t be diagnosed in people with brain injury, but the same is true of BPD. My psychologist would need to diagnose personality change due to a general medical condition instead. I stupidly agreed with her changing my diagnosis herself rather than sending me to an independent psychiatrist or clinical psychologist.

My psychiatrist, who is the head clinician responsible for my care, however, disagreed with my psychologist’s diagnosis. My named nurse said they were throwing around all sorts of diagnoses at my treatment plan meeting last month. Eventually, my psychologist informed me they’d settled on dependent personality disorder, borderline personality disorder traits and a developmental disorder NOS. I hate the DPD label, but can see how I might have some of its features. I needed to see my treatment plan to see what they’d meant with developmental disorder NOS, which isn’t a diagnostic code in DSM-IV unless prefixed by “pervasive”. That would essentially mean autism. As it turned out, they hadn’t settled on this diagnosis, as the developmental disorder was gone.

Instead, I now have DPD, BPD traits and depressive disorder NOS. I asked my psychologist whether this was a coding typeo, but it wasn’t. Her explanation was that I may formally meet the criteria for this, but the main reason for the diagnosis is for insurance purposes. You see, I can’t be in the mental hospital without a diagnosis on axis I (anything that isn’t a personality disorder). A nurse even twisted my psychologist’s actions like she’d done me a favor.

Last week, when I found out my final diagnosis, I lost it pretty much and was considering checking myself out of the institution. My psychologist was called, because the nurses thought I said I was definitely leaving, which I can’t remember having said. My psychologist encouraged me to leave right then, which I refused. My husband instead came to pick me up the next day for a night at home to have some distance.

Today, I spoke to the patient liaison person again. She was not happy at the fact that my psychologist had failed to cooperate with me in getting me a second opinion. This essentially means we’re back at where we started and I’m probably going to ask my psychologist to get me a second opinion again soon.

https://bloggingastrid.wordpress.com/2016/11/22/diagnonsense-oh-diagnonsense/

Working On Us Prompt: Depression

Oh my, I seriously haven’t blogged in nearly a week! It’s not that I have nothing to share. In fact, a lot has happened this past week. However, I’m struggling to put these experiences down into words on the page. I feel terribly uninspired and also held back by my own inner critic. You know, the voice that says posts have to be “blog-worthy” to publish. I remember I originally intended this blog for me to let go of this idea. Not so, apparently.

Today, I’m joining in with Rebecca’s Working On Us Prompt. This week, it is all about depression.

The first question is to share what type of depression you suffer from. Well, it seems simple and yet it’s complicated. When I had my original mental breakdown in 2007, I was assessed for depression, but the psychiatrist couldn’t diagnose me with it. I just about didn’t tick enough boxes, probably because I didn’t understand half the questions. I was most definitely depressed, but acted it out as agitation. My diagnosis was adjustment disorder.

Fast forward nine years. I had lost my autism diagnosis, which had been replaced by dependent personality disorder (DPD). Because just an axis II diagnosis didn’t qualify you for this inpatient unit, my psychologist gave me an additional diagnosis of depressive disorder NOS. Yes, I kid you not: she seriously gave me an additional diagnosis so that I could stay on the psych ward for a bit. One of the nurses said she did me a favor, because in fact, the whole DPD diagnosis saga was meant to eventually kick me out of there.

I sought to get my autism diagnosis back through an independent second opinion. For the initial assessment, I was given a ton of questionnaires I had to fill out online. Among them was of course the autism spectrum quotient questionnaire, some ADHD screening tools but also a depression inventory. I filled it out as honestly as I could. It seemed as though the questionnaire had been designed for me! I scored as having severe depression. Eventually, I was diagnosed with moderate recurrent major depression. I also got my autism diagnosis back and DPD was removed.

Rebecca’s second question is about treatments. I have been on the SSRI antidepressant Celexa ever since 2010, so years before my depression diagnosis. I hardly knew why I took it and had no idea whether it was helping. This is until I noticed my mood dropping significantly in late 2017. I waited for six months for it to pass – because I didn’t want to misuse care – and then consulted my psychiatrist. She increased my Celexa dose. It has been a godsend. Without it, I’m pretty sure I’d still be very depressed.