Friday Evening Ramblings

Posted on by Astrid

Hi all,

A lot has happened over the past few days. Last Tuesday or Wednesday, we were checking out the website for our current care agency and we found out they have stories from clients, family and staff on the website. One of the stories was about a woman who lives with minimal brain dysfunction. This is the old term for invisible effects of brain injury. She had this from birth. I loved reading her story. It was so relatable. Then again, some of us were feeling off. Like, this woman lives in housing for people with brain injury and some wondered whether we can do this too.

Then we had an idea. We read about a training program called Hersenz. This translates roughly to “brain etc.” It is kind of like a continued course about the effects of brain injury and learning to handle those at home. For like when you can’t be in a rehabilitation center but can’t quite cope at home either. I don’t know whether it’s for people who live independently only, as we have no intention of leaving this facility.
I then inquired about whether there’s a brain injury cafe in my area, where people with brain injury come once a month to discuss their issues. There isn’t as far as we can tell, so oh well. Oh, you all know that we have some level of brain injury from a brain bleed we sustained shortly after birth right?
We also have been thinking of asking whether we can have our story on the agency website too. That would be fab!
Today we had a meeting with our psych nurse and nurse practitioner from the mental health team. I can’t quite remember all that we discussed but it was a good meeting.
Oh by the way, I’m Danique. I’m 21 like Clarissa and I guess I split off from her. Not really sure why. I don’t care though. There’s someone softly telling me that splitting isn’t possible in adulthood unless you experience recurring trauma, which we don’t right now. Well I don’t care. We also think we found a younger one who is 11 and is called Janita or Janique Or Janelle but she isn’t really sure about her name.
I feel pretty awesome right now! I guess there’s someone else feeling triggered or sad or whatever, as I sense those feelings too.

Danique

Book Review: Scars Like Wings by Erin Stewart

Posted on by Astrid

I first heard of Scars Like Wings by Erin Stewart (Goodreads) in the summer, when I was reading a lot. I couldn’t wait for the book to be released in October. However, when it was finally released, it took me a few weeks contemplating how to get ahold of the book before deciding to check if it was on Bookshare, the U.S.-based accessible book service. It was! I downloaded it and started to read it immediately.

Synopsis

Everyone has scars. Some are just easier to see … 16-year-old Ava Lee is heading back to school one year after a house fire left her severely disfigured. She’s used to the names, the stares, the discomfort, but there’s one name she hates most of all: Survivor. What do you call someone who didn’t mean to survive? Who sometimes wishes she hadn’t? When she meets a fellow survivor named Piper at therapy, Ava begins to feel like she’s not facing the nightmare alone. Piper helps Ava reclaim the pieces of Ava Before the Fire, a normal girl who kissed boys and sang on stage. But Piper is fighting her own battle, and when Ava almost loses her best friend, she must decide if the new normal she’s chasing has more to do with the girl in the mirror — or the people by her side. The beautiful, life-affirming debut from Erin Stewart that’s being called the YA answer to Wonder. Perfect for fans of Jandy Nelson, Nicola Yoon and John Green. “A heartfelt and unflinching look at the reality of being a burn survivor and at the scars we all carry. This book is for everyone, burned or not, who has ever searched for a light in the darkness.” – Stephanie Nielson, New York Times bestselling author of HEAVEN IS HERE and a burn survivor

My Review

I loved this book! The reason it took me longer to finish than I’d expected, had very little to do with the book. I mean, yes, the book is 352 pages, which is pretty much the most I can handle for a read that doesn’t take me forever. I’m just a slow reader.

The book isn’t as much of a page-turner as some other books I read, but that’s because it’s not a thriller or suspense novel. I loved the way this book meandered. What I mean by this is, there are a lot of plot twists, but they’re not breath-taking except for a few.

I found Ava to be a really relatable character. I mean, I’m not a burn survivor, but I did stick out like a sore thumb in high school and felt like making myself invisible. Piper should definitely be on my list of characters I’d wish were my best friends. And for those who’ve read the book and wonder, yes, I’d stick by her no matter what, just like Ava does.

I loved how well-developed each character was. This is definitely not a fast-moving book, but it’s one in which you’ll really get to know the characters. I like that.

I’ve previously read books where I thought the story should’ve ended a few pages before it did. The best example I can give is Handle With Care by Jodi Picoult, in which Willow dies at the end and it’s a true disappointment. In other books, the end drags on too long or is too thrilling even with a good outcome. This one was just right in the middle in that respect. I loved it.

Book Details

Title: Scars Like Wings
Author: Erin Stewart
Publisher: Delacorte
Publication Date: October 3, 2019

Read With Me

Friday Flashback: Diagnonsense, Oh Diagnonsense!

Posted on by Astrid

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/

Eight Ways in Which My Reading Life Has Changed Over the Years

Posted on by Astrid

This week’s Top Ten Tuesday, hosted by That Artsy Reader Girl, is all about ways you have changed, particularly as a reader, over the years. I am not a book blogger, since posts about books make up not even ten percent of my total posts. I don’t read nearly enough to be a book blogger. This may be one reason I haven’t participated in #TTT for a while. However, I loved this week’s theme. Here are some ways in which my reading life has changed over the years.

1. I read because I want to, not because I have to. As a child and teen, I didn’t like reading much. Especially not the assigned literature we were supposed to read for school. For this reason, in my young adult life, I didn’t read much at all. Over the years though, I discovered a love of reading and now read for pleasure. Sometimes I still feel like I have to finish a book, but then it’s me creating the pressure.

2. I read almost exclusively English-language books. The book famine, ie. the lack of accessible books to people who are blind or otherwise print disabled, is still pretty severe in Dutch-language literature. In English, almost every book I want to read is available in an accessible format nowadays. This is one reason I enjoy reading books in English far more than in Dutch.

Another is the fact that I blog in English and, to be honest, I don’t do much in life (except for peeing and sleeping and eating) without some motivation related to my blog. I love to venture out into the bookish blogosphere at times.

3. The way in which I read, has changed. As a child, I almost exclusively read audiobooks. Oh and the occasional large print book suited for children much younger than me, because with how poor my vision was, ordinary large print was too small for me. I hated reading Braille, so unless I was forced to, I didn’t touch a Braille book.

Now I read almost exclusively by touch. I recently bought a few audiobooks, but to be honest am quite a bit disappointed in the narrators.

4. I discovered eBooks. As a teen, I read books my parents scanned for me. Then I didn’t read much at all as a young adult. In 2013, I found out that Adobe Digital Editions, the main program at the time to read EPUB eBooks, had been made compatible with screen readers. I read EPUB from then on, although I no longer use Adobe Digital Editions. I use the iPhone’s book app instead.

5. I joined Bookshare. Bookshare is the U.S.-based online book service for the print disabled. In 2005 and 2006, when I first started reading English-language books for pleasure, I was a member of the UK’s National Library for the Blind. I for a short while read physical Braille books then. That didn’t work out due to shipping issues. Bookshare, though it existed back then, wasn’t available to international customers at the time. It became available to those outside of the U.S. sometime around 2015. I joined Bookshare in mid-2016.

6. I found out about Kindle. That’s another eBook format that didn’t use to be very accessible. Back in like 2015, there was the accessibility add-on to Kindle software, which would read the content of the book aloud. Like I said, I’m not a fan of audiobooks and I’m certainly not a fan of the robotic-sounding voice of the Kindle accessibility add-on. Sometime in 2018, I found out that the Kindle app for iPhone, and to a lesser degree Kindle for PC, now support screenreaders and most importantly Braille displays. I still don’t buy Kindle books very often, as Bookshare has a wide selection of books too, but I know that if I really want to read a book, I can.

7. A larger percentage of the books I read is fiction. Roughly ten years ago, I only read a bit of teen fiction and mostly read biographies and other nonfiction. Now about half of the books I read and the majority of the books I finish are fiction.

8. I read a wider variety of books. Though most of the fiction I read still belongs in the young adult category, over the past few years I’ve ventured out into other genres as well. I love reading a diverse selection of books now.

How has your reading life changed over the years?

My Medication Musings: Celexa

Posted on by Astrid

Like I said last week when participating in Working On Us, I wanted to write a series of posts on the medications I’ve been on. I won’t promise this will be anything like a regular feature. However, today I saw that Medication Monday over at The Dark Tales Project is about a medication I currently take: Celexa. I already wrote several posts on this medication in the past, so may be repeating myself. Let me share though.

I was first prescribed Celexa in September of 2010. At the time, I had just finished a book whose title translates to Prozac Monologues, which was about the positives and mostly negatives of antidepressants. I didn’t really care. One comment I remember, by one of the pro-Prozac people, was that she’d become nicer on antidepressants. That comment was on my mind when my psychiatrist suggested Celexa and boy did I hope it’d do this for me. I was a definite bitch! The saying that depression makes you feel as though you’re not okay and neither is anyone else, definitely related to me.

The thing is though, I wasn’t sure I was depressed. No proper assessment of my mental state preceded my being prescribed Celexa. Yes, I was irritable and no amount of tranquilizers or antipsychotics could help that. But is that depression? Would Celexa help?

As it turned out, it helped a little with that. I felt a little calmer, a little nicer on the medication. I never asked my husband to comment on the level of my irritability and can’t remember for sure whether he ever made any positive comment on it. If at all, that must’ve been in 2018, when my dosage got increased.

I actually wasn’t diagnosed with depression till 2017. At the time, my irritability was one symptom that prompted the psychologist to diagnose me with major depression. I’m pretty sure I have persistent depressive disorder (formerly known as dysthymia) too though, but I don’t think I’m currently even diagnosed with any mood disorder at all.

It took another year before my Celexa dosage finally got increased to first 30mg and then my current dosage of 40mg.

I was very irritable at the time of seeking my psychiatrist’s help with my depression. I was also most definitely depressed, in that I didn’t have much energy or motivation for anything. As is known for Celexa and other SSRIs, the medication caused my energy to go up first before actually helping with my mood. My mood however did eventually lift. I am pretty sure that, had it not been for Celexa, I would’ve sank deep into depression during the long process of applying for long-term care.

But the story isn’t all positive. Aside from the side effects, Celexa (and Abilify) took only the edge off of my irritability. I’m in fact noticing it getting worse again. I’m not exactly sad, but I’m most definitely pretty negativistic lately. I’m not sure why. I mean, maybe it’s something to do with the lack of an over-the-moon sense of relief at going into long-term care. Or maybe it’s the other way around and my negativistic state prevented that. I’m not sure.

Dream #SoCS

Posted on by Astrid

I have a lot of vivid dreams. They suck at times. Sometimes they’re good dreams and I”m sad that they’re just dreams, but most times, they’re really distressing dreams. A few weeks ago, I dreamt that my husband was going to divorce me or I was going to divorce him because somehow (I can’t remember the details) my past identifying as a lesbian was getting in the way. Either I decided I was a lesbian after all or my husband got tired of me having identified as one. Or something. That dream had me distressed for days because I thought it somehow meant something. Like I was unconsciously unfaithful to my husband, which I have no intention of ever being.

Other times, I dream that I’m kicked out of or leaving the care facility. This also scares me, because I am to be very honest not 100% sure it was the right choice to go into it. I mean, yes, it’s much better for my self-care, but it does mean my marriage gets strained by my husband and me not being able to see each other as often as we’d like to or as we used to.

Last Thursday, I was in a bit of a crisis. I had been in the snoezelen® room for two hours on Thursday afternoon and as a result, couldn’t sleep. I also worried about my inability to travel to my husband each week by paratransit due to the limits on how much you can use that service. The fact that I had been in the snoezelen® room for so long and this is not the first time and I’m not sure what I can do during the day, made me think back to my old day activities. Then the fact that I cannot travel to my husband by paratransit even coupled with trains each week, made me think of leaving the facility and going back to live with him. I know this would be unwise in the long run, if for no other reason then because my spot at the old day center has been filled up already.

I E-mailed my staff at the old day center. Then I ran off. I made it to the bottom of the stairs, near the fire exit, before I realized I didn’t really want to run off. By then, the sleepover staff had heard me and called the night staff. She comforted me and I was able to go back to sleep. Back to more dreaming.

I am linking up with #SoCS.

Working On Us Prompt: Psychiatric Medication

Posted on by Astrid

I’ve been thinking of doing some posts on the medications I’ve been prescribed so far, but didn’t get down to it till now. Today, Beckie’s topic for Working On Us is psychiatric medication. Beckie asks a few interesting questions I didn’t think of.

First, she asks whether, when you were first diagnosed with a mental illness/disorder, it took you a while to get used to the medication prescribed. Well, my first diagnosis from a psychiatrist was autism, for which there are no specific medications. It took four months after that diagnosis before I first got put on a daily psychiatric medication. That was Risperdal (risperidone). I didn’t like it at all, even though it took only a few days to kick in.

I remained on Risperdal for 2 1/2 months, and then took myself off. I felt that the medication was merely used to keep me just contained enough that I didn’t qualify for more care. Well, it is my firm belief that medication is not a substitute for proper care.

Going off Risperdal was a mixed bag. I felt okay the first few weeks, but three weeks after having stopped taking the medication altogether, I spiraled into crisis.

After taking myself off of the Risperdal, I was without daily medication for nearly 2 1/2 years. I was in a psych hospital, so I can tell you right away that the crisis service nurse was wrong to say hospitalization would mean being put straight back on meds. Apparently my psychiatrist agreed medication is no substitute for proper care. That was until, despite mostly adequate care, my irritability got so bad I just needed something. I was put on Abilify (aripiprazole) and remain on that ever since.

Beckie also asks about withdrawal. I have been on the same antipsychotic and antidepressant ever since 2010 and never lowered my dosage yet. However, I did for a while take Ativan (lorazepam) at a relatively high daily dosage. Then when I wanted to quit, my psychiatrist said he’d prescribe it as a PRN med. Well, I didn’t need it for the first few days, so I didn’t take it. That was until I started experiencing tremors a few days into withdrawal. I am lucky I got only those and didn’t get seizures or the like. Thankfully, I got put back on lorazepam and tapered safely.

Beckie’s last question is whether you work closely with your doctor in managing your meds. Well, I just had a meeting with the intellectual disability physician for my facility last Monday. She is making sure I get my medications and will also order yearly bloodwork to check for metabolic issues etc. I haven’t seen a psychiatrist with my new mental health team yet, but will soon enough. I want to eventually try to lower my Abilify dose. The intellectual disability physician advised me to wait at least six months to get used to living here though.

#WeekendCoffeeShare (November 10, 2019)

Posted on by Astrid

As with Ten Things of Thankful, I haven’t joined in with #WeekendCoffeeShare in a long while. It’s late Sunday evening here, so my week-end is almost over. Then again, there’s still time to join in, so let me. I just had a drink of Crystal Clear, which is a type of non-carbonated soft drink. I hate carbonated soft drinks except for the very slightly carbonated drink called Dubbelfrisss. I haven’t had coffee since one o’clock in the afternoon, but if those who are in a different timezone (or even those in my timezone, cause who cares?) want a coffee, that’s fine by me.

If we were having coffee, I’d share that this past week has been filled with appointments. On Tuesday, I had a review at the care facility and on Thursday, I had the intake interview for mental health.

If we were having coffee, I’d share that the review went okay’ish. Honestly, I don’t remember that much about it, as the day activities staff seemed to be rattling off a list of changes they want to implement. That had me go “Whatever” only to melt down later in the afternoon when I saw what these changes were doing.

For one thing, the staff got shuffled around a bit so that my group has less staff available. That was a big change that caused me to go into panic.

Fortunately, the staff called for the behavior specialist to talk to me and they together were able to calm me down a bit. I still feel uncomfortable particularly with this specific staff. She’s leaving next week anyway, so oh well.

If we were having coffee, I’d share that my intake interview with the mental health team went pretty well. A staff from my living place went with me. This was comforting. At one point, a little came out, who reached for her hand. This felt good and the staff said that she was totally okay with it.

If we were having coffee, I’d share that tomorrow I have yet another appointment. I will be having an introductory appointment with the intellectual disability physician for my facility. I’m not sure what I expect out of it.

If we were having coffee, I’d share that I went home to my husband this week-end again. We had Chinese takeout this evening, which was good. Since my husband moved to Lobith six weeks ago, we haven’t had Chinese takeaway. It was much better, in my opinion, than the Chinese takeaway in Doesburg (near our old village). There, I’d pick it as a choice sometimes over other food vendors because you got loads of food, so it was essentially a huge binge I’d later pay for with bowel cramps.

If we were having coffee, I’d share that I had a nice walk with my mother-in-law and her dog Bloke this afternoon. We walked for nearly an hour, which was really good. After all, though I manage 30 minutes of activity most days, I’ve not had long walks in a while.

If we were having coffee, lastly I’d share that I’m now enjoying some of the liquorice my husband bought me at my request this afternoon. I’m being careful not to eat it all and trying to be mindful of my wish to actually enjoy the candy rather than stuff it all in at once.

What have you been up to lately?

Gratitude List (November 9, 2019) #TToT

Posted on by Astrid

Oh my, it’s been forever since I participated in Ten Things of Thankful. I think I participated once since moving to the care facility. The thing is, I have a ton of ideas for blog posts on my mind but only so much time to complete them. I mean, maybe a gratitude list should be one of the easier ones on my list, but oh well. I don’t know. I don’t want to make up excuses, so here’s my gratitude list.

1. Eating out with my husband and sisters-in-law. The sisters-in-law had offered it to us as a present for us having bought a house. We went to an all-you-can-eat restaurant. My husband thought he wouldn’t particularly like the food, but he did and I loved it. As those who know me well will admit, gluttony is my main deadly sin, LOL.

2. Great reading. I don’t nearly spend as much time reading as I’d like, but I do love the books I’m currently reading.

3. An increase in mental clarity and energy. I’ve been doing better in the brain fog department lately. In fact, I can usually manage to be quite active either physically or mentally most of the time during the day.

4. The sensory room at day activities, including its music player. It is connected to the waterbed, so that the music almost surrounds you when you’re lying on the waterbed.

5. A nice behavior specialist. On Tuesday, I had my review at the care facility. It went okay, but after it, I did experience some trust issues particularly with my day activities staff. She called out for the behavior specialist to talk to me some more and the issue got mostly resolved.

6. Sunshine. Of course, it’s fall here, so we don’t experience the great weather of summer, but we did get some relatively sunny days. It was nice being out in this weather.

7. My former psychiatric nurse practitioner calling me to check in. He also finally sent me the form he’d sent to the assertive community treatment team in my town, since I hadn’t read it yet. It was good to talk to him for a bit.

8. A good intake interview with the nurse practitioner and social worker from the new team. I was able to explain myselves quite well. My current diagnosis apparently is unspecified personality disorder with dissociation along with autism spectrum disorder, but I was able to go into some detail about the extent of the dissociation. It was good also to have a staff from the facility with me. This team is more concerned with one’s individual needs for support than with one’s diagnosis.

9. Walking. When I first came to this facility, I didn’t expect to get out and about much, but I usually do manage at least 30 minutes a day even now that fall has truly set in. I tried to reconnect my Fitbit when I found its charger earlier this week, but the app seems to have locked me out. I don’t really care though.

10. Sleeping with music on. On Thursday, I was so tired from the intake interview at mental health that I slept most of the evening away. I slept with a lovely playlist on Spotify playing on my phone. I am still considering getting myself a music pillow.

11. My husband. He’s so nice! It’s hard not seeing him as much as I used to, but he showers me with love each time we do see each other.

What have you been grateful for?

#IWSG: Poetry on My Mind

Posted on by Astrid

It’s time for the monthly Insecure Writer’s Support Group (#IWSG) day. I originally intended on skipping it this month, because the optional question didn’t speak to me. Then I realized anything goes as long as it’s writing-related thoughts. I don’t want to be kicked off the grid either.

This month has been okay in the writing department. I have been jotting down a lot of thoughts. About two weeks ago, I joined a support group for dissociative identity disorder on Facebook and was reminded in its learning units to journal daily. I haven’t actually been doing so exactly and the private WordPress site I intended for it, has been abandoned once again. However, I did start to write more.

As I said in my other post today, poetry has been on my mind lately. I have had haikus and other syllabic poetry floating through my head, particularly at night. I’m by no means good at it, but I like to practise.

And yet I still feel insecure about my writing on this blog. I mean, I want to write poetry, but am I good enough for it? The answer may be “No,” but that doesn’t matter. I’m not submitting to a publisher or even an open competition. I’m just writing for the fun of it!

How has your writing been?