Currently (July 2019)

Posted on by Astrid

I have known about the Currently link-up for years, but rarely joined in and never did on this blog yet. Since the start of the linky coincides with the Insecure Writer’s Support Group day, I have until now found it hard to find time to join in. But now here I am.

Reading

Blog posts, mostly. I haven’t really been reading a book in months, but I really want to.

I did get a few free Kindle books on Amazon and did renew my Bookshare membership last month, so really I should have plenty to read.

Enjoying

Firstly, cooler weather. It was really hot here last week, but this week, it’s about 20 to 25 degrees Celsius, which is nice. I even managed to exercise on the elliptical again yesterday, despite my room being the hottest in the house.

Secondly, I enjoyed my birthday gifts. Last week was my 33rd birthday and I got some lovely presents.

Finding

Myself a living facility soon, hopefully. I will be finding out more about the living facility with my current care agency next week, as I will be visiting there then for an orientation meeting.

Saving

Money. Or at least, trying to. I found out last week that, now that I fall under long-term care rather than community support, my copay for the exact same care will be 140 euros a month rather than nothing. It will be 330 euros once I go into a living facility. Ugh. Since my husband and I may be buying a house too (for him to live in full-time and me on week-ends), this may help us reduce the monthly cost for living there. Mortgages are usually cheaper than rent, after all. Still, it doesn’t hurt to save some money.

Tasting

Lentils. And I actually liked them. My husband made a rice dish with them in it on Saturday. I don’t usually (think I) like lentils, but in this meal, they were good.

What have you been up to lately?

#WeekendCoffeeShare (June 30, 2019)

Posted on by Astrid

Hi all and welcome to another post in the #WeekendCoffeeShare. This week has been mostly good. I just had a cup of green tea once again, so have a cup with me and let’s catch up.

If we were having coffee or green tea, I’d share that this past Thursday was my birthday. I turned 33. I usually look forward to my birthdays, even though my wishlist is usually rather useless to my family. I love the gifts they give me anyway.

I had almost a full birthday week really, as I had visitors each day from Thursday up till today.

On Thursday, my parents visited and we had dinner at a restaurant called Paddy’s. I expected Irish traditionals, but the music that was played was 1980s Dutch pop. I liked the food though. I had a burger. My father had a lamb’s stew and my mother and husband had fish.

On Friday, I celebrated my birthday at day activities and my parents-in-law visited. I got a lovely sensory soft toy. It can, like the sensory cat I got from my sister two years ago, be warmed in the microwave and then smells of lavender.

Yesterday, my sister and brother-in-law visited. My sister is 30 weeks pregnant tomorrow, so I just had to feel the bump. They gave me new sandals.

Today, my two sisters-in-law visited. They brought me lovely smelling body care supplies. One of them had also made a cheesecake, which was yummy!

If we were having coffee, I’d also share that all the visitors have been looking at the information for the houses we might be offering to buy. Other than the one we saw last week, we visited another house and two apartments this past week. We’re still undecided as to which to place an offer to, if any, and of course, this is none of my blog readers’ business.

If we were having coffee, I’d also share that I met with a care consultant for Visio, one of the two blindness agencies, last Wednesday. This did lead to a little argument with my husband, as he thought I may want to live in their facility that’s nearly two hours away. I did decide then that, even though my husband wants the best for me, being close enough that he can visit each week-end, is more important to me than finding a good placement.

If we were having coffee, lastly I’d share that the oak processionary is no joke. When I first heard of it in the late 1990s, I didn’t worry. Neither did I earlier this summer when I heard it was in my area. I thought people were overreacting to it. Well, now that I have a terribly itchy rash all over my body, I can say it’s serious.

What’s beeen up with you lately?

#WeekendCoffeeShare (June 23, 2019)

Posted on by Astrid

A lot has been floating through my mind today, but until I decided to participate in #WeekendCoffeeShare again, I had no idea how I was going to convey my thoughts into a blog post.

Like last week, I’m having a cup of green tea as we catch up. I love green tea, more so than coffee. I must say though that I’ma bit addicted to coffee. I drink it more to get energized or out of habit than because I truly like it.

If we were having coffee (or green tea), I’d share how I’ve been doing with respect to finding a living facility. On Tuesday, I had an appt with the care consultant for a facility with my current care agency. Because he isn’t in a position to decide whether I’m a good fit, I’ll have to wait for him to discuss my case with the behavioral specialist and manager. He said he’d call my support coordinator next Tuesday, but wasn’t sure whether he’d have any news by then yet.

Because I wanted to remain active, my support coordinator has been contacting some other agencies. We started with the two national blindness agencies. Bartiméus has living facilities about an hour’s drive from my current home. Visio’s living facilities are all at least 90 minutes away. Visio was the first to return my support coordinator’s call and I have a meeting with them next week.

My husband was a little sad, as he thought I want to live in Visio’s facility that’s nearly a two-hour drive away. Of course, I want to be as close to my husband as possible, but I didn’t know how to go about finding a suitable living facility. My support coordinator is going to contact other agencies closer to my current home next week. These are not for the blind, but oh well.

If we were having coffee, I’d also share about our house-hunting experience. The visit to the house on Tuesday was okay, but after reading some reports on it, we decided not to go for it after all.

If we were having coffee, I’d share that my husband and I had lunch at a pancake restaurant today. I had a pancake with blueberries, while my husband had one with raisins and bacon as always.

If we were having coffee, I’d also share that the screen reader company finally called to let me know I could get a new version of JAWS, my screen reader for Windows, covered by health insurance. It is also about time for a new Braille display, he said, and they could let health insurance pay for both in one go. This means that after an eighteen-months-long wait, I may finally be able to get a PC with Windows 10 and the screen reader I love. Of course, I already have a Mac and hence I told the company rep I had to think of it.

My husband was critical at first. He asked which I’d get rid of if I had to choose one: my Mac or a PC with Windows 10 and JAWS. I said I’d get rid of my Mac. I mean, I’ve had it for nearly half a year and still struggle to use it. Other blind people say that’s normal, but I really don’t want to spend that long getting used to a computer. I mean, that’s how long it took me to get used to my very first PC! So my husband offered to get me a laptop with Windows 10 and all if he can have my Mac.

I have been thinking it over and the only thing I can do with my Mac that was a pain on PC was using a good feed reader. Then again, I can’t get used to the way Safari works on Mac, so if I want to actually interact with feeds, I’ll still prefer my iPhone. I no longer use my PC, because it has two broken keys and its Windows 8.1 won’t properly update.

Anyway, I’m going to call the company rep to let him know I’ll go for getting the Braille package as it’s called tomorrow.

If we were having coffee, I’d also share that it’s incredibly hot outside. In the coming week, it’s forecasted to get to 35 degrees Celsius or more. That’s no fun, as we don’t have air conditioning at home or at day activities.

The coming week should be exciting. Tomorrow, the day activities staff are taking some fellow clients and me to a local park and having lunch at a restaurant there.

Next Thursday is my birthday. I love it each year. We are going to eat at an Irish pub with my parents then. My sister and her husband are coming over for a visit on Saturday.

How have you been?

#WeekendCoffeeShare (June 16, 2019)

Posted on by Astrid

I have a ton I want to write about, but I’m not sure I can dedicate a full post to any one of these things. For this reason, I’m joining in with #WeekendCoffeeShare. I should really make this a regular habit, but for whatever reason, I cannot seem to make anything a regular habit where it comes to my blog. Anyway, grab a cup of coffee, while I grab a cup of green tea. Let’s catch up.

If we were having coffee, I’d like to share that this week has been pretty exciting. Not that anything much has happened, but we have a ton of plans layed out for the coming while.

For example, my husband decided he wants to go have a look at a house that’s for sale. It’s in his work city, which would mean a lot of time and money saved on commute. It’s a really old house, but my father said modernizing it should be relatively easy. My husband and I are going to have a formal visit on Tuesday.

My husband did ask whether, if I move there with him, I’ll retain my care. I said yes. The last time I participated in the weekend coffee share linky, I was awaiting news about my long-term care appeal. Well, I won! On June 4, I got approved for long-term care.

This also means I can start looking for a living facility. However, if my husband and I decide to buy the house and move before I’ve found a suitable facility, I will retain my current home support and day activities even though that city isn’t in our local authority. That’s as much as my parents know about long-term care. I haven’t told them I’m probably moving into a care facility.

Speaking of living facilities, I’ll meet with the care consultant for a living facility next Tuesday. This facility is about an hour’s drive from my current home, but it is with my current care agency and seems more suitable than the facility I toured in January. I cannot be sure of that, of course, as I have yet to be fully informed. So on Tuesday morning, I’ll meet with the care consultant and then in the afternoon, I’ll accompany my husband to the house visit.

If we were having coffee, I’d also share that my husband bought a rice cooker. He doesn’t like rice the way he usually cooks it, so was trying whether a rice cooker would help. I liked it. I really love the smell of rice!

I Got Approved for Long-Term Care!

Posted on by Astrid

Last Monday, I was so discouraged that I wrote a letter to myself motivating myself to keep going at least till 2021. I was in the process of applying for long-term care and I wasn’t expecting my funding to be approved until 2021. After all, my original application early this year had been denied. My support coordinator appealed for me, but I wasn’t expecting much out of it. The reason I had my hopes focused on 2021 is that by then, mental illness will no longer be excluded as a ground for long-term care, meaning that those with lifelong mental health conditions preventing them from living independently, will qualify.

Of course, I’m not just mentally ill, even if you see autism as a mental health issue (which it isn’t in my opinion). I am blind and have mild cerebral palsy too. I met some people at the CP conference who qualify for long-term care for just CP, even if it’s as mild as mine is. Then again, the rules have gotten stricter and those who lived in group homes or supported housing prior to 2015, qualify much more easily than those who didn’t, like myself. In this sense, my long psychiatric hospitalization works against me.

Two weeks ago, the lawyer in charge of my appeal with the funding agency (I didn’t have my own lawyer) said I probably didn’t qualify for long-term care. The reasons were complicated. From one person, I heard that the physician in charge of making medical recommendations was willing to recommend long-term care but was restricted by law because of my history of mental illness. From another, I heard that I couldn’t get long-term care because the physician couldn’t decide whether my primary disability is blindness, cerebral palsy or autism, so they decided not to qualify me at all. That’s rather weird, because they almost made it look like I would qualify with my exact limitations if only I didn’t have a psychiatric diagnosis on file.

I don’t know how they eventually managed to do it, but late Tuesday afternoon, the lawyer called my support coordinator to inform her I had been approved after all. I am so happy! I qualify based on blindness as my primary disability.

Now I feel weird. I know I should be happy and I am, but I feel also disconnected from myself. In a way, being approved for long-term care is an ending, in that I’ll (unless the laws change) never have to prove that I need 24-hour care again. On the other hand, it’s a beginning, enabling me to start looking for a group home. Because I qualify based on blindness, we may or may not be able to get me into a group home with my current care agency. After all, they primarily serve those with intellecctual disabilities. I prefer this agency though, so we may be looking into tweaking my care profile. If I can’t live with this agency, we’ll check out the two blindness agencies here in the Netherlands. One has housing about an hour’s drive from my current home, while the other agency’s housing is 90 minutes to two hours away. My husband said though to prioritize suitability of the group home rather than proximity to our current home.

I feel pretty distressed about telling my parents. They will be visiting me for my birthday at the end of the month, but I don’t know how far things will have moved along then. I don’t really know when to tell them. It’s okay though, I tell myself. I don’t need their approval.

#WeekendCoffeeShare (May 25, 2019)

Posted on by Astrid

And yet again, I did not write for almost an entire week. Fortunately, this time it isn’t because my depression is worse. It’s still there, mind you, but it’s not worse than it was a week ago. I don’t really know why I couldn’t find the mojo to write again. To get back into the swing of things, I’m joining in with #WeekendCoffeeShare. So grab a cup of coffee and let’s catch up. That is, I’d rather have a glass of ice-cold water right now, but if you’d like a coffee, that’s fine with me too.

This week has been a bit boring but also exciting. This week was when I was supposed to get news regarding my care situation. I still can’t disclose details. That will hopefully change soon, as I did get some news and may know for sure where I’m at this coming Tuesday. For those who don’t know, I’m in the process of applying for long-term care. Please all pray and send positive vibes my way.

On Wednesday, I normally struggle at day activities, because it’s the busiest day and we have a cooking activity then. I tend to want to be in control then and struggle trying not to be bossy. This Wednesday though, I did pretty well. I was even able to help with the cooking itself.

I’ve been fairly active as far as exercise is concerned. I went swimming with my day activities group on Tuesday. I nailed my step goal (10,000 steps) on Wednesday and nearly on Thursday too. I also finally got back into the swing of going on the elliptical regularly. As such, I got over four hours of exercise this past week.

My husbband invited me out for dinner at a chicken restaurant this evening. I love love love chicken and this place didn’t disappoint. It was an hour’s drive from our home, but my husband doesn’t mind driving.

Tomorrow, I’m probably going to have a relaxing day. We might visit my in-laws, as we usually do on Saturday but didn’t today. Other than that, I’m just hoping my day will go by okay.

Mental Health Ramble

Posted on by Astrid

The month of May is mental health awareness month. I’m not sure how much I can contribute to it. In fact, I only found out about it today. Since I have a cold right now, I really don’t feel like writing. Or really, I do, but my brain is too foggy I can’t come up with a coherent topic to write on. So I’m just going to ramble.

Since it’s mental health awareness month, I could share my story of how I found out I’m mentally ill. Then again, I honestly don’t know. Autism, which was my first diagnosis, isn’t a mental illness. Adjustment disorder, which I got diagnosed with upon my breakdown in 2007, isn’t really either. Thank goodness, it still qualified me for care back then. Since insurance coverage of care is diagnosis-based in the Netherlands, and adjusmtnet disorder is no longer covered, I wouldn’t have been able to get care with just that diagnosis later on. In this sense, it’s good that I was diagnosed with dissociative identity disorder and PTSD in 2010, then borderline personality disorder in 2013.

I am not even 100% sure I identify with mental illness myself. It’s really weird. If I were mentally ill, wouldn’t I need therapy? I don’t get any unless you count the meetings with my nurse practitioner every few weeks.

I don’t feel able to ask for more help on my own accord, even though I’m pretty sure I need it. I have been having a ton of weird symptoms lately and, though I’m getting by, is this really all there is to it?

I had a physical check-up at the mental health agency last February. I have a ton of issues that could be related to my mental health and/or the medication I take for it. Yes, despite the fact that I don’t even know whether I am currently diagnosed with anything other than autism, I take high doses of an antipsychotic and antidepressant. I don’t mind, but I do feel they need regular monitoring.

My psychiatrist would’ve seen me in March, at least that’s what she intended on in December. I still haven’t seen her. I do need to schedule an appt, but I’ve been taught through my years in the mental hospital that, unless you are a pain in the neck of others, there’s no need for you to see your treatment provider. I challenged this belief last year by scheduling an appot for my depression, but I”m not sure I can do it again.

Frustration: A Vent Post About My Mac #AtoZChallenge

Posted on by Astrid

Welcome to day six in the #AtoZChallenge. Today, I’m not in the mood for deep discussions, so I won’t write about something too meaningful. Rather, just allow me to vent a little.

I am increasingly frustrated with my Mac. My iPhone is still useful, but the Mac is very hard to get used to. Yes, I’ve had it for over two months and am still in the getting-used-to phase. To be honest, I rarely use my Mac, because it’s so hard to work.

Particularly Safari, Apple’s default browser, is hard to use. Navigating web pages, particularly large ones, is a pain. I am not in the mood to explain it in English and had some trouble explaining it in Dutch to my husband too. Suffice it to say that the issue is because of VoiceOver, Apple’s built-in screen reader, so Chrome or other browsers give me the exact same trouble.

I have been doubting whether my choice to buy a Mac was right ever since I got it. I know I can’t get JAWS, the good but expensive screen reader, because health insurance is giving me a hard time on covering it. This was the main reason I got a Mac, since it has a built-in sc reen reader.

Now I know I could be idealizing my old Windows PC. It didn’t work well in the end either. Two keys were broken. My rather outdated version of JAWS was giving me increasing trouble with an increasing number of programs. I had NVDA, JAWS’s open source alternative, installed, but was struggling using just Braille. Now I can’t do that on my Mac either. I have to always have speech on. This is okay with me.

I was probably idealizing the Mac before I bought it and this may be one reason I’m disappointed now. I’m not sure it was wrong to buy it, but I’m not 100% sure it was the right choice either. Ideally, I would’ve tried Windows 10 with NVDA on my old PC first, but I didn’t. Then again, my old PC isn’t useful now because of the broken keys.

Today, as I was discussing my concerns with my husband, he offered me his laptop to try. I may have to buy a Windows license, but that’s okay. I don’t like it that I can’t make just one device work fully, but that’s probably the thing with accessibility.

2021

Posted on by Astrid

I am struggling a lot. On Sunday, I read that long-term care funding will be available to those with a lifelong psychiatic disorder, but it won’t be till 2021. Then, I had myself convinced that I won’t get funding until then. After all, the funding person said the medical advisor may have to talk to my psychiatrist. I’m pretty sure my psychiatrist feels my primary disability is psychiatric in nature, because, well, she’s a psychiatrist. Then I will be denied long-term care funding for now.

Of course, I could be seeing the 2021 thing as a positive, in that even if I don’t qualify for long-term care now, I almost certainly will by then. I cannot see it like that though, because right now I’m virtually drowning.

I struggled a lot at day activities today. I have been struggling for a few weeks, in fact. I couldn’t find the words to express myself at first, only that I’m anxious. Then finally I was able to put some feelings into words. I fear when going into the sensory room on my own that the staff will forget me if I fall asleep. I also feel very easily overloaded by the other clients (and sometimes the staff). I just realize as I write this that staff trying to explain what is happening, sometimes overloads me even more.

I’m also afraid I will be kicked out of this day center if my challenging behavior escalates and that I’ll be left at home alone all day then. I’m not sure whether I believe the staff when they say that I won’t.

I am just so scared. I don’t know whether I can go on like this for two more years. In fact, I’m pretty certain that I can’t.

Carol

Long-Term Care Assessment

Posted on by Astrid

I’ve been wanting to write much more lately, but somehow, I can’t get myself to actually sit down and write. I remember originally posting twice a day almost everyday when I started this blog, and now I’m barely writing twice a week.

I still need to update you all on the meeting with the long-term care funding person. She wasn’t the physician but the one actually making the decision on funding. The physician may still need to contact my psychiatrist in order to advise this person on funding.

She asked a lot about my level of independence in various situations. Like, she asked whether I can cook or clean the house. I was expecting her to ask about much more basic self-care skills like showering. She did ask about those too. I don’t know whether it’s a good thing or bad that she didn’t go into that much detail about my basic self-care. I mean, those are things I at least try to do myself, even though I fail miserably at them. I thought it should be obvious that I can’t cook or clean the house.

The funding person asked multiple times whether I’d had independence training. I couldn’t go into too much detail about that, but I did make it clear that I got tons of it. I also think I explained that the skills didn’t generalize to a new situation, such as living independently.

The funding person said she may want me to get some type of test for emotional development. There is a questionnaire called SEO-R that I think support staff or others involved with the client fill out to determine at what level a client is emotionally. I googled the descriptions of the different developmental stages. In some respects, I would really be like a 6-month-old, while in others, I’m closer to 7 years. I didn’t recognize myself in the most advanced stage, which corresponds to children age 7 to 12. There is probably a stage for adolescents too, but this scale was originally intended for people with mild intellectual disability, who by definition don’t reach this stage. I know the whole concept of mental or emotional age is ableist, but as long as it’s not used to actually infantilize clients, I think there is some use to it.

The intent of this scale being administered in my case is to maybe qualify me for an intellectual disability care profile. The funding person wasn’t impressed with my IQ anyway. I mean, it was measured as being 154 some twenty years ago, but was measured as at least 35 points lower in 2017 and with a ton of discrepancies. Like, I scored high on calculus, but slightly below average on comprehension. Besides, I didn’t say this, but only the verbal part of the IQ test could be administered because of my blindness. I liked it that this person didn’t see me as some sort of genius.

At the end, my support coordinator tried to explain what we’re going to do with the funding if we get it. She explained about the living facility we visited last week. I got a little unquiet at this point, so the funding person offered to talk to my support coordinator on the phone later. She never did. I don’t know whether that’s a bad thing or not.

I’ve been really stressed out these past few days. I dream almost every night about possible outcomes of this assessment. Like, will I get funding based on blindness or intellectual disability? Or will the funding people decide mental illness is my primary disability and deny me funding because I need treatment for that first? And if I get funding, will I get into the place I visited last week? I hope I will, but I’m not getting my hopes up too high yet.

Now my support coordinator is on vacation and won’t be back till the 27th. I think the funding decision has to be made by then. My support coordinator asked me to text her when I heard about the decision, so that she can bring cake if I get approved. Again, not getting my hopes up.