Early Experiences With Medical and Dental Care

Posted on by Astrid

Today’s topic for Throwback Thursday is doctors’ or dental visits. I have many early memories of medical care, probably because I, being multiply-disabled, often had to visit the doctor. Until I was about nine, that is, when my parents, my sister and I moved across the country and my parents stopped taking me to doctors altogether except when I had everyday ailments.

An interesting question Lauren asks in her original post, is whether your parents were scared of doctors or dentists. Well, truthfully, yes, mine are. My mother had her own fair share of traumatic experiences involving doctors, among which a situation that would’ve been considered medical malpractice had it been in the U.S. surrounding my premature birth. My father, I don’t know. He probably feels he’s smarter than most doctors and hence considers spending time with them a waste of his own time.

All that being said, up till the age of about nine, I was taken for medical care when I needed it. I don’t think I was really taken for health checks except those part of preemie follow-up. I don’t remember most of these visits, except the ones to the eye doctor. My eye doctor was always, and I mean literally always running at least two hours behind schedule. Waiting in the waiting room for her was the worst. Well, no, the second worst: the absolute worst was waiting for her to come back after she’d put dilation drops into my eyes.

I don’t think I was very afraid of needles as a child. In fact, when I needed to be put under general anesthesia for my various surgeries, as soon as my parents allowed me to make the decision myself between the anesthetic mask and the injection, I always chose the injection. I remember being horribly afraid that I would get the mask when I had to have cataract surgery in 2013, even though I’m not even sure they do this on adults.

One thing I did always remember was that the hospital staff would stick me in my toes rather than my fingers for finger pricks, because the nerves in my fingers should not be damaged because of the fact that I read Braille. I had to have a finger prick last year and told the medical assistant that she was supposed to stick the needle in my toe. She explained that she couldn’t, so I reluctantly agreed to have her stick the needle into the side of a finger I hardly use for reading.

As for dental care, I think I did have proper dental check-ups when I was young. I didn’t have problems with my teeth until I was about eleven and fell and a bit of one of my front teeth broke off. That was the first time I started worrying about my teeth. I did need braces, which was quite an ordeal as the orthodontist never explained properly what I could and couldn’t eat, so there were always parts of my braces getting loose.

I am not very scared of doctors. Dentists though, well, it’s complicated. I am scared of dentists, but also scared of losing my teeth. This has led to some rather odd situations in which I sought out dental care that I might not have needed and didn’t seek out dental care that I did need. Thankfully, now that I live in long-term care, I do get regular dental check-ups and the staff and dentist do try their best to make me feel as comfortable as possible.

#WeekendCoffeeShare (April 18, 2021)

Posted on by Astrid

Hello everyone and welcome to my #WeekendCoffeeShare post for this week. I just had my afternoon coffee. I think there’s still some left, or you can have a tea, fizzy drink or water. We alsso have custard cupcakes if you want one. They’re delicious! Let’s have a drink and let’s catch up.

If we were having coffee, I’d ask you about your weather. Ours has been steadily improving over the past week. On Monday, we still had a bit of ice rain, but the rest of the week, it’s not rained much. Today, we have some sunshine and temperatures of about 16°C during the day. It’s still close to freezing at night though.

If we were having coffee, I would tell you that, on Wednesday, I had a good talk with my community psychiatric nurse. I was able to express some of my anxiety. Then again, Thursday night I ended up in a bit of a crisis again. I tried to reach my CPN on Friday. Unfortunately, by the time she called me at 5:30PM, there was little she could do for me.

Tomorrow, I’ll meet with my nurse practitioner again. I’m considering asking him about my medication, both my daily meds and my PRN tranquilizer. While the PRN med, the atypical antipsychotic quetiapine (Seroquel), works okay for reducing sensory overload, I’m experiencing increasing anxiety, particularly at night. I don’t blame the quetiapine, but I’d really like something to help with this.

If we were having coffee, I’d share that I had quite a scary experience yesterday. I was walking outside in the sunshine and suddenly completely blinded. Of course, it is only to be expected that I’ll eventually lose my light perception too, but it’s still scary. My staff interestingly did understand my panic about being blinded. Most people probably won’t, since to a sighted or even partially sighted person, I’m pretty much totally blind.

I also had a pretty nasty headache, so I’m wondering whether I might have experienced a spike in eye pressure. My staff is going to inquire about getting my eye pressure checked by an ophthalmologist. I’ve heard, after all, that glaucoma needs to be treated even in blind people.

This experience did motivate me to finally inquire about getting a pair of NoIR sunglasses again. I had them in the past, but cannot find them in my size at the most well-known low vision shop. My staff E-mailed the occupational therapist about it. For now, another staff gave me a pair of regular sunglasses.

If we were having coffee, I would tell you that I got a new roller tip for my white cane on Friday too. I now have a marshmallow tip, which I think works better than the large ball tip I used to have.

If we were having coffee, I’d share how happy I am with all the engagement on my blog. It’s truly heartwarming to see how many people are touched by my posts.

If we were having coffee, lastly I’d tell you that my husband and I went for a walk in the “wolf woods”, as he calls the woods between Raalte and the nearby theme park. A wolf was found in the theme park a few weeks ago. Thankfully, we didn’t spot it.

How have you been?

Blindness: Dealing With Vision Loss #AtoZChallenge

Posted on by Astrid

Welcome to day two in the #AtoZChallenge. Today, I am going to tell you about my most obvious disability: blindness.

I was born prematurely. When premature babies could first be kept alive in incubators in the 1940s and 1950s, thousands of children became blind due to a condition first known as retrolental fibroplasia (RLF). The first known cause of RLF was excesss oxygen, as these babies were kept alive because of ventilators and no-one knew that too much oxygen could do harm too. Once doctors and nurses started being more careful with oxygen, the number of RLF cases decreased. However, still, babies develop this condition until today. The name of the condition got changed sometime in the 1970s to retinopathy of prematurity (ROP).

I was born in 1986. At the time, the first sight-saving treatments for ROP had become available. However, early detection is still key to timely intervention. At the time of my neonatal intensive care stay, the pediatric ophthalmologist specializing in ROP was unavailable, so my ROP remained undetected until it’d reached an advanced stage. I did have sight-saving surgery when I was about five-months-old, but I still had only about 20/400 vision left in my better (left) eye.

The bad thing about ROP is that, even though it isn’t in itself degenerative once the baby is out of the NICU, it can lead to further complications throughout life. These can then lead to further vision loss. I developed a cataract on my right eye at age seven. I got it removed, but couldn’t get a lens implant at the time. I could’ve gotten one when I was older, but by this time, my vision had already further deteriorated.

At age eight, when I had only “hand motion” vision (which corresponds to about 20/1000) in my better eye, my parents and the doctors decided to give up on further treatment. I didn’t like it, but I had no say in the matter.

From that point on, i was treated like I was totally blind. I wasn’t, but to a sighted person, 20/1000 looks like not worth it.

At age twelve, I suffered a retinal detachment in my right eye. From that point on, I was blind apart from slight light perception in that eye. I also suffered decreased vision in my left eye, though I considered myself having some minimal functional vision until I was around 17.

Now, I measure as having light perception in my left eye only and no vision in my right eye at all. Light perception is the ability to discern whether it’s dark or light in a room. For example, people with just light perception, can tell the difference between daylight and nighttime, but nothing else. I have some environmental light perception too. Not sure what the correct term for this is, but it means I can detect where for example a window is located. Occasionally, when the light is right, I still have object perception for large objects such as cars or people (within a few feet’s distance). I do not have form perception though, so I do not see the outline of objects.

In 2013, I had cataract surgery on my left eye. I had suffered a cataract on that eye ever since 2001, but, in keeping with my parents’ view, wasn’t going to have it removed. I finally took the step to ask for surgery when I was 27. I didn’t have my hopes up too high. I mean, the university hospital ophthalmologist had gotten my old records from age eight and hoped I’d get that amount of vision back. I just hoped for some color perception mostly, The surgery again was a partial technical success, in that they couldn’t give me a lens implant again. They offered me a second surgery to place it, but the doctors were by this time able to see my retina had atrophied and offered me little hope. I decided not to pursue the second surgery.

Dealing with vision loss can be hard. I mean, to a sighted person, I am considered blind from birth, but I still valued my residual vision when I had it and miss it now that it’s gone.