If We Were Having Coffee… #WeekendCoffeeShare.

We haven’t had a

Weekend Coffee Share

in a while, so I thought we could have one today, ’cause I have a couple things to share with you all, and I want to hear how you’ve been doing, too. 🙂 So if you feel like having a cuppa, or something yummy to eat, come along and join me, and I’ll be super happy to have you here! 🙂

Grab a cup of your favourite coffee (we only have black, whole bean coffee in here right now, which I personally think is the best, but if you’d like something fancier you can bring it with yourself). I can also offer you some tea (we do have plenty of these), or cocoa, or some orange juice, or kefir if you like it or want to find out what it’s like, or plain tap water, or you can bring some other drink that you like. I don’t have much interesting stuff where food is involved, if you’re properly hungry and are a meat eater there’s a fair bit of meat left because we didn’t manage to eat everything for lunch, or I can make you a sandwich, but otherwise I suggest you bring something yourself if you’d like a snack with your coffee or something. Yeah I know, bad Bibiel, what sort of coffee share it is without providing your guests with snacks, and a proper variety of coffees. Will try to prepare myself better next time. 😀

 

So if you’re sitting comfortably and have something to munch and/or sip on, let’s get into it. 🙂

If we were having coffee, I’d ask each of you how you’re doing…?

If we were having coffee, I’d start with the mundane topic of weather and share what it’s been like here this week. Because it’s been quite warm, if not hot, for late summer, at least here. It’s a common thing that late August is all gloomy and rainy, and then the first few days of September it gets maliciously hot so that poor kids who are starting school are melting indoors and want to go out and play but can’t cus they have to do some goddam fractions or whatever else they have to do, but after these few days it usually gets a fair bit colder and stays this way. Well, not this year. This year, the first week of September was very very windy and rainy and quite chilly, whereas this week it was as high as 27 C on Tuesday. It felt a lot fresher outside though than the temps would suggest and was just nice and summery. Then yesterday we got pretty bad rain and storms, and today it’s cooler but still very sunny.

If we were having coffee, I’dfill you in on

the Sofi situation.

In the post above I wrote how Sofi is suspected by her new GP to possibly have Marfan syndrome and that she’s gonna have genetic testing in February. In the meantime, my Mum had been ruminating about it quite a lot, which is not her normal, but she’s now feeling a lot better about it as it seems. Like, whatever will be, will be. The good thing is that Sofi doesn’t have, to our knowledge, any major complications that can arise from this condition, so even if she ends up being diagnosed with it, I personally figure that we should feel lucky that despite this diagnosis, she’s been doing this well so far. Mum agrees with me, and Sofi herself doesn’t think much of it. What had been particularly bothering my Mum, and still does, to an extend, is Sofi’s height, as she’s already like 180 cm and shows no signs of wanting to stop growing any time soon. I mean, maybe she herself wants, but her hormones or whatever is in charge does not. Since the genetic testing is still to come and we still have to wait quite a while, there’s no other news strictly where it comes to Marfan’s, but, as you may remember, all the worry related to that also made my Mum worry that Sofi could have polycystic ovaries and that that may be the reason behind her still growing and still not menstruating. So she had her first gynaecologist’s appointment about a month ago or so, and, while she was extremely anxious before that, it all went well and there were no bad news, everything is perfectly fine with Sofiwhere gynaecology is concerned.

If we were having coffee, speaking of Sofi (wow, what a cool rhyme lol, and yes, in case you’re wondering, this Sofi is pronounced like coffee with an S, not like Sophie because that’s how most Polish people say Sophie), I’d also tell you that recently she got vaccinated. Not for Covid, but for diphtheria, tetanus and whooping cough (these sound really weird in English :O ). She got the vaccine on Thursday, then started having some arm pain in the evening. The next day her arm hurt even more but she still went to school as normal, but when she came back she was feeling horrid. She had a headache, sore throat, achy muscles, couldn’t breathe normally and was very tired and weak and had a bit of a cough. She was supposed to go have her nails done after school, which she did, but as soon as she came back she just went to bed, so it all felt kind of concerning given that she’s normally very strong and healthy. But I guess that could be the exact reason why she reacted to this vaccine so fiercely. She didn’t get up for the rest of the day and by the evening she seemed like she had some fever and it got quite creepy because not only did she have muscle aches but her skin seemed extremely sensitive to touch pretty much all over her and she couldn’t even change position easily ’cause she said it hurt so badly. My Mum claims though that as long as you’re hungry while sick, things are looking good, and by late evening Sofi got a wild craving for fast food so I got her some. When I was a kid I also got wild and very specific food cravings whenever I had fever, and especially at night, so it either must be a common thing that I didn’t realise or it’s genetic for us. 😀 On Saturday things were a little bit better and Sofi really wanted to go pick mushrooms with Mum, so she did, but she was quite drained by the time she came back and spent the rest of the day in bed. So has been the case today, and she’s also got a stuffed nose. Mum doesn’t really know what to do, since these appear to be vaccine side effects so it seems counterproductive to her to give Sofi some medicines because she thinks her body needs to deal with all this on her own. If things won’t get better until tomorrow, which it doesn’t seem like they will, Mum will take her to the doctor.

If we were having coffee, I’d share with you something about which I already wrote a couple times here, but not much and only in passing. This is not like a huge news or anything breakthrough, but I think it’s worth noting in its own place. This something is that I’ve kinda sorta started learning Norwegian, I guess it was some time in July. I think I’ve written at least one coffee share since but I still had too much turmoil in my brain surrounding it so didn’t feel able to write anything constructive. Perhaps you remember that, as long as my favourite languages list is, and despite it features languages like Swedish, Faroese or Sami, Norwegian had never been on it. And I’m still not sure whether it is now. But for some reason I’ve been feeling more drawn to it lately, and also want to have a closer look at how it works, so that I have some more idea about it other than simply through my Swedish. I don’t know why I’d need it because I could already understand a fair bit of (especially written) bokmål Norwegian (there are two written Norwegian languages – bokmål which is like more classic and nynorsk which is more modern and rural) via Swedish, but that’s what’s happening right now. I started to realise my feelings for Norwegian were deepening in late June, around the time when we were on our camper trip in Masuria, and Sofi and me rode in the back of the camper, on the bed, where if the roads were bumpy, it made us jump up high to the ceiling, so when people ask me “why oh WHY Norwegian? Have you got a faza or did something specific happen involving this language that made you love it out of the blue?” I say perhaps because I got a brain injury from all the close encounters between my skull and the ceiling on the trip, ’cause I really have no better ideas. I mean, I could tell you now, at the point where I am currently, that I like Norwegian for its extreme diversity, like, it’s one language, but it’s two languages, and in practice, as some say, there are more dialects than people there. 😀 This definitely contributes to me liking it now. But I only got to experience this phenomenon first-hand after I got into it. And my feelings started to deepen before I decided to go with the flow and get into it and try to learn it. And it wasn’t like these feelings came and I embraced them right away, far from it. At the beginning it was freakishly intense and I didn’t know what was going on and I was really reluctant to do it, actually. I mean, I’m learning Welsh right now, it’s my first Celtic language and it’s more difficult than any language I’ve learned before, have still like a dozen or so languages that I want to learn in the future, Sofi says I should be treated for that ’cause something’s wrong with me, so I seriously can’t afford another language, someone save me or it’s gonna kill me! In the end though, I just had no willpower left to resist my brain any longer and got pulled into it properly. It felt like I had no choice but make room for Norwegian in my life.

The situation isn’t as bad as I feared, since I already know English and Swedish so there’s a whole lot of similarities between Swedish and Norwegian, they’re generally mutually intelligible, and Norwegian and English also share some common ancestry being both Germanic languages. That means it doesn’t really feel like I am learning a completely new language. More like a complicated dialect or something. It’s not like I have to learn everything in a sort of linear, structured way, starting from the very basics, because a lot of vocabulary I’m either completely familiar with or can figure out without much trouble, and a lot of grammar also already makes sense. Also, compared to Welsh, learning Norwegian is also way easier due to the wider availability of all sorts of materials. I’d long forgotten what sort of luxury it is to be able to learn a language via your mother tongue, and there are plenty of Polish immigrants in Norway, so plenty of Norwegian online courses, workbooks, whatever you want. Only problem is that a lot of the Polish material I’ve looked into isn’t of particularly good quality, like they teach a terribly unnatural accent if not plain wrong pronunciation (like you in Norwegian is du, where the u sound is pronounced like in the English word you, while I’ve found a Polish resource where they teach you that it’s pronounced with an oo sound, more like the German du. Except when you pronounce it like that in Norwegian it’s spelled do and it means the loo 😀 ) or only give you an idea about some stiff, official bokmål which might be a thing in writing but no one speaks like that. So I still tend to stick to the English stuff for the most part, and am also able to learn Norwegian in Norwegian itself, especially from written materials. So with a bit of effort on my part, I managed to make it work so that I can squeeze in both Welsh, which is still in the centre stage, and Norwegian, which I learn usually on weekends plus a lot of exposure in the meantime. It feels kind of weird to call it learning though, because for me language-learning is when your brain lets out steam and your brain muscles get all sore and pulsating, whereas here it’s rarely this intense. It’s still enjoyable though. I still wouldn’t say that I love Norwegian as much as I do all “my” languages, but I think if it won’t disappear as randomly as it appeared I’m probably going to get there and I do like it a lot. I mean, I’ve never disliked it, but now I like it more than ever, yet still don’t love like I do Swedish, Welsh & co. Like I said, I love the whole diversity in it and I’m loving more and more how it sounds. It’s so cheerful and childish compared to Swedish, and at the same time kind of more rugged than Swedish and less fluid, to me Swedish sounds more serious and sort of posher.

I don’t even know yet what I want to achieve with this whole Norwegian “learning” and where I want to go, what for etc. but maybe things will clear up. I guess it might come in handy when I’ll start with Sami. Maybe I’ll finally pluck up the courage to read all those Norwegian books my Mum bought me, thinking they were Swedish, including a grammar book from I guess the 50’s. :DBut overall, while I usually try to aim for as much fluency and familiiarity with a language as possible, at least for now I’m taking it very easy with Norwegian and don’t have any wild ambitions or anything, we’ll just see how it develops, I’m not in charge here anyway, my brain has taken over while I was on those Masuria holidays. Who knows, perhaps it’s just a short episode and I’ll soon be over it?

Now that I’m no more reluctant and have accepted the state of things and flowing along with it, I’m thinking that perhaps there’s something like destiny or whatever involved here, because I’ve had several people in my life who have told me in one way or another that I should learn Norwegian. My Swedish teacher started learning it at some point during the years he was teaching me and could go on and on and on about it and would often try to tempt me into it too saying stuff like that, actually, Norwegian is just like a little dialect of Swedish. It made me think what Norwegians would think of someone putting things this way and I thought it sounded quite diminishing. Like, I myself am half Kashubian, and while I don’t have a strong bond with the Kashubian language (I can barely understand it when someone speaks fluently) or culture, and also am far from supporting the separatistic notion that some Kashubians have, one of the reasons being that I personally identify as Polish far more than Kashubian, nevertheless it really irks me when people call Kashubian a dialect of Polish ’cause it’s just not a dialect. One day he devoted the entire lesson to introducing all sorts of Norwegian phrases and idioms to me that he wanted me to translate to prove to me how Norwegian is very easy when you speak English and Swedish. Sure, but at that point I just didn’t feel it, and if I don’t feel a language there’s no point in trying to convince me. It’s as if you tried to make someone be friends with or date someone else just because YOU think they’d make good friends or couple, while the individuals in question feel totally indifferent about each other. Now that I’m learning both languages, I totally agree that, while Norwegian as it is now certainly is not a dialect of Swedish, in many aspects it really seems like it could be. 😀

Then there was a classmate I had at the blind school, who didn’t know about my Scandinavian interests (which I was trying to suppress at the time because I temporarily wasn’t able to learn Swedish and it was a huge source of frustration to dwell on it or expose myself to Swedish in those circumstances) and for some weird reason he told me several times how in his mind he associates me with Norway, which I found rather hilarious. He didn’t know why either. Later my paternal cousins have come up with some weird theory I’ve no clue how, that we have some Norwegian ancestry. It’s always seemed doubtful to my Dad and my gran and me too, but in the past they would often say how I should rather learn Norwegian than Swedish ’cause we allegedly have some distant family connection to Norway.

And lastly there was my late friend Jacek from Helsinki, who shortly after we first met said that, as much as he praises my learning Swedish and considers it aesthetically superior over other Scandinavian languages, he felt that perhaps Norwegian would have been a better option for me, because of all them weird dialects and because they have two languages instead of one so I’d probably have more fun. All of these people would probably be happy now that it has come true, after all, lol.

I also have THREE uncles who all work in Norway (one full-time and two get sent there from time to time for some longer-ish periods) and one has told my family that apparently he’s learned to communicate in the language decently. He never said that to me, although we have talked about Norwegian vs Swedish several times, and he never talked Norwegian in front of me, but now I have to admit I’m looking forward to some bigger family gathering where all of these uncles of mine will be present so I can break the news to them and we can find out who can snakke (speak) better than Bibiel *evil laugh*. Or maybe I’m in for a surprise and any/all of them actually snakker better than Bibiel, which would be just as cool, they’ve certainly had more exposure than me and more potential opportunities to practice with people! 🙂

If we were having coffee, I’d mention that we’re having a bit of a national Catholic holiday today. This is because it’s the day of beatification of cardinal Stefan Wyszyński, the Primate of Poland. Beatification means that he is now known as blessed (which is like a step below canonisation when a person is proclaimed saint) and a primate is the archbishop of a country. Even due to his function alone, he was a very important and valued figure in the Polish Catholic church during his life and still is very much valued and respected due to his huge positive influence on the church and aspects like the so-called folk devotion to Mary, to name just one thing. Along with him, another person who was beatified was mother Elżbieta Róża Czacka who was the foundress of the religious order who leads the blind school I went to, and also the foundress of the school and everything around it as well. She was blind herself ever since she was 22, I believe, and is said to be the first person in Poland who has taken the problem of education of the blind seriously. This school is relatively well-known and quite a few people who have nothing or very little to do with the blind have heard about it somewhere and back in my school days they would ask my Mum whether I go to THAT school. I am talking about this because now that she and the whole blind centre and the order she founded have been talked a lot in the media and churches in the period leading up to the beatification, I’ve got quite a few people from my family and even beyond, asking me things like whether I’m happy that she’s gonna be beatified, and I found the amount of that and this specific phrasing of the question quite interesting so I thought I’d write a little bit about that and how I feel about it. Am I happy? Yes, I’m very happy! I feel tempted to throw an “obviously” in there, but since I’ve got this question so often perhaps it’s not so obvious for some reason. But I can’t think of a reason why I wouldn’t be happy. We definitely can’t complain about lack of representation of disabilities among saints but the more the merrier, and also I’ve got a feeling that blindness in general has gotten a little bit of spotlight in the Catholic church due to this, because they are telling her story everywhere now and obviously it’s impossible to tell her story without talking about blindness and the blind. Also while I can think of several blind saints, most of them have lived quite a long time ago and when reading about their lives there’s not much you can learn about their experience with blindness specifically, perhaps except for my dear patron saint bl. Margaret de Citta di Castello but she has also lived quite some time ago. So I think mother Elżbieta (or should I be saying Elizabeth in English now?… I never know if you should translate saints’/blesseds’ names or not, it seems so inconsistent) is going to be particularly relatable and close to the hearts of many blind people, and I think that sort of connection is important. I know many who have loved her long before she has been beatified, even if they were too young to know her or didn’t get a chance to meet her personally. I’ve heard of some blind people from that school who actually regard her as a sort of mother figure or something. And beyond that, whether it’s her or someone else, I think a beatification of someone new is generally a very happy event in itself for the Church as a community. My Mum also asked me whether I feel any sort of bond with her, which I think is a more interesting question. We’ve both had the same disability, so on this level I think there is some connection that I feel to her. Also, while personally I have very mixed feelings about both the school and my experience there, i feel grateful to her for the mere fact that she founded it, because the whole thing was extremely courageous of her, and that she devoted herself to the blind so much and on so many levels. One thing I’m extremely grateful to her for is that she adapted Braille to the Polish language. But I don’t feel much of an emotional bond with her like a lot of blind folks do. Or a very strong spiritual one. When I was at school, they’d talk a lot about her and I remember one person once suggested to me that if I struggle with homesickness and stuff like that, I could think of mother Elżbieta as my second mum or a mother figure or something, that some people have this sort of bond with her. I initially really tried and really wanted to, but somehow didn’t feel it. Then not much later I got truly sick of all that talking about it being our second home and stuff like that and I internally rebelled against it all, so there was no way I could think of her as my mum. When I was older, I read her writings and letters and several biographies and a couple memoirs involving her. She was incredibly wise and virtuous and strong-willed and in many aspects very extraordinary and fascinating, and while I didn’t see that at school because I had vastly different outlook on things and vastly different things on my mind, now I do admire her deep devotion to the Cross. Yet when I read her writings she doesn’t come across as someone whom I could truly feel close to. With all her admirable traits and all the great things she did, I think we just are too different for such a close bond to be possible. Or maybe I just have a somehow skewed perception of her despite all the stuff I read about her. And the mixed feelings I have about the school surely get in the way too, even though it doesn’t have to do with her directly. Like I said, the saint I do feel more of a connection to, and who also happens to have been blind and multiply disabled is bl. Margaret of Castello.

If we were having coffee, last, but not least, I’d share about a major purchase I recently made. I got myself an iPad, YAY! Now this is really a huge thing because not long ago I thought I wouldn’t be able to be able to use a smartphone, due to the touchscreen, and now I’m getting a second Apple device. This is because, actually, recently I had been considering a possibility of transitioning to a Mac from my Windows computer. Yeah, I’ve transitioned to a new computer over a year ago, but I’m sure Sofi would be more than keen to inherit this one from me, and also some of its parametres are well above what I need. I’ve recently got to hear a lot about how it looks in practice to use a Mac with VoiceOver (the built-in screen reader) and I was like, huh, this doesn’t sound quite as difficult as I thought. It sounds way more intuitive and non-geek-friendly than Windows. And I really have grown to like the way Apple does things ever since I’ve got my iPhone, while at the same time Windows irks me in more and more ways. Yet I’ve also heard about several blind people who have tried using Mac and it didn’t really work out too well, and because it’s not like I am incredibly tech savvy or anything, it felt risky, especially that Mac OS computers are not the cheapest in the world as everyone knows. So I was playing around with that idea for a long time until I figured that perhaps a cool golden mean would be getting an iPad, because I’ve heard of some blind users who just use an iPad with a Bluetooth keyboard as their primary device rather than a laptop or a computer, which they only use when something is just physically impossible to do on an iPad. Perhaps if I tried that, I would be able to say more decidedly in a couple of years how worth it and how risky for me getting a Mac is. And I guess in a year or two I’ll be able to apply for funding which you can get for an assistive device, and a computer counts as one. Since I don’t need anything more than a MacBook Air, perhaps the funding would even cover that if I’m lucky and counting right.

So in the end I got an iPad 8 and Apple says it should be here tomorrow and I’m really really curious and a little bit apprehensive. One thing I’m kind of afraid of not working out as well as I’d like is typing. I do a lot of writing, but while I have a Bluetooth keyboard for my iPhone as well as my Braille-Sense which works like a Braille Display and Bluetooth keyboard at once, I find writing on iPhone a pretty arduous experience, especially on the Braille-Sense which I prefer for longer writing because it’s easier and faster to review what I write. Except in the end it’s not because the cursor often flies around so it’s hard not to make mistakes, or in some apps it will randomly throw me out of the edit field after every few characters, or it will be very slow and freezy or otherwise buggy. Since iPad is essentially the same system, I’m not sure whether I can hope for much difference there. But it’s not like I am supposed to ditch the Windows computer and rely on the iPad for everything from tomorrow on. If, after a year or a few, I’ll come to the conclusion that I like the Apple ecosystem increasingly and the only thing that stops me from using iPad full-time is the typing, I might still get the Mac as I don’t think it has the same typing issues as iOS devices do.

What would you tell me if we were having coffee? 🙂

 

Question of the day.

What are you thinking about?

My answer:

Okay, so this will be a rathr rambly post, as I also want to fill you in a bit and get some stuff out.

Today in general I’ve been thinking a lot about Sofi as I’m kind of worried about her and so is Mum. You see, Sofi is very slim, and very tall, and she keeps growing, even though she’s already like 180 cm. She also has long bones, long limbs and rather weak joints and muscles. She has done several different sport disciplines, but she hasn’t developed much muscle as a result and was always super quick to get injuries and stuff from it. The last time she tried some new sport (athletics) she ended up with a really painful ankle after just a few days of training, which had to rest for two weeks. People (but especially my Mum, who, also being very tall, I think has some unfulfilled ambitions of her own regarding doing sports as a teenager) have always pushed her to do sports because she’s so tall and fit and in this day and age where kids spend ages glued to their phones it’s the best thing for a kid to do. And Sofi seemed into it herself, but since that athletics episode it looks like she’s had enough and my Mum is no longer pushing her either.

Due to all those injuries, and sometimes without any obvious injuries at all, for many years Sofi’s had all sorts of aches and pains, mostly in her knees. I think everyone here has lost track of how many times she’s had her knees checked by doctors/physios, she also had knee braces several times. But with the exception of times when she had some obvious injury that she could recall herself, everyone has been saying, that it’s just “growing pains” and/or that she needs to put on some weight. I don’t know, I way less than her and I don’t really know what it’s like having joint pain, and I’ve never had anything broken, so I’ve no idea what’s weight to do with it. She’s had several bones broken, but also had her fingers in splints or however this thing is called in English several times, and I don’t know any other person, or at least am unaware of it, who’d ever break their finger, let alone as often and as easily as Sofi. But people have always said it’s nothing abnormal because our Dad has also pretty fragile bones, he’s also similarly built, and he’s had dozens of fractures when he was younger, including once breaking his ankle simply by tripping on a doorstep. I’ve honestly always thought that her pain tolerance must be very low or something because whenever she’d play with someone more dynamically, everything would hurt her and sometimes it seemed quite out of proportion, so that sometimes my Dad made fun of her and asked her to name all the places where she’s hurting, and she’d always have a few, but then as my Mum says if nothing hurts you, you can’t be alive, right?…

Sofi has like a double room, one part of this room is just like a normal room, and then there’s a hole in the wall and you can go in there and it’s like a little cave or something, like a mini room inside of that bigger room. Sofi reallyy likes it and has always spent a lot of time there. And earlier this year she decided to move her bed in there, or rather move the bed out of her main room and put a mattress into that mini room. That mini room, however, didn’t have a window, so one had to be put in there if she was to sleep there. Sofi really liked her new, cosy bedroom and always said she likes to sleep there way more. But then summer came and then a heatwave and it turned out that the little window doesn’t really change much, and even with a fan on her bedroom was always flamin’ hot. So she slept in my room for the time being, as I have AC and blinds here that make life in heat more bearable now, but since it was so hot and clammy we definitely didn’t want to sleep together in one bed. And I certainly didn’t have the space here for Sofi’s huge matress. So she had to make herself a makeshift bed. That was a huge ceremony as she couldn’t make it soft enough while not being too hot. She woke up in the morning complaining of a very painful hip, saying that her bed was still too hard, or maybe it’s her hip that’s too hard and now got bruised. She really had a huge bruise on it and I was quite puzzled that you could get yourself something like this when sleeping on such a load of sheets and blankets, plus Misha’s lamb skin, on the floor which does have a flooring. But then we managed to discover the culprit – on the floor, under all those layers of bedding, there lay Misha’s little iron ball – like the ones in car bearings. – Sounds like Sofi’s the real life Princess on the Pea! 😀

But the next night she slept at me, she woke up with even worse hip pain, so that it hurt her even when something or someone touched it a bit more firmly. And there was no ball to blame this time round.

The bruise took long to disappear, but it finally did, yet the pain hasn’t until this day, even though it’s been a month. So a couple weeks ago Mum finally took Sofi to the doctor to refer her for an xRay or something. Sofi’s previous paediatrician has recently retired so they visited this doctor for the first time ever. And, as Mum said, that was a very good thing, because she looked at Sofi from a fresh perspective, rather than “Ah, it’s this tall girl who’s always hurting”, and in her opinion it might be something else entirely than growing or thinness that causes Sofi’s constant pain problems, along with fractures and unstoppable growth.

She apparently had a long, thorough look at Sofi and said she thinks Sofi might have something called Marfan syndrome. People with this condition are usually very tall, very thin, have looong fingers, little muscle, fragile bones, often some problems with posture, very flexible joints, are near-sighted and have various heart problems and probably a dozen other things. Everything from what I mentioned except heart problems sounds very much Sofi. And even though Sofi herself doesn’t have heart problems, my Dad has hypertrophic cardiomyopathy, and like I said he has the same kind of body shape. My siblings and i have all been tested whether we have cardiomyopathy too but so far no one of us does, including Sofi. However sometimes when Sofi’s tired or stressed she complains that her heart aches, and sometimes it seems like she can be in a fair bit of pain from it. I would think that’s also abnormal, because I’ve never experienced heart pain, but my Mum says it is normal that people can have heart pain when they’re stressed so we’ve no idea if Sofi’s within the norm or not.

The only other time I heard of Marfan syndrome before was shortly before I was supposed to be checked for that cardiomyopathy thing myself, I could have been 17 or thereabouts. I was about to go ride on my horse and my Mum was explaining to my instructor that I won’t be able to come next week at the same time because I’ll have the cardiologist appointment, and my instructor suddenly got all panicky: “Oh! Why?! What’s going on?! Do you have some heart condition that I don’t know about?” so of course we assured her that no and that I’m just getting tested because of Dad’s illness, and she was all relieved and said she was just worried because she had another girl she worked with who had some sight problems and was slim and “tall like you” and she had Marfan syndrome, and apparently generally horse riding is a no-no when you have this. Fyi, I’m not really tall, I’m only 168 cm and I actually have hypopituitarism which essentially means that I had to get growth hormone injections as a teenager to grow beyond 140 cm, and before I started taking it I was short and plump. My endocrinologist, who was short and plump herself, wanted me to grow more and more and more, “So that you’re tall like your Mum”, but thankfully my Mum put a stop to that before it was too late. But as I started taking it, suddenly everyone, especially at my school, was “Omg you’re so tall!!!” and neither me nor my family could understand why so it always made us laugh, because if I was tall, what sort of giant Olek must have been to them, when he’s over 1,90. 😀 I suppose it must have been people’s autosuggestion because well, my Mum is tall, my Dad is tall, everyone else from my family who had ever been to my school is tall, plus I suddenly got a lot slimmer on that hormone so I guess slim people look taller than they are. Now hardly anyone still says that to me but my riding instructor happens to be very short, so she always goes on and on and on about how she’d like to have long legs like mine for riding etc. I actually do have very long and thin fingers, long fingers can be useful, but mine aren’t quite as long as Sofi’s, and like her I am also a lot more physically similar to my Dad and his family rather than Mum’s, but thankfully I haven’t got his bones. One time when I was at school, one of the boarding school staff was mentioning something about Britney Spears to my roommates and me and how she can throw her legs behind her head. I never did it, and I’ve never been particularly sporty or anything, but I thought to myself that it can’t be that difficult, and I decided it would be a fun idea to try and find out if I can do it myself, so that was what I did right there, and she was quite amazed that I can do it and freaked out and urged me to stop, saying that I’ll stay like that forever lol, even though it wasn’t much of a problem for me to do it at all so I wondered why so much fuss. 😀 But apparently not everyone can do it, so I sometimes did it just out of the blue, in favourable circumstances, to see how people would react, especially if I wanted to avert their attention from something else. I’d put my legs behind my head and rock in this position for a while like I was deadly bored and this was as good a thing as any that I could do in such situation, and people would often start yelling “Aaah what’s she doing?!” 😀 But when I tried my little trick on Dad he wasn’t surprised at all and said he did that too when he was younger. But can no longer do it. Interestingly, neither can Sofi and she never could, even though she’s way better at all things fit than me, so she’s envious, even though she can do all the typical things that people with Marfan’s apparently should be able to do like clenching your fingers in a fist and sticking your thumb out the other side. For me and Olek only a little bit of our thumbs go out, but Sofi can stick out half of her thumb. When I was a child people would also often comment on how I do weird things with my fingers that they wouldn’t be able to do, but about which I didn’t even think. Yet like I said, I’ve never had the aches and pains, nor heart problems, and I have nothing wrong with my eyes as such, only optic nerves, so I guess I only have some similar features. That makes me wonder if Sofi also just has similar features, or is it seriously a full-blown illness, even if she’s never had a surgery or anything like that?

So, going back to that doctor, Sofi got a referral for the hip xRay, but also for genetic testing for this weird thing, which is going to take place in February so she still has ages to wait and in the meantime my Mum is getting really worked up about whether Sofi has this or not. Initially we thought it’s probably a false alarm because despite all these aches and pains, plus Sofi being a bit near-sighted, it’s not like she has a lot of health problems, she has nothing wrong with her heart. Mum read that in the past, where there weren’t so many surgeries that now help people with this condition to lead long and as healthy as possible lives, people with this syndrome would die at about age 30. Well, if we assume Sofi has it, then my Dad has it even more definitely, and he only needed one surgery which has dealt with the problem quite well, and he doesn’t have quite so many problems as it seems people with Marfan’s typically have. But then I guess it’s a spectrum and people may have more severe or milder symptoms, but it’s still the same condition. I’m just not sure what to think. I guess I could not think about it at all until we know, but my brain doesn’t like to not think, so I hardly have a real choice.

At the beginning, as much as Mum was quite depressed and anxious about the whole thing, Sofi seemed quite happy. Soon after Mum told me the news and we talked it through, Sofi came to me all happy go-lucky and said: “Bibiel, guess what? The doctor said I have morphine.” She couldn’t remember what that thing was called, but as soon as she said “morphine” she knew it wasn’t that, and she knows what morphine is, so we both were laughing like crazy. 😀 So I asked her what this morphine is all about, as I didn’t want to show that I already knew about it from Mum, I wanted to know how she understood it and how she felt about it. And she said that it’s something that makes you tall and thin and makes your joints and bones and muscles hurt like hers and makes your fingers real long (whereupon she proudly presented to me how her fingers actually meet the criteria and how it’s so cool), and sometimes it screws your heart up. So I asked her what she thinks about it and she said it’s actually quite cool, because she doesn’t have any heart problems, and she no longer wants to do sports anyway, and this will be a good way to respond to people who make stupid comments about how tall she is. “Yeah, it’s ’cause I have morphine”. 😀 And it’s a fun random fact to tell people about yourself. Sofi has fairly recently started her YouTube channel and has wanted to do a facts about me video so I could see how such a super weird fact would be valuable.

But her hip kept hurting, and when she had an xRay it didn’t reveal anything at all. The xRay lady was also apparently real nasty to her, pressing her hip really hard, I guess not intentionally, and when Sofi winced she asked: “Does it really hurt you so much?” No, for flip’s sake, why would you think so? I just like getting xRays y’know? I had one half a year ago but it’s so much fun, and I was kind of bored so Mum thought we’d go and have another one. That wasn’t what Sofi told her, of course, just my brain’s allergic reaction to bullshit.

But a few days after the xRay, Sofi’s hip has started to hurt even more, so that she even finds it difficult to fall and stay asleep, and even if she herself touches the hip lightly it hurts like crazy. Even the seatbelt hurts. So when it started to hurt more she once came to me and, with a lot more concern than before asked: “Bibiel, what do you think, do I have this morphine or not?” “How would I know such a thing?” “I know, but what’s your instinct?” I said that my instinct is (or was, at the time) that she doesn’t have it, because she’d have way more problems with her health, and so would Dad. It’s honestly a difficult thing to have any gut feelings about since I barely have a clue about things like that. Last night Sofi’s hip hurt particularly badly because she bumped it accidentally with her elbow, and she couldn’t fall asleep. And I asked her if she wasn’t prescribed any pain killers for it at all. Sofi said no, because there’s nothing on the xRay. Holy shit, what sort of logic is that? I don’t know, obviously I’m not a doctor, but if I were, my dr Bibiel logic would be, if a patient has a lot of pain and she can’t sleep, especially if she’s a kid, and I can’t figure out what’s causing the pain, and the xRay doesn’t show anything, I’d at least try to relieve the pain if I’m absolutely sure that nothing else can be done to actually deal with the cause of the pain. Besides, yes Sofi will have that genetic testing in February, but couldn’t they keep looking for a direct source of the pain regardless? I don’t know, ultrasounds, whatever is used in such cases? I shared my reflections with Mum today morning, and she’s going to get Sofi to have an ultrasound soon, but we both think that this should have come from the doctor. We don’t even know if ultrasound is indeed the next thing that Sofi should have, it was just the first thought that popped into my head so that’s the direction in which Mum’s going first.

But what worries Mum even more than Sofi’s hip pain is her growth. My Mum is very much into hormones, as she’s going through menopause herself and has been trying to figure it all out and help herself with her very obnoxious symptoms. She uses natural progesterone and estrogen creams, tries to eat healthily and uses other things that help with hormonal balance I don’t even know what they are, reads books about hormones in females and generally educates herself in this regard all the time. And, since she already has some experience with me when it comes to hormones and growth/puberty, she started wondering right after Sofi got this potential diagnosis, whether/how Marfan syndrome may affect hormones, since people with this thing are so tall. She found that, while unlike what she thought Marfan syndrome isn’t directly linked to hormones, apparently what endocrinologists do with girls with this syndrome when they keep growing and growing is they give them estrogen to trigger menstruation, and that apparently stops further growth. I didn’t even know there’s such a relationship between menstruation and growth and that as soon as the former starts the latter is over. The way I put it is probably very simplified and maybe even not entirely correct but that’s just the gist of it. Apparently girls with Marfan’s also tend to start their periods later than average, which would be true for Sofi, who is 14 now and still hasn’t got it. Since Sofi is 180 cm now, Mum, who is exactly the same height and not particularly loving it, really doesn’t want her to grow even more, because it’s so impractical, so she gave Sofi the estrogen cream and instructed her how she should use and dose it. I’m not sure whether it’s a good thing the way she does it, just based on her own research. I mean, she’s surely very knowledgeable by now, but her knowledge is mostly limited to how hormones work in middle-aged women and it would suck if she screwed up something with Sofi’s hormones really bad just because she no longer wants her to grow.

Mum’s getting really neurotic about it all, which I can’t really blame her for. And today she went to do her nails, and spilled out some of her worries at the beautician, who was oh so helpful. I mean, I’m sure she meant very well, but she only worked my Mum up even more. My Mum explained to her how she’s worried that Sofi still hasn’t gotten her period, and keeps growing, and that Mum doesn’t want her to become a giraffe, and is worried that she still isn’t menstruating for so long. And the beautician said that she also didn’t menstruate for very long, so her mum took her to the gynaecologist and it turned out she had polycystic ovaries, so she’d advise my Mum to go get Sofi checked out as well. Uhhh… Mum came home and spent an hour flicking through her books, trying to find stuff about polycystic ovaries, and since all her books concern mostly older women, it seems like a lot of what she’s read is quite depressing.

I highly doubt (for what gut feelings are worth) that Sofi has this particular thing. I don’t think I got my period earlier than Sofi. I’m probably not the best example since according to my endocrinologist it was not certain if I’d ever have it, but still, I guess 14 is too early an age to wail over lack of period. But since I usually pick up people’s moods super quick, I’m feeling worried too. So that’s why I’m thinking about it.

How about you? 🙂