Word of the Week: Diagnosis

Back in May I wrote my this whingy post about my elbow and now 14 blood tests, various examinations and an MRI later, I have a diagnosis - Primary Sjogren's Syndrome. If you're still reading this second whingy post then you'll be thinking two things at this point:  Never heard of it, and What a weird word, how do you pronounce it? 

Henrik Sjogrens

Sjogren's (pronounced 'show grins' or 'shur grens') is an autoimmune disease that affects mainly women, (9 out of 10 sufferers are female). Named after the Swedish ophthalmologist who discovered it, it affects around 4-5% of the population making it the second most common autoimmune condition after rheumatoid arthritis. I didn't really understand the term 'autoimmune' until it was explained that it is where the body's immune system turns on itself and attacks its own tissues and organs - a kind of personal civil war! In Sjogren's the immune system targets the moisture glands, such as the tear and salivary, meaning the most obvious symptoms are dry gritty eyes and a dry parched mouth. Just as common is chronic fatigue and multiple joint pain caused by inflammation. 

I have to say that rather than being dismayed I was relieved at this diagnosis. My GP had thought that it was rheumatoid arthritis, my rheumatologist had considered lupus, and both conditions are so much more serious and debilitating. Sitting, waiting for my MRI was also an experience I am grateful for as I was able to meet and talk to the less lucky, and tremendously brave souls, who were preparing to do battle with life-threatening cancers. In comparison this condition is little more than a minor inconvenience. I worried that it was something that I had ended up with as a result of a mainly sedentary lifestyle, and an ongoing love of chocolate, but was assured that it is not and given the example of the tennis player, Venus Williams, who dropped out of the US Open in 2011 after being diagnosed with the condition just a month before. 

Venus Williams: now back on form 

There may be no cure but there is, thankfully, ways to manage Sjogren's and trying to stave off the recurrent flares typical of the disease. I have been managing my dry eyes for many years now with artificial tear gel not realising that this peculiarly-named condition was the cause and I have spent vast sums at the dentist for torturous hours of root canal (lack of saliva and a dry mouth mean inevitable decay).  I will be starting medication that I hope will eventually help me to deal with the joint pain and stiffness and the terrible tiredness that a good night's sleep never fixes. These are the symptoms that I find more difficult to deal with and the reason I have renamed the weird sounding 'Sjogrens Syndrome' to 'Old Lady Syndrome' - a more fitting description.  If I'm to have the old lady in my life as a permanent visitor then I will need to learn how to make her comfortable and stop her from moaning!

(image credit: rushmessageboard.com)

Word of the Week: School

Here in Scotland the new academic year started this week and most schools opened their doors once again for the start of the autumn term.  Living here, it's something I don't think I will ever get used to - back to school in August! Plus to add insult to injury, this isn't a bank holiday weekend for us either *makes sulky face*

Nevertheless, our two girls managed to drag themselves up at a hideously early hour, donned new uniform and squeaky new school shoes and headed out. It was quite an occasion for our youngest as she begins senior school this year.  

There's no surer way to feel well and truly ancient as when your youngest child is no longer at primary school but instead hurtling towards the teenage years and all the angst that brings! It doesn't seem very long ago that I was standing at the school gates waving her goodbye at all of 4 years old in her bright blue sweatshirt, chubby knees beneath grey skirt, heading off to reception class. It's the start of something new but also the end of a stage too. No more skipping in the playground and running about with the exuberance and unselfconciousness of early childhood.  Now it will be huddles in the corridors and in doorways as she moves through the tricky adolescent years with grunting posses of other teenagers.  I will miss that wide-eyed wonder stage, running into my arms, clutching lunchbag and latest art creation still wet with bright splodgy paint. But, though it's new, and a little bit scary, it's exciting too. As her world widens,  I look forward to seeing her branch out and learn new things knowing that this family tree of love is there to support her.

Word of (last) Week: Results

I'm rather late with this word of the week - a whole week in fact. Although most of the news in Education this week has been about A Level results, here in Scotland we received results for both National 5 exams (equivalent to GCSEs) and Highers (like A levels) back on the 5th August. That may seem terrifically early but then we broke up for summer hols at the end of June and most pupils are back to school next week (next week! Eeekk!)

It's funny that in all the talk about Scottish independence it is often forgotten that we already have, and always have had, an independent education system with a separate exam body. It was one of the main draws for me in wanting to move back to Scotland - an escape from dreaded SATs, Ofsted and league tables. The first proper external exams are not taken until S4 here (year 11) and this year was the first of the new style exams. Our eldest daughter felt very much like an exam guinea pig as her teachers struggled to get through the new curriculum and, having no past papers to go on, it was hard to know what to expect.

Though exams may differ, I'm sure that students across the globe experience the same emotions - anticipation, anxiety and fear. Every pupil knows that those 'results' can open doors of opportunity and choice, and,  just as easily, close them too.

While we were on holiday and enjoying the sunshine there was still that niggling date in the back of our minds - the dreaded Results Day! H has had the same ambitions since she was about 4 years old. Now 16, she still wants to study drama and hopefully have a career in film - lofty aspirations indeed, especially when I look at the list of drama schools she plans to apply to (my chances of her staying in Scotland where there are no tuition fees look slim! #mayhavetosellakidney)

I'm pleased to say that she did brilliantly and got the A grades she really wanted. We're all incredibly proud of her especially when you consider that as someone with dyslexia getting that A in English was an achievement indeed. So here's to you, my clever daughter, you're one step closer to living the dream! 

O Captain! My Captain...

I've been going to bed shamefully late during this summer holiday and so I happened to see the reports of Robin Williams death just minutes after they appeared online. Such a statement was hard to take in; it just wouldn't process that such a brilliant man was dead and that he'd taken his own life.

I love stand-up comedy and if ever there was a king of the impromptu, and a master of the ad-lib, surely that had to be Robin Williams.  His comic genius knew no bounds and he could free-wheel his way through a routine with no destination or prepared lines to hold manicness in check, just an uncontrolled explosion of hilarity. It was that high octane energy that shook audiences to their core with laughter.  As a headline in one of the papers read, 'He needed cocaine to keep himself calm'!

It wasn't just the ability to make you laugh that Williams will be remembered for. He inspired a whole generation of teachers in Dead Poets Society and made grown men cry in Good Will Hunting. As one critic famously put it that 'humpty dumpty grin and crinkly eyes' made for such a convincing character that it was hard to believe he was simply acting. Sincerity and understanding leached from the screen in bucket loads and left the viewer wishing to have such a teacher, such a mentor and such a counsellor as Robin Williams. Such irony then that he did not feel able to reach out to someone for support himself. 

His death made me ponder as to why so often creative genius seems to come with the parasitic twin of mental anguish? It's hard to imagine how far down the tunnel of despair he must have travelled that he could see no way out. He is, perhaps, the best evidence of depression as an invisible illness - 'the smiling disease' as it's sometimes referred to. A skilled and consummate actor, he hid his anguish from the world. Perhaps that extraordinary act of humour was not as effortless as it appeared but instead a carefully crafted mask, honed to allow him to cope with an inescapable and all consuming sadness. 

I hope that if nothing else his death and the inevitable publicity may prompt more recognition and more acceptance of depression and anxiety and persuade others to speak up and ask for help. 

Word of the Week: Haar

A haar (pronounced like far ) is a useful little Scots word for the peculiar sea mist that comes to visit every so often on the east coast. This week it has made quite a few unwelcome appearances. While the rest of the country bathes in brilliant sunshine the haar will suddenly roll in across the North Sea and envelop the land around the coast in an eerie hazy blanket. 

Looking down at the haar rolling in

The word itself, as I understand it, derives from a German and Dutch term originally meaning a cold easterly wind but in this part of the world it specifically refers to the fog that rises off the sea. The 'cold' reference is appropriate because the haar is a most unseasonal guest. Its clutches are damp and icy and it's liable to cause those who get caught in its wintery grasp to scuttle home to find blankets and turn on the central heating, forgetting that we're in the midst of summer!

You never know when the haar will appear or how long it will stay. This week it arrived quite suddenly and ruined a bright sunny morning. It burned off by midday but then later crept slowly around the edges of the garden, extinguishing the afternoon's warmth with its chilly breath. I can understand how some locals are superstitious about the haar as it has an almost supernatural quality in the way it shifts and shrouds everything in grey.  If it was a character then I imagine the haar as a gloomy figure, perhaps like the Groke in the Moomin books.

The Groke (image credit: kindertrauma.com)

Driving along the top of the coast road yesterday I came upon the most spectacular haar which quite literally rose up around the car obscuring all road markings. The sun was desperately trying to get through but the murky curtain was determined to keep it hidden. Once high enough and out of the mist, I pulled the car over and tried to capture the spectacular sight with my phone's camera. Normally, this is a good viewpoint; you can see right across the bay and out towards Dunbar and the Torness power station and on a clear day beyond to North Berwick Law and Bass Rock. Yesterday, however, the haar had completely covered the sea and the coastline with billowing waves of cloud. It looked a little scary like some science fiction movie but also rather magical and I found myself mesmerised. 

The usual coastline view

Yesterday's view: you can just see the cement works chimney peeking out

Silent Sunday

Word of the Week

So why have I chosen the name of a random body part for my word of the week? Well, basically because for the last few months I have come to hate my elbow and all it might represent! 

In fact, elbow is a fairly stupid word to begin with - 'el' part from old English for length of forearm and 'bow' from West Germanic origins meaning bend or arch. That seems sensible, right, but go back further and other older translations show 'el' and 'bow' as being the same thing so elbow in this sense means 'bend bend' - ridiculous! And ridiculous it has been trying to do anything involving my right elbow at the moment - it doesn't bend well even once let alone 'bend bend'. 

I've been plagued with what I've assumed is 'tennis elbow' for months. It seems an unlikely ailment for someone who never plays tennis but it's a lot easier to say than its proper medical term 'lateral epicondylitis'. I found that I couldn't lift a full kettle or brush my hair with my right arm (there are those who would say that my hair doesn't look any different unbrushed anyway), I couldn't turn a door handle or open a jar. These were all minor inconveniences as I could generally use my left arm instead. But then, I discovered that I couldn't fill the car up with petrol and when I tried to do so with my left hand, I dribbled petrol on the ground in what the garage called 'a spillage' and caused the attendant much moaning and muttering. I  probably would have continued to put up with it but the aches and pains seemed to migrate and my other elbow came out in sympathy for a while. Then a few days later my wrist became painful and then the joint at the bottom of my thumb. It was like a peculiar bodily game of 'pass the pain parcel'. 

Fed up, I took myself off to the doctor. She's quite a character my doctor. A fervent energetic lady who likes to sit in her doctor's swivel chair with her legs curled up beneath her like a cat, her shoes discarded beneath her untidy desk. In a voice much like Victoria Wood's she told me that I was right to come in and she wanted to do some 'fancy' blood tests. Blood tests? For a sore elbow? Ok, I thought, whatever,  and smiled indulgently at her.

The phlebotomist looked thoroughly delighted to see me. There were at least 8 phials awaiting my blood - more than enough to keep a vampire going for at least a month. She told me in hushed tones that these 'fancy' tests were expensive and so I did not complain as she repeatedly stabbed me, searching in vain, well, for a vein!

It turns out that I am something called 'seropositive' for rheumatoid factor and antibodies. Despite believing myself to be the very best 'Google doctor' I still don't really understand the rather complicated information about rheumatoid arthritis but I do understand that this isn't a confirmed diagnosis as apparently it is possible to have a positive result and not have it. Not so 'fancy' a test to be really useful then! So I will have to be patient and wait to see a rheumatologist for his opinion. I am thankful that my symptoms at this point are relatively mild and manageable and I'm still hopeful that rheumatology will laugh at such a suggestion and dismiss the idea altogether. I'm still working on my relationship with my elbow. 

I'm joining in with The Reading Residence and The Word of the Week Linky.