28 September 2010

Pieces falling into place

The picture is finally emerging of what's going on ... my CT angiogram was clear, thank goodness. So CNS Vasculitis looks unlikely (although there's always a chance it could be early stages, not picked up etc etc). PHEW.

So the most likely diagnosis is neurosarcoidosis. And now that I'm reading more about it, a bunch of odd little symptoms I've had for the past 4-5 years are suddenly falling into place, which I admit I'm finding rather exciting. Stuff like :

Onycholysis (painless lifting of the fingernails from their beds)
• Loss of sense of taste and smell
• Loss of sensation in any body part (currently have a numb right arm, and the numbness is spreading to my jaw and back of my neck)
• Facial nerve involvement (I had a 6th nerve palsy five years ago, with no cause determined)
• Dry eyes
• Vision loss
• Muscle aches and pains
• Brain fog
• Nasty itchy blistering skin lesions associated with sun exposure
• Dry scaly skin

It is even often associated with fibromyalgia. Far out.

I'll be started on corticosteroids today or tomorrow. Hopefully only for 3-4 months this time No saying yet whether my vision will repair on steroids, but I'm hoping so! I think I've probably got the chronic form of the disease, given that I think I've had symptoms for at least 5 years, so it's likely to be something I'll have to be dealing with for many years, if not lifelong.

I've also informed my hip surgeon about all this, as being on steroids may have an impact on the stability of my artificial hip - he'll call my neurologist for a chat. I suspect I'll end up on calcium supplements. And I'll have regular vision checks, and MRIs.

Hope to get out of hospital by the end of the week, with any luck. Feeling pretty good, I'm just so relieved that it's probably not the fatal (if untreated) vasculitis.

27 September 2010

The Travelling Pillow

Here is my hospital boudoir ...

And here's my hospital pillow ... but wait, what's that on it ... ?

Yes, it's covered with writing! OMG! It's a travelling pillow!

I'm a big fan of travelling things - I do BookCrossing, I have a travelling lamb puppet ... and now I've stumbled on a travelling pillow - who knew that hospital pillows got around so much?!

For posterity, this is what it says - my comments in brackets :

This pillow started its life in Cooma Oct 2009
Please write my journey so they see where I've been :)

Ward 13

A Level - CDH (cooma District Hospital)

I'm back in Cooma! Just 4 now

20/5/10 TCH (The Canberra Hospital) 6B

9/6/10 Day surgery TCH

20/6/10 TCH ED (Emergency Dept) we rule

25/6/10 Theatres Calvary Belconnen (Calvary Hospital)

21/7/10 Calvary Mortuary (oh dear)

23/7/10 Calvary Mortuary (still!)

17/8/10 Calvary ED (Emergency Dept)

26/8/10 6E Private

4/9/10 ED Calvary PTO (end of the pillow)

5/9/10 Still here in Calvary ED

7/9/10 ED EMU (Emergency Dept, Emergency Medical Unit)

18/9/10 TCH 7a (this is where I am now)

Isn't that cool?!!! Since I'm in Ward 7a, probably no need to add anything, but maybe I'll add a line when I get out of here ...

I've had a CT angiogram of my poor old noggin with contrast injected on Saturday, hope to get the results tomorrow and start on medication SOON. Rather sick of waiting, waiting, waiting ....

24 September 2010

Mystery Birthday Girl Returns!

I'm baaaack ... in hospital. My vision is still getting worse (more like 30% gone) so here I am. After a marathon 24 hours in casualty (22.5 hours on a hard bed in the casualty ward), I'm back in the Stroke/Neurology Ward of Canberra Hospital.

Happily, they've decided against doing a bunch of very invasive horrible tests (brain biopsy, cerebral angiogram and bronchoalveolar lavage), which are the only ways of being 100% sure what I've got. It's most likely one of two things - both very rare (of course) drum roll please ....


The reason we're not doing further testing is that the testing may still be inconclusive, as whatever I've got is in its early stages, and is pretty horrible. And the treatment for both conditions is the same - corticosteroids.

So we're just going to start on some treatment, under supervision in hospital. If it's the vasculitis, my vision should repair well. If it's the sarcoid, full recovery of my vision isn't as assured. Fingers crossed.

I'm dealing with the usual collection of elderly women with various levels of stroke damage / dementia / deafness / difficult, disruptive and noisy behaviours in my 4-bed ward ...

Anyway, I had nearly a week at home, which included my second 23rd birthday! In the absence of other fun things to show you, I'll just show off the lovely gifts my friends and family gave me :)

Last year Hubby and Son gave me a Kenwood Chef, which is just awesome and I love. This year Hubby gave me two attachments for it, a sieve/colander (like a mouli), and a great pasta maker attachment, which works a bit like a mincer attachment. So you mix up the dough in the bowl, and then poke bits into the pasta attachment to make spaghetti and noodles! And they taste amazing. Nothing like it.

Here they are cooking! It was a surprisingly quick midweek dinner ...

Son knows my weakness (murder mysteries) ... he gave me Volume 3 of Inspector Morse (I'm a huge fan of the books, and have even met Colin Dexter!) ... completing my collection!Dotter was very thoughtful, and gave me two iTunes vouchers, so I could buy some audio books (as I can't read easily at the moment). I bought an Ian Rankin (Rebus) book and a Lindsey Davis (Falco) one.

My extravagant friend LittleNeedles sent me a bunch of books from my Amazon WishList :

Knitting Nature by Norah Gaughan (stunning knitting with maths/science/nature inspiration), The I Hate to Cook Book by Peg Bracken (not because I hate to cook, but because it takes me back to my childhood, my mum has the original edition), :59 Seconds by Richard Wiseman (the most fantastic "self-help" book ever, with every single strategy proven by research! If you only buy one book this year, buy this one!), and The Everything Rice Cooker Cookbook by Hui Tay (how to use your rice cooker for so much more than just rice!). As if this bounty wasn't enough, she put in this volume of Fred Astaire and Ginger Rogers movies!

Friend K gave me some Knittery yarn in 'Monet colours' and some girly skin care treats and delicious soap (and yes, I did taste it!).

Friend C gave me this gorgeous china tea cup, saucer and plate, to add to my collection - he'd found it in an antiques shop months ago!

Brother D and SIL D gave me this cheery fine china mug and some Turkish Delight, which did not survive to the photo shoot ;)

Friend J sent me some handmade stitch markers and a box of this glorious handspun yarn - she's a clever chicken, and very skilled spinner.

My mum and step-dad gave me this beautifully crafted tray, made by my step-dad. Very special.

Friend H gave me a PDF book of 7 Small Shawl patterns by Rosemary Hill, which are just gorgeous.

Friend I gave me a signed copy of The Outback Café Cookbook by Mark Olive (using traditional bush tucker ingredients) - she's even met him! I can't wait to give the recipes a try.

And Sister J and BIL M gave me the most stunningly cute kitchen measuring cups from Fred & Friends, and a wooden necklace from the National Museum. Both unphotographed as yet ...

A good haul, spread over a good week, and most of all a lot of love, fun, hugs and treats, which is what any good birthday should be replete with!

And thank you to the friends who have given me thoughtful and appreciated gifts while I've been in hospital - your visits and your gifts have made my visits that much easier to handle.

18 September 2010


Spring has sprung! There are flowers!

A flowering eucalyptus which I exfoliated when I went for a walk in the sunshine just now ...

My trusty daphne bush, which has survived in a pot for many years, and keeps on going. One of my favourite scents!

Snowdrop bulbs that I planted a few months ago!

And yes, I can still knit, thank goodness, just as long as it's fairly plain knitting - lace, cables, fine work, and things with decreases at the ends of rows are too hard (as I can't see how many stitches are on the left needle) ...

I started this in hospital. It's the Saorise Shawl / Skirt by Norah Gaughan (Interweave Knits, Spring 2009). Each row is now over 900 stitches, and takes around half an hour! And the increases will continue until we're up over 2,000 stitches per row! Using Bendigo Harmony (wool / cotton / lycra) in Wisteria. It's lovely!

17 September 2010

Mystery girl is home again!

I'm back home, after 11 days in the Stroke/Neurology Ward. So farewell to "bed arrest" and my noisy room mates! Miss Petal is very happy to have me home :)

I don't have a diagnosis. They just ran out of tests to do, and I ran out of patience. My vision hasn't got better - wel, I think my right eye is a bit better, but my left eye is worse. I also developed paresthesia in my right arm while I was there, which I still have. Feels slightly numb, with a light touch of pins and needles. My neurologists say this is probably from scarring (ie demyelination in my brain, with subsequent development of scar tissue). My right leg nerve reflexes were a bit slow, too. They think my vision should improve, but they don't know how long it will take, or whether I'll get all of it back.

I've got a fair list of symptoms to keep an eye out for - basically, any ability that disappears. Muscle weakness, and so on. They think that the 6th nerve palsy I had 5 years ago is probably related. I've also lost my senses of taste and smell about once a year, for a month or so, for the past 4 or 5 years. Something's not right. I'm to go straight to Casualty if anything changes suddenly. I'll have another MRI in about 6 months to check what's happening inside my head. The only way to find out more is to do a brain biopsy, which they don't intend to do (phew!).

MS has been definitively ruled out, for several reasons, which in some ways is a pity. Clearly there's demyelination happening in my brain, it shows up on my MRI scan. It would be so much easier to have a clear unequivocal diagnosis, with some clear treatment options. As it is, we know something's wrong, but there's no diagnosis and no treatment options. The other demyelinating diseases look more scary than MS.

Today I pottered around, caught up on housework and laundry - nice to be active again! I also called Vision Australia, and will be interviewed soon, so I can become a 'client'. I am also looking into getting a Vision Impaired bus pass for our local buses, so I can use concession tickets, as I'm not allowed to drive. Reading is still a major problem. I've got an appointment with the Vocational Occupational Therapist at hospital next week, hopefully they'll have some ideas! I'm also sussing out my Mac's Universal Access settings, and Safari's Reader, which could make using a read aloud function a bit easier online.

Thank you everyone for your lovely comments, emails, and visits ... you all helped me so much!

12 September 2010

Amsler grids

Amsler grids are an easy way to test eyesight - especially for problems like macular degeneration and glaucoma. You look at the central black dot with one eye at a time, and note any missing areas, bent lines etc.

This is how the Amsler grid looks for me, when I look with either eye ...

ETA : This is the test that convinced me something really was wrong (in my case, neurological vision loss caused by neuro-sarcoidosis). If you have vision loss in both eyes in the same region on the Amsler grid, go to Casualty! It is neurological in origin, something happening in your brain not your eyes, and could be from a stroke. Don't muck about.

11 September 2010

Unexpected, Part 2

So here I am. I've been in the stroke unit since Monday, and had tons of blood tests, eye tests, CT scans, ultrasounds, MRI scans and a lumbar puncture. I've definitely lost 25% of my visual field in both eyes (which is very unusual). Reading is hard. I gather it's probably optic neuritis.

I *haven't* had a stroke. But the MRI did show lesions in my brain, both in an area affecting vision, and in the middle of my brain. My neurologist thinks it could be multiple sclerosis or sarcoidosis. So here I stay until a diagnosis is confirmed and they can start me on some treatment. It's all pretty fucky.

Later on : Hubby has brought in my computer and an internet dongle thingy, so I'm ONLINE in hospital!

This image shows you what reading is like for me at the moment ... I really hope this repairs if it's caused by MS, it could repair in 4-12 weeks. I'm not allowed to drive until my field of vision is better, too.

The blank areas shift and change when I move my head and eyes, so it makes seeing fine detail (like letters) rather challenging.


i'm writing this on my phone's web browser with predictive text, so no pictures this time. The reason for this is I've been in hospital since Monday, and will still here into next week.

About a week ago I noticed trouble reading and that there were blank areas in my vision. I did an Amsler test (you'll have to google it yourself sorry!) which confirmed this. On Monday I went straight to my optometrist, who was concerned. He said my eyes looked perfectly healthy, but that vision loss where the same region is lost in both eyes generally indicates a neurological problem. He told me to go straight to casualty.